Meet me in St. Louey

What a week! We are back home after a very long week in St. Louis. We got hit with the flu which turned out to be extremely bad timing since we had a week chalk full of appointments for Luke. Anyway, I'll spare you on those details. We're home, we made it, and that's what matters.

Here are the updates I promised.

Dr. Pediatric Neurologist: These appointments are getting more and more boring. "Still no seizures?" Nope. "So, is he doing new stuff?" Uhm, YES! "We're not on any meds, right?" Right. And don't get me wrong, boring is GOOD!

We did get to talk about sleep. Luke doesn't sleep well at night. So, we're trying melatonin to see if that helps. Up to 3mg. Luke sleeps great from 8pm to 2am. After that it's all downhill. So, we're supposed to try giving him the melatonin right when he wakes up. We'll see if this works. :- / We also talked about the fluid that remains on Luke's brain. We know he has excess fluid on his brain. We know that it's not causing any major problems (cause if it was, Luke would be vomiting, lethargic, not eathing, etc.) We don't know whether or not it's causing headaches or other discomforts for Luke. But, at this point, the risks involved with doing another MRI are more than the benefits of seeing how high the fluid levels really are in there. And if the benefits don't outweigh the risks, than it's a no-go. I'm fine with that. But, I'll admit, at some point I would like to get another look in there. We're also not repeating an EEG any time soon. The last one he had in April '10 read NORMAL! As his neurologist said, "Let's just enjoy normal for now." :)

Dr. Pediatric Eye Doctor: Ok, we love this guy!! We should have switched Luke's eye care to St. Louis long ago. Kickin' myself for not having done that. I just thought what we had in Springfield was good enough. And our doc here in town IS wonderful. But not great...especially considering the complicated details of Luke vision problems. So...in a nutshell. Luke does for sure have Cortical Visual Impairment, which is just another way of saying his eyes are perfectly fine, his brain is not. So, all of his vision problems are brain related. In addition, BOTH of his optic nerves are pale.

Basically, it goes like this. Your eyes themselves are just an extension of your brain.

So, images are taken in and travel down the optic nerves (think cables) to the vision centers of the brain. It is here that you actually "see"...or where the brain interprets the images and tells you that you are looking at a tree or a moving car, etc. etc. NORMALLY, our optic nerves are pink, alive tissue. Luke's are pale, i.e. dead. Likely, the brain bleed took place around these nerves. Or perhaps it was the oxygen deprivation at birth. Whatever the case, tissue died and so now information is not getting through the optic nerve to the brain. Still with me?

Now, when I say information is not getting to the brain, I really mean not ALL of the information. He clearly sees SOMETHING. We're just not sure what or how much. YET! The doctor ordered a Flash VEP test for Luke. This will take place March 24th. Can I just say, I am totallyexcited about this test!! Copy and paste definition from the Web. Thank you Google!

A VEP (visual evoked potential) is a test that records the electrical signals of your child’s brain while he/she is watching either a flashing light or a black-and-white checkerboard television screen. A VEP shows if the brain is receiving information.

By the end of the test, we should have a more precise answer about how much Luke sees. For example, he sees 30% out of his left eye and 10% out of his right eye. This will be great information for us to have!! If there is a big discrepancy between what each eye sees, than we will put glasses on Luke to keep the "bad eye" from shutting down completely.

So, the disappointing news was just that optical nerve atrophy (pale optic nerves) does not improve with time. I mean what's dead is dead. We had been told before that the brain can "rewire" and children like Luke can sometimes see better over time. But, the optic nerve is THE pathway from eyes to the brain. You can't really grow a new one. Although, having said that, if there is anything Luke has shown us it's that NOTHING is impossible with God. So, to be perfectly honest with you, I wouldn't be completely surprised if one day we show up to an appointment and the doctor says, "Mmmh...this tissue is looking pink. More, uhm..normal than before." Certainly, I am praying that way!!

The doctor applauded all of our therapy efforts. He said he does hear parents say, "But it seems like he is seeing better than before". (this is what we told him about Luke because compared to a year ago, he is tracking FAR better and reaching out for things and overall, "seeing better" than he did before) He explained that it's not that Luke is seeing more. He's just learning to use the vision he does have more effectively.

So, that's that. Luke also has something called Nystagmus. You'll see it in some of the videos we post of him. Nystagmus is an ocular motor issue causing the eyes to move back and forth in a jittery sort of way. Also, no cure or treatment with this. But I think it can improve over time...? I'll have to do some more reading on that.

Ok and now for the therapy update. If you're still reading, WOW! ::wink::

The therapy sessions went great. ABM is a very interesting sort of therapy. If you were a fly on the wall during a session, you'd be thinking "It doesn't look like this therapist is doing anything at all!!" It's very gentle. Very low-key. And yet, Luke was exhausted by the end of the sessions each day. And already we're seeing better movement. Better coordination. Better balance. More confidence on Luke's part. He's not as scared to move as he was before.

Pics and videos if you're interested.