The Marinellos

Monday, August 16, 2010

Oh Boy!

I just uploaded pictures that we got done in December on my other blog and Seth looked so amazing. These past few weeks or about a month Seth just hasn't looked that great. I have no idea if it has to do with his blood, seizures, heart, or the fact that he attacks his face all the time but it makes me sad that he looks sick sometimes. I just wish that he could look healthy again. I have been starting to get overwhelmed again with doctors and just stuff with Seth and I get worried very easily. I know that everything will be okay and that God has everything in control and everything He does is perfect but sometimes my mind just takes a while to get there. I also get worried/anxious when I think about having this little girl and how I will handle everything. Our planning was not perfect but Gods planning is so I will trust in that.

About a month ago we have ASDB come out again and I am not sure if I posted about it but we were told that he does not have CVI but rather ONH and that the eye doctor report actually shows nothing to do with CVI and has ONH listed. The thing is we knew that he had ONH (optic nerve hypoplasia) which means his optic never was not fully developed and we have known that since he was 4 months old. We were just told along with that, that he has CVI. So I have to get him into the eye doctor to find out what he really has (not till Sept.) The problem is that we have been doing things to help him as if he had CVI not ONH. ONH there are other things to do that involve bright colors and waiting to see what he really sees. It is like CVI in that it wont get worse and it can get better. The eye report that I read from his doc also says his pupils were non responsive to light which is not the best thing. I looked it up online dealing with ONH and basically it means it is a more severe case. But this will all be a waiting game until he can tell us what he sees. We also found out that his eyes are actually sensitive to sun light and it actually hurts his eyes to be out in the sun (thats why he NEVER opens his eyes when we are outside) so he needs to wear sunglasses when he is outside. 

So today I went to the doctors and right by my OB is his eye doctors office and inside is a children glasses store and they sell these sunglasses that work well for small kiddos so I got two pairs just in case I lose one. Thursday morning we have ASDB coming again and she will be bringing some more sunglasses (baby bandz) that strap to his head but we have already tried these and he hate them. Today the lady at see saw optical said that a lot of babies have had problems with them (baby bandz) so I am glad that I bought the ones at the store. Here is a few pictures of him in his new cool shades!





1 comment:

  1. Praying for you and your little Seth. It will be so nice for you to have confirmation, so you can figure out what's the best kind of care he needs. I love his cool new shades :).

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