Tuesday, August 14, 2007

The Diagnosis Details


Look at that sweet boy! Isn't he so cute?

Yesterday we had our third Neurology follow-up since the NICU. And even though we got the CP diagnosis, I did not leave feeling like I had been hit by a truck. I was sad, sure, but my views of CP have matured since his last visit. I'm sure I've still got a lot to learn but now CP is no longer a big looming doom monster.

Our Neurologist (Dr. Hippie) is wonderful. When she examines him, she tells me everything she is looking for and what she finds, how severe it is, and even a little about how she feels it will affect him. The other Neuro we had seen just examined him and then said, "Well, he is showing spasticity and I am concerned about seizures."

During the exam, Dr. H agreed that William's adductor muscles are tight as are his ankles. His hamstrings seem to be okay and his hips are still very flexible. So that is good. William does still have decent stepping reflexes although his legs do scissor quite a bit. This will probably make walking difficult in the future as his knees will probably scissor after his lower legs straighten with age. No big surprise. Wheelchair = okay. Remember? She also said, "His head control is coming along." I nearly cried with joy.

A bigger concern is that he is not able to use his arms or hands for play yet. The doc didn't seem to be too ultra concerned with this right now.

And, of course, my biggest concern has been his head growth. I am happy to report that he had really good head growth since his last visit and is getting closer to the curve! This bodes well for his cognitive function. We were concerned about profound mental impairment. Right now that doesn't seem likely. Hooray!!

We are also going to try wean him from his anti-seizure medication since we will be starting Baclofen in a few months. I pray that he doesn't develop any seizure activity during or after the weaning.

Over the past couple of weeks I can see a huge change in William's behavior. He is "waking up", so to speak. I think he may be seeing better, but I could be wrong. I do know that he really wants to play and not be held so much. I am busy trying to adapt toys to let him be able to play on his motor level and also challenge him some. Like his sister, he loves to rough house. So I frequently count "1, 2, 3" and then jostle him around on the floor. He loves it! I'll try to get a video but since Daddy will have to be here for that, it may be the weekend before I can post it.

I am really looking for toy suggestions you may have. Bright lights, noise, and/or vibration are the things that we look for. I can hold up a toy and operate it for him, it just needs to be obnoxious enough to get his attention and perhaps motivate him to reach and touch it.

5 comments:

Jessica said...

Lisa~ I think you have such a great attitude about everything. William couldn't have a better mom.

Jennifer said...

Regarding toys... I just saw one at Target last week, but can't remember the exact name. It's a toy that vibrates and lights up - its made by Fisher Price it comes as a pig or cow. You press the nose and it 'turns on'... Very cute! Nearly bought it for Arianna...

He's totally cute Lisa - you can tell a big difference in him just from pictures! :)

Patyrish said...

yes he is terribly adorable! ;-)

I am glad you took the diagnosis well. I know how those things CAN hit ya like a truck but knowing as much as you can about makes it easier.

Have you seen the "Chime Garden". It's a really cool toy by Lamaze. It is SUPER easy to activate and it plays music when your child hits the top of the flowers. MAKILY LOVES THIS and for a while was the only thing she could play with.

There is another ANNOYINGLY loud turtle with music and lights too that she has. let me see if I can find some pictures for ya!

23wktwins'mommy said...

He is sooo cute! You sound like you are handling things very well, and it is good to see him happy in the pictures and grabbing the toy. We are working with Edwin on getting him to reach out to toys....he picks them up from his lap and plays with them, but is less likely to reach out and grab them. He likes plastic keys that play music or make noise when you shake them. How does he do on his belly?

The Moss Clan said...

I know how everything can be so overwhelming but it is the way we respond that holds us together. So he maybe a candidate for SDR?