January 6, 2012 - Left eye - another Corneal Ulcer and infection. We treated her with antibiotic ointment every 4 hours, drops every hour around the clock for a week. Then we dropped down to every 4 hours, but still had to give them to her throughout the night. Medications continued for almost 2 months, finally only down to twice a day. But as the ulcer healed (which was very slow), it made the scarring in her left eye bigger than it had been before. Dr. Zaidman believed she had learned how to see around the scarring, but began wondering how much she could really see.
I started getting really depressed...My heart was hurting...I was struggling with why Emily has had to bear the burden of blindness and scared for what her future may be like. She will always be "different" to other kids. Right now she doesn't realize that physically her eyes are different than others, but someday she will. And her self esteem will inevitably suffer. I never want her to feel bad about herself, feel the pain of ridicule or failure. I can only protect her from the harsh reality of our world for so long...and it breaks my heart.
March 18, 2012
I noticed a red spot, like a blood blister, on the surface of her cornea on her right eye. I knew it wasn't something that had been there earlier in the day and I began to panic thinking that it was a sign of a perforation in her cornea. So at 8pm we drove out to Westchester to take her to the Emergency Room. The ophthalmologist on call happened to be one of the residents that had seen Emily in the office and she was great with her. She took a culture, used the slit lamp to examine her and determined that the red spot was a dilated blood vessel caused by a scratch on her cornea and/or the possible infection. She called Dr. Zaidman and explained what she saw and then gave us some new drops. The next day we saw Dr. Z and he was not concerned with the blood vessel at all. Since there was a scratch on the cornea we treated it with new meds that she would hopefully respond well to. It appeared as though she had built up a resistance to the one antibiotic drop she has been on which would explain why she keeps getting infections. He hoped the scratch would heal quickly without damaging the cornea or causing scarring. Thankfully it wasn't as severe as we had thought the night before, but we were right to bring her to the ER. We also found out that the left eye was NOT infected 2 weeks ago, but it looks much much better than it did before. No infection, increase in meds didn't matter because she is resistant to it, it looks much Better and the only thing is she isn't on the Tobrex anymore? So...maybe I was right and it was toxicity from the Tobrex ointment. Of course he won't say that, but that's my take on it.
The surprise of the day was when Dr. Z mentioned that the scarring on the left eye may need to be addressed, because as she gets older and begins to learn to read, it may impede her vision. So...to my surprise he said a 3rd transplant may be necessary. I had been under the assumption that a 3rd transplant wasn't something he would consider. Maybe his opinion changed since then, but we know the success rate lessens with each one. I was happy to hear he would consider it because I wanted her to have the best vision possible.
April 8, 2012 - Easter
Could she be any cuter or HAPPIER?!?!?!
These are two of the last pictures I have of her before devastation hit. It's bittersweet because I don't know at what point things took a drastic turn for the worse. She has never looked as beautiful, innocent and full of joy as she does in those photos. My sweet Emily...My heart is overflowing with love for you.
16 days later...
April 24, 2012 - At a follow up with Dr. Zaidman, I mentioned that I thought the scarring in the left cornea looked a little bigger than before. He began looking closer at it and suggested we do an ultrasound because he saw something he wasn't sure about. After the ultrasound, he showed me an area on the screen behind her lens implant that he didn't understand. There was something there, but he didn't know what it was. It could have been a calcium buildup or scar tissue that formed around the tube from the Glaucoma valve, but he couldn't tell. He wanted me to take her in to see Dr. Kane as soon as possible. But it wasn't until he mentioned that he wanted a "Retina specialist" there as well, that I was really alarmed. Immediately my heart sank and I knew that the "something" he saw could be her retina...he didn't say that, but in my heart I knew.
That night I went for a drive, I needed to get out of the house. My mind was racing a mile a minute and I ended up at a friends house...part of my heart is probably still lying on their floor because it poured out of my eyes like a river. I wasn't giving up hope that the "something" was actually "nothing" or at least nothing "serious". But I was scared to death that my intuition was right and that her retina had detached. I felt better after talking it out with them, but the gaping abyss in my stomach was still there.
April 25, 2012 - Dr. Kane examined her, but had no idea what he would see...
Dr Kane, Dr. Schubert and Dr. Lopez all did their own ultrasounds...all 3 doctors agreed...her retina had detached. Sitting in Dr. Lopez's office trying to maintain my composure, but not doing a very good job at it, I asked the question that I already knew the answer to. Through stifled tears I asked "So can she see anything right now"? ......
"No, she only sees darkness with that eye..."
...the sound of my shattering heart was probably heard clear across the city.
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