We had something amazing happen last week. Isaiah slid down the hall way and unfortunately, his head met with a small finishing nail that had worked it's way out of the trim. He cried and I had that old, familiar moment of panic when I realized it had hit scar tissue and was bleeding. That's not the amazing part, of course. The amazing part is that by the next day there was just a small scab, and by the end of the week it was healed. Totally healed. On the scar. The worst of his scars, no less. On his old scalp that would have resulted in infection and an open wound that would have taken months to heal, if it ever did.
Shortly after surgery it appeared that the scars on his scalp, although considerably smaller, would still be as fragile as they were before. While the skin on his scalp will never be "normal" it seems that for now at least, it isn't as fragile as it used to be!
Also in the amazing category: he has finally started remembering his name every time he's asked. Several months ago he started remembering it sometimes, and then it became often, but now he remembers it every. single. time. Before we know it he will start remembering his age every time (except that keeps changing every year, so maybe not). Soon we're hoping he'll start remembering at least a couple of colors on a regular basis. BTW, his memory and cognitive issues are probably not related to AOS as much as they are to prenatal drug exposure...just thought I should throw that tid bit in there for my AOS friends that are reading.
-----------------------------------------------------------------------------------------------
Will's Eyes
Oh boy. When we got Will we were told he had retinopathy of prematurity (ROP) and he needed glasses, and that was pretty much the extent of what we knew about his eyes. Due to some issues that recently arose I found it necessary to find a new eye doctor for him, and boy am I glad I did! The new eye doctor explained ROP to me, and then after thoroughly examining his eyes during 2 visits over the course of a week he was able to give us a really good idea of what and how Will sees.
The bad news is that Will's eyes do not function independently. If one eye is covered the other eye is blind, whether he's wearing his glasses or not. Like, he doesn't even have 20/600 vision, blind, and apparently at that point they don't bother to continue to measure. Together, without his glasses his vision is 20/600. With glasses he is able to see at 20/70 with both eyes...which I gotta tell ya, isn't so great.
He has a long list of things that are wrong with his eyes, but the problem isn't entirely in his eyes. It's partially in his brain. It turns out that the alcohol exposure he suffered before birth, combined with being born at 26 weeks and suffering several brain bleeds has damaged his brain's ability to operate his eyes and interpret what it sees.
As bad as the news was, I am so thankful to have an understanding of what is happening, have a game plan for what could happen and most importantly, to have found an eye doctor who is knowledgeable about Noonans Syndrome and Fetal Alcohol Spectrum Disorder AND has a fantastic chair side manner.
The good news is that he was SO excited to pick out his new glasses, and his enthusiasm and joy was, as always, infectious. He insists that his current glasses are not brown, but are "caramel" and he wanted another pair of caramel glasses, but they could be a little lighter or a little darker than his current glasses, but if they were "a little darker they wouldn't be caramel anymore", because then they would be black. He ended up picking out black frames :)
Subscribe to:
Post Comments (Atom)
0 comments:
Post a Comment