Early Intervention folks were here on Monday to evaluate Ian. He was too cute during the evaluation. Megan asked how he likes tummy time; he loves it! He was holding his head up and turning it from side to side and eventually rolled over! He qualifies for service no matter what because of his diagnosis, but they of course needed to acquire scores. He is grasping things like my hair and he tries to swat at toys (with a lot of effort!). He will also hold things when placed in his hand and put them to his mouth, but he wouldn't do this while they were here, so he didn't get any points for fine motor skills. It isn't a concern though. He tracks beautifully with his eyes and he definitely hears sounds. He seems to favor turning his head to the right, so we are just going to monitor his hearing. We are going to get a full audiology screening done soon. He is starting to smile socially and babble a little. He pushes up with his arms and bears weight on his legs. I couldn't be happier at this point. We are starting with physical therapy and specialized therapy each every other week though just to monitor his development.
We saw a different pediatric neurologist on Tuesday. She reviewed his MRI images and wanted us to understand that Ian has Dandy Walker Malformation, not Dandy Walker Variant. She said it's all very technical and showed us what makes it DWM, but honestly I'm still so confused. She also mentioned that he has very little vermis development but that the rest of his brain looks completely normal. UGH a little. I did get sick to my stomach and fought off tears, but I kept reminding myself that he is doing great. She wasn't doom and gloom and she kind of seemed confused as to why we were even there since he is doing so well. In her opinion, he will never need surgical intervention (a shunt). She said they can tell by the anatomy who will be "troublemakers" and who won't. But then she also showed me where exactly to watch for bulging in his head. She agrees that it will be a day by day thing as far as development goes, but she advised us not to worry too much. She considers it a moderate Dandy Walker Malformation, and many of people with a moderate DWM do quite well.
Ian has an appointment with Dr. Painter on September 21. That will be a little late for his 3rd month check-up, but we should be good.
Ian is currently in the 95 percentile for length, 90 percentile for weight and 50 percentile for head circumference. AWESOME!
I have heard that Ian is being removed from some church prayer lists. That's fine, but our little guy is going to need special prayers for a long long time. Thank you to all of you for thinking of him. And, if you don't mind, pray, pray, pray!
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