My thoughts are still jumbled about what we found out today. On one hand it's the same as we already knew from last weeks eye visit but with a few new developments. The 3 hour ride home helped me clear up a few things but I don't think I've fully resolved it in my mind yet. The new developments are that her eyes are worse than we thought. The first doctor let her cover her eye with her own hand, apparently she was peeking so her vision was bad but not what it really is. Her vision in her bad eye today was 20/300 which is a step beyond legally blind. Her good eye is holding steady though, so we'll just keep watch on it and hopefully it will stay stable for awhile.
So, this is the deal. She's having surgery at Riley on July 6th. The cataract in her left eye IS her lens so she will get an implant lens. They guess at the strength since she's so young and he vision isn't fully developed. As the doctor explained to us today, the surgery is the easy part. The rehabing of her eye is the hard part. Hopefully after the surgery her vision will be "better" (but still not near good) in her bad eye so in order to strengthen it her good eye will have to be patched so she is forced to use the bad eye. This sounds harmless for the most part but she will have to wear a patch 4-6 hours a day-everyday-until she is 8 years old. That's everyday, for 5 years. Plus glasses for the rest of her life. If you think like me, you might be wondering "If she's blind in the left eye and they patch her right eye, will she be running into things?" This is the exact question I asked today. The answer was "Yes she will". Great, that's reassuring. The doctor explained it's like a baby learning to walk, bumping into things and falling down but once her eye strengthens over time she will get better at it. I guess that's supposed to be comforting. Scotty asked how common congenital cataracts are in a 3yr old. The answer was "General population-extremely rare, at Riley-not as rare." I feel two things about that statement. 1) of course it's extremely rare, this is Aly we're talking about. 2) at least we're in good hands and they are used to dealing with this sort of thing.
This may not seem like a big deal, and compared to some of the issues we deal with it's not AS big. After all, lots of kids get glasses at young ages and lots of kids are supposed to wear eye patches, this is of course true. But really after all Aly has gone through, will go through and deals with everyday-another surgery and daily patching of her eye plus losing the ability to see once the patch is on, is just frustrating. That being said, I reiterate my feelings from my last post. I am not in control and I take comfort in that.
To put things in perspective, we were in the gift shop (buying Aly the toy we promised) and a boy about 10 or 11 came up next to us. He had obvious physically deformities and he had a shaved spot on his head with a monitor screwed into his scalp. He bent down next to Aly and asked her what her name was. She told him and then asked him what his name was. He said "my name is Gus, can you say Gus?" she said "Hi Gus" and he smiled at her. He has everything stacked against him but yet he was so sweet to a little girl that just happened to be standing next to him. I really think God makes up for a person's shortcomings (for lack of a better word) with other attributes. All you had to do was look at that boy and know he had a great personality and has probably a better outlook on life than most people. I think that about Aly too. She's been through so much and yet she is such a sweet little girl. She captures the heart of everyone she comes in contact with. It doesn't hurt that she is tiny with blonde curls!
So in the spirit of accepting the things I cannot change, I am determined to change the things I can. So I am starting with what my family puts into their bodies. I admit that I am a "stress eater" and I cling to that excuse when I find myself eating unnecessary things. I will leave a doctors appt and drive through McDs b/c that is something I can control. So, if I DO have control over that then I have the control to NOT do that. This is not the start of a diet or weight loss plan, this is the start of me regaining control over SOMETHING in my life. Oh, and if you see me with a sweet tea-get over it- I CHOOSE sweet tea!!! :-)
I will end with a funny kid story. As I'm writing this blog, Scotty is rebuilding Cade's bike. Cade of course is all up in his business, asking questions, touching things, dropping things, etc. I tell him to take his sister and go play in his room. He stomps off with Aly following behind and says "Nobody likes us". Aly says "but we like each other, you love me and I love you". Scotty decides to go in there and break up their pity party. He walks in the bedroom and says "Hey, I like you both and I love you both", Aly says "Ok, but you're still selfish!" That would be a comment she learned from her brother! At least they form a united front!!
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