Her Eyes, That's Where Hope Lies

Amazing Photo

2012-01-23T11:49:00.001-05:00

I took this photo to try and get a better look at how the ulcer was healing and couldn't believe what I saw. Using the flash on my iPhone camera, you can see the beautiful red reflex...but look closely. You can also see not only the tube from the glaucoma valve, but the lens implant that replaced the cataract she had removed a couple years ago. The roughness of her cornea is harder to see but it shows the scarred area very well. I pray every day for healing, fading of the scar and continued clarity of her corneas.

It Was Only A Matter Of Time...

2012-01-05T19:49:00.000-05:00

If there was one word to describe Peters Anomaly, it would be EVIL. If there were two words to describe how I feel right now, it would be Helpless and Devastated.

If I had one question to ask God...it would be this: With everything Emily has been through, WHY does she still need to suffer?

To be honest, God cannot give me a reason worthy enough of acceptance.

The last few days Emily's left eye has not looked very good. It has become bloodshot, swollen and her cornea looks as if it's "deteriorating" for lack of a better word. I knew these signs, I knew in my gut what they meant. And when I went back to a blog post I wrote back in January of 2010...

http://her-eyes-blueskys.blogspot.com/2010/01/scratches-on-both-corneas-and-infection.html

...it was confirmation to me that I was right.

Corneal Ulcer: an open sore, or erosion of the cornea, most likely caused by infection.

Last night I placed a call to Dr. Zaidman who was in surgery all day. His secretary got a message through to him about Emily and she called me back to tell me I need to have her seen by our local Ophthalmologist today because he would be in surgery again all day. I called Dr. Morgan and left a message on his emergency line. When he called me back he said he would call in a new antibiotic eye drop to use every hour while she was awake until he could see her.

It took me 2 hours and going to 2 different pharmacies to get her new drops and she was asleep by the time I got home. I snuck in her room and gave her one drop. I could not get in to see her doctor until 4pm the next day, so I made a judgement call to send her to school...only to get a call 20 minutes later from the school nurse who said she was in her office crying about her eye hurting. I immediately picked her up and drove right over to the doctors office. This could not wait until 4pm.

When I got there I told the nurse not to even bother dilating her eye....she doesn't have a pupil in the left eye, so it would be pointless for her to do it and make us wait 20 extra minutes. Why don't these people know she is not the average eye patient by now??? The other woman in the office was badgering me for the co-pay...well I was so distraught over the devastation this new eye problem could do to Emily's vision, that I left without my purse so I had no way to pay it. She insisted I call my husband and get a credit card number because they needed the co-pay TODAY. Ok lady whatever. Your stupid $50 is not my top priority, sorry you can't see whats important right now.

When Dr. Morgan looked at her, his reaction said it all. It was bad. Corneal Ulcers are never good, but
big ones are worse than small ones. This one is big. It encompasses most of the white scarred area on her left cornea, and in fact it may have enlarged that scarred area.

He gave her some antibiotic drops and called Dr. Zaidman to consult with him about how to move forward with treatment. While sitting out in the waiting room, Emily moaned in pain and clung to me while begging me to take her home. We needed to wait to hear back from Dr. Z before we could leave and Dr. Morgan wanted to give her some more drops while we waited. I hugged her tight...and not caring in the least about the other 5 people in the waiting room...I cried. I've never been one to cry in public, or in front of Emily, feeling the need to be strong. Show my daughter that although she may be feeling vulnerable, sad and in pain...I am her rock...I will be strong for her. But in that moment I couldn't control my emotions. My fear and sadness for her was too much to hold in. Why does she have to endure such pain? She has been doing so well, pressures have been good, corneas clear (except for the scarred area)...so WHY???

She. Does. NOT. Deserve. To. Go. Through. This.

Zaidman finally called back, with instructions to give eye drops every hour until he can see her tomorrow. Dr. Morgan suggests to use all 3 antibiotics and just bombard her with meds since this needs to be treated "aggressively". If that doesn't express the seriousness of this, nothing does.

I went to the front desk to see if there were tissues and the nurse felt terrible for us. Moments later, the secretary who was so hell bent on getting my co-pay from me, stood up and announced that I didn't need to worry about the co-pay...just wait for the bill to come in the mail and send in the payment when I got a chance. Gee...NOW are you seeing that sometimes $$ isn't what makes the world go around? My 4 year old daughter may lose her vision because of an infection that is ERODING her cornea, and all you care about is my freakin $50???? Thats right...you'll get my co-pay when I'm good and ready bitch.

"Around the clock hourly antibiotic eye drops"...."need to treat this aggressively"..."Mommy my eye hurts, I just want to go home"...Those are the words written on the pieces of my broken heart today.
In the matter of days, my happy-go lucky, always smiling little girl who's outlook on life is that the world is full of rainbows and butterflies, was reduced to tears for the first time in her entire 4+ years because of her eye disease. Not once during her 19 surgeries or countless complications that have developed from her condition, has she cried because her eyes hurt. Maybe as a baby, she may have cried because she was uncomfortable, or because she was waking up from anesthesia and didn't understand what had just happened to her. But she has never uttered the words "my eye hurts". The sadness and pain in her voice today broke my heart, and once again I was helpless. I can't fix her. I can't shield her from harm or hurt. And as a mother, thats my job.

When things are out of my control, they are in God's hands. And while I will never lose Hope for her...I am starting to lose faith in myself and in God. How can I/He allow her to continue to suffer? Which one of us is dropping the ball? Is He too busy answering prayers from those "praying" for things in life that don't really matter? Like the Kim Kardashians of the world who probably pray for TMZ to see them living it up at the latest night club wearing designer jewelry, clothing, shoes and accessories so that they can pay for their $20 million wedding for a marriage that only lasted 72 days? I heard somewhere that she had her "rear" insured because its part of her famous image. Well I have a pretty plump ass too, where do sign up to cash in on my "assets" so I can ensure Emily has the best medical care money can buy?

....Emily has an appointment with Dr. Zaidman tomorrow morning at 10:30...only 16 more hourly eye drops to go...

The saving grace is that every time my hourly alarm goes off, I call Emily over to get drops and she comes running without hesitation. You gotta love this girl's attitude.

Still on the Yellow Brick Road...

2011-10-24T11:20:00.000-04:00

Tomorrow, October 25th 2011, at 10:13 am....My baby girl will be 4 years old. While my heart is filled with an infanite amount of love and pride....I will forever be scarred from the pain I felt on that chilly October day in 2007, and it has nothing to do with childbirth.

Sara Evans, "I could not ask for more" was playing on the doctors OR playlist...I was numb from the waist down, all I could feel was tugging and alot of pressure as I gave birth via C-section to a beautiful baby girl, weighing in at 7 lbs 15 oz. As I stared into the mirror above my head, my husband saying "We did it baby" rang in my ears but didn't register in my mind until someone said "its a girl!". I couldn't believe it...I didn't know how much I wanted a little girl until those words were spoken. And in that very instant my family was complete. In that moment, I had found all I'd waited for...I didn't need to ask for more.

But the irony in the song playing that day had not been realized yet...

"These are the moments
I know heaven must exist
These are the moments
I know all I need is this
I've found all I've waited for
And I could not ask for more"

Nothing would prepare me for what happened only seconds later...
My daughter, wrapped so snugly in a hospital blanket, was handed to my husband and brought over to me to meet for the first time. I lay there, physically paralyzed in the delivery room...but my heart was beating out of my chest, I tried to cry but my lungs didn't feel like they were working, it was hard for me to breath deeply. She was beautiful...and my heart was overflowing with love and joy, yet the moment she opened her eyes it shattered all over the operating room floor. God had given us this amazing gift, our daughter...the baby we had dreamed about for 9 months. That should have been the happy ending...but instead it was the beginning of a never ending nightmare. Our precious baby girl, just seconds old, was already being challenged to a life of uncertainty and hardship....she was blind.

As the shards of my shattered heart were still settling on the floor, it was business as usual for the doctors and nurses. They went to work putting the rest of my body back together, while they unknowingly had turned me into the Tin Man from the wizard of OZ...(there is irony in that statement as well). I was about to become a poorly oiled machine, without a heart. Or maybe I was the Lion....where my courage would be tested and the faith I had in myself would be questioned. We were about to begin our journey down the yellow brick road to find the Wizard....the one and only person who could open the door for us and change my daughters world of black and white into a world of beautiful colors. (insert scene of Dorothy entering the land of Oz here).

Dr. Zaidman is our Wizard...he is the man behind the curtain.

I DID need to ask for more...I needed to ask God to give us a miracle...Give Emily her ruby red slippers and allow her to see. Forego giving the scarecrow his brain, and give Emily new eyes instead.

4 years later, we found Oz and our wizard...but we still are and will always be on the Yellow Brick Road, waiting for the ugly flying monkeys (Cornea rejection and Glaucoma) to swoop down and take back what Emily has fought so hard for.

Holding My Breath

2011-10-24T10:34:00.000-04:00

Its' been 7 months since I posted last, and I feel like I've been holding my breath for that long. Emily's surgery to remove the scarring on her left eye was sucessful, but the healing process has not gone as expected. Dr. Zaidman removed about 70% of the scar (calcium) and had to leave the remainder as to not do further damage to her cornea. Her "band aid" contact fell out within 3 days of the surgery, and since then we've relied on Lacri-lube, a strong ointment commonly used for dry eye, as a protectant and to aid in the healing. We still use the ointment at bedtime, and her eye still is not healed. Our doctor was concerned up until about 2 months ago, but at that time said that the healing had been progressing because endothealials had begun being replaced.

When is this going to get better?

When am I going to be able to breathe easier?

I feel like I'm turning blue from lack of oxygen....

Slow Healing

2011-05-24T10:16:00.000-04:00

May 23, 2011

Its been two and a half months since Emily's surgery to remove the calcium buildup on her left eye and it is still not completely healed. It took all of 3 days for the "bandaid" contact lens to pop out and that meant the risk of infection increased and new medicine needed to be used. At first we tried Tobrex, an antibiotic ointment, but within a week it didn't appear to help heal her eye much and she started showing signs of dry eye again, which is what caused the scar in the first place (after she scratched her eye in January of 2010). Here we are 16 months later and still dealing with the same scenario...frustrating does not even begin to explain it.

So Dr. Zaidman switched her off of the Tobrex and asked us to use an over the counter ointment called Lacri-Lube. It's made by Refresh and contains 40% more mineral oil than other dry eye ointments. Its the lubrication and moistness of her eye that allows it to heal so the additional mineral oil content makes all the difference.

Why can't this healing process just work faster for her??? It's breaking my heart.

Posting from the hospital...

2011-03-02T16:41:00.001-05:00

I am attempting to write this post from the recovery room at the hospital. I think I have a WiFi connection.

Pillows of Hope has been a success!!! Today we brought 70 pillow pets to the Childrens hospital and the response was wonderful! 50 went upstairs to the kids who have been admitted and staying here while they fight their illnesses and recover from surgeries. The other 20 we brought with us into the surgical unit and passed a few of them out to kids who were having surgery today. Emily gave out the first one, a puppy, to a 4 week old little boy who was having hernia surgery. While he might not be old enough to fully appreciate what we were doing, his mom and dad were comforted buy our gift and our experience with Emily's previous surgeries. It was so nice to be able to help someone who had never experienced what we have come to feel is our normal...a day in the surgical wing with your child.

Emily went into surgery today at about 2:30, Jason went in with her to the OR. She is old enough now to understand what being here at the hospital means and when she was brought into the OR she covered her mouth...she knew the anesthesia mask was coming. "I don't want anything on my mouth" she said. I'm glad Jason was there, that would have broken my heart. This was Surgery #19 for our sweet little girl. She's a pro at this, but that doesn't mean its fun or not scary.

While she was in surgery we gave another pillow pet to a little boy and his face lit up like a christmas tree! His mom was in tears and I tried to comfort her telling her a little about Emily. This was her sons first surgery and she was scared. I'm not sure what he was here for, but I hope I was able to give him and his parents a little comfort and Hope that everything was going to be ok.

Emmy is now in recovery sleeping off the anesthesia, lying on daddy's lap. Dr. Zaidman said it was difficult but he was able to remove about 70% of the calcium scar. I haven't been able to see what her eye looks like yet,but she is wearing a "bandaid contact lens" while it heals. In other good news, her corneas look great and her eye pressure is normal! We are hoping for a complication free recovery which would mean the calcium doesn't come back and this procedure doesn't trigger any problems with her cornea.

Thank you to everyone who has kept Emily in their thoughts today and who have so generously helped us make Pillows of Hope a success!

More updates and pictures will be posted soon!

Update on Pillows of Hope

2011-02-24T10:32:00.000-05:00

I am so overwhelmed by the response we've received about Pillows of Hope! I was brought to tears when I started receiving coupons, pillows and donations in the mail. I never thought I'd have such a great response! So far we have received more than 20 pillows (only 15 are in the picture below) and with the coupons I've gotten, we plan on buying a whole lot more!

Thank you to everyone who has been so kind and generous! The kids at the hospital are going to LOVE these! We have 1 WEEK LEFT before Emily's surgery, so I will be using all those great coupons to purchase as many as we can very soon! If you would like to donate a pillow, there is still time! And even if you can't get it to me before March 2nd, its ok. Emily will be going back to the hospital often, so we can always bring your pillow at another time. What's most important is that these adorable pillows bring a smile and hope to some very sick children. Please continue to help us!

Thank you again!

Renewed Inspiration - Pillows of Hope

2011-02-06T12:14:00.002-05:00

Often we get so wrapped up in our daily lives that it takes something simple yet profound to remind us of things that really matter in life. That is exactly what happened to me this morning.

Just last week, we were blessed by the kindness and generosity of The Knights of Columbus in Kinnelon, the town Jason and I grew up in. For the second time in a year they hosted a pancake breakfast fundraiser for Emily. It took us by surprise because we had no idea they were planning it until a week before hand when a sign was posted in front of the town hall with the information. The amount of love and support for Emily from friends, family and strangers alike has been extremely heartwarming and we are once again overwhelmed by it all.

For a very long time, I have been trying to find a way to "give back" and "pay it forward" but just haven't found something that would truly feel rewarding to us...until now.

While browsing through my facebook page this morning I stumbled upon a story that was posted by a friend in Indiana about a 7 year old boy with stage 4 Alveolar Rhabdomyosarcoma, a very aggressive cancer. He was diagnosed on Oct. 13th 2010. And at the beginning of his treatment, Jake faced 54 weeks of chemo, radiation and surgery. His prognosis is not good but he is a very strong, brave and selfless little boy. Inspired by the dinosaur pillow pet he was given as a gift, Jake is trying to collect 1,000 pillow pets for all of the sick children at his hospital. Why pillow pets? In the words of his mom "Because they don’t feel like playing games or doing the artwork all the time since the chemo makes them very sick. The doctors are telling the kids scary things every day, and there are lots of shots to endure.” Jake knows what sick children really need...a soft friend to help comfort them when they are scared and not feeling well.

You can read about Jake's journey below:

http://thenorthviewblog.us/2011/02/05/jake-shows-compassion-through-pilllow-pets/

http://www.caringbridge.org/visit/jacobmcconahay.

I cried when I read about his story and immediately I knew what I needed to do.

When Emily was just 5 weeks old, we brought her to the Maria Fareri Childrens Hospital for the first time. The building looked so comforting and we had a sense of peace as we walked from the parking lot, hoping that our answers and a good prognosis for Emily's eyesight were waiting for us inside. But as we approached the entrance, a young girl with a bandanna wrapped around her head was being wheeled out to her car in a wheelchair. She was weak and we watched as her father picked her up and put her in the car. She undoubtedly had cancer of some kind and at that moment my heart sank and tears welled up in my eyes.

Inspired by Jake's story and that sweet little girl in the wheelchair, we have decided to also start a collection of pillow pets to donate to the sick children at the Maria Fareri Childrens Hospital. Emily has endured countless surgeries at this hospital and is scheduled for another one on March 2nd. We are hoping that we can collect as many pillow pets as we can by then so that we can bring them with us that day. And she will be bringing along her own dolphin pillow pet she also received as a gift!

We know that Bed Bath and Beyond sell these adorable Pillow Pets and are hoping to collect as many of their 20% off coupons as we can from friends and family to use to purchase them with. If you have any coupons you would like to pass on to us we would appreciate it so much! Or if you would like to purchase a pillow pet to donate yourself that would be just as wonderful!

Bed Bath and Beyond Coupons or Pillow Pet donations can be sent to us at the following address:

Pillows of Hope

c/o Emily Bott
13 Mott Drive
Vernon, NJ 07462

We are so excited about this and cannot wait to finally be able to pass on some of the kindness and happiness that has been given to us. Our goal is to make each child smile, give them some HOPE to hold on to and a little extra strength to fight against their illness.

Please help us pay it forward!

Emily, you are our inspiration of HOPE!

Invisible Confetti

2010-09-29T23:11:00.001-04:00

I cannot express the relief I feel at this moment...

Each time I sit in the waiting room at a doctors office (for hours on end)...my anxiety level gets higher and higher. Its like waiting for a train that is perpetually delayed. You know you have somewhere to go, something important to do, but you can't get there if the train never comes. My destination is always the same and over the past (almost) 3 years, I have rarely seen it on the horizon. In fact its never guaranteed to even be a scheduled stop along the route.

Where am I always looking to go??? The answer is simple, the town of "Good News" in the state of New York. Its a nice town just on the outskirts of the city of Cornea and Glaucoma.

It has been 7 weeks since Emily was seen last by Dr. Kane and Dr. Zaidman, and I was growing increasingly more nervous about her eye pressure and overall health of her eyes. It had never been longer than 4 weeks in between visits and I began obsessing even more about what her eyes looked like. If something didn't quite seem right, I started to panic. There has been some strange redness under her left eye, which may have always been there but now I am looking more closely at it. I've noticed that eye drifting upwards a little when she is trying to focus on something and sometimes it seems like she isn't able to control it and has to close her eye to bring it back to center. We have been so diligent about the eye drops and ointments, and we're doing everything we are supposed to do. But I always second guess if its enough.

Last week I sat with bated breath as Dr. Kane studied her eyes over and over again. She was such a big girl this time, insisting that she sit in the chair all by herself. She squirmed and wiggled, but overall she did good. It was the first time I'd really been able to see her being examined that way since I'm usually holding her on my lap. It was kind of awe inspiring to see her sitting there, after everything she's been through, helping her doctor hold the button on the light he uses to see into her eyes. After a rather lengthy exam, he announced that she looks really good! Her pressures are 14 (right) and 18 (left), which is without the Xalatan (Glaucoma meds) for 2 days. This meant he was taking her off of it completely! ONE LESS drop each day!!! It might not seem like much, but when she has been on so many different drops and we are now removing one from the list instead of adding one, its a HUGE deal. And a sign that the valve implant was still doing its job, and well.

He once again checked her for glasses but couldn't pin point her exact prescription, so we wait. If he's not pushing for them, then I trust that he doesn't feel its crucial for her to have them right now. There are a variety of reasons why he is having difficulty, including the corneas themselves and the lens implant. She was doing good and we left there with one less medication on the list and an appointment in TWO months! I have arrived at "Good News"....finally.

But this was only one half of my round trip ticket. The next stop was Dr. Zaidman's office a few days later. Here we go again....

While waiting for my connecting train to arrive, I wasn't as anxious because I had already had some positive news under my belt. I went in there with just a hint of a smile on my face, and maybe a little less weight on my shoulders. I knew he would be pleased with the pressure, it was just the matter of the health and clarity of the corneas that were the remaining issues. Once again, little miss Emmy wanted to be a big girl so she sat in the chair all by herself and willingly put her head in the big machine that allows her doctor to more precisely see the cornea and inner workings of her eyes. I was so proud of her! "Everything looks perfect!"

BING! For the moment the nagging and annoying voice of doubt and worry is quiet. It's still there, just not saying much. The remaining weight has been lifted off my shoulders and I feel like I can breathe a little better now. Its amazing what our minds can do to our bodies. We physically feel the effects of our own thoughts and emotions.

Dr. Z also is decreasing the Durezol (steroid drop) from 3 times a day in the Right eye, to 2 times a day...which is a good sign. Now we are at a total of TWO LESS Drops per day! Again, on the outside looking in you might think "so what".....When at one point in time Emmy was getting over 60 eye drops a day...each time you lessen it, its like winning the Super Bowl...invisible confetti floats down around me in the doctors office and there is a ticker tape parade for her on our way down the hospital corridor and out to the parking lot!

I left there with a smile in my heart and again an appointment in TWO months! 6 months ago Emmy needed to be seen twice a week. "I'm gonna miss you guys" Dr. Z said as we headed out of the exam room.

Back on the train headed home...very happy to have been to "Good News" twice in one week. I hope to visit there again at the end of November.

In the meantime, I hope the hospital staff doesn't mind cleaning up all the confetti...

Butterflies

2010-09-19T09:49:00.008-04:00

The symbolism of the butterfly is most commonly centered upon its unique transformation. In the beginning, its existence starts out as a crawling caterpillar. It then wraps itself in darkness during the dormant and captive chrysalis phase. And finally, when the transformation is complete, it emerges and is reborn into a beautiful, winged creature who can now spread its wings and fly. In my opinion, that is one of life's most impressive forms of evolution. The amazing metamorphosis of the butterfly is a powerful symbol of change and a reminder of the fragility of life.

"Because of the butterfly's short life span, many ancient peoples saw it as emblematic of the impermanent. It's physical beauty and its fluttering from flower to flower seeking nectar have made it synonymous with the more unstable and superficial aspects of the human soul."

"Vision is a complicated process that requires numerous components of the human eye and brain to work together. The initial step of this fascinating and powerful sense is carried out in the retina of the eye. Specifically, the photoreceptor neurons (called photoreceptors) in the retina collect the light and send signals to a network of neurons that then generate electrical impulses that go to the brain. The brain then processes those impulses and gives information about what we are seeing. Light that reflects off of objects around us is imaged onto the retina by the lens. The retina, which consists of three layers of neurons (photoreceptor, bipolar and ganglion) is responsible for detecting the light from these images and then causing impulses to be sent to the brain along the optic nerve. The brain decodes these images into information that we know as vision."

- Excerpt taken from: "How We See: The First Steps of Human Vision"

When Emily was born, she was blind. Her brain had the ability to gain vision, but but the physical barrier of her clouded corneas prevented any light or images from being sent to the retina.

Like the evolution of a butterfly, Emily underwent her own unique transformation. She began her life just as the caterpillar does...crawling along, full of potential and the inner strength needed to realize that potential. She was living in a world of darkness for so long and endured countless surgeries, her time of captivity and change. Now, she has finally emerged with her eyes wide open, ready to see our world...her beautiful wings, ready to take her wherever she wants to go.

Just as the butterfly was once believed to be a symbol of impermanence, we are reminded everyday that the vision she has gained isn't permanent either. She has already had two transplants in both eyes, due to rejection and re-clouding of the corneas. And we are fighting to prevent the glaucoma from stealing her vision everyday. We will continue the struggle to maintain and improve her vision for the rest of her life. And all we have to hold on to is "Hope".

A couple weeks ago, I decided to forever mark the journey Emily has been through by getting a tattoo in her honor. Everyone gets tattoo's for different reasons, the loss of a loved one, the birth of a child, an emotionally difficult time in their life - or they just like the art. This tattoo is very personal and holds an unimaginable amount of emotion in it. The pain of actually getting the tattoo is so minimal compared to the physical pain Emily has been through and the emotional pain I have endured as her mother. But we are hoping the worst is behind us and from here on out we can smile and look on with amazement with how far Emily has come in her short and precious lifetime.

Fly...spread your wings Emily, and fly! Fly wherever the wind will take you, and know that wherever you land, Mommy and Daddy will always be by your side.

Revive Hope

2010-08-31T10:32:00.003-04:00

I recently discovered an amazing blog that chronicles the lives of Organ/Tissue Donors and Recipients. Please check it out and help spread the word about how important it is to "Live Life and then Give Life"

http://revivehope.typepad.com/

My Mantra...

2010-08-31T09:49:00.004-04:00

Cautiously Using The Word "Stable"

2010-08-30T23:47:00.002-04:00

For almost 3 years we have been on this insane roller coaster, never knowing if we would ever get a chance to slow down and enjoy watching our daughter be a little girl. Would her childhood be dominated by long car rides, doctors waiting rooms and hospital visits? Or would she get a chance to just be a "normal" child. To be completely honest, in the days and weeks after her birth, I envisioned Emily as a blind child who struggled to live with her disability...Wow was I wrong!

Our little girl is now almost 3 years old and she can do just about anything any normal sighted child can do. She has some limitations, and hesitates when she isn't sure about something, but 95% of the time she is a normal child. She CAN kick a ball around in the yard, play in the sandbox, ride a scooter, jump into a swimming pool, chase seagulls on the beach, swing on a swing, play miniature golf, ride a carousel, color with crayons and chalk (and know the colors she is using) climb up and down steps without help, play with dolls, watch TV, look at books and name the pictures she sees, tell the difference between a panda bear and a brown bear...the list goes on and on. She can do ALL of those things!

She loves watching fish swim around in a fish tank, building with LEGO's and giving our kitty cat hugs. She knows the difference between orange and pink...blue and purple...red and yellow. EMILY CAN SEE! ! ! She is NOT blind anymore! The quality of her vision may not be "perfect" but neither is mine. I wear contacts, my husband does too - who knows...she may see better than either one of us does without glasses or contacts. She is simply amazing!

At our last appointments with all her doctors, they were all extremely happy with how she is doing. Her corneas are very clear (with the exception of the scarring in the center of her left eye). Dr. Zaidman reduced the Durezol (steroid drops) to 3 times a day in the Right eye and once a day in the left. (It had previously been 8 times per day in each eye at one point). She is still on 3 different Glaucoma meds, but her pressure has been within a good range consistently for the past few months and Dr. Kane is considering eliminating one of them. Dr. Morgan was so impressed with her vision at her visit a couple weeks ago. She is still farsighted, but her vision at a close range doesn't seem to be interfering with her daily life, so the need for glasses is questionable. They could help make her see things that are close less blurry, but it may not be significant at this point. We are holding off for a little while and will wait to see how things go over the next few months. No glasses and less eye drops! THAT is a wonderful thing!

Because of the decrease in meds and good range for her eye pressure, I've cautiously began to describe her as "Stable" when someone asks me how she is doing. Anything is possible, so I can't really subscribe to the idea that for the long term she is ok, but for the past few months and at this very moment...she is as stable as she can possibly be. That roller coaster has slowed down, our doctors visits have been decreased from once a week (right after the cornea transplants) to every 7-8 weeks. And when she goes back at the end of September, the appointments could be spread out even longer.

She is doing well, and I can't ask for more than that. Her eye drop schedule is just routine now...its not as consuming as it once was. Its just part of our daily life. She gets 7 different meds at various times of day, but there is flexibility now. I am not looking at the clock and saying "oh my god, I didn't give her drops at 9:47 like I needed to". Giving them at 10 or 11:00 is fine. Two years ago I never envisioned I would feel that way.

Living By Hope has worked for us so far...

When Do You Stop Looking Back?

2010-04-27T22:14:00.002-04:00

In a previous post I mentioned that I had recently found a photo of Emily when she was born and all the pain and emotions came flooding back to me. It was hard to think back and almost relive those moments...although the chain of events that followed Emilys birth can't be changed, when is it ok to stop looking back on them with sadness? When will I be able to appreciate what we have been through and embrace how far Emily has come without feeling sad that she had to go through it in the first place? I sometimes find myself still feeling the envy of parents who welcomed a perfectly healthy baby into this world, wondering how different my life would be without Emily's disability weighing on my shoulders everyday. How do I stop looking at that beautiful baby in the supermarket who has the most clear and bright blue eyes and wishing that Emily looked like that? I don't want to go through life wishing it was different. I want to enjoy the life that God has given us and be thankful for the medical miracles that have given her the ability to see.

How do you let go of feelings that are so deeply rooted in your heart? When can you stop looking back on the events of your life and wish something were different? If those events had never happened, your life would not be what it is today...is that what you really want? Is that what I want? Do I wish that Emmy was born with perfectly healthy eyes? Of course I do, but she wasn't and I can't change that. Again....how do I stop looking at that baby in the store and feel the familiar pang of jealously? Why was my daughter born with this condition and that baby wasn't? Ask anyone who has ever been dealt a shitty hand in life and they will tell you the same thing...everyone wishes the shitty hand was dealt to someone else.

I am feeling kind of down and out lately. Nothing seems to make sense and when I think I've figured it all out, someone or something blatantly tells me I'm wrong. No one has life figured out, its a mystery to all of us. Just when I feel like things are going well or have reached that "stable" status...someone flips a coin and turns things upside down. Why is it that when you have a good thing going for you, it can't just continue to be good? Its never good for long enough, you're happy for a day or two, then BAM! Someone rips your heart out of your chest without any warning or explanation. Can we at least get an expiration date on our happiness so we can prepare for when its going to go sour? "Good things always come to an end" - I hate that phrase. It's so depressing. Who wants to live their life thinking that every good thing they've got going for them is at some point just going to fall apart? If that were the case the entire world should be on anti depressants.

Barely Holding On

2010-04-24T22:41:00.002-04:00

There are good days and bad days....on the bad days I feel like I am just barely holding on...

"I'm falling apart
I'm barely breathing
With a broken heart
That's still beating

In the pain
There is healing
In your name
I find meaning

So I'm holding on
I'm holding on
I'm holding on
I'm barely holding on to you"

~Lifehouse

Possibilities

2010-04-24T20:17:00.004-04:00

This post is totally off topic....sort of.

It seems cliche to use the phrase "when one door closes, another one opens", but its true. In the last year I have been inspired to do something I love and fill a void in my life that has been around for many years. Writing is a passion, something you need to live for in order to be successful at. My passion has been buried underneath diapers, sippy cups and endless loads of laundry for the last 7 years. I needed to uncover it, it was suffocating and needed to breathe the light of day again.

Opportunities only knock once, and if you don't open the door you'll never know what you might have missed. For years I've had aspirations and dreams about what I wanted to do but had no idea where to start. I needed a source of inspiration. I needed guidance and feedback from someone who knew and understood where I was coming from, both from a creative perspective and personal experience. Completely out of the blue, I was approached by someone who fit those credentials and suddenly an opportunity landed in my lap. A collaboration of thoughts, ideas, creativity and experiences was the spring board I needed to get the gears turning and my fingers typing. I was back in my element, finally after so many years of feeling like something was missing...I started to feel like I had a purpose again. Sadly, there were too many logistical and personal roadblocks that prevented that project from really getting off the ground. It's really unfortunate because something great could have come from that. The book was closed before we could even write the preface...That door was not only slammed shut, but locked up tight...

My spirit was broken and my enthusiasm had diminished.

Many months have gone by and very little has been written during that time. Lately I've had that nagging voice yelling at me, telling me I need to refocus, regroup and start writing again.

Cue knock from door #2...

Today, I met someone who shares my passion and can hopefully help get me back on track. There are possibilities on the horizon and I am once again standing on the edge of my future. I am re-committing myself to pursuing this and turning those dreams of mine into a reality. This time the only thing standing in my way is myself.

This door is wide open! Bring it on!

Two Surgeries in Two Weeks

2010-04-22T19:45:00.000-04:00

My daughter is amazing. It is as simple and complex as that.

Back in February, Emily had a partial Tarsorrhaphy (see link below) and a repeat corneal transplant in her right eye, within 2 weeks of each other.
http://http//www.surgeryencyclopedia.com/St-Wr/Tarsorrhaphy.html

The surgery that I wanted to postpone (and did) ended up being something she really needed done in order to protect her cornea and allow the scratch to heal. Her eye was so dry, even with rewetting drops, and there really was no other option. If all the doctors agreed it was necessary, then I had to trust them. I was reassured that this, despite what Dr. Bortz told me, was NOT a permanent stitch. It can, and will, come out at some point in a few months. I didn't know what to expect when the procedure was over, and I was heartbroken to see my little girl look so different. My biggest concern was that now her eye condition was very noticeable and her, for lack of a better word - disfigured eyelid was going to draw attention to it. I didn't want her to look any different that she already did. Most people look at her and see there is something not quite right with her eyes, but when a facial disfigurement is prominent people STARE. I don't want her to go thru life being stared at, made fun of or pointed at. She has enough struggles ahead of her, why did she need to have this added to the list? When I saw her for the first time in the recovery room, my heart sank and I cried. I have tried to be so strong thru all of this and at that moment I was in a million pieces, I'm surprised the nurses didn't hear my heart shattering as it hit the floor.

The procedure allowed her cornea to begin healing within 48 hours, which was great...until we started noticing a grayish white area beginning to form in the center of her left eye...her GOOD eye. It was indeed what I suspected it was...a scar. Can you hear my heart cracking? Because once again it was about to be broken. WHY??? This was her good eye, the cornea that is/was doing fantastically, the one that she can see best with! Can't this poor little girl catch any kind of break? Give her a fighting chance for cryin out loud! A scar...gee I've heard that before. This is exactly what happened to her right eye back in Oct. of 2008 when she scratched that eye and scar tissue formed. That in fact is the reason she is getting another transplant in that eye. And now we have to same problem in her left. What the hell?????

NOTHING we can do about it, except hope it will fade over time.

The doctors don't think it's interfering with her field of vision, despite it being close to the center of her cornea. I hope not, she is seeing so well right now and she can't afford to start losing it. Deep Breath....Throwing my hands up in the air...what can I do? Just love her and have faith....keep hope alive.

On February 25th, in the middle of the biggest snow storm/blizzard NJ has seen in years...Emily successfully had her right cornea transplant surgery. We had to stay in a hotel by the hospital for 2 days because over 2 feet of snow fell in our area. It was an experience that's for sure. Just hours after the surgery, Emily was eating french fries and watching Mickey Mouse on our laptop in the hotel room, eye bandaged and all. This was surgery #17 for her... and when we took the bandage off the next day, Emilys whole world changed. THIS was the best she has EVER been able to see! Two healthy, clear corneas! (scarring excluded)

Much to the amazement of her doctors, therapists, friends and family alike, she is doing GREAT! We are now almost 2 months out from the surgery and her vision has definitely improved. She recently saw Dr. Morgan, her regular ophthalmologist, and she is still nearsighted, but it isn't enough to warrant glasses at this time. She is doing fantastic without them. In the words of Dr. Morgan "If I didn't see it, I wouldn't believe it. She is one of the best cases of transplant surgery I have ever seen, seriously I am amazed at how well she is seeing". Now THAT was music to my ears! You couldn't stop me from smiling that day!

She is still having some problems with differentiating between light and shaded areas outside, going from a sunny area to a shaded area she is not sure if there is a height difference. She steps big over the edge of the shadow as if she were stepping down off of a step. When she tries to navigate some areas in the yard, such as a bare spot in our yard, she asks for my hand to cross it. And when she goes down the steps in the front of the house, she can't really see the edge of the step because its the same color as the next one. She is cautious because she isn't sure how to interpret what she's seeing. Hopefully as she gets older and knows what these things are and learns how to navigate them, she won't hesitate as much. We just try to encourage her that she is ok and she can do it on her own. Most of the time we end up holding her hand, but she is still learning so that should change now that we'll be outside alot more. She didn't like the snow in the winter because I don't think she could see it well. All white snow to her didn't look like anything, she wouldn't even walk in it. We'd put her down and she'd freeze like a statue and just cry. Oh well, hopefully her new snow boots will fit next winter! : )

To all my blog readers who have been waiting for a new update, I apologize for not posting in a while. There has been so much going on in our lives that I haven't had much time to blog. I hope to post some new pictures of Emily from before and after these two surgeries and some of her just being....well...her! : )

She has been such an inspiration to so many people, most of all me. If I am having a bad day or am upset about something relatively insignificant, I look at her and her smile changes everything. She has overcome so much in her short 2.5 years and it makes my little problems seem so petty. She is my sunshine, my beautiful ray of light.

Mommy loves you baby cakes!

Reminders of How Far We've Come

2010-04-22T19:41:00.002-04:00

The other day while cleaning out a box of old papers and junk mail, I came across a photo of Emily when she was just 2 days old. Her eyes were completely clouded over and untouched by the miracle of medicine and science. Her innocence overwhelmed me and all the painful emotions of those first few days came flooding back to me. I sat and cried for a long time.

Thinking back to how her journey and struggle began, reminded me of just how far she has come, how many hurdles she has conquered, how many tears I cried, how many times my heart ached for her.

And here we are now, 2 and 1/2 years later. She is seeing! And seeing WELL! She is doing so much more than I ever imagined she could at this age and I am just in awe of her strength and perseverance. She is my miracle. She is my inspiration. She is amazing!

A Huge Thank You!

2010-04-22T19:25:00.002-04:00

A HUGE Thank you to Cheryl, Carlos and all the amazing women at Rumours Hair Salon! On February 28th, they hosted a Cut-a-thon, bakesale and raffle fundraiser for Emily. Everyone donated their time and talent (on their day off) to help Emily fight blindness. There are not enough words to express how thankful our family is for everything they have done for our daughter.

We love them all and their kindness has touched our lives forever!

Thank You to the Knights of Columbus in Kinnelon for hosting a breakfast fundraiser for Emily back in January. The outpouring of love we saw that day was overwhelming and we are so grateful for your care, concern and support you have given Emily!

God Bless You All!

Listening To Your Intuition

2010-02-08T22:46:00.002-05:00

I have learned, sometimes the hard way, that you should always trust your gut feeling. Anytime I have gone against it, I end up regretting it.

Right now, my gut is telling me NOT to go through with this surgery. My insides are screaming at me...."Don't do it, This isn't Right For Her".

So here is my internal struggle...Trust the doctors or trust my gut?

Because I was not at the appointment last week, I had some questions that I wanted to ask. And I wanted to talk to the doctor myself. I called today (Monday) and spoke with Dr. Bortz and after our conversation I am not comfortable with him or this procedure at all.

His tone of voice and attitude completely put me off. He actually seemed annoyed that I was asking questions that he had already explained to Jason last week. Sorry Mr. Smarty pants, I wasn't there that day and have never met you. I'd like to know more about the surgery you are supposed to perform on my 2 year old daughter and right now your attitude is not making me feel any better!

One of the biggest concerns is a huge snowstorm that is supposed to start Tuesday night and continue all the way through Wednesday night. 12-18 inches are forcasted for where we live and right now I'm not so sure we are going to be able to make it to the hospital at 6:30 am Wednesday. Seeing as though we live an hour an a half away from the hospital, I asked him what we should do if that happens. His answer was "You need to get a hotel room so you can be close by in order to make it on time. There are a few within 10 minutes of here and are probably not that expensive". Ummmm....ok. What do I do with my other 2 children? I certainly can't bring them with me, or leave them at the hotel. I suppose I could have them spend the night with their grandparents, but they have never had an overnight before so that presents it's own set of problems. I told him that even if we do get a hotel the night before, the storm isn't supposed to end until Wed night, so we might not be able to get home. "Well then you'll just have to stay at the hotel again a second night"...Gee thanks, easy for you to say - are you paying for it? Are you going to take care of our 2 older children? I didn't think so.

"Ok, so if we don't get a hotel the night before and can't make it Wednesday morning, what should we do then?".....In a very condescending tone..."Well that's a decision you need to make right now, because if you don't show up Wednesday morning, we will all be sitting around for an hour and a half doing nothing, and that's not appropriate." EXCUSE ME??? Oh I'm sorry...you mean you won't be making any MONEY! Ahhhh....I see now....the health and safety of your patients aren't as important as your bank roll. Nice.

Aside from the discussion about the snowstorm, I was concerned about the "permanence" of these stitches. Why wasn't this going to be temporary? Any exactly HOW drastic will the change in her appearance be? Again...with a nasty tone in his voice...."Well you are her mother and you control how far I go with this, if you only want her to look a little different, then I will only put as few stitches in as possible. If you want her eye to heal and preserve her vision, then you need to let me do what I need to do". THANKS ASSHOLE, I feel so much better now.

As I got off the phone, I told him I would talk to my husband and let his office know what we decided about rescheduling the surgery on Wed because of the snow.

Now my gut is screaming "This is not the right doctor, This is not the right procedure for her, This is too drastic, too permanent...DON'T DO THIS". How am I supposed to ignore that???

The last time I went against my gut regarding Emily's eyes was when Dr. Kane wanted to take her off of the Iquix completely back in December. After healing from her surgery in November, he didn't feel she needed it anymore. I didn't like that idea since Dr. Zaidman had kept her on it at least once a day in each eye as a preventative of infection after her scratched right cornea back in October of 2008. My inner voice told me that she should still be on it at least once a day, but I trusted Dr. Kane and stopped giving it to her...3 weeks later she had a scratch on both corneas and a bacterial infection in her right eye.

The feeling I have is one of great conflict...am I feeling this way because of how the doctor talked to me? Or was it because all of these things are adding up, creating a wall of doubt about this entire procedure? I was sick the day she was supposed to see Dr. Bortz, a huge snowstorm is forecast for the day of her surgery, the nagging feeling I had from day one that this was too drastic of a solution for her...Were the forces of nature putting up roadblocks?

I cried...a lot. I talked it over with numerous friends and family. Everyone agreed that if I didn't feel comfortable with this doctor or this surgery...don't do it. My last ditch effort to make some sense out of this was to call Dr. Kane and ask his opinion on it all. We spoke for about 20 minutes and after our conversation I felt better. Better in terms of how important it is for Emily to have this surgery, and better about the decision to postpone it and possibly get a second opinion. He agreed to send an email to Dr. Zaidman questioning the timing of things and how soon she really needed to have this done. He also told me that he has done this surgery before and by all means it is NOT permanent. The stitches can be undone at anytime, for any reason. If we don't like the way she looks after her cornea has healed...we can have the stitches taken out. I joked around, half serious though....asking if he could do the surgery. No such luck...oh well.

After speaking to him and talking with Jason, we agreed that going to the extreme measures to get this done on Wednesday wasn't worth it. If it didn't feel right and there was any question about how safe it would be for us to travel in the snow, or costly to pay for a hotel...it just wasn't worth it.

After a very emotionally draining day, I felt better. I was going to be able to sleep tonight knowing that in the morning I was going to call and reschedule the surgery.

I was trusting my gut.

Appointment With Dr. Bortz

2010-02-02T15:08:00.000-05:00

Tuesday 2/2/2010

Unfortunately I came down with the dreaded stomach flu and couldn't go to the appointment with Dr. Bortz. Today for the FIRST TIME EVER...Jason took Emily to the doctor by himself. We've either always gone together, or it was just me...never only him. I was just too sick to go, so what choice did he have? We could have cancelled the appointment, but decided not to. She needed to be seen and we needed answers. I just wish I had been there to ask the questions.

Not that I don't trust Jason, but I am always the one who deals with these things and know what kind of questions to ask, what kind of answers I need to hear. I didn't think to make a list for him, but even if I did he probably wouldn't have used it anyway.

When Jason called me after he left the office, surgery had already been scheduled for next Wednesday. Because I wasn't there I had to rely on him to relay the information from the appointment, which presents a problem. It was like playing fill in the blank because he doesn't retain information very well, so I'd ask a question and he'd have a hard time explaining or remembering what was said. Nothing personal against him, its just a guy thing I suppose, but frustrating none the less.

This is what I got out of it: At first Dr. Bortz really felt as though she might have some kind of muscular problem on that side of her face. He was watching her and didn't see her try to blink or close her eye at all. It was only after he put his hand in front of her face a few times (frightening her essentially) that she blinked and proved to him that she COULD blink on her own. Maybe it takes more effort for her to close that eye? I don't know, but after that he agreed that she needed the surgery, I found out later on that Dr. Zaidman was talking to him in the other room and Jason overheard him tell Dr. Bortz that this is what she needed. Was he pushing him to do this procedure????

He explained that her inner and outer eyelids will be separated and the top and bottom will be sewn together. A couple of stitches on the outer corner and possibly one or two on the inner corner. SHE WILL LOOK DRASTICALLY DIFFERENT. This is PERMANENT.

Wait...I thought this was supposed to be a temporary fix to help heal the scratch on her cornea! Not a permanent way to keep her eye halfway closed. If in the future (say 5 years from now) Dr. Kane or another doctor needs to go in and operate in that eye, the stitches can be undone at that time. But there could be some long term issues, such as eyelashes growing in the wrong direction. Well what about how she will LOOK? If her eyelid is sewn shut for 5 years I have to assume that it's not going to just spring back to normal without any difference in appearance! Yes, the point is to help her cornea heal so her vision can be maintained, but how she looks to the rest of the world will have a huge impact on her growing up. Right now she looks as normal as possible...after the surgery she will not.

I can feel the knot in my stomach forming already, it's like a dark cloud beginning to grow inside me. Everything about this surgery seems wrong.

Just As Expected

2010-02-01T17:35:00.001-05:00

2/1/2010 - Appointment With Dr. Zaidman

No surprise here...Emily needs eyelid surgery. Dr. Zaidman had no hesitation about what our next step should be. After once again her left eye lit up bright green, indicating that the cornea was still scratched and not healing, he immediately told the Resident who was observing that the next step in treating this would be to do the eyelid surgery. My heart sank...I knew it was coming, but that didn't make it any easier to hear. He briefly explained about the procedure and told me that he wanted me to bring Emily back in the next day to see Dr. Bortz, another doctor who worked with him who would perform the surgery.

It wasn't a guarantee, just what he suggested she needed. He told me it was completely up to Dr. Bortz and how he felt we should proceed. He went as far as saying that the "scratch" wasn't really a scratch, but more like some form of a corneal ulcer (yet he said ulcer wasn't really the right word either). He thinks that the dryness in her eye that is caused by her (supposedly) not closing her eye all the way at night or blinking often enough, it what caused this scratch, ulcer or whatever it is to happen and not allow it to heal.

The theory is this: Because of the glaucoma, her left eye is larger than normal and doesn't allow her eyelid to close all the way or blink normally. If a few stitches are put into the corner of her eyelid, making the opening of her eye smaller and enabling her to close her eye more easily and more frequent, the dry eye will go away and allow the (whatever it is) to heal.

I'm really not liking the sound of this surgery, and who knows how long she will need to have the stitches in. Isn't this a little drastic?

I guess the appointment with Dr. Bortz tomorrow will give us some more answers.

For now, Dr. Zaidman told me to stop using the Tobrex ointment that we had been using to treat the scratches in both eyes. Maybe he felt it wasn't doing anything? I don't know...but instead of that, we will now be using the Systane Dry Eye ointment every 3-4 hours...until Dr. Bortz decides what to do.

Left Eye Not Healing

2010-01-30T14:30:00.000-05:00

We go to Dr. Zaidman on Monday and I already know what I am going to hear...

"Her left eye is not healing and she needs the eyelid surgery."

I have to prepare myself to hear that, but I'm hoping for a miracle between now and then.

Pressure is good, for now...

2010-01-22T12:44:00.000-05:00

Today we saw Dr. Kane and much to my relief her eye pressure is ok. It was 12 in the Right and 18 in the left. What we are doing now is working and hopefully it will continue to work. I hadn't seen Dr. Kane since the whole scratched cornea incident so he wasn't too thrilled to hear about it. Here we are once again, nothing can just be GOOD. With the good comes the bad....her pressure has been a thorn in our side since she was 6 months old...finally her pressure was under control after a dozen surgeries and countless medications. We can't just enjoy the success of that fact...now we turn our focus back onto the health of her corneas. Her left cornea had been doing fantastic and now this...its a disaster.

And I can guarantee that once her cornea is better, her pressure will be a problem again. It's just how it works.

Trying to focus on the positive

2010-01-20T13:26:00.000-05:00

Emily's visual therapist, Linda, has been coming to the house twice a month since Emily was only a few months old. She has watched her vision grow and improve month after month. Despite the medical roadblocks she has continuously had to navigate, her "usable" vision is fairly good. She walks and runs around like any normal 2 year old. We know she has vision in both eyes because her depth perception is dead on. When she reaches for something she grabs it on the first try, without mis-judging where it is or how far away it is. She plays with toys, looks at books, watches TV (albeit at close range) and goes up and down the stairs unassisted. Since she was about a year old, she has met just about every developmental milestone on target. She was a late walker, at 18 months, but I think that was more of a self confidence issue than physical ability. She cruised for months and would let go all the time, but taking those first few steps was a challenge for her. The day she turned 18 months old, she walked clear across our family room, which is pretty big. For a not quite 2 1/2 year old, her vocabulary is phenomenal. Her therapist, our friends, her doctors and even random strangers have commented on how well she talks. She is clearly advanced in that area, which is wonderful!

Her hearing is excellent, which is typical since if one of your senses is not on par, the other ones are heightened and pick up the slack. She can hear the word cookie or snack from across the house! She is amazingly sensitive to others feelings, often comforting someone she hears crying or knows is upset..."Tyler, don't cry" she said once, and it broke my heart. When we are in the grocery store and she sees or hears a baby..."say hi baby"...."why baby crying?". She is just so sweet.

She is definitely one tough little girl and has taught me so much about how to be strong and resilient. She's my shining star, her smile lights up my day no matter how dark it seems.

I love you punkin pie...

Right Eye Is Better, Left Eye Is Not

2010-01-15T17:24:00.000-05:00

When I walked into the doctors office today, I could see that Emily's right eye looked a little better than it had a week ago. I also knew that her left eye wasn't really any better, which bothered me. I had been giving her the medicine and it was pretty clear that it wasn't working very well.

Dr. Zaidman looked at her and suggested that we add the Iquix back into the mix of eye drops to help aid in the healing. He said that he wanted to give her 2 weeks with this combination of meds and see how she does. If her left eye does not heal or look drastically better, he mentioned sending her to see another doctor for possible eyelid surgery. Ugh...the thought of another surgery just makes me sick. His hunch is that she is not closing her eyelid enough during the day or all the way while she is sleeping, and that is causing the dry eye...which in turn is not allowing the scratch to heal. If that's the case she will need surgery to put stitches in her eyelid to help it close better and maintain the moisture. He is also lowered the frequency of the Durezol, the steriod, in the left eye because that could be contributing to the dryness as it is a side effect. Going from 4 times a day to once a day is pretty drastic, especially since the steroid is what is helping to prevent the cornea from rejecting.

Obviously surgery is not an option that I want to consider. She has been through enough. I just hope and pray that the left eye heals within the next 2 weeks. Her appointment is Feb. 1st...

Scratches on Both Corneas and Infection

2010-01-14T21:37:00.002-05:00

Last Wednesday I noticed Emily's right eye seemed to be more bloodshot than it usually is. I mentioned it to Jason and he didn't really notice much of a difference...but I knew something was wrong. Two days later, on a day that Emily already had a scheduled appointment with Dr. Zaidman, she woke up and the second I tried to put drops in her eyes I immediately felt sick to my stomach. Flashback to Oct. 2008 when she had the corneal ulcer and infection in her right eye after she scratched it...It looked exactly the same. Are you kidding me???? What the hell happened????

I got the kids to school (late) and rushed off to Dr. Zaidman's office. I actually got there 45 minutes early because I didn't want to waste any time and thought if he wasn't too backed up he could take us in when he had an opening. WRONG....Do not show up early and expect to be seen even on time...I waited for over 2 hours. Emily ate every single snack I had with me and I was almost ready to go take a walk. It was about 95 degrees in there and I felt like between my nerves and the heat that I was going to pass out. I tried to keep my mind off of how bad her eye looked, but just trying to talk to Jason over the phone and explain what was going on, I started to get upset. How could this happen to her again?? And the worst part was that I saw something wrong with her left eye as well, it literally looks like someone peeled a layer of her cornea off. The right eye was much worse, looking like a crater in the center of her eye. I knew there was an infection...ugh. The part that irritates me the most is that Dr. Zaidman had kept her on the Iquix ever since her last infection like this, she was on it only once a day up until her surgery in November. But Dr. Kane took her off of it a few weeks ago. My gut told me not to stop it, but I was trusting the doctors. I keep thinking that had I not taken her off of that antibiotic, this wouldn't have happened. ALWAYS FOLLOW YOUR GUT! I try to as much as possible, but sometimes you second guess yourself.

I cannot put into words how twisted my insides felt when I looked at her eyes. I felt sick to my stomach with fear and was probably pretty close to having an anxiety attack. Finally when the one resident doctor called her in I was able to explain what I saw and he put drops in her eyes to test for a scratch. Her eyes lit up like a Christmas Tree. Both eyes, stained green in the center...that is not good. When you think of a scratch, most people visualize a thin straight line. When you are talking about a scratched cornea....its more like a scrape. It's not a line, its a large patch of the front of her eye that appears to be missing. It's not pretty to look at, in fact it really made me cringe when I saw it. Once again the stupid residents tried taking her pressure and because they use the stupid tonal pen it never works. Idiots...they have no idea how to work with a child.

Anyway, Dr. Z came in and did not like what he saw. She had been doing so well and now this! He couldn't say for sure that there was an infection, so he took a culture to make sure. But there was definitely scratches on both eyes. JUST GREAT! Hasn't this poor girl been through enough? Why did this happen? How did this happen? There is no answer. She could have rubbed her eyes too much, bumped her eye with a toy, scratched it with her fingernail...etc. We will never know.

So...we treat it as if there was an infection. Antibiotic ointment every 3 hours around the clock...yes we have to wake her up during the night to give it to her. She is no longer on the Durezol in the right eye, apparently he thinks there is no reason for it anymore and we are dropping the dosage in the left eye down to once a day. The weekend was exhausting. I had my cell phone alarm set for every 3 hours to remind us when she was due for it again. By Monday we were out of the ointment and tired as hell. She fared well though, only waking up enough to let us put it in and then going right back to sleep, not once has she given us a hard time. She is just amazing, taking this whole thing so well. But she doesn't know any better.

On Monday I took her back and the results were positive for infection in the right eye but not the left. Her eyes did look better, but Dr. Z wanted to add back in the Iquix so help speed the healing process. We are afraid that the scratch is going to cause damage to her beautifully clear cornea and that would be disastrous. He lowered the frequency of the ointment to every 4 hours, but still around the clock. It's been almost a week and her eyes look better, but not 100% yet. Hopefully I will get better news tomorrow at her next appointment.

As long as the infection stays away, this should not affect her transplant on Feb 25th. She can't afford to wait much longer, I can see she is losing some control over that eye. Which means she is losing vision too. I just hope and pray for everything to heal quickly without any additional complications.

And as for me...I'm handling this pretty well, with the exception of the day it happened. But by all means, pour me another glass of wine.

I will update again after tomorrow.

Pressure Elevated in Left Eye

2010-01-14T20:13:00.003-05:00

After a few weeks of no glaucoma meds, sadly Emily is back on the Timolol and Xalatan. Her pressure is up in the left eye. It went from about 18 to 26 in a weeks time. Dr. Kane said it might have something to do with the valve acclimating itself to her eye and that the pressure increase might be temporary. But for now, she's back on the meds.

It was a nice break...the only meds she was on was the antibiotic and steroid. It was the least amount of eye drops she had been on in the last 2 years. But I knew it wouldn't last for long. About 4 days after she started the drops again, her pressure was back down to 18, so at least we know the meds are working.

Her right eye hasn't been tested too much with the instrument, but Dr. Kane feels how hard or soft her eye is to judge the pressure and so far so good. Fingers are crossed that this will be a long term fix for her. I can take giving her the drops, I can't take more surgery. But we know she'll have at least one more...the cornea transplant again in her right eye at the end of February. As long as the pressure remains low...

Squishy Eye

2010-01-14T19:50:00.002-05:00

Although Emily hasn't been on any medication for the pressure, Dr. Kane showed me how to press on her right eye and force the fluid to flow through the new channel he created. This will help maintain the lower pressure and possibly prevent scar tissue from forming in the channel. We've dubbed this maneuver "squishy eye" since that's basically what we are doing. I have to press on the lower portion of her right eye for 10 seconds. I am so afraid of pushing too hard, but at the same time I don't want to not push hard enough. When I asked Dr. Kane about it, he said I can press alot harder than I think. That doesn't really help me much!

Emily is ok with us doing it, but she is catching on. If we tell her we need to do "squishy eye" she knows what is happening beforehand. That helps to alleviate some of her crying. We try to make her laugh by counting out loud and being silly while we are doing it, otherwise she'd be freaking out. Sometimes she even tries to count with us, but she only says four and five over and over, its so cute.

It started out as once a day but now we are up to 4 times a day. I don't mind doing it, but it's the amount of force I am using that I am worried about. I don't want to hurt her.

Post Op Follow Ups

2010-01-14T19:31:00.000-05:00

In the weeks following her surgery, Emily was seen by Dr. Kane at least twice a week. She was healing nicely and her pressures seemed to be remaining at a safe level. I was holding my breath each time I would take her into the city, just waiting to hear that all is well. Because of the danger of her right eye pressure being too low, she needed to be seen frequently. I have to say that I am thoroughly impressed with Dr. Kane's commitment to his patients. Emily needed to be seen, but he was not going to be in the office for the Thanksgiving weekend. So he invited me up to his house in upstate NY so he could examine her, he even offered to give us lunch! I felt honored and privileged to know that he cared that much about Emily to invite us into his home. The day after Thanksgiving, Emily and I took the 2 hour drive up into NY. His home was tucked away up in the mountains...a far cry from the busy streets of Manhattan. It was well worth the trip to know that her pressures were ok.

What an amazing doctor, I honestly feel like part of his family now. Thank you Dr. Kane for truly caring about Emily, we love you!

Nov. 19, 2009 - Surgery Day

2009-11-19T10:00:00.001-05:00

11/19/09

You know there is something to be said for a 2 year old who has been through 15 surgeries and still has a smile on her face everyday. It just blows me away.

We got to the hospital early since she was Dr. Kane's first case of the day. We were a little late because of traffic on the bridge, but that actually worked in our favor because once we got there they got things started for her pretty quickly. I think she is catching on to what being in the hospital means for her because she completely broke down crying when the nurse tried to put on her ID bracelet. "It's just a bracelet Emmy, it's not hurting you" is what I said to her, but she knows better. It's not the bracelet that hurts, it's what having the bracelet on means...

After doing all the pre-op stuff and answering the questions about her health and medicines, we were brought back into the stage 2 room. She was given the "Happy Juice" again, which she really needs now. She understands more now and isn't so willing to just go with the nurses into the OR. This calmed her down alot, but we struggled with keeping her from running around. Once she gets the sedative, she can't walk around...drunk 2 year olds don't walk very well. I suited up and brought her into the OR. By now she was pretty out of it, but once they put the mask on she fought it until the anesthesia finally won and she was out. I pulled down my mask and kissed her..."Mommy loves you baby girl, stay strong. I'll be here when you wake up, I promise"... Before I left the operating room, I looked around and took note of everything. So many machines, instruments, wires, monitors, beeping noises, IV bags, needles, nurses...and the miraculous Dr. Kane. This HAD to work, she can't keep going through this....but I've found myself saying that with every surgery so I'm not sure it has much power anymore.

I didn't cry until I saw Jason outside in the hallway. How is it that Emily seems to be so strong yet I can't keep it together? Aren't I supposed to be the strong one? Most days I feel like I am Supermom with the strength of steel, but not on Surgery days, this is when I melt into a puddle on the floor just waiting for someone else to mop me up. Today was going to be a LONG day. Emily would be in surgery for five hours or more so at least I came prepared with things to keep me busy. But first...hug my husband as tight as possible, cry as much as I needed to, wipe away the tears and take a deep breath. Ok, I feel better...now lets go get the one thing that seems to comfort just about every emotion in the book...food.

I have to say that I am pretty disappointed in the food selection at the hospital, even in the main cafeteria...not much to choose from. We ended up sharing a bagel and splitting a donut. We even had to pay extra for the butter. Ridiculous. After milling around the gift shop, checking out the bookstore across the street (which is mainly all medical stuff since Columbia is a teaching hospital) and once again finding nothing interesting in the coffee shop, we made our way back up to the 4th floor. We got our things out of the locker and settled into our seats in the waiting room. I think Jason read some of his fishing book and then closed his eyes to take a nap...I worked on my Christmas cards. At least I could accomplish one thing during our long wait. I had to laugh, our cards have the word "Joy" written on them in silver glitter and after writing out 40+ cards...there was glitter EVERYWHERE! I was listening to some good music on my ipod and for the most part it kept my mind off of what was going on. A couple songs in particular made me smile and think of some of the happier moments I've had this past year. Without some of those really happy and fun times, I know this year would have been so much more difficult. Smiling...Laughing...Feeling Alive. Amongst all the sadness and tears, I somehow managed to find some Joy in my life. Laughing with friends has really helped me balance the ups and downs this year, and for that I am so very thankful.

A few hours passed and we were really hungry so Jason went on a hunt for something resembling a sandwich. Of course within 10 minutes of him leaving Dr. Kane came out to find us. He said that the surgery went very well. He removed a glaucoma valve from both the right and left eye and performed a Trabeculectomy (sp?) on the right eye. That means he created a new pathway for the eye fluid to drain from, allowing the pressure to be lowered naturally without any valves or medication. The risk involved with this procedure is that the eye pressure could become too low and in that case she would have to go back into the OR and have fluid injected back into her eye to prevent her eye from collapsing. That scares me to death.

Dr. Kane explained that the surgery went well and that his one concern was that the surface of her left cornea looked rough. Dr. Zaidman had recently diagnosed her with Dry Eye and gave us some lubricating drops to help fix it. It looked better to me, but Dr. Kane still didn't like the way it looked and suggested we use the nighttime ointment instead of the drops. We think she is sleeping with her eye not completely shut and the ointment will help keep it moist overnight. Her right eye was patched but her left eye was not...so she had some bloody discharge leaking from that eye, especially when she started crying. That was hard to see. When her eye is patched, we never see the blood, only on the gauze the next day when the patch is removed. But seeing her bleeding like that hit me pretty hard. That is something I will never forget.

Emily must have been so thirsty because she drank just about 3 full cups of juice while we were in recovery. She was all cozy and warm in my arms the whole time, so I never felt it... but her diaper leaked and my entire leg was soaking wet. She must have been so uncomfortable but with all the IV tubes and monitor wires it would have taken a small army just to change her diaper, so we never even gave it a thought. Next time we'll recruit the army.

I was exhausted in every sense of the word. I fell asleep holding Em in the rocking chair in recovery but I kept twitching myself awake...that was SO ANNOYING! You know, when you just drift off and then your nerves decide to wake you up by making your arm or leg spasm for no logical reason? Yeah...after an hour and a half it got really old. After we were on our way home, I fell asleep in the car, even forgoing a 10 minute trip into the store alone (for a change) to sleep. Jason went in and picked up some of the nighttime dry eye ointment and milk. By the time we got home and got everyone in bed, I was completely wiped out. Thank god Emily slept through the night because I wouldn't have been in any shape to get up at 2am and comfort her. That is probably the most tired I have been in a very long time. Maybe the emotional toll it took on me to actually get her through the surgery, after it had been postponed so many times, finally caught up with me. It was almost as if God said "ok she is out of surgery, it's over...you can rest now".

Surgery Tomorrow - #15

2009-11-18T22:10:00.002-05:00

It's been over a month since I posted on this blog and I apologize to those who return on a regular basis to get an update on how Emily is doing. This past month has been ridiculously crazy and I have not had time to do very much writing. In fact you should see my house right now, laundry is out of control! But that's besides the point. This post is just to briefly update what has been going on, I will elaborate in my next few posts.

Emily's surgery has been postponed 3 times because she has been sick. Most recently it was postponed from last Thursday to tomorrow. The boys got sick and then so did she, I am so frustrated at this point, I just want it to be over. 5 hours....F I V E hours she will be in the OR. Just scary. I am feeling kind of numb about it right now. I might be a mess when I am there tomorrow, but I have some good music on my ipod, a laptop to write with and I am bringing Christmas cards to write out. That should keep me busy and my mind off of things for a little while. Maybe I will just pull up a gurney and take a nap. Lord knows I need to sleep more.

About 3 weeks ago, Emily turned two and wow was that an emotional day for me! I will post pictures and elaborate on how things went another time, but lets just say I was such a proud mommy that day. My little Emmy has come so far and been through so much...and she was just so happy that day (and everyday for that matter). I love her so much, she really is the light in all this darkness. Happy Birthday Cupcake!

Personally, I have been through a vast array of emotions over the last month or so. Having some pretty steep highs and really low lows. There's that damned roller coaster again, still haven't gotten off the ride I guess. I have found that I am subconsciously distracting myself from dealing with alot of emotional stuff lately. I've tried to keep myself busy, especially on weekends by getting together with friends. I need to have someone to laugh with, or laugh at. Just a couple weeks ago we had friends over and someone said something that really wasn't that funny, but I just giggled and giggled...I laughed so much that it eventually turned into an uncontrollable laugh/cry thing...all my emotions letting go at the same time. I haven't laughed like that in a long long time. I think what set me off was the word "jiggled"...not sure what we were talking about but it just struck me as hilarious. Periodically during my day I will think back to a conversation I had or comment that was made and it will make me smile or laugh to myself, sometimes even out loud. It's moments like those that get me through my day. Thank you to all who make me laugh, you are keeping me sane. Music has been therapeutic for me as well. The more I listen to it, the louder it speaks to me. All of a sudden I am hearing meaning in songs that I've heard a hundred times. It's fantastic.

I am really glad that my husband and I have been able to start getting out more, just the two of us and with friends. We really need it and the timing couldn't be better. The holidays are coming and this is typically my favorite time of year...time to celebrate life, love and friendship. A time for miracles and a time to BELIEVE.

Right now, we need to BELIEVE in Emily's doctors, rely on our love and friendships to get us through each day...and pray for a MIRACLE. God, please watch over our little girl tomorrow...give her the strength and courage to get through it. Give her doctors the knowledge and ability to help her, to fix her, to heal her.

I will update again tomorrow...

Oh My God...I Can See The Tube

2009-10-06T15:07:00.004-04:00

After we noticed Emily's eye looked different on the night the drainage tube opened up on it's own, we took pictures of her eye mainly because it was the best way to get a clear view of what was going on. She moves around so much and it's hard to get a good solid look at her eye. As soon as I took a few pictures and looked back at them, my first words were "Oh My God...I can see the tube." I didn't know whether to be completely freaked out, or stunned with amazement. My husband told me I needed to post a picture of it so that everyone else can see what it looks like. So...here it is, a close of up Emily's Left eye. I didn't remove the red eye from the photo because it took away from the clarity and doesn't leave her eye looking natural.

You can clearly see the drainage tube in the center of the eye...its on an angle from right to left.

Reading For Emily

2009-10-06T02:09:00.001-04:00

Thanks to a couple of amazing friends, A Read-a-Thon has been set up to benefit Emily. It will start on 10/25, which is Emily's Birthday, and ends on 11/25.

Please check out the webpage for more information.

www.readingforemily.webs.com

Thank you to all who participate.

A Blessing in Disguise

2009-10-05T18:37:00.003-04:00

September 24th, 2009

Emily's surgery was cancelled...

You know, I find it very ironic that the hospital asks you to arrive 2 hours before the scheduled surgery time, and then you sit there and wait for hours and hours. We finally stopped playing their stupid game and refused to rush to get there on time. But of course this one time we tried to get there on time, we hit traffic on the GW bridge. We finally made it over the bridge and had just pulled up to the traffic light by the hospital when my cell phone rang. It was the doctors office calling to find out where we were. "We hit traffic" is what I said and told her we were just outside the hospital. Within 2 minutes of hanging up, the phone rang again...this time it was a nurse at the hospital... "Emily is scheduled for surgery today and we just wanted to know if you were still coming." We were about 30 minutes late, are you kidding me? I should have just said "no we decided to skip it today and go to the park instead". I wonder what she would have said. Lets get this straight...you are going to make us sit there and wait for hours and hours anyway, does it really matter if we aren't there on time? And by the way, would you please cash my check from 3 months ago? I am not giving you any more money until you cash my measly $15 check. UGH!

We get there, check in, get Emily's ID bracelet and sit down. Let the waiting begin. 4 1/2 hours later we were sent home without even getting near the OR or Recovery Room. Why? Two Words...RUNNY NOSE. There was a complication with the surgery on the little boy who was Dr. Kane's first patient that day, so that was the reason for the extended delay in the surgery. We know his family and our prayers were with them and their little boy that day. Thankfully the surgery turned out ok and I believe he is doing well. But what I am a little annoyed at (or REALLY annoyed at) is the fact that we shouldn't have even gone to the hospital at all that day.

About a week earlier Emily had developed a yucky runny nose for which she was put on antibiotics in the event it was a sinus infection. The nurse who called us the night before to give us our arrival time and ask some questions about Emily told us just to let the nurse know about the runny nose (and post nasal drip cough she also had developed) when we got there. That is exactly what we did. Now granted, the nurse who took all of Emily's vitals and information did not seem to be the most intelligent nurse we had ever seen, but she didn't even bat an eyelash when we told her about the runny nose, cough and medicine she was on. So we just assumed it was not a concern. It was not until we met with the anesthesiologist (4 1/2 hours later and about 5 minutes before she was to be taken into the OR) that it was all of a sudden an issue. Great...just great.

She expressed her concerns to us and went to talk to Dr. Kane. A few minutes later Dr. Kane explained to us why he felt it was best to postpone the surgery to another day. If a child has had a cold, runny nose and cough, their bronchial tubes may be irritated. During the surgery Emily would need to be intubated, which means a tube is placed down her throat to help maintain a clear airway during the surgery. If her bronchial tubes are irritated, the tube and pure oxygen could create an asthma type reaction and under anesthesia that is VERY BAD. There was a possibility of her ending up in ICU for up to 2 weeks. Because Dr. Kane didn't feel it was extremely urgent for Emily to have the surgery, the risks involved were not justified. We totally agreed.

He also told us that the way the valve and drainage tube is designed, allows for the stitch around the tube to dissolve on its own if it is not surgically cut within a specific time frame. If by chance we can't get her into the operating room within the next few weeks, it is possible that the tube could open up on its own and the valve would start working. I guess it's kind of like a fail safe feature for situations like this.

The anesthesiologist somewhat apologized to me because she said she should have come and talked to us alot sooner, but honestly that was of no consequence. We still made the trip into the city, starved our daughter for over 17 hours and wasted an entire day because the idiot nurse who called us the night before should have told us to talk to the doctor before we came to the hospital that morning. Believe me, all of this will be written in an letter to the hospital or as part of their patient satisfaction survey. I doubt we will get one, we've only ever gotten one and that's when I pretty much ripped them apart for letting us sit in the waiting room for more than 6 hours without giving us any reason for the delay in her surgery START time or food for us and or Emily. The next time we were there, we were given food passes to the coffee shop while Emily was in surgery. Coincidence??? Anyway, the reasons for the cancellation of the surgery was justified and we were ok with it. It's the other nonsense that brought us to that point that is just not acceptable.

The next day I called and made an appointment to see Dr. Kane in his office the following Friday, which was a week from then. Later that night, Jason and I were playing with Emily on the floor in the living room and I looked at her and noticed her left eye looked different. It looked smaller, almost like it was deflating. I was scared to death. What was happening? Her eye was a little red on the outside corner and her entire eye looked drastically smaller than it was just minutes before. But wait....it actually looked like it was the same size as the right eye. Then a light bulb went off in my head...the TUBE OPENED UP! That had to be what happened, that was the only explanation I could come up with.

Previously, her left eye was noticeably larger than her right. Initially, the larger clear section of her cornea allowed for an optical illusion to make her eye look bigger, when it really wasn't. But as time went by and the pressure increased, eventually it really did become bigger than the right eye. So it would only make sense that if the tube opened itself up and the fluid started draining out of her eye, it would shrink back down to normal size. In my heart I knew that was what happened. We kept her up later that night just to monitor what was happening, but she was acting fine so we let her go to sleep. That weekend was very busy, the bake sale for Emily and blood drive was the next day so unless something major happened overnight we were going to have to wait until Monday to call Dr. Kane. When I finally did talk to him, he confirmed my thoughts and said that more than likely the tube had opened up. We were to stop giving her the Diamox, Timolol and Xalatan in the left eye.

Over the next few days, she seemed to be doing just fine and her eye looked AWESOME! Everyone who sees her is just in amazement at how good it looks, Dr. Kane included. When we did finally see him on Friday Oct. 2nd he said "wow, that really is one great looking transplant". From his mouth to God's ears...please God, keep her cornea clear and her pressure low.

He tested her pressure in the left by just pressing on her eye, he said it felt very soft and the pressure was probably in the single digits! But how low was too low? He said not to worry about it because it would probably come up a little bit over time, but she has NEVER had single digit pressure readings in either eye...that was WONDERFUL for me to hear. He did an ultrasound on both eyes and determined 2 things...1 - the valve in the left eye was working well...and 2 - there was almost no fluid surrounding the valve in the right eye which meant it wasn't working. My guess is that the valve and tube are encased in scar tissue again which means no fluid can get in or out. BUT...her pressure was in the high teens, which is a far cry from the 30/31 reading that Dr. Zaidman had gotten a month earlier during her EUA.

So...now what do we do???

Her surgery was supposed to address 4 things: open the tube in the left eye, remove the original valve and tube in the left eye, remove the valve in the right eye and create a new pathway for fluid to drain from.

Well, the tube is open now, so we can cross that off the list...Dr. Kane thinks the left eye looks so good that he is really hesitant to go back in and take the original valve out - he doesn't want to mess with it if he doesn't really have to. And the right eye pressure is much lower than we thought, so does that valve really need to come out? Does she really need to have the Trabeculectomy done? All of these questions must be discussed with Dr. Zaidman before any further action (and consequent surgeries) can be planned. Dr. Kane emailed him and he said he will call me once they have talked and come up with an agreeable plan. Now I sit and wait for the phone to ring...

So, was it divine intervention that day in the hospital? Was someone above looking out for Emily and guiding her away from being in the OR that day? It is very possible and completely believable given the information gathered at the appointment that Emily might not honestly need all of those procedures done, at least not right now. Timing is everything. For one reason or another she was not meant to have surgery that day. Her runny nose was really a blessing in disguise.

Ironically...the day in the hospital was the last time we ever saw her nose running or heard her cough. Since then she has been perfectly healthy.

The Definition of Friendship

2009-10-03T15:52:00.007-04:00

Over the past few years I have come to realize that friends are just as much a part of my family as my family is...sometimes they ARE my family. But what defines a friend? I've thought about it alot lately and found that no two friends are the same. Each friend provides their own unique purpose and place in your life.

Some friends are people you have known for years, the ones who you went to school with or grew up with. These are what I call "life friends". They have been in your life the longest. Some of them you talk to regularly, some have faded away and are not prominent in your life any longer. You might send a Christmas card to them (or not) but either way they will always be in your life. Time doesn't change anything for these friends, you can go years without talking and it doesn't matter. You pick up right where you left off.

"Situational Friends" are people you know because of a set of circumstances that lead you both to that first random meeting. Usually there is some form of commonality that creates the friendship. A meeting that occurs in the doctors office waiting room, a conversation with a coworker or with a complete stranger on an online message group for example. These friends all share something in common with you, it is the glue that keeps your friendship alive. These friends provide you with a sense of comfort, a feeling that you are not alone in life. Some of these friendships will not last forever, but the ones that impact your life in the most profound ways, will. These might be friends you see all the time, or never meet, but you know they will always be there for you when you need them.

"Go-To Friends" may be people you talk to all the time or only occasionally. But when you are looking for something specific...you know exactly who to call. Looking for a fun night out? Need to cry? Want to laugh? Need advice about X, Y or Z? Call your go-to friend, you know they will hook you up! Most people have multiple go-to friends, all have their own specialty.

"Comfort Friends" don't necessarily need to talk to you to comfort you, they just listen. And when you do need them to talk, they won't always have the right words, but it usually doesn't matter. Sometimes they know that what you really need is a hug. A hug from the right friend at the right time is always therapeutic. No words necessary. These friends are there for you anytime, day or night, no questions asked.

The "Unexpected Friend" sometimes is the dark horse in your life. This friend might be in the background most of the time, but one day comes front and center. Suddenly you realize you have more in common than you thought and your friendship takes on a whole new meaning. There is always a reason that this friend has been in your life, and until that "a-ha" moment happens, you don't fully understand their purpose or their significance.

"Best Friends" are very often a combination of all of the above. They are there for you ALWAYS. They don't judge you or question your actions or words. They fully understand you and love you unconditionally. You might talk to them multiple times a day, everyday. Or you might go days, weeks or months without talking at all.

"Spousal Friend" - this is the only type of friend for which you will only have one of. Your husband or wife is your default friend. Before you fall in love and get married, you are friends first. That friendship is continually growing and will never stop evolving. Your spousal friend has special privileges that no other friends has. (no further explanation needed) : ) One stipulation though, your spouse is always your best friend, but not your ONLY best friend. Friendships outside of your marriage is not only extremely important, but necessary for your marriage to be successful (and happy). You need other friends in your life, people who are not inside your "bubble" so to speak. Non spousal friends are not directly involved in your marriage or family. They can be objective and offer comfort and support in ways your spouse might not be able to...especially if you need someone to vent to about your husband or wife, or other family related issues. Otherwise all you will do is argue, and your marriage will suffer. And who wants that?

How often should you talk to your friends? Everyday or just once in a while? What do you talk about? Anything and everything...and sometimes nothing. There is no right or wrong amount of contact between friends. Whatever it is, it is.

"My Sacrifice" by Creed has a powerful message about friendship. I Love this song, Give it a listen...

http://www.youtube.com/watch?v=sMMpy81xInc

Some Words of Gratitude

2009-09-19T21:42:00.004-04:00

"No person was ever honored for what he received. Honor has been the reward for what he gave." - Calvin Coolidge

On behalf of our family, we would like to thank everyone for all that you have done and continue to do for us. Many of you have been there supporting us from the day that Emily was born. Some of you we have just met and we are now here to give each other support. And yet we may never meet others who are reading this or who have reached out to us in other ways. Your kindness and generosity has overwhelmed us and we will be eternally grateful. We will never be able to say thank you enough.

"Kindness is the language which the
deaf can hear and the blind can see." ~ Mark Twain

Hope, Sacrifice, Fear and Compassion

2009-09-19T17:48:00.005-04:00

Anyone who has a spouse, child, parent or sibling with a serious medical condition will understand the true meaning of the words hope, sacrifice and fear. Fear sets in immediately. It's ugly, painful and follows you around like the darkness of your shadow. But even on the darkest of days, there is a tiny light called hope. When hope comes knocking at your door, you hold on to it as tight as possible and never let go. It's a difficult balance because the fear never leaves, even when hope arrives.

The sacrifice that you make as a family becomes second nature. You find a way to provide the medical care for your loved one, there is no choice...you just do it. You make changes in your life to accommodate their needs without even knowing it. I, as a mother, have made a million sacrifices for my family. Don't ask me to name them all because I probably don't even know I'm doing any of them.

Being on the inside of the "bubble" I can only see what is right around me. Emily's immediate medical care, the needs of my two boys and the responsibility I share with my husband to raise a happy and healthy family. That is my bubble. If you aren't inside my bubble...how can you possibly understand what I am going through? Some people try, others are just glad they are on the outside.

Once you have a bubble of your own...you are no longer immune to other bubbles that are like yours. You find compassion for others who are dealing with the same fear and sacrifice that you are. Suddenly you understand things you didn't before. You no longer see a sick child and think to yourself "I can't imagine what that family is going through". You can imagine it because you are living it.

FIVE Hours?

2009-09-19T16:34:00.002-04:00

This past week Emily had exams by both her doctors in New York. Dr. Zaidman was once again very pleased at how the left eye looks, but sadly he never really comments on the right one anymore. I guess he knows it's not doing well so he doesn't bother? I don't know. But all is well with the left one and he won't need to see her for another 4 weeks. My guess is because he knows we will be busy seeing Dr. Kane fairly often...

We saw Dr. Kane this past Wednesday and talked about her next surgery. She will be going in on Sept. 24th, next Thursday. Originally she was only going in for a short procedure to open the tube in the second glaucoma valve. But it has quickly turned into a major surgery on both eyes that will require 5 hours in the operating room. FIVE HOURS! I thought I had heard him wrong when he said that, but I didn't. He will be doing two procedures on each eye and his estimated time is 2.5 hours per eye. I really don't know what I am going to do. I think I will be going out of my mind with fear and anxiety. The longest she has been under was almost 4 hours, and that was because there was a last minute complication before the surgery and he didn't know how long it was going to take to fix.

Here is what she is going to have done:

Left - Open drainage tube on 2nd valve, which is behind the lens implant, and remove the original valve which is more towards the front of her eye. It is too close to the cornea and is not functioning so it will just be removed.

Right - Originally only an exam was to be performed on this eye. But because of recent high eye pressure, the valve is going to be removed and instead of replacing it with another one, she will have a procedure called a Trabeculectomy done. This is done to create another pathway for the eye fluid to drain from. Dr. Kane planned on just replacing the valve, but after talking with Dr. Zaidman he changed his mind and is opting for this other procedure.

I was told the success rate for the Trabeculectomy is about the same if not slightly higher than putting another valve in. It's the most common form of Glaucoma surgery. Dr. Zaidman wanted this done instead of another valve because he is planning on doing the partial transplant on the right eye. I didn't get specifics as to why it would be better, but all I was told was that this is what Dr. Z wanted.

Although the success rate may be slightly better, the post operative care may be more difficult. Emily's eye pressure will have to be monitored very closely for the first few weeks because if at any time her pressure is dangerously low, she will need to go back into the operating room and have fluid injected into her eye. Basically to prevent her eye from collapsing...I am not sure I like the sound of this. Can't we just do the valve surgery again?

If there is a silver lining to any of this, it would be that both eyes will be worked on that day instead of doing the left eye now and then going back to do the right eye. One less trip to the hospital, one less time she will be under anesthesia, one less traumatic experience for Emily. This will be surgery #15....with the impending transplant in the right eye as #16.

We do not go back to see Dr. Zaidman until Oct. 16th so at least I know she won't be having the transplant before her birthday. She has a little over a month until she turns 2 and I would rather not celebrate her birthday in the hospital if I can help it. She deserves to be a happy little girl on her birthday...with no black eyes.

But first we need to get through her five hour surgery. I know she will do fine, she is one strong little girl. But her mommy is starting to come apart at the seams.

My Week Off

2009-09-19T16:21:00.003-04:00

September 13, 2009

For the first time in MONTHS I did not need to bring Emily to the doctor at all this week! Wow, I had an entire week off? What did I do with my free time? (umm....there is no such thing) Well I guess the timing was really good because most of the week was spent preparing for Tyler's birthday party and getting back into school routines.

Without this week off I would have been up until 3am every night rolling fondant and doing laundry.

However, Emily will be going to both doctors next week...Wednesday I will be in Manhattan and Friday I will be in Westchester. So on we go...

I Didn't Cry Today

2009-09-15T18:46:00.010-04:00

September 2, 2009

It has been almost exactly 3 months since Emily had the second corneal transplant in her left eye. Today she finally had the stitches removed. The hospital had a warm, comforting feel to it today. I'm not sure if it was because the nurses all recognized us and were so amazed at how big Emily has gotten or the fact that we were only there for an EUA and removal of the stitches. Maybe it was a combination of both. The nurses couldn't stop commenting on how cute Emily was and were shocked to realize that the first time she was there was almost 2 years ago. That time span seems like a long time, but for us it has gone by in a flash. Because we are constantly at the hospital so often, each day/visit seems to just blur into the next. It's kind of dizzying now that I think about it.

Emily has definitely started to show her more independent side lately. While we tried to keep her entertained on the hospital bed while the nurse was asking us some questions, it was short lived. All she wanted to do was get down and explore. The nurse gave her a thermometer to play with, but in typical girl fashion she used it as a phone. I think she was talking to Tyler and Poppy (grandpa). But eventually she lost interest so we had to let her get down off the bed, or she would have started setting off heart monitors and pulling the oxygen tubes out of the wall! She walked all around the surgical area and up and down the OR Hallway. She would have walked herself right into the operating room if we let her!

When the time finally came for her to go into surgery, Jason suited up and walked her down. I followed them as far as I could, then I had to say goodbye. I kissed her and told her I loved her, just as I always do. "Be strong baby girl, Mommy will be here when you wake up". Then Jason took her through the double doors and out of my sight. This is usually the point in time when I get really emotional and cry. But for the first time I didn't. I was trying to be strong...I had to be strong. I didn't even have to fight back tears, they were simply not there. Was I scared for her? Of course...anytime she goes under anesthesia I am scared. But today she was not going to have anything major done. It was still surgery, but it was just to remove stitches. Oddly enough that seemed like a good reason for her to be in the hospital, if there is such a thing as a good reason.

It was a fairly short procedure, considering she's been in the operating room for upwards of 4 hours at some points. Jason and I went to get a bagel and drink and before we knew it she was in recovery. Dr. Zaidman had some good news for us. Her left eye looks great! The cornea is very clear and the lens implant is still in place. Her pressure was 21, but keeping in mind she had only had the 2nd valve implanted two weeks ago and was still on the Diamox, we knew why it wasn't as high as it had been. He suggested that when Dr. Kane goes back in to open the drainage tube on the 2nd valve that he removes the original valve because the tube is a little too close to the cornea for his liking. Dr. Kane had expected that he would suggest doing that.

But as I have learned to expect, with the good news comes the bad news. For some reason the pressure in the right eye was 30 today. Wow...30? I was really shocked at that number because her right eye has consistently been around 20 for quite some time now. Ok, lay it on me....let me guess...she needs more surgery on that eye? Ding Ding Ding! You are correct! I knew she was going to need a partial or possibly another complete corneal transplant in the right eye because of the scar tissue that formed in the center, but I was not anticipating anything related to the glaucoma. Dr. Z told us that he would leave it up to Dr. Kane to decide what he wanted to do about it, but he suggested that the valve be replaced or a second one put in. Great...once again, we can't just enjoy the good news can we?

He gave us a prescription for glasses, but told us not to fill it quite yet. We should wait until she saw Dr. Morgan and get his opinion first. She may need glasses for seeing close up because the lens implant allows her to see better far away, but causes the eye not to focus at close range.

We let Emily sleep for a while before really trying to wake her up and give her some juice. She was sleeping so peacefully...

Post Op Appointment With Dr. Kane

2009-09-15T17:59:00.002-04:00

September 1, 2009

Today we saw Dr. Kane for his post op appointment. No infection....YAY! For a day or so Emily had been having some discharge in her left eye that caused some concern on my part, but he said it could have been some of the stitches causing irritation and thats how it works itself out. No sign of infection and her eye still feels fairly soft. He was glad to see that there was minimal redness and no bruising.

We are to continue the medications she is on and only change something if Dr. Zaidman feels its necessary. Emily has surgery tomorrrow with him to have her stitches removed. Dr. Kane also wants us to ask Dr. Zaidman if he feels the first valve and tube are too close to the cornea. If he feels it is, he will take it out when he goes in to open up the tube on the new valve. The placement of the second valve is much better for a variety of reasons, one of which is that it is no where near the cornea and shouldn't interfere with the health of the transplant. It's possible that the original valve and tube were too close and caused some of the rejection or other issues.

I am praying for more good news about the left eye. Tomorrow...stitches come out. Need to be at the hospital by 7:30 am.

Follow up With Dr. Schubert

2009-09-15T17:05:00.003-04:00

August 25, 2009

Today we had a follow up with Dr. Schubert, the doctor who assisted Dr. Kane in Emily's last surgery. Her eye pressure wasn't tested with the machine, but he did feel her eyes and he can tell if the pressure is high or not just by how soft or firm her eyes feel. So far so good. The left eye still feels soft which is an indication of lower pressure. There was no sign of infection, which was one of our biggest concerns...infections in the eye are BAD...very bad. Her retina was still attached, I didn't know they were concerned about it not being attached so that was surprising for me to hear, but none the less good news. Her optic nerve looked ok, in comparison to how it looked 5 days ago in surgery I am not sure. Cornea and Lens Implant both looked very good and he was encouraged by how she was walking around and "seeing".

I think all her doctors are very surprised by how much vision she has right now, each doctor says the same thing. "Well she is seeing fairly well there is no doubt about that". Yes right now she is seeing well enough for her to get around and play, but her left eye has now become her better eye and shortly our focus will shift to the right eye in hopes that her vision will improve even more. Our ultimate goal is for her to have good usable vision in both eyes and to maintain low eye pressures.

We discussed options for starting the drops and Diamox again and he agreed that we should resume her medicine schedule as it was going to be about a month until the drainage tube could be opened and allow the valve to start working. I was actually relieved to hear that because although her pressure might be lower right now, it was only temporary. It would start to climb shortly and I wanted to try to get ahead of it with the meds if I could.

I left the office feeling good about how she was doing. There was minimal redness in her eye and no bruising which was nice because last time she had one wicked shiner going on. I would be seeing Dr. Kane the following week so hopefully we would continue to receive good news. Maybe this is the start of our lucky streak! Quick...lets go buy some lottery tickets! Strike while the iron is hot right? ! ? !

Post Op Pictures

2009-08-26T14:48:00.003-04:00

Here are some photos of Emily after her surgery, Sorry I couldn't remove the red eye...this is uploaded from the laptop and I don't have red eye reduction in my photo program.

The Amazing Dr. Kane

Emily 5 Days Post-Op - 22 Months Old

Surgery #13

2009-08-26T11:38:00.005-04:00

On Aug. 20th, Emily had her 13th surgery, a procedure that took 4 hours to complete. A second Ahmed Glaucoma valve was implanted in her left eye to help reduce her eye pressure. Dr. Kane had planned on placing the valve and drainage tube behind her lens implant, but that required a second procedure called a Vitrectomy. This procedure is done to remove all of the Vitreous fluid (the "gel") that fills the eye. I think I may have mentioned this in a previous post. Dr. Schubert, also an Ophthalmologist at Columbia, assisted Dr. Kane in the surgery and he performed the Vitrectomy.

My alarm went off at 5 am and as soon as I rolled over to turn it off, I felt sick to my stomach. I knew what was happening today and I just didn't want to get up and go. I stayed in bed for another half an hour and just cried. Why did she have to go through all of this in the first place? I couldn't stand to put her through more surgeries, how much more of this can she take? But then it was like a light went off in my head, if she didn't have this surgery, the pressure was going to damage her optic nerve and she would go blind. I had to get past the emotions of the day and just do what our little girl needed me to do, bring her to the doctors who could help her. So I wiped my tears away and got up out of bed...

We had to be at the hospital at 7:30 am as she was scheduled for 9 am, the first patient for Dr. Kane that day. This was wonderful because usually she is later in the day and we end up being there forever. I felt horrible because we had to wake the boys up at 6:00 to get them down to my mother in laws house, but if it meant that we could get to the hospital early and get home at a decent time it was worth it. Jason thought it would be a good idea to give the kids breakfast in the van on the way there, but he forgot that Emily couldn't eat so the poor girl was crying for "Baba" and "faffle" all the way to Grandma's house. It was heartbreaking! Once we dropped the boys off and we were on our way into the city, she calmed down though.

We got there and most of the nurses and staff recognized us, since we had been there so many times before. We had the same pre-op nurse as last time and she even remembered where we lived in NJ. It's nice when people get to know you and realize that you don't need to hear the same song and dance before each surgery...it gets really repetitive after a while. I am going to start carrying a list of all her medications with me and just hand out copies of it to anyone who needs to know. "Is she on any medications?? Yes, here's the list"....just seems so much easier than spouting off everything 3 or 4 times within an hour. OR...now here's a genius idea, READ HER CHART! Seriously...come on people.

Happy Juice -

For the first time ever, they gave Emily the 'happy juice' before we brought her to the OR. I was nervous because I wasn't sure how she was going to handle it, but she did ok. After about 10 minutes she started to get woozy, kind of mellow. She wasn't allowed to walk around so we had to hold her, which was a struggle because all she kept doing was pushing us away and saying 'down'. But once the medicine hit her, she couldn't hold her head up and started babbling silly stuff...she was buzzin for sure! Ha Ha...I never thought I would see a 22 month old drunk!

The medicine helped to calm her down and it actually made going into the OR much easier for her and us. Both Jason and I were able to go with her this time, so we both suited up and off we went. When we walked into the OR, the nurses had me lay her down on the table and she was calm as could be, normally she would have been fighting it but this time she was fine. She cried for a few seconds when they put the mask over her, but she was asleep very quickly. Both Jason and I kissed her and told her we loved her, then we left her in the very capable hands of her doctors.

I kept saying to myself, "lucky #13" as I walked down the hallway. As I turned down that last corner before the waiting room, I completely fell apart. I was trying so hard to hold it together, but I just couldn't. She has been through so much and knowing that there is more ahead of us has just overwhelmed me. I feel like we are running in place, going no where as fast as we can. This is her 13th surgery, and for those of you reading this who don't know, 13 is a very prominent number in our family, it's good luck for us - unlike most who feel it is bad luck. So I have to feel like this would be the surgery that would allow Emily to turn the corner in terms of her condition, the one that would change things for the better. I had hoped that we would never reach #13, but now it looks as though we will well surpass that number of surgeries.

Jason and I got something to eat and went and sat in the "magic garden" in the hospital courtyard. We had never been out there and since it was a nice day we decided to sit out there for a while instead of in the gloomy waiting room. We talked for over an hour, sometimes about Emily and sometimes about other things just to keep our minds off of what was happening. Then finally made our way back upstairs to the 4th floor. I had brought the laptop with me, intending on doing some writing while I was waiting, but I didn't get very far. I had no internet either so I couldn't even post here on the blog. I sat and wrote for about an hour and then had to switch my mindset, so I focused on sketching out how I wanted my son's birthday cake to look. He is having a Mario Kart birthday party and I am taking on the task of re-creating his favorite race scene as his cake. Ironically I used the internet on my phone to look up race scenes on YouTube to remind myself of what it looked like. Now why can't I use my phone to connect my laptop to the internet? I'm sure there is a way, just don't know how. It kept my mind off of things for a while and before I knew it Dr. Kane was calling us back to the recovery room.

He explained that she did well and the surgery was successful. While he was happy with the way the surgery went, he was VERY relieved that it was done. He stressed that her optic nerve didn't look good and it needed the help of this surgery to lower the pressure. I asked what that meant in terms of her vision and he said that "any damage that has been done has obviously left her with usable vision because she can see quite well". Her cornea looked very good and the lens implant was still in it's correct place, all things I had to be thankful for!

But the punch to the gut was that her pressure in her right eye was 24, and under anesthesia it's not accurate, but I guess Dr. Kane didn't like that number. He said he was going to reach out to Dr. Zaidman and ask what his thoughts were, but he felt that she was going to need the same course of action as what we have done for the left eye. This meant possibly another cornea transplant (or partial) and another valve to better control the pressure. That translates into an additional 4 or more surgeries, on top of the two we still have coming up in the next month....can I handle six more surgeries in the next few months????? Honestly I really don't think I can. I know, I know...everyone will tell me to take one at a time, but when you look at the big picture and realize that she will then have had a total of 19 it just seems ridiculous. She's not even 2 years old yet! Can SHE handle another 6 surgeries???

Dr. Kane wanted us to come to his office after we were discharged from the hospital so he could take the patch off. Normally he likes to leave it on overnight, but because he wanted us to continue with the steroid drops for her cornea he wanted to take it off before we went home. I didn't mind so much, but that meant we were still going to get out of the hospital later than we wanted to, still a long day even though she was first in the OR...we didn't leave until after 6pm. We were not to give her anything other than the Iquix and Durezol, and I still had to bring her back the next day.

She slept well that night and I brought her in to see Dr. Kane at 11am the next morning. Her eye looked very good, not too much swelling and no bruising like last time. Her pressure was still low, but he thought it would be beneficial to start the Timolol again. Dr. Schubert was going to see her next week and he could decide then whether or not to resume the Xalatan or Diamox. Because the valve wouldn't be working until the tube was opened in a month or so, she would still need the glaucoma meds in that eye.

We just have to keep doing what we are doing and hope that once the valve is working, that it will finally be the "fix" for the left eye and we can move onto the right. Since last March, her left eye has been the focus of all the doctors, and now that it seems to be doing well...it's time to work on her right (again). But before we can do that, she has to have the stitches removed, which is on Sept. 2nd and then the tube opened in about a month. I am PRAYING that this is it...lucky #13 will be what turns things around for her! It has to...

Good News/Bad News

2009-08-12T23:29:00.003-04:00

Good and Bad...Why does it have to be you can't have one without the other? I guess if you have just received bad news some good news would be welcome. But why is it that when you get the good news first, bad news always seems to be right behind it? It's like trying to run on ice, at first it seems possible but once you step onto the ice and get a solid footing, you try to start running and you end up flat on your face. I feel like I have been trying to run on ice for years now. But just when I need to believe that I can run, that I won't slip and fall...reality hits me upside the head and reminds me that I can't. SMACK! What was I thinking???

Good news...

Emily has been on the Diamox (oral glaucoma medicine) for about a week now. At her previous appointment with Dr. Kane, her eye pressure in her left eye was 28. Yesterday she saw Dr. Zaidman and her pressure was 20! Finally, something was working! The Diamox is compounded into a liquid form for Emily since it is only available otherwise in pill form. She's been on it a few times before, but it has never really worked all that well. It was also always hard to determine whether it was that or the eye drops that was bringing her pressure down. This time, it was obvious that the Diamox was the reason.

Dr. Zaidman was happy to hear of the lower pressure and said that her cornea looked really good as well. He doesn't need to see her again until the day of her next EUA in 3 weeks. At that time he will examine her eyes and potentially take out all or some of the stitches from the transplant. He won't be able to determine that until she is in the OR, but that is the plan.

I was so happy when I left his office yesterday, finally some promising news about her eye pressure! We've been struggling with it for so long and to know it has come down to a safer level made me feel like everything we've been doing for her has finally started to pay off. I wanted to call Dr. Kane and let him know that the pressure was lower, not expecting his plan for her surgery to change, but just to keep him updated on how she was doing. I decided to wait until today call him...

Bad News...

I was surprised to get Dr. Kane on the phone, he must have been in between patients. I explained about our appointment with Dr. Zaidman and told him about the lower pressure in her left eye. He sounded very pleased that the Diamox was working. He went on to explain that she still needed the surgery, which I figured. But then he drops this bomb on me..."Her optic nerve doesn't look good"...and to paraphrase the rest 'she needs the surgery now'.

I didn't feel the impact of that statement until I was telling my husband about my conversation. He was shocked, almost paralyzed with fear and I felt it too. We know that the ultimate consequence of long term high eye pressure is damage to the optic nerve which in turn causes vision loss. Was her optic nerve damaged? Is she soon going to lose the vision that she has in that eye? What does it 'doesn't look good' mean?

I could hear the panic in Jason's voice. He told me that he felt like we were losing time, precious time that we might not be able to ever get back. "I feel like I need to come home right now and spend as much time with her as I can, so she'll remember what I look like" is what he said. I immediately knew how he felt, my heart sank and I started to cry. I literally had to take a few deep breaths because I felt sick to my stomach. I decided that I needed to call Dr. Kane back and have him explain to me exactly what he meant by what he said.

I'm glad I did. While the bad news ended up not being so terribly bad as I thought, it was still not good news either. He explained that because of her clouded cornea, he previously was not able to even see her optic nerve so he had no idea what condition it was in. But since she had the transplant and her cornea was now clear, he was able to see that it showed signs that the high eye pressure she's been dealing with for a year and a half was taking it's toll on it. I asked him straight out if she was losing her vision and he said no, not yet. She needs the surgery and the second valve to get the Glaucoma under control so that her optic nerve isn't damaged any further. The damage and vision loss that would result is irreversible. We knew this, we've known this for almost 2 years now. But it was never the forefront of our thoughts and daily lives, until now. Now we are playing beat the clock...do the surgery asap...then wait a month before the tube can be opened and her pressure better controlled. Protect her optic nerve at all costs...

I felt better after I talked to Dr. Kane the second time, but my outlook on things have changed none the less. I don't want to take the vision she has for granted. I really never have, but up until recently we were focused on being thankful for what she can see and not push our expectations too far. Now, I want to show her everything...if she can see fairly well right now, I want her to see things that will leave a lasting impression. She's not even two years old, so I can't expect that she will remember much of this as she gets older. But exposing her to the beauty of our world now, may stay with her for the rest of her life. God forbid she ever does lose her vision, at least I can say that while she could see, she saw amazing things.

In a way, the bad news we heard today seems to have given me a swift kick in the ass. Don't waste time, don't sit around and dwell on the sadness and fear. Instead get up and show Emily our beautiful world, this may be our only chance. The regret I might one day feel will also be irreversible.

So with the good, comes the bad. But sometimes it's the bad that impacts you in a much more profound way. It did just that for me today...

Tomorrow, we will see beautiful things!

Fighting For Sight - Emily's Story

2009-08-04T14:42:00.001-04:00

This is a news story that ran on Verizon FIOS News and RNN about Emily in July/Aug 2009! Spreading the word about Emily's condition and her struggle is just one more way to reach others who may be struggling in the same way...please feel free to share this with friends and family.
~Jennifer

More Surgery...More Medicine

2009-08-04T12:57:00.003-04:00

Emily had an appointment with Dr. Kane in NYC yesterday. I was hoping for good news, but nothing he said surprised me so I was pretty much prepared for it. Her pressure in the left eye is 30, which is up from where it was at 26 last time. I knew it was up because of how her eye looked over the weekend (see my previous post below). This means that the Pilocarpine wasn't working, I figured it wouldn't.

He did an ultrasound on her eye and was able to determine that the valve was in fact still working, so without that her pressure would be much higher. But one valve is not enough to keep up with the amount of fluid her eye produces, so she will need the second valve put in. I expected this because Dr. Kane had been talking about it for months now. She was supposed to have this done back in April but because of the tear in her cornea, he had to address that instead.

This will be a two step process, essentially it's takes two surgeries to complete. She is scheduled for August 20th for the first surgery to implant the valve. At that time she will also have a second procedure done called a Vitrectomy. This procedure is done to remove all of the Vitreous fluid from her eye. The Vitreous fluid is the clear gel that fills the space between the lens and the retina. It has to be completely removed in order for Dr. Kane to place the valve behind her lens implant, otherwise it will clog the drainage tube and the valve won't work. I asked yesterday if there were any negative consequences to removing the fluid and he said No. The fluid is important during the embryonic stage of eye development but really serves little purpose now and she will be fine without it. (That's a relief). I met the doctor who will be assisting Dr. Kane on the surgery and he seemed very nice and said he would take good care of her. I have trust in these doctors like no one else. They have my baby girl's vision and life in their hands and I HAVE to trust them. I have no choice. If I didn't trust them, she wouldn't be having the surgery at all.

Placing the valve and tube behind the lens implant is the best case scenario for her. It will keep it away from the cornea and hopefully won't be a factor in causing her cornea to reject. During the second cornea transplant in June, Dr. Zaidman actually shortened the drainage tube on the first valve because he didn't like how close it was to the cornea, so the further away the better.

The second step of the surgery will be about a month later when she will go back into the OR and Dr. Kane will use a laser to cut the sutures that are holding the drainage tube closed. Once the tube is open and the valve starts to work, her pressure will be immediately lower...and we hope it will stay that way. The only downfall to this is that between now and when she will have the tube opened is almost 2 months, so what do we do in the meantime to lower the pressure? Dr. Kane suggested that she go back on the Diamox (acetazolamide) oral glaucoma medication since we know most of the eye drops are not working. This will help both the left and right eyes since it's an oral medication. The pressure in her right eye was 20 yesterday, which is good, so if it can be lowered even further that would be great.

Another suggestion he had would be for him to irrigate the existing tube while he is implanting the second one, which will allow more fluid to flow through and give her a few weeks of lower pressure. Dr. Zaidman did this during the transplant and we believe that it worked at least temporarily.

We are stopping the Pilocaropine, but adding the Diamox. Other than that all her medications will stay the same. So I now have to either go back to the compounding pharmacy where we've filled that prescription before, or try to find one that is more local. Necessary, but none the less frustrating...

So far we know that Emily has three upcoming surgeries:

August 20th - Glaucoma Valve Implant
September 2nd - Removal of the Stitches from the Transplant
September ? ? - Opening Of The Drainage Tube

We also know that at some point Dr. Zaidman is planning on doing a partial transplant on her right eye. He will only be replacing the top 3 layers of her cornea to remove the scar tissue that formed from the ulcer and infection she had last year. When that will be I don't know, and at this point I really don't need to think about it. Between all the doctors appointments, surgeries, school starting, Tyler's birthday in September and Emily's birthday in October I've got enough on my calendar to keep my head spinning for months.

Each day, I do the best that I can do to keep up with all of life's obstacles. Sometimes I trip and fall, but I always get back up and try again. Today is no different.

Small Changes

2009-08-02T21:06:00.003-04:00

A friend asked me last night if Emily's eye looked bigger. At first I thought she was talking about how one eye looks bigger than the other. But then I realized that she meant 'Does her eye look bigger than the last time I saw her'. I tried getting a good look at it but couldn't, she just is so active and doesn't sit still very long anymore so my best guess was to say "yeah, it probably is".

Sometimes when people ask if her eye is bigger, I know they are referring to her left eye looking larger than the right because the area where the graft is, is much larger. Typically children with glaucoma do have eyes that are larger than normal and even one that is smaller than the other. So far I think Emily has maintained a relatively normal size eye, with the exception of before the second transplant in her left eye when her pressure was high. At that point she had (for lack of a better word) areas that would 'bubble' out, those were the weak areas at the top of her cornea. It was horrible to look at and sometimes it would make me physically sick to my stomach. Not because it grossed me out, but mainly because I was scared for her and knew that those areas were very thin...what would happen if those areas ever broke open? It would be a disaster for her. After each surgery it would flatten out, but then slowly would start to bulge out again.

Since her cornea surgery back in June, I have not seen anything close to what we were used to seeing in her left eye. Maybe I was overlooking it? Maybe I saw it but never acknowledged it because the doctors always said she looked ok? I see her all day, everyday and maybe I simply just didn't notice the change because it has occured so slowly and it wasn't as noticeable as it was in the past. People who don't see her everyday can pick up on how different she looks more easily than I can. I guess it's kind of like when someone tells you that you look like you have lost weight, but you haven't noticed it yourself...small changes go un noticed until someone else points them out.

First thing this morning I took a good look at her eye and yes, I see it does look like it's started to bulge out again. This time it's her whole eye, not just the weak areas at the top of her cornea. It's more noticeable when she looks down or closes her eye because you can see the difference in how large her eye lids are. My heart sank, but I knew that the pressure was still elevated and didn't expect the Pilocarpine to really work any kind of miracle, so it's not a surprise. Thankfully we go to see Dr. Kane tomorrow and I can voice my concern to him right away. If she needs the surgery for the second valve, I want her to have it as soon as possible. The higher pressure can compromise her new cornea and she can't afford to have this one reject just because of the glaucoma. She is doing so well right now visually and I don't want that to change.

I'm thankful that my friend pointed this out to me, otherwise I might not have been so aware of what was happening. Hopefully now I can push Dr. Kane to go forward with the surgery sooner than later.

I hate that this is a never ending battle.

Two More Mom's with Peter's Kids

2009-07-30T20:50:00.002-04:00

Just this past week I was contacted by two more mom's who have a child with Peter's Anomaly. I cannot believe it, it's like so many pieces to this crazy puzzle are falling into place. Both mom's found me on facebook and then read my blog. In doing so they realized that their situations are so similar to mine and none of us are alone anymore.

One mom, Catherine, is from the UK and flys here to the United States to have her son seen by a doctor in Rochester NY. Her son Bobby is 5 months old and had KPros (synthetic corneas) implanted to allow him to see. That was last week, and while she was here she found me on facebook! I can't wait to get to know her and all about her family!

Another mom, Yvonne, is from Florida and also brings her 5 year old son Sam up to Rochester NY to see that very same doctor. He originally had donor transplants like Emily has, but they rejected quickly, so they turned to this doctor (Dr. Aquavella) and their son now has the KPros implants as well. Sam has Peters' Plus, which means he has other health and developmental issues in addition to the corneal problems.

I called and spoke with Yvonne last night for over 3 and 1/2 hours and it was wonderful to talk to another mom who has been in my shoes and can completely relate to EVERYTHING I have been through. We talked and laughed for so long and have so much in common. By the end of the conversation (which was after midnight) I felt like I had known her for years! Yvonne has a blog as well and I hope you will check it out and learn about her little boy and his struggle. Her blog address is:

http://myreallifebyyvonne.blogspot.com/

I am so excited that I'm making these connections, it's so important to me and I'm sure they feel the same way too. We know exactly where each other has been and how each other is feeling. This is going to be a rough ride, but we are here for each other now and that is a blessing!

Appointment With Dr.Zaidman 7/27/09

2009-07-30T20:00:00.006-04:00

Emily had a doctors appointment this past Monday with Dr. Zaidman. I was nervous about it because after her allergic reaction to the new eye drops I wasn't sure what he was going to say or do. After briefly meeting with a resident doctor and going over her medications and the specifics of the reaction she had, we were moved into the back waiting area. Once Dr. Zaidman called us into an exam room he brought another resident doctor in with him. She had never seen Emily before and he was telling her about her latest surgery and how he hopes to do a partial transplant on her right eye to replace a few layers of the cornea where scar tissue has formed.

She is now 7.5 weeks post-op and after examining her, he told me that the cornea looks very good and the lens implant is still in a good position. We talked about her reaction to the new medicine and he said that if Dr. Kane really felt it was necessary for her to have the surgery to implant the second tube, then he would have to go with what he felt was best. But he was hoping to try one more medication before resorting to the surgery...(the Pilocarpine that she is now on).

The resident was curious about how well she could see, and at this point Emily had already gotten down off my lap and was walking around the room. What Dr. Z said next hit me like a ton of bricks..."well obviously she is seeing, and she is doing remarkably well considering what she has been through". My heart just about jumped out of my chest! For him to say that really made me feel as though he was truly impressed with how well she is doing and how far she has come. If he thinks she's doing "remarkably well"...that's music to my ears. Despite the cornea rejecting and the constant battle with Glaucoma, she is still prevailing..she is a fighter for sure! I will never give up on her and I know she will never give up on herself. For a 21 month old little girl, she sure has more strength than any adult I know...

She has become a little bit "sassy" over the last couple of weeks, since she learned how to say NO! She had already (on her own) learned how to cross her arms when she is mad or upset and that combined with 'NO' is just setting the stage for her to tell everyone exactly how it is! She will not settle...she will not back down...she will fight for what she wants until she gets it. She WILL be able to see, she WILL do everything a child with 'normal' vision can do...she will prove everyone wrong...and in the process teach us as adults a very valuable lesson in courage.

I love you baby girl....you are such an inspiration!

Trying Yet ANOTHER Medication

2009-07-29T18:15:00.002-04:00

I called Dr. Kane yesterday to try and find out if they had any luck scheduling Emily's Glaucoma surgery, expecting to hear "yes, it will be Aug. ____. Instead Dr. Kane told me he has consulted with Dr. Zaidman again and he wants to try another medication before doing the surgery. I guess thats a good thing, but I just feel like it's delaying the inevitable again. Time is something she doesn't have, and neither do I. School is starting again in about a month and I know all of this is going to land in my lap just as the boys start getting into their school routines. It's bad enough that she has been scheduled for surgery to take the transplant stitches out on Sept 2nd, the day before Matthew starts school. I want to reschedule it so bad because I want to spend that LAST day of summer with the boys and really have fun with them. No one consulted me on the date and I just feel like at this point does one more week really matter? They've been in already for almost 2 months...I might just call tomorrow and tell them that I have to change it. My family needs me that day.

Anyway, Dr. Kane called in Pilocarpine, which she has already been on once before. But this time it's only 1% instead of 2%...not sure what the difference is, but its too bad we can't use the 2% because I already have a whole bottle...

More money out the window...

We have to give this to her 4 times a day (in addition to everything else) and he wants to see her on Monday to check her pressure. God willing this will work, we can postpone the surgery...but I doubt it.

Still Searching For Help

2009-07-29T17:02:00.010-04:00

A month or so ago, our social worker started checking into a program or 'fund' that might help reduce the cost of Emily's prescription eye medications. I spoke to her this morning and not one single medication qualifies for or is part of the program. What the hell??? Can't we catch any kind of break here?

I've exhausted just about every avenue that I can think of for financial assistance for Emily's medical needs/expenses. We don't qualify for reason X, Y or Z....

My next (and probably last) option is to look into the Catastrophic Illness in Children Relief Fund.

http://www.state.nj.us/humanservices/cicrf/home/index.html

What is the Catastrophic Illness in Children Relief Fund?

The Catastrophic Illness in Children Relief Fund is a financial assistance program for New Jersey Families whose children have an illness or condition otherwise uncovered by insurance, State or Federal programs, or other source, such as fundraising. The Fund is intended to assist in preserving a family's ability to cope with the responsibilities which accompany a child's significant health problems.

To be Eligible, In any prior, consecutive, 12 month period, dating back to 1988, eligible expenses must exceed 10% of the family's income.

In speaking this morning with Andrea, our early intervention district coordinator, she advised me to look into this as an option for Emily. Now that we have over 12 months in previous medical expenses for her, we can apply. But I'm sure we'll have to furnish a world of paperwork, receipts, cancelled checks, bills etc...to prove what we've spent out of pocket in those 12 months. It won't be that difficult since I have everything organized fairly well, but it's just more red tape we're going to have to cut through. And who knows how quickly we'd get reimbursed if we did qualify and they chose us. It could be MONTHS before we get any answer or see any kind of money...and that's if we meet the minimum 10% threshold.

The one good thing is that we can apply for every 12 consecutive months since you are applying for reimbursement of what you've already paid, so we will shortly be able to apply for the last 2 years. I called today to request the application so we'll see what happens.

My Breaking Point

2009-07-23T21:18:00.003-04:00

Where is my breaking point? I don’t know if I’ve been there already or if it’s still out there somewhere. Maybe I am there right now, who knows. I’m tired of all the twist and turns of this roller coaster and I want to get off the ride. I’ve run out of tickets so why can’t my turn be over? Just when you think you have gotten to the point where it’s going to slow down and maybe even come to a stop, the track either drops out from underneath you or you get whiplash from the sharp turn it takes.

I am trying to be strong. I am TRYING to be strong. Strong for my daughter, strong for my family, strong for my husband…but what happens when I need someone to be strong for me? I can only be strong for them when I, myself am strong. Right now I feel anything but strong. I feel like I am falling apart.

Everyday is a struggle. I know everyone has bad days, but I feel like I have more bad than good lately. Normally I am pretty even keeled about Emily’s condition, only getting really emotional when something major is happening like a surgery or EUA. Today I’ve broken down multiple times and found myself asking why I can’t seem to keep it together. I still haven’t figured out the answer to that.

I am so tired of seeing her suffer. She has been through so much and I just can’t stand to think about what her future holds.

Maybe I've been to the brink of my breaking point before. Are we allowed to reach that point and then recover from it only to start heading towards it again? Like a rollercoaster... you get to the bottom of the hill only to start climbing towards the top of the next one...

Allergic Reaction To New Eye Drops

2009-07-23T21:16:00.001-04:00

Before we left for vacation, I got a phone call from Dr. Zaidman’s office saying that he wanted her to start a new eye drop for the Glaucoma, something called Phospholine Iodide. Lets just say we went to the ends of the earth to find this medicine and even had it shipped overnight from the pharmacy at home to where we were staying at the shore. Today is the third day she’s been using it and I recognized the signs almost right away… she was having an allergic reaction to it. Her eyes are slightly bloodshot, her eyelids are red and puffy, she has been unhappy for most of the past 3 days and the only time she really is not crying or cranky is when she is sleeping. She slept all of Tuesday afternoon and then was up two or three times in the middle of the night crying. Yesterday she took a morning nap and fell asleep at the beach for at least an hour or more. That is just not like her.

This is exactly how she acted when she had that reaction to the ointment we had mixed up at the compounding pharmacy last year sometime. I finally called Dr. Zaidman and Dr. Kane this afternoon and they both agreed that we should stop giving her the drops. All the shit we went through to get that stupid medicine and she’s allergic to it???? It figures. But now the reality of her needing the surgery for the second valve is at the forefront of my mind again. Not that it ever really left, but at least for a little while I wasn’t really thinking about it as much.

We started this fight a year ago…we were on vacation anticipating that Emily would need surgery to implant a valve in her eyes to control her eye pressure. Six surgeries and 2 EUA’s later, the Glaucoma is still winning. It took her vision once already by causing the rejection of her first cornea transplant in her left eye. Now that she has had a second transplant and a new chance to see, we hope that we can finally find the right combination of treatments for her and once and for all get her pressure lowered and keep it there. Here we are one year later, again on vacation trying to enjoy time together as a family. Instead of being able to shut out all of what is happening to us/her, I have spent most of my vacation agonizing over yet another 3 surgeries she will need to have in the coming months. By the time she is 2 years old, she will have had 15 major surgeries. I just can’t seem to get that number out of my head.

Finding New Connections

2009-07-12T12:03:00.004-04:00

Within the last week I have been contacted by a few other mom's who are in similar situations as I am. Just yesterday I received a friend request on Facebook from a mom who found me through a Congenital Glaucoma group. Not only does her son have Glaucoma, but she also lives in NJ and sees the same doctors as Emily does! Her son is 2 years old and is waiting for a cornea transplant with Dr. Zaidman. Plus, after she had already found me on Facebook, she was told about an article in the paper about a little girl with eye problems. She read it and realized that it was Emmy's story! I had goosebumps reading her email as she described all the similarities between her son and Emmy, and how she came to find me. Truly amazing! I'm sure her and I will form a great friendship, we are already connected in such a powerful way.

Then last night I received an email from another mom who said she sat and read this entire blog! Her daughter also has a visual impairment and she wanted to let me know I am not alone. She gave me the address to her blog as well. I am so touched by all these new connections with other parents, this was the reason I started this blog in the first place. I had tears in my eyes as I read some of the posts...I truly wasn't alone. There are other people out there who are going through the exact same thing as I am. They are finding me and I am finding them.

Katie's blog address is:
Maddy News - http://visualimpairmentsmaddy.blogspot.com/

In reading her blog I also came across another blog about a baby struggling with a visual impairment. I started to scan through some of the posts and found out that this little girl, named Lilah also has Peter's Anomaly. I was again in tears reading some of the posts.

Her blog address is:
Lilah's Hope - http://lilahhope.blogspot.com/

Please check them out, these families are struggling in the same ways we are and they need our support too.

Eye Drop Schedule

2009-07-11T11:20:00.002-04:00

As it stands right now, this is Emily's daily eye drop schedule:

Timolol - Twice a day in both eyes (for Glaucoma)
FML - Twice a day in Right eye only - (Steroid to prevent transplant rejection)
Iquix - Once a day in Right eye, Four times a day in Left eye (Antibiotic)
Durezol - Six times a day in Left eye only (Steroid to prevent transplant rejection)
Xalantan - Once a day (at night) in both eyes (for Glaucoma)
Cyclopentolate Hydrochloride - Once a day in Right eye only (to dilate pupil)

Her medications and the frequency that she receives them are changed often. It's not only confusing but expensive as well.

Sadly each of these medications only come in a small bottle and have to be refilled every 3 to 4 weeks...to tune of $50 each, that adds up pretty quickly.

5 Weeks Post-Op

2009-07-11T10:32:00.001-04:00

We are now 5 weeks out from Emily's last cornea surgery and so far so good. We had our regular appointment with Dr. Zaidman yesterday. We sat in the waiting room for about 2 1/2 hours before we were seen, which isn't a surprise, but we haven't waited that long in quite a while. I know it's worth the wait to see him and have him make sure everything looks ok, but with Emmy walking now it's so hard to keep her occupied for that long. Next time I'm going to pack a bag full of really noisy toys and maybe that will get us out of the waiting room faster! (yeah right). I have to remind myself that Cornea Transplants and Glaucoma are not common in babies or children. I am usually the only one there with a baby or young child, everyone else is probably at least over 60. We are the rare case, the exception to the rule.

We were seen by one of the resident doctors first, she didn't do much other than look in her eyes with a light and go over her medications...then we were shuffled into the back of the office with the other 6 or 7 people already waiting there. Because of her stroller, I had to stand in the hallway and chase her around...ugh.

Finally it was our turn and Dr. Zaidman came in and examined her. He could see that her left cornea was very clear and looked great. Her lens implant also looked very good. We talked about her appointment with Dr. Kane just 2 days before and he agreed that if he felt that implanting a second valve would be the best option for her right now that it was his call and he was ok with it. He did mention that he would email Dr. Kane and ask him if using either Pilocarpine, Phosphone Iodide or Azopt in addition to the other two Glaucoma drops she is already on would be an option. Apparently some doctors don't like to use Azopt when a patient has had a cornea transplant, but he felt it was worth mentioning to him. For right now none of her medications have changed and her eye drop schedule will stay the same. I guess that's good since it's so hard to keep track of everything as it is.

We also talked about timing of the surgery since he wants to bring her in possibly in August to remove the stitches. That was all left up in the air for right now and will depend on when Dr. Kane wants to do the Glaucoma surgery. We scheduled the next appointment for the Monday after we come back from vacation, so I will get a 2 week reprieve from her doctors visits. Unfortunately the rest of my summer will be spent in doctors offices and hospitals for the second year in a row...

No End In Sight

2009-07-08T23:18:00.002-04:00

Today I took Emily back into Manhattan to see Dr. Kane for the first time since her cornea transplant. He was very happy with the way her cornea looked, he said it was very clear and he could see her retina and optic nerve well. Her eye pressure was 26 in both eyes, which is just ok... not great...but not completely terrible either. He's not changing any of her medication, but we talked about following through with the plan to insert another valve in the left eye.

The one valve in the left eye is not enough to control the fluid build up, so she will need to have a second one implanted to help maintain a lower pressure. This was supposed to happen months ago but that plan had to be postponed because of the perforation she had in her cornea. Dr. Kane said that he could see her optic nerve and it would benefit from having lower eye pressures. He didn't say that there was damage, but the fact that he said he could see it and it would benefit from the lower pressure leads me to believe he saw something he didn't like. That really scares me. Once damage is done, it is not reversible. If she loses vision in that eye because of it, she can't get it back.

He was encouraged by where the lens implant was placed, it allows her good vision at a close distance. It also opens up alot of possibilities for treatment for her because now there is plenty of room to place the new valve behind the lens, keeping it away from the cornea graft. The further away the better the chance it will not compromise it. Dr. Kane also mentioned that he is considering taking out the old valve and replacing it with one that will work more effectively. He suggested doing the surgery fairly soon, but how soon was not decided. We are going away next Friday for a week at the shore, so it will wait at least until we get back. But that feels way too familiar. This exact scenario happened last July when we were scheduling her first Glaucoma surgery. We went down the shore for a week and came home to a surprise surgery 2 days later. I really don't want to stress about that the entire time we are away. Can't I do anything for just a few days that doesn't require me to think about any of this??? I deserve a vacation from this too you know.

Dr. Kane sent an email to Dr. Zaidman while I was in his office. He wants to get his opinion on how soon he would feel comfortable allowing her to have another surgery. It's bad enough that she will be going back into the operating room in August to have the stitches removed from the cornea transplant, but now she'll have to have the Glaucoma surgery too. And it's a two step process so about a month later she'll have to go in AGAIN so Dr. Kane can open the drainage tube on the new valve. Lets count them....That's 1...2...3 surgeries that will need to take place within the next 2 months. That means that by the time she is 2 years old she will have had at LEAST 15 surgeries. And that's not including any further exams under anesthesia she might need. That total will be coming close to 2o by October.

With 3 more impending surgeries, I just can't help but feel discouraged today. I know that her cornea looks good and so far is doing very well. And I know the valve needs to be replaced to better control her Glaucoma. And I already knew that these surgeries would be coming up. But when you look at the big picture and realize what she has been through already and what she still has to go through, it is just overwhelming. She doesn't deserve this.

A good friend asked me today if there was ever going to be an end to her surgeries. Sadly we will never be able to answer that question.

New Drug To Prevent Corneal Rejection

2009-07-05T22:47:00.003-04:00

I found this article online and thought it was really interesting. I'm not sure if it would be something Emily would be able to benefit from at this point, but worth mentioning. I wish she could be part of the trial study.

LUMITECT (LX201) The only drug to prevent corneal transplant rejection is ready for phase 3 trial

Cornea is generally a tissue that is not vascularized, does not contain blood vessels and thus is less prone to acute rejection, the rate of rejection reactions in high risk corneal transplant patients is in the range of 50 percent over one year.

Lux Biosciences today announced the completion of enrollment in the company’s phase 3 LUCIDA (LUx Corneal Transplant Implant Development and Advancement of Therapy) clinical trial program for LUMITECT™ (LX201).

LUMITECT is a silicone matrix ocular implant that steadily releases therapeutic doses of cyclosporine A locally to the eye for one year. LUMITECT is implanted under the eyelid into the subconjunctival space (the area beneath the transparent tissue covering the white of the eye) in a minimally invasive procedure.

Lux Biosciences is evaluating the implant clinically for the prevention of rejection in corneal transplantation. LUMITECT has received Orphan Drug status in both the United States and Europe, and Fast Track status in the United States.

Ulrich Grau, Ph.D., President and Chief Executive Officer of Lux Biosciences says that they are very gratified to have reached this important developmental milestone for LUMITECT, a therapeutic product candidate that has the potential to address a major medical need for which there are no currently approved treatments.

According to the official report from Lux Biosciences, data from the first of two pivotal LUCIDA studies is expected later in 2009, while data from the second study would become available in the first half of 2010.

At present approximately 32,000 corneas are transplanted each year in the United States and an additional 22,000 in Europe.

Source: Business Wire

* * * Here is the original article: http://eye.taragana.net/archive/lumitect%e2%84%a2-lx201-the-only-drug-to-prevent-corneal-transplant-rejection-is-ready-for-phase-3-trial/#more-1316

No Glasses Needed!

2009-06-27T17:12:00.001-04:00

Emily had an appointment with her regular Ophthalmologist, Dr. Morgan, on Thursday and he was very impressed with how well she is doing. Her corneas looked good. No scratches or ulcers. And he couldn't believe at how well she was walking around and engaging in everything she saw. "It's obvious she is seeing, If I didn't see it, I wouldn't believe it" he said.

She is slightly nearsighted but he feels she is doing well enough right now that she doesn't need glasses! I was so relieved at that because it's just one more thing for me to keep track of. We fought with her last summer with the glasses and now that she is a toddler with an opinion, I know she would probably hate wearing them. And if she's seeing well enough that she doesn't need them...then thats just FANTASTIC!

We don't need to go back to him for 4 months....she'll be 2 by then!

Finally, some good news...

Meeting With a Social Worker

2009-06-25T23:44:00.006-04:00

A few months ago I got a letter from my insurance company that made my heart jump out of my chest. It's purpose was to tell us that the hospital that Emily's goes to for her cornea surgery and care, was no longer a participating hospital. I went into panic mode...her surgery was coming up soon, so now what? Out of network benefits? What was our deductible? Fighting with the insurance company about which procedure code was covered and which ones weren't? I didn't need this, not now....

That letter lead to a conversation during one of Emily's therapy sessions. It was actually an annual review meeting with Linda her therapist, Andrea the early intervention district coordinator and Terri from the Commission for the Blind. I had mentioned the letter and questioned what services might be out there for us to utilize in a situation like this. There was a suggestion that maybe a social worker might be helpful to us, maybe she could help us tap into local or state resources.

A month or so later, I met with Julie who was assigned to Emily's case. At our first meeting I was encouraged by what might be out there for us. I had already applied back in January of 2008 for SSI (Supplemental Security Income) but we didn't qualify based on income. Everyone I talk to can't understand how we wouldn't have qualified because of the severity of Emily's condition, but apparently you have to basically be living in a cardboard box in order for the state to even look at your case. I can't remember what the income level was for a family of 5 but we were above it...that doesn't mean we can afford hospital bills, prescriptions and various other expenses that we incur because of Emily's condition. Who gets to decide that if you make X amount of dollars a year, you can afford to have an ill or disabled child? ? ? I think that is a bunch of crap, if the government can bail out all these major corporations because they screwed up their business and handled their money poorly, why can't they help a small family pay for their 18 month old's Glaucoma medication, or transplant surgery to enable her to see? I guess we made too much money and should budget better...

Julie had given me hope that she could come up with something we would be able to utilize, but at our next meeting she had nothing. She kept coming up with possible parent support groups, local clubs that might offer medical equipment if needed down the road and random other stuff. The support groups and local club information was great, but that wasn't what we needed. We needed financial help and she wasn't finding any.

At our next meeting, she once again really didn't have any information for me about financial help. She called Terri and spoke to her about a few things related to the commission, but Terri said that alot of the financial help and equipment related expenses that they were able to help provide families with in the past was not available anymore, mostly because of cutbacks in the program and the economy. The only 2 questions that we got answers to were ones that I asked...1 - how does the commission follow Emily through into school and 2 - what if Emily needed glasses, would they still be able to help provide them? I learned that once she turns 2 (which is 4 months from today) we should contact the school district and start the testing and evaluation process to qualify her for preschool....PRESCHOOL? Holy crap...Emily is going to be in preschool next year. WHAT? No, this can't be...this is my baby, my little girl who just started walking 2 months ago, I am sooooo not ready to even think about her going to school. But I guess the process takes a while, so she suggested getting her into the system as early as possible. As for the glasses, apparently the commission now works with Lens Crafters and can provide a voucher for one free pair of glasses per year. Good to know now that the place where we got her glasses last year is gone. Hopefully we won't have to worry about that anytime soon, but at least we know it's there in the event that we do.

Ironically the two bits of information that I found helpful were answers to questions I asked as she was walking out the door. Re: Fundraising...how would that work? So many people have asked me about setting up a fundraiser for Emily, but I have no idea how that would work, or even if I would feel comfortable setting it up for her myself. She told me she would get information for me and let me know what she comes up with. The other thing I mentioned was about the ridiculous cost of all of her medications....then all of a sudden she says...oh give me a list of what she's on and we can work with the pharmaceutical companies on subsidizing or eliminating your out out of pocket expenses.

I hope she can come up with something, we are barely keeping our heads above water with these medical expenses.

2nd Cornea Transplant and Cataract Removal Left Eye

2009-06-25T22:44:00.002-04:00

June 4th 2009:

Emily had her second cornea transplant in her left eye today. She also had a cataract removed and a lens implant put in.

This could very well be her last chance for a clear cornea and vision in her left eye. Dr. Zaidman had previously told me that if this one rejects, he's not sure he would feel comfortable doing the transplant a third time. With each surgery, the success rate drops. But hopefully we wouldn't have to go down that road.

We arrived at the hospital very early, went through the standard pre-op waiting...waiting...waiting...a few eye drops for dilation and antibiotics to avoid infection. Finally the nurses said it was time and I put on my white bunny suit and blue surgical cap that has become so familiar to us. I held Emily as we walked down to the OR doors and Jason said a teary goodbye and I love you to her, then I continued on with the nurses as the doors shut behind me. This time there was no 45 minute wait, we went straight into the OR where Dr. Zaidman was already waiting for us. The anesthesiologists quickly instructed me to lay her down so they could get started right away. She cried and put up more of a fuss than usual, but once the mask was on she calmed down. Within seconds she was asleep. I held her hand, kissed her cheek, told her I loved her and that I would be there when she woke up. "Be strong baby Girl" were my last words before I let go of her hand and walked away.

I walked back out into the hallway in tears, trying to get the bunny suit off before I completely fell apart. Once I saw Jason and we hugged, I just let it all out. I was so scared for her, this was her 12th surgery...how much more of this can she handle? We slowly walked down the hallway and made our way out of the surgical area. I was starving and food seemed to be the only distraction I could think of at the moment. We went to the cafe, milled around for about 10 minutes before I finally decided on just a muffin and soda. We went and sat down in the back corner by a window. We didn't talk much, just ate our food and kind of sat in silence for a while. Jason put his ipod earbuds in and fell asleep, I emptied my purse and organized my wallet...anything to keep my mind off of what was happening. I sent a few text messages, talked to a friend for a few minutes and then resorted to just sitting and thinking.

I hate sitting in the waiting room, it always feels like time goes by so much slower. We sat in the cafe for about another half an hour before I woke Jason up and we walked down to the gift shop. I got a candy bar and picked out a cute stuffed animal for Emmy. It was our tradition, she always gets something from the gift shop. I wanted to get another puppy for her since she seemed so in love with the one we gave her a few weeks ago from her last surgery. Jason said "it doesn't matter what kind of animal you get her, she's still going to call it a puppy"...it was the first time I had smiled or laughed all day. I settled on a cute golden retriever.

We walked back down to the waiting room and sat down. I had just gotten comfortable, put my sunglasses on to make it darker in the room and closed my eyes, hoping to catch a small nap. Within minutes Dr. Zaidman popped his head in and said she was done. He talked with us as we walked back to the recovery room. He said she did very well, and he was very pleased with how the surgeries went. She did receive the lens implant to replace the cataract that was removed, and with the new cornea, we held high hopes that her vision would be intact and much better than it was before. But we'd have to wait until the next day to find out.

We went back into the recovery room where she was still waking up from the anesthesia. She was hungry, thirsty and just needed to be loved. I held her for the entire time we were in recovery and she drank as much as she needed to. We were released fairly quickly and instructed to come back first thing the next morning to see Dr. Zaidman. She slept all the way home and when we got there she was walking around fairly well even with her eye patched. She had no problems sleeping overnight, neither did we...we were all exhausted.

When we arrived at the hospital the next morning, I was nervous. I couldn't wait to see what her new eye looked like and how it changed her perspective on the world. We took the patch off and I could immediately see how much better her eye looked. It was not cloudy anymore, it was clear! Her window to the world suddenly got much clearer and I'm sure she knew it. Her doctor was very pleased with how it looked and explained the new eye drop schedule. The swelling wasn't bad either...and no bruising! It felt amazing, she had been given another chance to see and you couldn't get me to stop smiling.

When we got home, she was back to her happy self...playing and asking for 'cracker' and 'ba ba'. You could see that her vision was better, she wasn't hesitating as much while walking around and she just had this new found confidence.

It was awe inspiring...she could see again.

Perferation in Her Cornea

2009-06-25T22:33:00.000-04:00

April 2009:

Yet another surgery to treat the Glaucoma...

Emily would be having the second cornea transplant and cataract surgery soon, but the pressure in her left eye needed to be brought under control first. At the last appointment with Dr. Kane, her eye pressure in the left eye was 28, normal is between 10 and 20. During an ultrasound of her eye, Dr. Kane was able to see that the valve and drainage tube was still working. Her eye was producing more fluid than the one tube could handle, so the plan was to put a second tube in to help drain the fluid more efficiently. However, a complication came up at the hospital even before she was in the operating room. Dr. Kane came to talk to us and check Emily out and was alarmed at what he saw. He believed that the weakened area of her cornea actually had a small perforation in it and if that was the case it would have to be taken care of quickly. He immediately called and spoke with Dr. Zaidman, her cornea doctor, and he agreed that if there was a perforation that it would need to be repaired.

The surgery took just over 3 hours and when Emily was in recovery Dr. Kane explained to us what he found. The lens of her eye was pressed up against her cornea and no fluid was in between, which meant that fluid was leaking out, basically her eye was deflating. A leak meant that there was a perforation. Because there was no fluid in between the cornea and lens, there was no space to implant the second tube. So the scar tissue surrounding the valve and first tube was removed to try and aid in the flow of the fluid. The perforation was fixed by using a procedure called Amniotic Grafting. Basically a small piece of preserved amniotic tissue, which is similar in make up to the layers of the eye, is used as a patch to help cover the area where the perforation is. I was once again amazed at how advanced our medical technology has become, but after doing some research on it I discovered that amniotic tissue has been used in surgical grafting since 1910 and in eye surgery since 1940. Just amazing!

Once the graft heals it will integrate itself into her eye and become transparent. But this is only a temporary fix. This new complication may change how quickly she will have the cornea transplant. She was scheduled for that surgery on June 4th, but I would be taking her to see Dr. Zaidman and would have more information then. The biggest risk right now is infection, if her eye were to get infected and pass through the tiny perforation, it would be disastrous for her. But she is on 2 types of antibiotic eye drops to make sure that doesn't happen. Once she has the transplant, that entire area should be replaced with the new cornea so we are trying to remain positive about the outcome and the vision she will have in that eye.

Just as it was back in February, Emmy's eye was bruised, swollen and red. But as usual she was just as happy as can be! It's heartbreaking as well as heartwarming to see such a happy little girl go through so much and always come out on the other side with a smile. She is definitely one special little girl!

Next Glaucoma Surgery

2009-06-25T22:28:00.000-04:00

February 2009:

Next Glaucoma Surgery:

The surgery went well, although it was more complicated than expected. She had the valve in her left eye replaced because the first one was not working anymore. Apparently the entire valve was encased in scar tissue, which was not allowing any fluid to drain from the eye properly, making it impossible for her eye pressure to be controlled. We had noticed within the previous couple of weeks that the "bubble" (for lack of a better word) on her left eye was bigger than it was before so we knew the pressure was high. Dr. Kane said it was alot of hard work, but he got all of the scar tissue out and removed the old valve successfully. The new valve is apparently designed by Dr. Kane as he told us he had the company modify their design in order for it to work better. He placed this valve in a different area and at a better angle, so hopefully it will work much better for her.

After the surgery she had a patch over her eye for protection. The next day we took her back to Manhattan so Dr. Kane could examine her and when he took the patch off she had a pretty bad black eye. Her eye itself was really red and combined with the bruising underneath, it looked bad.

The next steps for her were to heal from this surgery and maintain lower eye pressure. Then in April she would have another cornea transplant and the cataract surgery done at the same time. We were unsure whether she would have a lens implant or not, since her doctor himself had not decided. If she does not get the lens implant she will have to wear glasses or a contact lens to maintain any vision in that eye.

We are taking one step at a time, and right now we are concentrating on just helping her heal.

Cataract, Scar Tissue...Another Surgery

2009-06-25T22:18:00.000-04:00

November/December 2008:

At the beginning of November, Emily went in for an exam under anesthesia with Dr. Zaidman (her cornea specialist). Because of the ulcer and infection she had in her right eye, he thought it was important to find out exactly what was happening. Sadly we did not hear the kind of news we were hoping for. Due to the ulcer/infection she now has scarring on her right cornea and unfortunately it's right in the middle so we believe it is obstructing what vision she has. He prescribed a new eye drop to try and help reduce the scar tissue and we're hoping that over time it will dissipate. The Dr. also discovered that the pressure in both eyes was elevated again and increased the dosage of her Glaucoma medication. In addition to that, we also found out that she had a cataract in the left eye, which had decreased what little vision she had in that eye even further. Dr. Zaidman wanted to revisit the possibility of re-doing the corneal transplant in her left eye, but said he would like to get her eye pressure under control before doing it. To say the least we left the hospital with dashed hopes for her, but were trying to remain positive.

On December 17th she went under anesthesia again, this time in Manhattan with Dr. Kane, her Glaucoma doctor. He wanted to look further into why her eye pressure was not stabilizing at a lower level since the valves were implanted over the summer. During the exam the pressure was 14 in the Right and 24 in the Left, but that might have been a little lower than what it actually was due to the anesthesia. He confirmed that she did have a cataract in the left eye and said that he could not see through it to examine her retina. He found that the drainage tube for the left valve is possibly too close to her cornea and that could be the reason why it wasn't working as well as it should have been. Ultimately, she would need surgery to shorten the tube in the left eye and have it moved to a better location once the cataract has been removed. He said he could do both of those procedures at the same time, but it would require the assistance of another doctor. He also said that this should be done before Dr. Zaidman does the corneal transplant again in that eye, and he will call and speak to him about Emily's case to come up with a surgical timeline. At that point we were looking at possibly sometime towards the end of January, but that wasn't definite yet.

Last year was a very difficult and trying year for us and our family. In 2008 Emily had been through 6 surgeries and countless exams under anesthesia. She has come so far from where she was before, but at the same time still has a long road ahead of her. Everyday we thank god for giving her the strength to overcome the obstacles she has encountered. Anyone who has met Emily knows that she is probably the most happy and content baby you will ever meet. We hoped that 2009 will bring good news, good health and a more positive outlook for Emily's condition.

Scratched Cornea, Corneal Ulcer and Infection

2009-06-25T22:04:00.000-04:00

October 2008:

We had encountered a new problem, and a possible set back in Emily's right eye. She started to develop what looked to me like pink eye in her right eye. I started giving her antibiotic drops, just in case, until I could talk to a doctor. Later that night we noticed a small grey spot on the same eye. The next morning the grey spot had become what looked to me like an indentation. It literally looked like a crater in the middle of her eye. Her cornea doctor was not in the office but we were told to take her as soon as possible to her Ophthalmologist. We got in to see him first thing the next morning. We discovered that she has a scratch on her cornea and sometimes that can cause the indentation that I was seeing. She was supposed to just continue with the antibiotic drops to help with the healing process, but we followed up with her cornea specialist yesterday and he changed her course of treatment. The scratch is still there and the "crater" (for lack of a better word) is actually considered a corneal ulcer. This is not good news.

There are two possibilities of how things can go for her. The first is that it can heal quickly and not have any lasting complications, which is obviously what we are hoping for. However, it could also heal and cause scarring, which will cause the cornea to become cloudy which leads to decreased vision and possible rejection of the cornea transplant. Her doctor said it's a 50/50 chance that it could go either way. If there is an infection in the ulcer, which he swabbed her eye to test for, would also be very bad. I wouldn't know the results until the next day. Unfortunately, it came back positive.

Until this was resolved, she was not getting any drops in that eye and was now on 2 types of ointment. The antibiotic/steroid ointment seemed to be bothering her because she was rubbing her eyes alot and had not willingly opened them yet. She woke up and about an hour later went back to sleep, probably because it's just easier to keep her eyes closed right now. She just seemed so miserable and it broke my heart. We don't know how she scratched her eye, and we will probably never know. But things like this happen and we just have to take it as it comes.

After 2 days of Emily being miserable, I called the doctor and he told me to take her off of the one ointment. Apparently she was having an allergic reaction to it. Great, just great. Why can't this poor little girl catch a break? Why of all things did she have to scratch her EYE???

Please God, I'm not sure I can handle much more....

Pages

2009-06-23T12:02:00.002-04:00

What happens to a man when he spills his heart over a page
And he watches words float away then
His feelings lie on a page alone

There waiting for someone who cares to read them
To open their eyes to see them
To see if they can make his thoughts their own

To find out that maybe your life's not perfect
Maybe it's not worth what he gives away

You can see that this broken soul is bleeding
So you can see your feelings inside yourself
And wonder through my heart

Letting you see through me now only consumes me
Forget your pain and watch me fall apart

What happens to a soul when he's trapped inside his emotions
And all of these words he's spoken
They bind him to the life he's left behind

And every new step he takes
He knows that he might not make it
To all of these dreams that he has yet to find

Maybe your life's not perfect
Or maybe it's not worth what he gives away

You can see that this broken soul is bleeding
So you can see your feelings inside yourself
And wonder through my heart

Letting you see through me now only consumes me
Forget your pain and watch me fall apart
As I fall apart

You can see that this broken soul is bleeding
So you can see your feelings inside yourself
And wonder through my heart

Letting you see through me now only consumes me
Forget your pain and watch me fall apart
As I fall apart

"Pages"
~3Doors Down

It's The Only One You've Got

2009-06-23T11:31:00.003-04:00

How do you know where you're going
when you don't know where you've been?
You hide the shame that you're not showing.
And you won't let anyone in.
A crowded street can be a quiet place
when you're walking alone.
And now you think that you're the only one
who doesn't have to try.
Then you won't have to fail.
If you're afraid to fly,
then I guess you never will.

You hide behind your walls of maybe nevers.
Forgetting that there's something more
than just knowing better.
Your mistakes do not define you now,
they tell you who you're not.
You've got to live this life you're given
like it's the only one you've got.

Memories have left you broken
and the scars have never healed.
The emptiness in you is growing,
there's so little left to fill.
You're scared to look back on the days before,
And too tired to move on.
Now you think that you're the only one
who doesn't have to try.
Then you won't have to fail.
If you're afraid to fly,
then I guess you never will.

You hide behind your walls of maybe nevers.
Forgetting that there's something more
than just knowing better.
Your mistakes do not define you now,
they tell you who you're not.
You've got to live this life you're given
like it's the only one you've got.

What would it take
to get you to say that I'll try?
And what would you say
if this was the last day of your life?

"It's the only one you've got"
~3 Doors Down

I found this song powerful and moving, it just struck a nerve with me for some reason.

Falling Apart

2009-06-22T00:23:00.007-04:00

August 2008-

When Emily had her first cornea surgery back in January of 2008, the only thing that kept me going was the idea that by the time summer came and we went on vacation that all of her surgeries would be behind her. I envisioned enjoying the summer at the beach, doing fun things with friends and making up for some lost time with the boys. So in June when we were told that we'd have to take Emily to a Glaucoma specialist and she'd probably need more surgeries, I was devastated. We had already been through so much and just when we thought things were looking up, we get sucked right back down into this hell. It was like someone had punched me in the chest and knocked the wind right out of me.

After returning from vacation and being thrown face first into surgeries that we weren't prepared for, I began to unravel emotionally. My husband would go about his daily routine, which at some times I was jealous of. He had a life outside of our home, complete with friends and distractions from what was going on in our life. He had an escape from the daily ins and outs of Emily's condition and raising 3 children, I didn't. It was starting to wear on me that I was essentially in this alone. When he came home, he would do his best to help out with the kids, the house etc...but no one knew Emily's eye drop schedule better than I did, so I was usually the only one who gave them to her. Jason would sometimes ask me what she needed, but it was still on me to remember. At one point we used a chart to cross off each medicine as we gave it to her, but that started to get confusing and we eventually stopped using it. Jason has always been a great source of comfort and support for me and through the tough times he has always been there for me. But I was bearing the brunt of dealing with Emily's condition and treatment, it was just a fact of life.

It was extremely stressful for me to take on that kind of responsibility by myself. I alone was and still am responsible for making sure she gets the medication that prevents her from going blind. Her steroid drops prevent the corneas from rejecting, the antibiotic drops prevent infection and the glaucoma drops keep (or are supposed to keep) her eye pressure low so her optic nerves aren't damaged. The responsibility of this was mine. The doctors can only do as much as they can in the operating room or office, but it was ultimately up to me to make sure their hard efforts were not for nothing. It just seems like alot for me to be responsible for. I didn't sign up for this, this wasn't in the plan...

I've heard friends comment on how strong I must be. "You are the strongest woman I know, i wish I had half the strength and courage that you do", "If this was happening to me I wouldn't be able to handle it, I don't know how you do it", "You are such an amazing mom, how do you get through your day without falling apart?"....Well I hope I am nominated for an award someday because if everyone thinks I am such a strong woman and am handling this so well, I am fooling them all. Inside I am falling apart, crushed by the pressure of this weight I have on my shoulders. Sometimes the pressure is so much that I feel like I can't breathe, I am suffocating on the inside. My heart is shattered with each medication or surgery that fails, each time not being put back together quite the same. I am barely holding it together and there is going to come a time when I finally just break.

That breaking point came towards the end of the summer when I was struggling to get the boys to swimming lessons on time. I had driven up to the lake and was already late. My parents were staying there and my mom came out to 'help' me when I pulled up. I was so frazzled about who had towels, sunblock on, kickboard, floaties, cooler with essential snacks and drinks, beach chairs bottle for Emily etc...that by the time I thought I had everything together we were already late for the lesson and still needed to take the 5 min walk to the beach. I got Emily in the stroller, loaded up the beach cart and started down the road. About 15 seconds later I realized that I had forgotten to give Emily her eye drops so I had to go back to the car and get them. My mom has never been really good at offering help, or seeing when someone needs help so she just was oblivious to how mentally stressed I was at that moment. I opened the door to the van and something just came over me. I couldn't function, it was like I was frozen and the only thing that I could feel were the tears rolling down my face. I don't know if it was a panic or anxiety attack, but I have never felt something like that before. I broke down in front of my mother and it was like she was surprised that I wasn't keeping it all together. She asked me what was wrong as if I had stubbed my toe or something. I don't remember what I said, but I know I was rambling on and on about alot of stuff. I had hit the wall, I couldn't go any further.

At that moment, I came to the realization that I was in way over my head. I had most of the physical support that I needed (family/friends watching the boys while I took Emily to the doctor twice a week) but I had little or no emotional and mental support. I talked with friends about things sometimes but what I needed most was someone to look me straight in the eye and say...let it out..cry, throw things, take a deep breath and scream as loud as you can. I had no emotional escape. I was so overwhelmed by my responsibility to take care of my family and be 'supermom' that I had no idea how to take care of myself. I needed time alone, time to collect my thoughts and recharge my mommy batteries, time to allow myself to re-focus on what was really important in life instead of all the stupid little stuff. Five or ten minutes once in a while wasn't enough, I needed a real break. There wasn't anything I could do about it other than check myself into a hotel for a weekend and shut out the world. No TV, no phone, no internet. Just me, a few bottles of wine and some good music. But that wasn't going to happen.

After discussing it with Jason, I decided that I needed to go and talk to my doctor. I was not myself and I had been down the depression road once before after I had Tyler, so it was familiar territory. I guess I was just trying to tough it out and be as strong as I could before I resorted to any kind of medical help. I made an appointment with my general physician shortly after my break down. I tried to walk into the office with my head held high, knowing I did everything I possibly could to avoid the reason why I was there. I promised myself that I wouldn't cry, but the moment the doctor walked into the office and said to me 'Wow you don't look so good', i couldn't control it, I just let it all out. I explained what I'd been going through and she told me I should have come to her sooner, "don't be a hero" she said. I laughed, but I guess that's what I was trying to do...be the mom who can do everything and handle anything. I guess there is no such person. There is no June Cleaver...even the Brady's had a maid. What made me think that I was any different?

I left the office feeling relieved but apprehensive at the same time. I was now going to be on anti-depressants, a short term fix and a long term solution. Two medications that were hopefully going to help me get my head screwed back on straight, bring back the happy go lucky person I used to be and enable me to help my family deal with our new 'normal' life. I didn't want to be in this position, but I was and there was no escaping it. I still needed the extra emotional support from family and friends, but that was a whole other issue. Something that to this day has really not been figured out. But we're getting there...

Hospital Bills

2009-06-22T00:06:00.003-04:00

Ok, I get it...you go to the hospital, you get treatment, they send you a bill. What I don't understand is why in this age of such great technological advances in computer systems and programs do major hospitals have to send you a separate bill for each time you go there? Who was it that coined the term "super bill"?...someone who probably figured out that billing for all hospital visits by the same person on one bill would make things a hell of a lot easier. The patient can clearly see what charges were for what date of service, how much they owe on that charge and what their current balance is. The hospital can clearly see the same information. Benefits to both patient and hospital include less paper, less chance for bills to get lost in a pile of mail, less cost for postage and less confusion on which payment was sent on which date and which date of service it was for.

This is 2009, why I am getting 5 bills from the same hospital each with a different account number, date of service, amount due and balance owed. And not only do I get these statements in the mail, but about 5 days after the bill is generated, a payment reminder is also generated. So I am getting something from this hospital just about every day. This is my answer to this issue...I collect all the bills from that hospital and wait until all of them have been received. I write a check for each one, noting the account number on each check. I put them all in one envelope and mail them so the hospital gets all 5 on the same day at the same time. GENIUS! I just saved about 3 trees doing that. The downfall is that by the time I pay everything, I am already getting bills that are due for the next month. I've asked over and over again for them to send me one statement but they can't. Why the hell not? Get up to date people. You are a MAJOR hospital in NYC...you can't afford a better billing system??? Take some of the money I am paying you and spring for it, your patients will thank you. Plus you might actually get paid on time.

Stop sending me a payment reminder before I even get the bill in the mail! Are you trying to get me to slip up and send you two payments that month??? Do you take me for a sucker? Sorry, not me...I'm on to you!

2nd Glaucoma Surgery

2009-06-21T13:11:00.002-04:00

August 12, 2008

After waiting 4 1/2 hours in the pre-op waiting room...Emily finally went into surgery at about 3:30. We anticipated that it was going to be another long surgery since both the Left and Right eyes were being worked on, and we were right. She came out at about 7:15. The valve was implanted in the Right eye and the drainage tube was opened up in the Left. The surgery went well and we hoped to have a short stay in the recovery room. After the first surgery 2 weeks ago, she was very hungry and drank 2 bottles of glucose water and 2 bottles of formula with no problem. This time we think that her throat was much more irritated from the breathing tube because she was refusing to drink and cried every time she tried to swallow. She should have been starving since she hadn't had anything to eat or drink for over 21 hours, but without drinking very much, she would have to be admitted and stay overnight. Eventually we got her to drink some and finally left the hospital at about 9:15. Dr. Kane said the pressure in the left eye was now low, almost too low, so he was hoping it would recover to a safe level by the next day. We brought her in first thing the next morning and the level was ok. Sometimes children with this condition cannot produce fluid fast enough to build the pressure back up, so if it had been too low, he would have had to go back in and inject some synthetic fluid to help. Thankfully that was not the case. We were no longer giving her the oral medication, but would continue to use the eye drops in just the right eye until the drainage tube can be opened.

Post Op Check Up 8/15/08:

The pressure in her left eye was at 20 or just below 20 and the pressure in the right eye was at 24. The day of the surgery, both eyes were at 43, which is very high. The left eye was about where her doctor expected it to be since the tube was opened, but he was surprised at how much lower the right eye was, even without the tube completely opened. He actually said that if the pressure stays at this level or is even slightly lower, he might hold off on opening the tube. We would continue using the eye drops as we had been, and maybe that would be enough for her. In the event that she would need the tube opened, she would have that done on September 9th.

So for that moment, we were relieved and happy that things were going well for her. This is going be a lifetime battle, but hopefully since we are taking steps to correct it now - her vision won't be affected. We are taking one day at a time and we can't do much more than that.

On a side note...while Emily was in surgery a storm was passing by the hospital. No rain fell, but there was a beautiful rainbow just outside the waiting room window. Both of our families had lost loved ones last year and I have to believe that this was their way of letting us know they were watching over Emily and keeping her safe. It made me cry...

I'll Stand Back Up

2009-06-18T19:09:00.000-04:00

Go ahead and take your best shot,
Let 'er rip, give it all you've got,
I'm laid out on the floor,
but I've been here before,
I may stumble, yeah I might fall,
I'm Only human but aren't we all?
I might lose my way,
but hear me when I say,

I will stand back up,
You'll know just the moment when I've had enough,
Sometimes I'm afraid, and I don't feel that tough,
But I'll stand back up,

I've been beaten up and bruised,
I've been kicked right off my shoes,
Been down on my knees more times than you'd believe,
When the darkness tries to get me,
There's a light that just won't let me,
It might take my pride, and tears may fill my eyes,

But I'll stand back up,
I've weathered all these storms,
But I just turn them into wind, so I can fly,
What don't kill you makes you stronger,
When I take my last breath,
That's when I'll just give up,

So, go ahead and take your best shot,
Let 'er rip, give it all you've got,
You might win this round but you can't keep me down,

'Cause I'll stand back up,
And you'll know just the moment when I've had enough,
Sometimes I'm afraid and I don't feel that tough,
But I'll stand back up,

You'll know just the moment when I've had enough,
Sometimes I'm afraid and I don't feel that tough,
But I'll stand back up.

- Sugarland

Pediatric Glaucoma

2009-06-17T22:10:00.000-04:00

July 2008:

After consultations with 2 doctors, Dr. Lama in Hackensack and Dr. Kane at the Columbia University Eye Institute in NYC, we decided that Dr. Kane was the right doctor for Emily. Although Dr. Lama has worked with children, he was not a pediatric Glaucoma specialist and therefore wasn't able to accommodate Emily's needs. He basically closed her file, referred us to a specialist in Boston and pushed us out the door. I was very hesitant to burden our family with traveling all the way to Boston unless I absolutely had to, so after we got home, I contacted Emily's cornea doctor. Dr. Zaidman had already called and spoken to Dr. Kane about Emily's condition so I felt more comfortable going to him. He only works with babies and children, and accepts our insurance which is a blessing. Also, he is able to take her eye pressure readings in the office without sedation or putting her under anesthesia, which is HUGE for us.

On July 8th we went into NYC to see Dr. Kane. Our appointment was for 2:30 but we were not see until 6:00 - yes we sat there for 3 1/2 hours before Emily's name was called, but everyone told us he was worth the wait. While we were waiting, we had been talking with another parent whose daughter also had corneal transplants and sees Dr. Zaidman. Apparently she was also referred to the doctor in Boston and had already been there to see him. She lives on Long Island and the doctor from Boston said she should see Dr. Kane instead since he was so much closer. Through her we found out that Dr. Kane studied under the doctor from Boston, so that made us feel good. If he was telling her to come back to NYC and see Dr. Kane, that saved us a trip and we knew we were in the right place.

During the exam, Dr. Kane went over her medical history and then attempted to take her pressure. I was amazed...he kept her upright on Jason's lap, got her attention with some blinking toys and was able to get her pressure readings without a problem. He has a different tool that the other doctors don't have and that allowed him to work his magic...no sedation, no anesthesia...no crying. I couldn't believe it. Her eye pressure was 34 in the Right eye and 44 in the Left eye. That was higher than it has ever been. He told us she would need surgery since the medications don't seem to be working and if the pressure remains elevated it will cause damage to her optic nerve and she will lose her vision. This surgery is very complicated because of her abnormal eye structure, and there is a possibility that it could interfere with the cornea transplants. Because her eyes aren't normal, the typical Glaucoma surgery of creating a new passage way for the fluid to drain from wouldn't work. So she would need a drainage tube implanted. He adjusted her oral medication from once a day to 4 times a day and said he wanted to see her in the office once more before surgery. He mentioned that he would ask his secretary to look for some time in the OR for her and we would discuss it at the next visit. We made her next appointment for July 30th before we left that night (which was 8:00 pm).

On the way back down Rt. 80 heading to pick up the kids, a tractor trailer drove next to us. It read "Kane is Able..." I think Kane is a trucking company obviously, but the irony in that is astounding.

Meanwhile we saw Dr. Zaidman again and he wants us to try and lower the frequency of the steroid drops to see if that helps with the pressure. She still needs the steroid to help prevent rejection of the transplants, so we have to monitor the clarity of the corneas. If it looks like it's getting worse, we have to increase the dose and then try again in a few days to lower it. She's also been on liquid Prednisone for a month now, which was dropped from twice a day to once a day since the swelling in her left eye has come down a little. The oral steroid basically makes you blow up like a balloon, so she has puffed out quite a bit. We affectionately call her our little marshmallow! It's cute, but hopefully she will lose some of that baby fat when she becomes more active. Dr. Zaidman doesn't want to keep her on the Prednisone long term, so we hoped she would come off of it soon.

We had recently enjoyed a much needed vacation at the beach, albeit not a completely stress free one as we had anticipated. But we all had a good time and hoped to come home refreshed and with a renewed sense of strength to face Emily's impending surgeries and new course of treatments. We came home on a Sunday and were expecting to see Dr. Kane on July 30th for her next office visit, but instead came home to a couple of messages from his secretary "reminding" us that her surgery was scheduled for Tuesday July 29th! WHAT??? Apparently the secretary neglected to call and let us know that she scheduled Emily's surgery...nice right? Thankfully we had come back from vacation in time.

The surgery was at the Columbia University Children's Hospital. We got there at 10 am and she was taken into the operating room around 12:20. We knew it was going to be a long surgery so we were prepared. Overall the surgery took 3 1/2 hours. The valve was implanted on the bottom of her Left eye, just underneath her lower eyelid. Normally it is on top of the eye, but this was the only place he could put it because of the previous surgery and scar tissue. You can't see the valve or the drainage tube since it is under the first layer of tissue. This is the first step of a two step process. First the valve is implanted and the drainage tube is tied off to prevent rapid draining of the fluid. Her eye needs to heal before the drainage tube can be opened. She would have the tube opened and the surgery on the Right eye done at the same time, which I guess is a good thing. One less trip to the hospital and one less time she's under anesthesia. Then she would have to go back 2 weeks later for the other drainage tube to be opened. We were told that all of the drainage tissue in her Left eye was non-functional so this surgery was the only option for her. This is most likely a result of the cornea surgery, which is why the pressure skyrocketed and her eye became so swollen shortly after that surgery.

The corner and bottom of her eye was red, and I hadn't seen under her bottom eye lid yet since I didn't want to pull it down and disrupt anything or cause her pain. Other than some hesitation to open her eyes on the second day, she seemed to be relatively unaffected by it. Initially she had alot of swelling around her eye and eyelids, but that had gone down quite a bit. She was now on an antibiotic/steroid ointment 4 times a day. Since the 3 types of pressure reducing eyedrops she was on was not really effectively working, Dr. Kane no longer saw the need for them to be used in the Left eye. He feels that the oral medication should be all she needed. She was still using the eye drops in the right eye since he didn't want to change too many things all at once. I assumed he would discontinue those drops once she had the surgery on the right eye. He also didn't want her to use the steroid eye drops 5 times a day, so he reduced that to only twice a day. She still needs that to help prevent the rejection of the cornea transplants, so that could cause a problem. Hopefully it won't. Right now her cornea's are not as clear as they were when the transplants were first done. However, it was very possible that the increased eye pressure was the reason. In a normal case of Glaucoma, one of the signs is cloudiness of the cornea. But since she already has a condition where that happens, we can't be sure whether or not the cloudiness is from the Glaucoma or from the transplants being rejected. We also don't know if this will be a complete fix for the Glaucoma or whether she will need further surgeries and additional medications down the road, but we were hopeful that it would. We were also trying to remain optimistic that this surgery wouldn't compromise the cornea transplants, as that is a risk as well. We can only take one day at a time and pray that once all this is over, we can learn how to manage her condition instead of constantly trying to treat it. The ultimate outcome would be for the Glaucoma to be controlled by these valves and the oral medication, and for her cornea's to clear up once the pressure is controlled.

We are still trying to understand her condition and how this surgery will help her. There are a few different types of valves, but Emily has what is called the Ahmed Glaucoma Valve. I have found some information online about her condition and the surgery she had that seems to clarify things a little.

Information about the valve and treatment:
http://www.ahmedvalve.com/resources/PB_english.pdf

http://www.glaucoma.org/treating/glaucoma_valve.php

http://willsglaucoma.org/treatments.htm

Information about Pediatric Glaucoma:
http://willsglaucoma.org/whatisglaucoma.htm

http://www.glaucoma.org/learn/rare_forms_of_g.php

http://www.pgcfa.org/glaucoma.htm

http://www.pgcfa.org/kb/entry/61/

The Question and Answer portion of this webpage has some pretty good information as well:

http://www.pgcfa.org/kb/11/

She hasn't been wearing her glasses because the ointment is very messy and gets all over her lenses. She's absolutely not allowed to rub her eye and at that point I'd rather not bring more attention to the area by fighting with her all day to keep the glasses on. She wears an eye shield at bedtime to help prevent her from accidentally rubbing/poking or bumping that eye. Any of that could cause the stitches to break and that will be very bad.

I feel like this is a losing battle.

In Office Sedation

2009-06-17T22:03:00.000-04:00

I brought Emily to see Dr. Zaidman to be sedated in the so he could test her eye pressure. It took her about 45 minutes to finally fall asleep, but once she was out...she was out. I did about 20 laps around the hospital with her in the stroller trying to get her to sleep, the doctors and people sitting in the waiting rooms must have thought I was either very lost or completely crazy. After she was asleep he took her pressure readings and unfortunately the pressure is elevated again. It also appears as though there is a little bit of swelling in the right cornea now too. I asked him if he thought her left eye was rejecting and surprisingly he said no. Increased pressure can often cause swelling and the cloudiness that we see, so if we can get the pressure under control her eyes should clear up. So it's like a double edged sword, good that he doesn't think it's rejecting, but not good since she's got the high ocular pressure. We are currently trying to find a Glaucoma specialist who works with young children. Both Dr. Zaidman and Dr. Morgan are looking for names of people in Manhattan, but we would much rather find someone more local if we can. My mom got the name of a doctor in Hackensack from one of her eye specialists. We would meet with him as a consultation and then he would do an exam under anesthesia at the hospital to test her pressure. Hopefully we can avoid that for a little while since her pressure was just checked yesterday. They don't do in office sedation so she would have to go under anesthesia again and I just can't bear to put her through that again right now. (and I'm still recovering from the first 7 times). I wanted to find out if her test results could be faxed to the other doctor and hopefully that would be enough for right now. But for the moment Dr. Zaidman had decreased the steroid drops in both eyes to 5 times a day and prescribed another eye drop for the pressure and an oral medication called Prednisone to reduce the swelling in her eyes. She will be going back to him next Tuesday for him to check on the swelling.

Warning: Predinone causes weight gain...

I had to stay at the hospital until she woke up from the sedation, so while I was on my way to the coffee shop, I passed by the Chapel. I wheeled the stroller inside and sat down to say a prayer for her. I was just so overcome with emotion about how little she is and how her life has just started, but yet has been through so much already. As she lay there in the stroller sleeping so peacefully, I just held her hand and cried. I no longer find myself asking "why" this happened to her, but instead asking God to heal her and not take away the sight that he just gave her. She's finally starting to see the world and unless we get the pressure in her eyes lowered, damage can be done and her vision will deteriorate. We just have to take a deep breath and do the best that we can to get her what she needs. We're trying to remain optimistic and be strong for her. But that's so hard right now.

Rejection?

2009-06-17T21:43:00.000-04:00

June 2007:

Why was Emily's left eye bulging out and starting to get cloudy? My gut was telling me the cornea was starting to show signs of rejection. I couldn't help it, nothing else made sense.

I took her to be seen by her Ophthalmologist, Dr. Morgan. He patched each eye to test her vision and found while she is focusing quite well with her right eye, she is struggling a little with her left. That kind of seems expected because the surgery in her left eye was done 2 months after her right, so it should still be trying to play catch up. But since she is having problems with swelling and some cloudiness in her left cornea, we aren't sure whether the vision issue is related to that or not. He said that it might be a possibility that the left eye was starting to reject but he could not say for sure and left that up to Dr. Zaidman to determine. Originally he wasn't going prescribe glasses for her and wanted to see her back in 3 months, but he changed his plan when I told him that Dr. Zaidman wanted her to be seen early in June to get glasses. He hesitated, but then dilated her eyes and gave me her prescription. He said he was going to get in touch with Dr. Zaidman and find out what he thinks is happening with her left eye. As you can imagine, I left the office feeling very overwhelmed and sad. I got in the car and cried.

Why is this happening? Why can't this poor little girl just be done with all this drama and get on with the business of being a baby? Like learning how to crawl, walk, talk and drink from a sippy cup. Why are we sitting here worrying about donor tissue rejection, glaucoma and glasses for an 8 month old? This is not fair, non of this is fair. She should not have to go through this. Why is this happening? Did we not say enough prayers? Is god not listening? Why her, why this tiny child? No one has an answer for me.

I wanted to wait until her two doctors talked to each other before getting her glasses. It took 2 weeks for me to finally hear back from Dr. Morgan and they both agreed that she should start wearing them. So that afternoon we went and picked out a cute pair of pink glasses for her. Her frames are on backorder for 2-3 weeks so the store loaned us the ones they had as a sample until hers come in. We picked them up put them on her for the first time, she looks so cute! It's going to be a huge adjustment for her and us, but she can see much better now (i guess) and that's what is most important. She pulls them off just about every 2 seconds, but once she starts to realize that she can see better with them on, she'll learn to leave them alone. I just can't imagine how differently her world looks now. I've ordered sun clips for her so her eyes will be protected from the sun - just in time for the summer.

Follow Ups And Other Happenings

2009-06-17T17:18:00.000-04:00

During the exam when the broken stitches were fixed, the doctor checked the pressure in her eyes again and found that there wasn't a drastic change with the new medications, but also noted that there is no evidence of any damage to her eye (thankfully). He explained that children are much more able to handle the increased occular pressure than adults or the elderly because their blood vessles and are more plyable. Which basically means that an elderly person with the same pressure readings would have experienced damage to their eye and thier vision would be comprimised because of it. Thankfully this was not the case for Emily right now. He decided to up the frequency on the one eye drop to see if that would make a difference.

Emily's Christening was on April 13th. It was a very special day for her and she was such a good girl in church. It was very nice of our Pastor to mention her in the prayer and concern part of the service. He explained briefly about her condition and a special prayer was said for her continued healing and improvement in her vision. God was smiling down on her that day, we just know it.

On April 14th she had another exam under anesthesia to remove her stitches. Her doctor could not remove all of them because the ones that had just been replaced were not ready to come out yet. The pressure was tested again and found to be lower, but not quite low enough. He decided to add an oral medication called Diamox. If that didn't work he said there was one or two other things that we could try, but we were hopeful that we wouldn't need to. Since the medication is a pill for adults with Glaucoma, it is not commercially available in a liquid form for children. So we had to have it specially made at a compound pharmacy. Emily didn't seem to mind taking it since it's flavored like tutti fruiti. She smiles everytime we gave it to her!

On April 17th she had an appointment with Dr. Morgan, her Ophthalmologist. He said that he was pleased with how the cornea's looked and confirmed that she is also far-sighted in the left eye as well. Her retina appears to be normal (which is great news) and overall her eyes look good. Although she is gaining a lot more control of her eye movement, often one or both eyes will turn in too far. I wouldn't say that she is cross eyed, but there are times when it is obvious that her eyes are not looking in the same direction. This can sometimes be corrected with glasses, which she will probably need. At some point in the future (a year from now or so) we will discuss the possibility of having her eye muscles surgically corrected, but that is not a huge concern right now.

On May 1st she had the remaining stitches removed. Her doctor said her eye looked like it was healing nicely. Because of the extra surgery and stitching during the initial transplant and the problem with the broken stitches, her left eye may take longer to heal than the right one did. The cornea itself looked good, but it was not quite as clear as the right one. The Dr. said that with time and additional healing it should eventually look the same as the right eye. The good news was that her pressure readings were much lower and within an acceptable range! We finally found a combination of medications that worked! That was one of my biggest concerns, so when he told us to continue with everything we were using, I was thrilled. When we left the hospital that day, it was like a huge weight was lifted off of our shoulders.

Finally...her surgeries were over, her stitches were out and her exams in the hospital were done. Now we could move on to the next phase of her treatment and begin to show her the beautiful world around her. She has been through so much in the first 6 months of her life, but she has been so strong and we are so proud of her!

Linda, a visual therapist, had been coming to our house twice a month to work with her and track her visual growth. At our last session Linda told me that she is doing very well and is showing improvement at each session. She is tracking a wide variety of colored objects up to about a distance of 5-6 feet. Although not all objects hold her attention to that distance, there have been a few so we know she can see at least that far. She is showing visual preference, which means that when given the choice of looking at two objects, she sees both of them but prefers to look at one over the other. She is also showing visual memory, meaning that when two objects are placed in her visual field and then one is taken away or hidden, she will look at one and remember about the other one and look for it. Both of these things are a great sign that her vision is improving and she is doing well.

We also had Beth from the Commission for the Blind come out and see Emily. They run their own early intervention program and can offer assistance, support and guidance to families of visually impaired children. She did her own evaluation of her vision and was really very pleased with her progress. I asked her if she had any experience with Emily's condition and she said that she only know's of one other case in the area, a child in Bergen county, but she personally has not worked with that child and has little information about the condition and how it will affect Emily as she grows up. Because it's so rare and there aren't many babies who have had the cornea transplant surgery, her future is really unknown. While she is doing well right now, the possibility of the donor cornea being rejected is always there. In reality she could be 4 years old and show signs of rejection, but we have to stay positive and believe that we won't have to ever deal with that. Beth told me that by far Emily is doing great and there are many parents of blind and visually impaired children who would jump at the chance to be in our shoes. So we really have to count our blessings and be thankful for the vision that she has. If she needs glasses to see, thats totally fine. At least she will be able to see. And we can't ask for more than that. Beth mentioned that she will be trying to get a few toys for her, ones that we can use to help her tracking ability and distance. And when we are ready to order glasses for her, she will be able to help us with that as well. She won't be able to provide help with every pair of glasses she will need, but any help we can get is wonderful. If anyone has information on any programs that would provide glasses for visually impaired children, please let us know. We know of the Lions Club, but have yet to really get information on how their program works or how to contact them.

On May 30th Emily saw her cornea specialist for the first time since all the stitches were taken out. The good news is that she does not need to be on the antibiotic eye drops anymore, so we can stop using that. But another medication is being added to the list instead. We've noticed that her left eye seems to appear swollen, but it's hard to tell from day to day whether it's the same or worse than 3 weeks ago. Originally the doctor said that it could be from the extra surgery on that eye, or just part of her condition. But because the left cornea still doesn't look as clear as the right one, he suggested using an over the counter saline drop to try and clear it up. He said that he's not sure why it is like that, but it's possible that when the stitches broke it caused something to happen and it's just not resolving itself. The new medication is called Muro 128 and is used for treating corneal edema...which would explain the swelling we see. It works by drawing out the fluid in the cornea. She will get that 3 times a day and hopefully it will clear everything up. She's only been on it for 2 days now and we can already see an improvement. Her eye doesn't look as swollen as it did before, so hopefully it's working. She won't need to go back to see her cornea doctor until the end of June...so we are about 1 month in between visits now...a far cry from when only a month ago we were going twice a week. When she goes next time, she will be sedated in the office so that he can test her pressure again. She will have to take a medication that will make her fall into a deep sleep. So it's like she'll be under anesthesia, but not really. (kind of scary for me) I'll be there with her the whole time and just have to stay for a little while afterwards until she wakes up. The doctor joked around saying that it will be like she's having the best sleep you could possibly imagine and that many parents ask if he can prescribe some of it for them! Hopefully her eye pressure will still be ok and we can just continue with what we are doing now.

Here is her eye drop schedule as it stands now:

Pred Forte (steroid) 5 x day Right eye - 6 x day Left eye
Cosopt (pressure) - 2 x day both eyes
Xalatan (pressure) - 1 x day both eyes
Diamox liquid (pressure) - 1 x day
Muro 128 (corneal swelling) - 3 x day Left eye
Dilation drop - 2 x week Right eye only

On June 5th she was going to go back to Dr. Morgan for another eye exam. I was anticipating that he would prescribe glasses for her, so pretty soon she would be able to see even better than she could now. I couldn't imagine how much her world was going to change. She was now 7 months old and her personality had really started to bloom. She was getting extra tummy time to strengthen her core muscles since she isn't sitting on her own yet, but hopefully she will soon. She had spent so much time in the car seat going back and forth to the doctors that she was really robbed of tummy time as a newborn, so she's got some catching up to do. She loves to blow raspberries, especially while she's eating her fruits and veggies! And we think she said "da da" the other day but we haven't been able to get her to say it again. She sometimes just says one "da" so I guess that's a start.

Broken Stitches

2009-06-17T17:14:00.000-04:00

1 week after having the Left cornea transplant, we had unplanned visit to the hospital operating room. I brought Emily to her doctor for her usual check up on her eyes. When the doctor looked at her left eye, he thought he saw a scratch on her cornea or possibly a broken stitch. He couldn't be 100% sure what it was or if there was any damage unless he put her under anesthesia to find out. So, what was supposed to be a quick appointment ended up being an all day event at the hospital. Back into the OR...

There were four broken stitches....not one, but four. The doctor doesn't know how or why they broke, but it had to have happened between Monday and Friday of that week because when she was checked on Monday it was fine. He replaced the stitches and she is doing well. We will have to go back the next day to his office so he can look at it again. He said that the bottom part of the cornea is healing nicely and hopefully with new stitches the top part will too. Thankfully it was something that was able to be fixed and not something wrong with her eye or with the new cornea, but it was pretty scary for us.

Please God, no more surprises...

Cornea Transplant #2

2009-06-17T16:56:00.000-04:00

3/20/08
Second cornea transplant. Everything was just about the same as the first time around...except this time Jason went into the OR with her. She went in at about 11:00 and came out around 1:30. Dr. Zaidman came back into the recovery area to talk to us and he said the surgery went well. He first had to do an exam on the right eye to see how that eye was doing, and then did the surgery in the left eye. Because of some additional scar tissue, the surgery was slightly more complicated than the previous one, but she got through it was doing well. He had to repair the area where some scar tissue was in addition to the cornea, so she has a few extra stitches this time, which is causing some increased swelling and irritation. He explained to me that the extra stitches are actually on the surface of her eye, making it feel bumpy to her. So each time she blinks it's causing some irritation. That area should heal quickly and will look just fine. The pressure in her eyes was still elevated, so she is now going to be using two new pressure drops instead of the one she was previously using. We're not sure why the first one was not working, but hopefully these new drops will do the trick. Some of the increased pressure is due to the use of the steroid drops, but she will need to be on those for a year so these other drops will be necessary to counteract it.

After some confusion about the hospitals age policy for extended observation in the post-op recovery room, we established that she didn't need to stay for the full 6 hours this time. We left after only 4, which still felt like it was 12, but we were just thankful to be able to leave while it was still daylight out.

We had to be back at 8:15 on Friday for him to take the patch off. We had the same anxiety that we did the first time, wondering what her eye looked like. Just after we took the patch off, she opened her eye for the first time and had an irreplaceable expression on her face. It was like she said to her self "wow, that seems different, I can see better now". It was amazing to see her react like that. Although it was swollen, he was able to get a peek at her eye and said it looked good. Then he went down the list of eye drops that she is on and explained what to do with the Left eye.

Her eye drop schedule:

Vigamox (Antibiotic) - 4 times a day in each eye
Pred Forte (Steroid use to prevent rejection of the donor cornea) - Reduce to 6 times a day in the right eye and gradually build to 8 times a day in the Left. By this Friday she will be at 8 per day.
Cosopt (To reduce eye pressure) - 1 time in each eye before bed
Xalatan (To reduce eye pressure) - 1 time before bed in Right eye only. This will change to both eyes in about 3-4 weeks.
Cyclopentol (Dilation drops) - Twice a week in Right eye only.

That's 24 or 25 eye drops per day. It is very stressful to say the least. But we will do what ever it takes so that in the end she will have the best possible vision.

She had a pretty rough weekend, crying the entire time she was awake. Jason and I got only a few hours of sleep that Friday and Saturday night. We believe it was a combination of a few things that made her so upset, but she got back to her regular happy self pretty quickly. Since the surgery she has been opening her left eye much more and we had already noticed some improvement in her focusing on some objects. She was scheduled to have the stitches taken out on April 14th and then she would go see Dr. Morgan, her pediatric ophthalmologist on the 17th. One thing we still needed to look into was finding a pediatric glaucoma specialist that is in our area (and insurance). Because her eye pressure may become a long term issue, Dr. Zaidman said it might be something we'll have to look into.

Emily also had her first meeting with a visual therapist from the early intervention program. We were very pleased with her ability to track shiny items, and of course anything that had a light in it. She used a fiber optic color changing light and was able to get Emily to track it on all directions, even from a distance of 5 feet, for over 20 minutes! She will be coming every 2 weeks to work with her and give us some additional ideas on how to work with her on our own. I will also soon be meeting with the therapist from the commission for the blind. They have their own early intervention program for visually disabled children, so we will get some extra help from them as well. From what I understand, they'll be able to provide us with some toys and objects that we'll be able to use here at home. And if and when she needs glasses, they should also be able to help us with that too.

Emily had just turned 5 months old. Time has gone by too fast. She had already started on solid foods, first eating oatmeal cereal and then moved onto rice. She seems to be taking to them well and soon we'd be adding fruits and veggies! She loved lying on the floor and would frequently squeal with excitement when she was extra happy. She loved to sit and watch baby einstein video's...which are great for her since they are chock full of visual stimulation. She started doing this super cute nose scrunch thing recently, like she's reacting to something that doesn't smell good, it's the cutest thing! So far we hadn't noticed that her vision problems have caused any kind of developmental delay in other areas, which is a good sign...

Stitches Out

2009-06-17T16:43:00.000-04:00

We brought Emily back to Westchester to have the stitches taken out and ended up leaving there with some discouraging news. Her eye pressure was elevated, which could mean she was developing Glaucoma. The cornea itself looked good, but her doctor wasn't sure if the pressure was elevated as a side effect of the steriod drops she was on, or if it was Glaucoma. So he gave us a prescription for Lumigan to try for a few weeks to see if it helped.

Bottom line...cornea ok, but possibly at the expense of her vision. Glaucoma steals your vision slowly. So even if she can see through a nice clear cornea, the increased pressure causes damage to the optic nerve and you go blind. Not what I wanted to hear.

5 Days Post Surgery

2009-06-17T16:29:00.000-04:00

5 days since her surgery and all things considered, she was doing great. Her doctor said the cornea looked "excellent"! She was going to have the stitches taken out on March 5th. She was getting antibiotic eye drops 4 times a day and would soon be getting the steriod drops 8 times a day. She seems to be dealing with all of this really well and we are so proud of her.

Giving her the eye drops was one of the most stressful parts of her post op care. Trying to remember what she was given and when was difficult, but we quickly figured out how to give them to her without causing her to get upset. She is such a strong little girl.

Cornea Transplant #1

2009-06-17T15:52:00.000-04:00

1/31/08:
Emily had her first eye surgery and she did wonderful! We got to the hospital at 9:00. She was scheduled to go in at 10, but they didn't bring us back into the surgical center until 10:30. After giving her a few antibiotic eye drops, and putting a very fashionable blue hospital gown on, we were able to walk her down to the operating room. I was allowed to go into the room with her and stay while they started the anesthesia. I stood/sat just outside the operating room holding Emily for almost an hour before the doctor was ready to bring her in. Why the hell did you bring us back there then? Jason was outside probably starting to freak out and wonder what was going on, why was it taking me so long to come back to the waiting room. The entire time I was there, I was in tears. It would come and go. I started talking to her to ease my nerves, telling her how much we loved her and that when she woke up we would be there to comfort her. the nurses were great, one kept coming over and giving me tissues. She even sat and talked with me about her condition for a little while, I think she really wanted to know about her and that was comforting. But I was scared to death. They finally were ready and I brought her into the OR. Machines, monitors, lamps and probably 6-8 people filled the room. I knew she was in good hands, but a 3 month old baby shouldn't be in there to begin with. This is not how she was supposed to start her life.... but that's where we were and there was no other option for her. I laid her down and the nurse put the mask over her to allow her to breathe in the anesthesia. She was asleep in seconds. I tearfully kissed her goodbye and whispered I love you in her ear...then sobbed as I walked out of the OR doors, leaving her alone in such a scary place. I didn't know what to do with myself... I didn't want to leave her side. Jason and I hugged as soon as I walked out and took off my bunny suit (big white jumpsuit I had to wear) and we both cried holding each other in the middle of the hospital hallway. I didn't care who was around me, my emotions were so high and I felt helpless. The surgery started at about 11:30 and took just over 2 hours. The only thing that got us through those 2 hours was food and mindless stuff on the waiting room TV.

After it was over, her doctor said the surgery went very well and she did great. His exact words were "bring her back in the morning and we'll take the eye patch off, and then she can start to see". Those words hit us really hard...she was finally going to be able to start learning how to see, and her entire world was about to change. Wow, what an emotional moment that was for us. After 3 months of waiting, worrying and wondering, our little girl was about to begin seeing the world. There really are no words that can describe how wonderful that made me feel. A few minutes later we were allowed to go back into the recovery room to be with her. She had a patch over her eye, but it didn't seem to bother her at all. Because of her age, she needed to stay in the recovery area for 6 hours for observation, so we were there for what seemed like forever. She was such a good baby, only crying when she needed to be changed or was hungry. Even the nurses couldn't believe how quiet she was and said they'd never had a baby seem so content after surgery before. We finally left the hospital just after 7pm and got home at about 8:30. We went to bed almost right away since we had to get up first thing in the morning to go back to the hospital. We couldn't wait to see what her new eye was going to look like, and were so excited for her to really be able to "see" for the first time.

We returned to the hospital at about 8:00 the next morning and after a short wait in the waiting room, we were finally allowed to take the patch off. Yes, mommy cried...again. I was so emotional, just waiting to see what hew new eye looked like. How would her brain react to having the patch taken off? What would she be able to see? Would she know she was looking at Mommy and Daddy? It was amazing, and honestly trying to put into words how I felt at that moment is nearly impossible. Her doctor was very happy with how little swelling she had and was impressed that she was opening her eye so much since typically babies don't open their eyes very much on the first day. He gave us a few prescriptions for some antibiotic and steroid eye drops and ointment. She will have to get 1 drop of each one in her eye 4 times a day. As the healing process continues, the frequency of drops will increase. She will need to be seen twice a week for the first month so that the condition of the eye can be monitored and in about 5-6 weeks she will have the stitches taken out.

The swelling had continued to go down as the day went on and she had been keeping her eyes open alot more. She was doing great and we were excited for her!

One thing we noticed alot more since the surgery was that her eyes sometimes aren't moving together or looking in the same direction. (lazy eye) That would hopefully get better as her eyes learn how to focus on objects and her eye muscles get stronger. During the week following her surgery she was scheduled for an evaluation from the early intervention team. They would evaluate her and if she qualified, they will set up a program for her that is tailored to her visual and developmental needs. The road we have in front of us appears to be a long one, but we're just putting one foot in front of the other and trying not to look to far ahead. Hopefully we won't hit many bumps and at the end our little Emily will have 2 healthy eyes and the best eyesight possible.

The Evil That Is Pink Eye...

2009-06-17T15:47:00.000-04:00

Seriously? Pink Eye? Not once, but twicewithin the 3 weeks before the transplant. Emily's surgery had to be postponed because obviously if there is any sign of infection, she can't go through with it.

We have no idea where it came from, but now I was super sensitive to everyone that was by her. Were they sick, did they wash their hands. What did she touch? Where is the Lysol?

Evil you are pink eye! Pure evil.

Emily's First Christmas

2009-06-17T15:36:00.000-04:00

Emily's first Christmas was nice...everyone seemed to be just going about their normal life. I tried to do the same. But it broke my heart when I realized that she might not ever be able to see the beautiful twinkling lights on our Christmas tree, or know what Santa or a Reindeer looks like. She won't even know what a fat man in a red suit looks like because she has no idea what the color red is. Pretty wrapping paper wouldn't matter, except to those who are watching her open a gift or want to take a picture for their own memory. The prospect of Emily being blind hit me really hard over the holidays. She wouldn't know how beautiful snow looks as it's falling either...

I tried to go about my holidays the only way I knew how, baking cookies, shopping, enjoying the sounds of the Christmas music as I wrapped presents. But I knew that a few short weeks later my life would be anything but familiar.

Emily: 2 months old

Some good news....

2009-06-17T15:31:00.000-04:00

I finally got sick of waiting for the other shoe to drop, so I called and spoke with the genetic counselor at Hackensack to find out the results of all those tests Emily had....

All the genetic and metabolic testing that was done has come back normal! So we can safely say that her eye condition is an isolated problem and isn't the cause of some other underlying issue.

That is a huge sigh of relief for us.

Finally Some Answers

2009-06-17T15:15:00.000-04:00

12/1/07:
Emily had her eye exam under anesthesia at Westchester Children's Hospital. We arrived at 1:00 as she was scheduled to go in at 2:00. Originally we were told that we would stay in the recovery area for an hour after she came out of the anesthesia, but when we got there they told us that because of her age they needed to keep her for 6 hours. If she did well we could go home, otherwise if she had any problems (ie...apnea) they would have to keep her overnight. We were completely unprepared to stay that long and were pretty upset about it, but there was nothing we could do. They didn't take her in until about 3:15 (we didn't leave the hospital until almost 10:00). I went into the operating room with her and watched her fall asleep, tears rolling down my face. The entire time she was in there, my heart was filled with such anxiety. Would we get some answers? Will he be able to help her see?

After the exam was finished, Dr. Zaidman came out to talk with us and said she did very well and was in recovery. During his exam he determined that she has Peters' Anomaly, not CHED as previously suspected. The pressure in her eyes was normal, so Glaucoma has been ruled out for now, but there is always a chance that she will develop it. Almost 70% of children with this condition do. The difference between CHED and Peters Anomaly is that CHED only affects the 5th layer of the cornea (there are 5 layers) and Peters Anomaly affects multiple layers. I believe he said it was the 2nd, 3rd and 5th layers. The only treatment for this condition is cornea transplant surgery. One good thing that was found during the exam was that other than the corneas, her eyes are completely normal so hopefully this means that she will have the best vision possible after the surgery.

From what we understand, her condition is caused by a genetic abnormality and was formed during the first trimester of pregnancy. There is currently no prenatal testing that could have detected this problem before she was born.

The doctor told us that he had already cleared a place in his schedule for her surgery at the beginning of January. Within the following week we would be hearing from his office as to a tentative date. Because the surgery relies on a donor cornea, the exact date of the surgery would not be known until the day before. The tentative date would give us an idea of about when it would take place. The Eye Bank in NY was going to be notified that a cornea for her would be needed around that time. When one becomes available, we would be notified and the surgery would be scheduled for the next day. So basically we would be on stand-by for the week surrounding the date we are given. It could be a few days before or a few days after. The surgery itself will take about an hour and a half, but if her body accepts the donor cornea, it should last her entire lifetime. Whether or not she will need to stay overnight at the hospital wasn't known yet, but we would prepare for it just in case. The day after the surgery she would need to be seen in Dr. Zaidman's office for a follow up and from there on she would be seen about 3 times a week for the first month and then twice a week for the second month. The frequency would eventually decrease down to once a month, but because the second eye was going to be done about 8 weeks or so after the first one, the frequency of doctors visits would once again go back to 3 times a week and so on. She would also need to be followed by a Pediatric Ophthalmologist. We were hoping to find one who is in our area, or at least closer to home than Westchester.

As for her prognosis, that was still up in the air and would greatly depend on the quality of the donor tissue, her body's ability to accept it, and the further development of her eyes and vision as she gets older. She would need visual therapy, so I started the process of contacting a state organization to enroll her in Early Intervention. Through this program a therapist would come to our house and work with her. She would need as much visual stimulation as possible to give her the best chance to see well. She also would most likely need glasses, probably as soon as her eyes are healed from the surgery. The specifics for after the surgery is complete were still not known, but we were taking one step at a time. Looking at the big picture and what lies ahead for her and us was and still is completely overwhelming, so we were trying to just focus on what the next step was and go from there.

This was the beginning of a very long road for her and for us as a family. We would need all the love and support we can get, as we tried to get through this very difficult and trying time. We tried to remain positive and optimistic about her future, but as you can imagine this is a very emotionally difficult process. Christmas was just a few weeks away and I just wanted to put this aside and try to enjoy the holiday season. Our little girls first Christmas...and "the calm before the storm".

Depression Sets In

2009-06-17T14:50:00.000-04:00

I will be the first to tell you that I had Post Partum Depression in the months after I had Tyler, my second son. I didn't see it at first, but after months of crying for little or no reason and feeling like nothing was ever going to go my way, I broke down and talked to my doctor about it. I was on medication for a few months and as I started feeling better I took myself off of it. I probably wasn't supposed to do that, but I was much better and not taking the meds anymore gave me hope that the PPD was over.

This was an entirely different type of depression, this was not PPD. This time, my tears were coming from such a deep seeded place of sadness. I would have some good moments when I would just look at her while she's sleeping and think 'wow, how lucky am I to have such a beautiful little girl'. But in all honesty, the moment she would wake up and open her eyes, my heart would sink. It was like reality came back and kicked me straight in the gut. Sometimes when she would cry, I would stand and rock her to calm her down. Having her head lying right over my heart so she could hear the sounds she was used to before she was born. I specifically remember one day about 2 weeks after she was born where I just stood in the living room rocking her and crying my eyes out. All I wanted to do was protect her from all of what she was about to go through. Why couldn't I protect her? I am her mother, mothers are supposed to protect their children. How come I can't do that for her? What kind of mother am I?

I cried alot....I Cried A LOT. I knew my where my depression was coming from and honestly didn't want to waste anytime trying to fix me, I just wanted to fix her. She needed to see the doctors more than I did, so I put myself on the back burner. Trying to convince myself that I was strong enough to get through this. But where do I get the strength from? Is there a magical "be strong" fairy out there who would come in the middle of the night and sprinkle some glitter on me? Is it like coffee? Have a cup of strength in the morning and it will get your day started off right? How do I get through my day without completely falling apart? Most of the time I didn't. I would spend many days just crying, holding Emily as tight as I could, not wanting to put her down for fear something else would happen. If I put her down, I couldn't protect her anymore. So I held her, almost all day, as much as I could. Nothing was going to happen to her as long as she was in my arms.

But that is not reality, all of that was in my head and I knew it wasn't true. How could I protect her from what she was about to go through, if this problem developed while she was still inside my womb? How could I allow this to happen to her? Why didn't I have that mothers intuition feeling in my gut that there was something wrong for all of those 9 months? How did I not know this was happening to her? I felt helpless.

There Are No Words

2009-06-10T19:36:00.000-04:00

After we brought Emily home and tried to adjust to our new reality of life, I became very distant from family and friends. It wasn't that I didn't want or need support from them, I just couldn't bring myself to talk about what was going on. I forced myself to take a phone call from my best friend while lying in bed with Emily sleeping next to me. I hadn't really talked to her much about the specifics of things, and I just completely broke down and sobbed to her on the phone. I was so scared for her, so sad for her and didn't know how to deal with what was going on. I had family, friends, doctors giving me names and numbers of doctors and specialists. Particularly ones in Philadelphia. After we made contacts in NYC, for some reason I completely avoided making the call to a doctor in Philly, mainly because I didn't want to rehash the entire story. It was too raw, too emotional for me to talk about. So I never picked up the phone. I didn't want to drive 3 hours to PA on a weekly basis if we could go to NY. I just couldn't handle it.

Three days after we brought Emmy home, we went into the city to see the cornea specialist at Columbia. The pediatric doctor who saw her in the hospital was also there. Initially a few disorders were ruled out, including cataracts. But as we sat in the exam chair and the two doctors flipped through medical books trying to figure out what the hell was wrong with her I could feel the anxiety building up inside me. Ultimately, we got no definitive answer as to what the problem is or how we will need to correct it. Further testing would need to be done to give a correct diagnosis. We were told that they were not sure if she could see, or how well she will be able to see in the future, but one thing was pretty clear, she would most likely need to have cornea transplant surgery. I was numb, I couldn't put two words together to form any coherent thought, I just wanted to get out of that building and as far away from that office as I possibly could. Before we left, we were referred to a pediatric cornea specialist at Westchester Medical Center who would hopefully correctly diagnose her condition and perform the surgery which would need to be done within the next few months. Jason and I left the office without looking at or speaking to each other. We got into the elevator and I just began sobbing, holding Emily as tight as I could. There were no words to say at that moment.

I did the best I could to pull myself together when the elevator door opened and I was thrust back into the busy lobby of the Eye Institute. We walked out the door and back to the van in the parking garage without saying much. I got to the van, put Emily back in her car seat and kissed her cheek. Jason put the stroller in the back of the van and got in the drivers seat. The moment I closed my door, I completely fell apart. That was probably the lowest moment of my life. I don't think I have ever cried that hard before in my life. What originally started out as tears of sadness quickly turned to anger and panic. We needed to leave, I could not stare at the parking garage wall anymore. I screamed for Jason to get us out of here as fast as he could. It was like I couldn't breathe....just get us out of here - and NOW.

We called our families to meet at Jason's parents house so we could explain what we had been told. When we got there, we sat down at the table and just put it all out there on the table. No one wanted to believe what we were saying, but we all knew it was reality.

When Emily was 12 days old we took her to see the Geneticist who ordered some blood work and urine tests, to which we have not yet received any results. It's very unlikely that there is any underlying genetic or metabolic reason for what has happened, so these tests are basically to just rule everything out.

Comic relief....While we were there, we were left alone with Emily for a little while to try and collect a urine sample. Instead Emily pooped like she had never pooped before. There was yellow baby poop everywhere, all over her, her clothes, the diaper changing pad and the floor of the office where we were changing her. We ALMOST ran out of wipes, which would have been disastrous. And the kicker is that she peed really good into the collection bag, but all the poop contaminated it. Damn poop! Now we had to start all over. Do you know how hard it is to stick a urine collection bag over a newborn baby girls' girlie parts and actually get something to stay inside? Babies that little don't sit up, they lay down. When they lay down, all the pee just goes down into the diaper, it doesn't go sideways into a bag...that would be defying gravity. Who the hell came up with that form of urine collection for a 1 week old? Boys...ok probably not a problem...but girls? Not going to work. We were sent home with a whole bunch of collection bags, we needed to collect more at home and bring it to the lab when we got enough for the testing. Well that didn't go over well either. We ran out of bags because they kept leaking pee all over the place, so I had to get more bags from LabCorp. What a freakin pain in the ass that was. We had to freeze her pee and add tiny little bits at a time into the container because we could never get a full bag. Once all the bags were gone I brought her pee-cicle to the lab and they sent it to The Mayo Clinic to be analyzed. Now the wait begins to get the results, with fingers crossed for only good news.

When we finally met with the cornea specialist at Westchester, he examined her and pretty much came to the same conclusion as the previous doctors, that further testing would need to be done to be 100% sure of what is wrong. He narrowed it down to one of a couple possibilities. Glaucoma, C.H.E.D. or Peters Anomaly. He doesn't think it's Glaucoma but he can't rule it out just yet because getting an accurate eye pressure reading on an infant is difficult. We knew from the first doctor we saw that Peters Anomaly seems to be unlikely because there are usually other indications of that disorder which don't seem to be present in Emily, ie...heart or lung problems. So Dr. Zaidman seems to think it is CHED, which stands for Congenital Hereditary Endothelial Dystrophy. The course of treatment for this would be the cornea transplant surgery. We had to pretty much come to terms with the fact that she will need to have the transplant surgery, we want her to be able to see and if this is what needs to be done, then we will get through it. We will take one step at a time and move forward with treatment as we go along. Here is what we knew would happen. In order for the doctor to fully examine her and get a true diagnosis, he would need to put her under anesthesia in the operating room. This is when he would be able to do a retina scan, take accurate readings of the pressure in her eyes to rule out Glaucoma, and run other tests. That was to be done when she was about 5-6 weeks old so that she can tolerate the anesthesia better. Once this exam is done we would know for sure what is wrong and could then further discuss a treatment plan. In the event that it is Glaucoma, he had given her an eye drop prescription that will prevent the pressure in her eyes from getting worse. She needed to stop using the drops about 4-5 days before the exam under anesthesia so an accurate reading can be taken. If she does need to have the surgery, it would be done one eye at a time. The first eye would be done when she is about 8-9 weeks old, and the second eye about 4-6 weeks later. At about 8-9 weeks is when her eye will best be able to accept the donor cornea. Any earlier than that and the risk of rejecting the transplant is higher. The second eye will be done after the first eye has had time to heal.

After the surgery has been done, she would need alot of eye drops, follow up doctors visits and would probably need to wear glasses. But if she can see we will do whatever it takes. We just want her to be able to see the world and the people that love her.

It was a tough pill to swallow, but we left his office with a feeling of hope. A feeling that maybe she will be ok in time. And that is all we can ask for, for there to always be hope for her.

Uncertainty, Fear & Denial

2009-06-10T14:35:00.000-04:00

Our 4 days in the hospital was anything but normal. While still in the hospital we were given the name and phone number of a Geneticist at Hackensack University Medical Center. We were told to contact him and set up an appointment as soon as possible to start genetic testing to find out if there was a metabolic or genetic reason why this happened to her and if there was anything else wrong with her. We were also put in touch with Dr. Florakis's office at Columbia. They wanted us to be discharged early from the hospital in order to bring her to be seen by him. I spent most of the last 2 days in the hospital on the phone with doctors instead of focusing on bonding with my baby. And being discharged early to go straight to NYC for a consult was not my idea of how to welcome a new baby into our lives. Your first day home with a baby is supposed to be filled with love and excitement and I was very sad that it didn't appear as though that was going to happen for us. There was even talk about having medical transport bring us from Ridgewood to NYC since I was still recovering from the C-section.

This is not what was supposed to happen, this is not how I envisioned these first days with my baby being, why was this happening to us? Why?....That was a question that we would never be able to get an answer to. I went through the emotions of "was this my fault", "did I do something wrong", "could this have been prevented?"...that answer was easier to say than to accept....No, this was not my fault, No I didn't do anything wrong, and No this couldn't have been prevented. But that didn't make me feel any better. I was scared to death. What was her future going to be like? How was her condition going to affect our family, would the boys understand that she's not going to be able to do the things that they can...this could not be happening to us, these things only happen to other people. I felt like I was in a bad dream and couldn't wake up.

We eventually arranged for Emily to be seen by the Geneticist and Dr. Florakis a few days after we were to be discharged, allowing us more time to get settled as a family and prepare ourselves for what was lying ahead of us. On the day we were to be discharged, the hospital needed to take some blood and urine samples to get some initial genetic testing underway, except this meant she needed a catheter. The nurse said we could leave as soon as they got enough urine to supply the lab with what they needed to do multiple tests. We sat and waited for hours for that little tube to fill up, except the nurse didn't realize that the catheter wasn't in place correctly and we lost everything except a small amount in the bottom. We were really frustrated at that point because it was all for nothing. But we were going home...

We had left the protective walls of the hospital, now exposed to all the fear and uncertainty of the long dark road ahead of us instead of planning the bright and sunny future for our baby girl. How do you handle something of this magnitude? We didn't know even where to start.

The Heartbreaking News

2009-03-20T13:20:00.000-04:00

The day after Emily was born started off just as I expected, routine post-natal care and an early morning visit with my new baby to feed her and bond with her. As the day progressed nurses, doctors and visitors came and went. But that day was far from routine. No one could have prepared us for what we were about to experience.

Dr. Chiang is a Pediatric Ophthalmologist from Columbia University in NYC who was asked to come and examine Emily. We were waiting all day for him to arrive and finally around 5:00 or so he arrived. The nurses wheeled her out of the room in her cute little bassinet so that he could examine her. When he was done, he came and talked to us. Our families were there, so they heard the news first hand.

He was very matter of fact about it, he showed no emotion and didn't sugar coat it. Which kind of didn't settle well with me. There was something about him that I just didn't like and it had nothing to do with what he said. But none the less it was the words he did say that still ring so clearly in my mind. Emily's corneas' were cloudy, but she had responded to light during the exam, which meant she had at least some vision. But the extent to which she would be able to see well or see at all could not be determined. He could not tell us exactly what was wrong with her, but suspected it was something called Sclerocornea, which meant the white parts of her eyes have grown over the clear cornea. He could not see through her corneas to the inside of her eye to determine whether or not her retina's were formed properly, which meant she could probably not see out even if they were. She was blind.

I asked what treatment was available for her condition, what would enable her to see. The answer was not easy to hear...She would need a cornea transplant...and soon. The quicker the transplant is done, the better chance she will have at developing vision. He referred us to a cornea specialist that he works with at Columbia, Dr. Florakis, and said that we should meet with him as soon as possible. He even suggested that we be discharged from the hospital early so that we could take her right away. He gave us his card and Dr. Florakis' phone number and left.

I was frozen, paralyzed in every way possible. There were no words at that moment, only tears and heartbreaking thoughts of our brand new baby girl needing surgery and possibly being blind for her entire life. The only thing I could do was cling to Jason as hard as I could and cry. I cried harder than I have ever cried before. I remember shortly after Dr. Chiang left, Jason's brothers family came to visit. I couldn't even begin to tell them what we had just heard, so I asked someone to explain to them what was going on, they must have gone out in the hall to talk because I don't remember hearing what was said. The emotions that ran through me that day are indescribable. I would never wish for anyone to ever feel the pain that I felt that day. Suddenly the joy and excitement of our new little girl's arrival, turned to fear, anxiety and sadness. Our life was turned upside down in that moment, and it would never be the same again.

Our baby's life had just begun and was already filled with so much uncertainty.

We felt helpless and heartbroken.

October 25th, 2007

2009-03-16T15:03:00.001-04:00

The morning started out with great excitement...we were going to have a baby today! I was scheduled for a c-section at 9:30 am. We arrived at the hospital and the nurses began their pre-op monitoring and procedures. I was actually having contractions, I could see them on the monitor, but they were small ones, not enough to be painful but just enough to be uncomfortable. The surgery started just about on time, which is ironic in hindsight. Everyone had bets on what time the baby would be born, but my heart was set on 10:13...after all there had to be a 13 in there somewhere right?

Just as Dr. Weidman came in a got started with the surgery, a nurse asked him if he wanted music on and he said yes. It was not a radio, it was a CD. I remember that because there were no commercials in between songs. I have no idea what the first song was, but when it ended and I heard the beginning notes of the next song I immediately looked at Jason and began to cry. When I was pregnant with Matthew, I made a mix of songs that I wanted to play while I was in labor. Ideally I wanted this one song to be played right after Matthew was born. It's called "I could not ask for more" by Sarah Evans. The words are just so powerful and emotional. Sadly, I ended up with a c-section and never got to play the song. But on that day, in that OR on that CD...I finally did get to hear it. I couldn't believe it, of all the songs in the world...that song just happens to be on the playlist that day? I cried through the entire song...it was like we had come full circle...our last child enters our lives in a way we had hoped to welcome our first.

As Dr. Weidman prepared to pull the baby out, Jason was watching the clock...at 10:13 am...Emily Elizabeth was born! It's a GIRL! We were so surprised and couldn't believe it. Jason's first words to me were "We did it baby, we did it...It's a girl". We had a daughter and it felt amazing! I couldn't stop crying, we were both so happy. After she was cleaned off and wrapped up, they brought her over to us and handed her to Jason. He was so proud, he had a little girl now and it made us both feel so complete.

But I saw it right away. There was something not quite right about her eyes. I didn't question it at first because I figured it was because of the ointment that they put in a babys eyes right after birth. They looked foggy to me, but I was so completely in love with her that I dismissed it and was just enjoying the new thoughts of having some pink in the house!

After they wheeled me into my room, Jason eventually made his way to find me. He had been in the nursery with Emily watching her get a bath and having some routine tests done. He came and told me that he heard one of the nurses say to the others in the room, "come and look at how beautiful her eyes are". I remember saying that "she must have the most beautiful eyes they've ever seen". I guess I was right...they never had seen eyes quite like hers before...neither did we.

Later when they brought her to me, a nurse came in and said that they tested her eyes and she is responding to light which is good, but since her eyes look cloudy they called in a pediatric opthalmologist to come and examine her the following day. No-one really told us how serious this was. We were scared. The first thing that crossed my mind was that she was blind, but I couldn't bring myself to say it. I immediately went into new mommy mode and just started to take care of her and teach her to nurse and tried to put some of the scary thoughts in the back of my mind until we knew what was wrong with her. After all, today was her birthday and we were all just enjoying the fact that she was a girl!

It's been 507 days

2009-03-16T14:30:00.001-04:00

It has taken me more than 16 months to sit down and write about Emily's condition. Up until now, I have only talked about my feelings with some close friends and my husband. I need to do this, I need to get these feelings out onto a screen and out of my head. I think the sooner I can do that, the sooner I can start to heal. I blogged throughout my entire pregnancy and my last post was the day before Emily was born, 507 days ago. I had planned on blogging about her birth, our new family and the new life that we were bringing into this world. But in the days, weeks and months following her birth...I couldn't. In fact for the first month of Emily's life I was in shock, in disbelief and overwhelmed with heartache for my little girl. I couldn't do much more than cry. I didn't want to talk to friends or family about it because I couldn't bring myself to actually say the words that needed to be said.

Emily was born blind.

But today I am stronger than I was then. I have come to terms with Emily's condition and accepted that it is now part of my life, our lives. It has been a long and hard 16 months, and the next few months don't look much brighter. But we will make it through, one day at a time. I want to go back to the beginning and write about how we got to where we are today. So that is where I will start...

Her Eyes...

2009-03-16T14:21:00.000-04:00

Her eyes, that's where hope lies.
That's where blue skies
Meet the sunrise.
Her eyes, that's where I go
When I go home.

...She got the kinda strength that every man wishes he had.

...She doesn't know the word 'impossible'
Don't care where I've been and doesn't care where we're goin' to...

...She's beautiful. So beautiful.

(Words by Pat Monahan..."Her Eyes")