Tuesday, July 29, 2008
As previous noted I have been getting migraines. We have had no idea why all of a sudden they would creep up and I would be sick with one. Well, I think I might have an idea.
This morning was our functional vision assessment. What does that mean? It means we have to see what vision Ty has, how he uses what he has and what will we be looking at long term.
Anyone who knows Tyler knows that he can see without a question. How well he can see has always been a question. His doc here in Arizona doesn't think it is very good at all. The prescription we have is very strong and borders legally blind. ( -13 is considered legally blind, Ty is at -9) To put into perspective, I see at -2.75. I can't see ANYTHING without my glasses. Ty's grandma can't see anything even with her glasses. Although she has not had her prescription put into words like minus something I am going to put my "expert" opinion on what she can see and would put it to roughly at -9 or ten ( sorry Grandma we all know you can't see)
We have had Ty in glasses that he doesn't like to wear for over a year now. While we haven't seen a decrease in what he can see we have seen that he doesn't want to wear his glasses and he has a "lazy" eye. We are watching it to see if it is lazy or if the vision is just gone.
A little background ( aka boring medical stuff) to help you understand what we did to get us from point A to point B.
As babies come early they are given life support. The life support and low birth weight ( LBW) and early gestation play a part in the development of the eyes. The later gestation they are born at the higher their weight is and the amount of support needed to sustain life less. In turn they LBW babies of 800 grams or so are at a VERY increased risk for blindness, hearing and other anomalies of fun.
ROP comes in 5 stages. Stage five is retinal detachment and results in blindness, Stage 4 is the start of retinal detachment and surgery is needed. Stage 4 can still result in blindness. Stage 3 has zones in it that describes the severity of the disease. 1. outer eye 2. inner eye, 3. edge of the retina. Stage 2 is outer edge of the eye and Stage one is very minimal damage if any.
Ty is the unfortunate recipient of not only stage 3 zone 3 he is also the recipient of RUSH disease meaning it went from stage 1 to stage 3 in 24 hours. Surgery was performed to save whatever sight they could withing 72 hours of finding the RUSH disease.
Our appointments at the eye doc are frequent but I thought it was to see if his eyes were improving. I was nicely informed by the Doc that Ty's retinas could detach at any time letting my sweet baby go blind. So they watch him closely since he is at an increase risk.
Anyways, his functional exam showed that he has little peripheral vision and he compensates well. He will be needing VERY large print for reading so reading will be a struggle because the print will have to be so large that we will have to find other means for him. He might be eligible to read braille or use other devices as he learns to read. He however MUST be reading and not just relying on the other stuff. This of course goes into play much later.
Ty has no idea he can't see. He has "not seen" his whole life. So we are just taking the news as what it is. ( Well most of us anyway)
This is where the mom part takes over and you can't help but feel sad for Tyler. I feel sad that I was not able to keep him "in" and safe. That him coming so early has caused him such pain. Not just the looks that people give you but that he can't walk without an obivous "issue" and that his eyes do some pretty cool funky shaking. Is it my fault that these things are stuff he has to deal with.
The mom guilt kicks up and I wonder that fateful day in the NICU when me and Dallas had to decide if we were ok with a kid in a wheelchair and we said we loved him so much that we would "pimp" it out for him. Yet now we are 3 years down the road and I can't help but get hit by the ugly monster. The ugly monster that wonders at 16 will he drive, or at 21 will he get married. I know a mission is out of the question but what will it all be like for him.( And yes all these thoughts come from trying to figure out preschool)
The ugly monster that realizes that people are cruel. Even when they don't "mean to" but their actions are ones that make me as a mom sad for my choice made out of love. I wouldn't change not having him here with me. I would change the struggles he has. I would take them away from him in a heart beat. I would take all those people who laugh, and make jokes ( directly or indirectly related to him) and hope they get into our bubble. I can't help the monster go away. I can't make others be kind and loving. BUT I going to make good choices for Tyler. That we will still move on and be his mom and still try and teach others.
Ok , I think I am going to be ok. I hate making decisions that will impact more than today. Did you know what we eat for lunch will only impact what we have for dinner? Prechool... it will effect a lot!