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!
4 comments:
What a powerful post Nancy. I'm sorry you're having to deal with all the stress and sadness. It's hard to not blame ourselves for things that have to do with our children, but know (I know you do, but I'm saying it anyways) that you had NOTHING to do with when and why Ty came when he did. Sending hugs your way :)
One of the great resources, we as parents have is the power of prayer. The only person that knows EVERYTHING that is and will be is our Heavenly Father. Remember that it wasn't a decision that you made alone and it wasn't a decision that Dallas made alone, it was a decision that Heavenly Father made. So why not talk to the man that knows everything...he will know how to help you, he will guide you, he will hold you heart in his hand and he leads you to the decisions that you need to make. He knows what you are going through and all the feelings that you are feeling. After all, he sent his son to be ridiculed, beaten, teased, and ultimately killed. He had to sit there and watch them and allow it to happen. He could have changed things in a heart beat, I am sure that he would have taken every single pain and heartache that his son was going through upon himself, but he didn't. He allowed it to happen so that we would know and understand that He knows. He knows every single emotion that you are feeling, but he also knows the end results.
I won't even say that I know what you are going through because I don't, but I do know that with Heavenly Fathers help you will make the right decision. I do know how hard it is to make a decision on your childs behalf and hope that they don't hate you for the rest of your life or end up in therapy because of it, but that is why the Lord is there and he wants you to call on him and cry to him and allow him to help you and comfort you.
I gave this quote to Karen right after Joy died and it says "Prayer doesn't make things possible, only bearable." It is through prayer that we are able to make it through every day and through those hard decisions.
Remember, don't overthink things and make them bigger than what they really are. I don't mean that to dismiss your feelings, but sometimes we have tendency to overthink things, it is just mother nature and a womens downfall!
Preschool is a big deal. Brooklynn didn't have any special needs and I was still trying to weigh the pros and cons of different schools and really stressed myself out. If Ty gets a teacher who loves him and can teach him the way he likes to be taught he can take leaps and bounds. I hope you find a place that will be great for both of you!
My intention of this comment is to give you hope for Tyler and not creep you out that someone such as myself is reading your blog.
I am a former preemie, 32 week, born in 1989, so not a micropreemie, but none-the-less a preemie. At the time that I was born, they did not know about ROP. And they did not understand the correlation between over oxygenating preemies and the loss of their eyesight. So I had three strikes against me, born 8 weeks too soon, no knowledge of ROP and no understanding of the affects of over oxygenation on the eyesight of preemies. Anyways... I guess my point is, here at 19, I am proof that will poor vision you can live a normal life and succeed. (I am studying neonatal nursing currently)
My vision is this. -19.5 in my left eye and -9.75 in my right eye.
Like Tyler, I have little to no peripheral vision, but I compensate. I compensate enough that I am able to drive, pass tests necessary for nursing, specially neonatal, and as I am sure you know, teeny tiny things are involved in NICU nursing. I have never used large print books and have always done the standard books throughout school.
I wore glasses from 9 months old until now...although now I am one of those contact wearers that doctors cringe at because I never take them out. When I was 8, my opthamologist tried hard contact lenses. I think I probably tolerated those for a month or so, but the fact that I could not put them in or remove them by myself made me hate them. When I got to high school we found contacts strong enough for my left eye (-19) and I was able to wear soft contact lens and have since. I also have astigmatism but with toric contact lens that is able to be corrected as well.
My retinas are still unstable and will be because there was no surgery performed to stabilize them. My vision has remained relatively unchanging since about age 12, though, so we are hopeful that it has stopped changing.
Even with eyesight that your little man has, he can do so much. Even with the prescription numbers that he has been given that sound so grim and point so close to legally blind, there is hope, so much hope that Tyler can live as if he has no visual impairments.
Please, keep the faith that with corrective lenses and someday with contacts or the advancement of Versys (rhymes with precise) lens implants (they should be to the strength that both Tyler and I would require by 2012) that he will be able to live a life that is not impaired by vision in anyway other that being simply inconvenienced by glasses or contacts.
I am a living example that someone who is legally blind in one eye, and close to it in the other can succeed. Tyler can do it too! I believe it!
Prayers for Tyler and your family. You are all so strong.
And please, feel free to drop me an email if you want some more information from me about the eyesight journey. I wish you all the best.
kelly.mchugh@marquette.edu
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