So, this eye business has pretty much monopolized the blog (my life) lately, so I wanted to give a re-cap of how it has evolved because people are always asking me, "What is wrong exactly?"
First, here is basically what is wrong: He was born with a unilateral congenital pediatric cataract. This means that he was born with it & it's only in 1 eye. There is no reason it occurred, just random. This happens to about 1 in 10,000 babies, so just more proof that he is unique. Just like in adults, it's a blurry spot on his eye that prevents him from seeing perfectly. However, NOT at all like adults, his eye is not developed. What this means is that there is no easy cure. When an adult gets a cataract, it just has to be removed. Vision in kids develops during the first 6 years and that is something only his brain can do. As of now, his brain has been preferring the right eye because it is clear. This is why we have to patch the "good" right eye. We are trying to train his brain to use the left eye, too. This means that surgery is not the answer. It is the next step on the path toward the answer but we are going to have a lot of doctor
appts, glasses and,of course, patches, in our future. Based on the what we learned at our last
appt., he is thinking patching until at least 6 or 7.
a timeline...
January 7, 2010:The most perfect baby ever was born with the most amazing blue eyes. My first feelings on seeing them were shock (I thought brown were dominant!) and comfort (they looked like Brandon's)
January 8, 2010 The first stranger complimented Anderson's blue eyes. This has continued to the present day.
Sometime in September 2011 After much encouraging by Aunt Paula, who works at the Southern College of Optometry, I took him to an optometrist because it was free.The program is called
infantsee. (
http://www.infantsee.com/) Spread the word!! It's never to early to get your eyes checked out! Yes, I have become an eye advocate. The optometrist said, "Oh, he does have a little cataract. You might want to follow up on that." I oddly enough remember that one sentence very vividly even though I had no idea the real meaning at the time.
December 7, 2011 I took him to his first visit with the pediatric
ophthalmologist in Knoxville with mom. Brandon didn't even take off of work because we didn't think it was a big deal. I was fully expecting a, "See you in a year or two." After forever in the office (dilating takes awhile), she sent us home with
instructions to patch his good eye 2 hours a day. That was so shocking to us and I remember thinking that was impossible. Now, 2 hours would be nothing! That's basically before breakfast! Oh, perspective.
January 11, 2011Another visit to the Knox
ped. op. was a little more shocking as we were told surgery is "very likely" and to increase patching to 4 hours. His
appt was the day before but we had too much snow so it was moved. I remember being so anxious for the
appt and wanting it to be over just so we would know.
January 18, 20112
nd opinion time. We were so lucky to be hooked up with Dr.
Cogen in
Bham literally a week after the last
appt. When we pulled into the 6 leveled parking lot for the EYE hospital, I new it was pretty legit. While we distracted Anderson with snacks & things from my purse, I read every thank you card in the waiting room (most were about something trivial like a clogged tear duct)
desperate for some sign, anything at all, that would make me realize this was going to be
ok. And, it was. The doc patiently explained everything using great analogies, was much more hopeful and the nurse even handed me a
kleenex when I started tearing up at one point! I called the next day to schedule surgery.
January 22, 2011After 7 doctor appointments in 11 days due to eye visits, staph infection & a 12 month check up, Anderson & I shared our first milkshake. (peppermint chocolate chip from
ChickfilA) I have a feeling it will not be our last. On a funny note, we were walking around Babies R Us as we drank it & he was wearing the patch. If only I had carried my camera.... Pregnant Public was in absolute shock at the awful mother who clearly had blinded her kid with the non-organic, full of sugar milkshake. I kept saying things like, "Now, this is it. You know you only get one milkshake before lunch!"
January 29
Worst day of patching so far. I cried 3 times, we went through 11 patches & I am pretty sure Brandon was looking forward to going to work that night.
Most days in February
We were able to keep the patch on for 5 hours. It took a lot of patches, toys, distractions and Noni working her magic.
February 17, 2011Today. The day before the surgery. Let me just say, that I fully realize my son is not having heart surgery or some kind of last-chance for survival thing. But, all that I know, all that my heart knows, is that tomorrow they are going to take him from me. Even if it is for only a few hours, I won't be there. What if he cries? I am sure he will. He is not going to understand why we are just letting him go with them. This is the most real that awful has ever been to me so I really can't console myself with, "It could be worse." It's the worst for me. I am not trying to be super negative, I am just scared and trying to be honest.Ok, I kind of feel better just typing that. I know the next post will be:successful surgery! no need for a patch anymore! Ok, maybe not that last part, but I know the first part will be true! Now, off to hang out with my favorite little pirate.