Two Surgeries in Two Weeks

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!