Thursday, May 29, 2008

Follow up appt with the neurosurgeon and some good news

I'm posting this after a long day so please bear with me if it doesn't "flow" quite right. But I wanted to pass long some information and updates on our little boy.

Ever since Colby was born, our biggest concern was and continues to be his head. More specifically his brain. Brain bleeds are categorized by levels 1-4. One being mild and 4 being the most severe. You can have a brain bleed on one side and not the other, or different levels of brain bleeds on one side or the other. When Colby was first born, he was diagnosed with a level 1-2, meaning level one on one side and level 2 on the other. After about a month or so, we were told that his brain bleeds had worsened to a bilateral 3. Couple this with his hydrocephalus and we had some concerns about his mental health and any impairments he may be left with. The doctors and online research told us that level 3 brain bleeds can lead to something called PVL which means essentially dead spots within the brain......not good at all. Or there could be speech problems, eyesight issues or blindness, cerebral palsy, motor skill issues, mental retardation, .....the list went on and on to include just about anything that the brain might have an impact on.
Colby had a follow up with the neurosurgeon yesterday and they did an ultrasound to see how his shunt is allowing the excess fluid to drain from his brain. Tracey and I were anxious to see what these results may show. Although we hoped for the best, we understood the reality that it could show things aren't improving or worse yet, some areas of his brain weren't looking the way they should be. We were so pleased to find that hings looked very good! His ventricles (the pools of fluid that everyone has in the center of our brains) looked normal sized now. That's a huge difference from a couple months ago. Although they didn't really look at his brain matter much during this visit, they did look at it during some of the MRI's he had done earlier this year and there were no dead spots.
The biggest indicator of Colby's long term well being is how he develops. That's probably the hardest thing. We want to hear that we pass some milestone, get some test done with good results or in some way are free and clear of any long term issues. But there's no such guarantee in Colby's case. So we focus on how well Colby is doing thus far and how far he's come. Colby is doing what I think some might deem as "better than expected". Not like we had any expectations, but much of what we read and heard prepared us for the worse. And thus far he eats like a champ, is VERY alert and aware of his surroundings. He's extremely interactive and loves to play, be held and to laugh and smile.
A while ago....maybe two months or so, he was discovering he had a voice and would make all kinds of wacky sounds. Then he went quiet and stopped "talking" as much. Just within the last 2 days he's become more verbal than we've ever heard him. He'll just sit there and test his voice, making moaning sounds, screeching sounds and just about anything else he can make his little voice do. I don't know what's triggered it and I honestly don't care. It's just awesome to see our little boy growing and developing.

1 comment:

Anonymous said...

Hi...Colby looks great!!! I have a mushroom pool for was Hannah's last year. I'll give it to you mom. This way Colby can be the cool man in the pool :)
Love, Mary and Hannah