Monday, April 25, 2011

Scratch that


Ok, so this post has it all wrong. After all my fancy, shmancy diagrams and explanations of Luke diagnosis (as it relates to his eyes), we found out that diagnosis is wrong. Sigh. Two and a half years of thinking it was one thing...now we find out it's not that at all.

I fill out a lot of paperwork for Luke. I promise you the question "What is your child's diagnosis?" gives me mild heart palpations. (almost as bad as "Can you write your child's medical history on the lines below" or "Is there any other information about your child you think we should know? LOVE that question. Surely you note my sarcasm :D)
What is his diagnosis anyway? I'm his mom, I should know, right? I know I can get an "Amen!!" from all of you parents of special needs kiddos out there when I say the word diagnosis can sometimes over-simplify what is the beautiful complexity that is our children. Like once they're labeled, then we can fit them into some kind of neat box for our minds to understand. When really, we (their parents) are spending everyday trying to understand more about them and not just be comfortable with "The diagnosis".

ANYway, that's for another post.

But, up until now it's been easy(ish) to talk about Luke's visual impairment diagnosis. His optic nerves are pale in color...i.e. dead. Therefore not transmitting information to the brain...therefore vision is impaired.

Yeah, well this little test we did in St. Louis last month told us another story. The nerves are working. 100% baby! On each eye. They look pale when the doctor examines his eyes, but somehow they're transmitting all of the information to the brain.

Mmmh? Interesting. Don't get me wrong...exciting! But, interesting. His behavior still suggests he's not seeing well. So, perhaps it's still a neuro-processing issue? Meaning, because of the brain bleed he's not able to process all of the information that his eyes are taking in. It's possible.

So, the eye doctor in St. Louis called recently to tell us 1) the optic nerves ARE working and 2) we need to get him glasses...to which I responded "Huh?"

Here in Springfield we've been told multiple times "Luke will never need glasses. None of his vision issues are able to be corrected with glasses." This is the information I've been passing along for two and a half years to all of our well-meaning friends and family who ask "So, can you just get him glasses so he can see better?" Each time I explain that no, glasses won't help Luke....all of his vision issues are in the brain. His eyes themselves are fine.

Well, we went and ordered the glasses our new doctor prescribed and they appear to be helping some. He still doesn't engage visually the way a typical child does, but they do help. Easter Sunday was the first day he actually kept them on (thanks to a $1.99 strap from Walgreens) They are far-sighted glasses...mostly for his left eye. They seem to really be helping with his nystagmus.

That's "sorta kinda" the update on that. To be honest, the vision part of Luke's diagnosis is confusing. I don't ever feel like I can talk about it very intelligently. But, the doctors themselves seem to change their minds on what exactly is going on. For now, the plan is to wear the glasses as much as possible. And isn't he just so darn cute in them?




We'll go back to the eye doctor in June to talk more about various tests we can run, etc. We're really glad to have switched his eye care to St. Louis. They seem to have a better idea of how to treat kids like Luke. Say a prayer for us in these regards. Luke's taught us many things, but one of the things we've learned is that it really is up to us as parents to do the research, ask the right questions and do the advocating. And for that, we needs LOTS of wisdom and strength!!
God is with us and He gave Luke to us, so I know He'll continue to direct us.