Nothing New

So, we saw a new neurologist and a genetics team at UAB last week. And... wait for it... we found out nothing new. This neurologist is leaning towards a type of myopathy (muscle disorder) but doctors have been bouncing between mild cerebral palsy (CP) and muscular dystrophy (MD) since Tater was born. CP and MD are both blanket diagnoses, meaning there are so many types of each that unless you get a specific diagnosis (Spastic CP, myotonic dystrophy), you just have a label and not a true diagnosis. Tater has a lot of characteristics for both CP and MD so we're just hanging out in the land between the two. But that means we get so many more resources. United Cerebral Palsy(UCP) and Muscular Dystrohpy Association (MDA) are both great organizations and we're lucky to have access to both. The Huntsville Chapter of UCP has been helping us look for a registered nurse to come help out with Tater (we still haven't found one so if you know of anyone who would be interested in tube feedings and cuddling with the sweetest baby ever, let us know). And we'll be following up with the new neurologist at an MDA clinic at UAB in the spring. The MDA clinic is a one-stop shop for kids with a rehab doctor, neurologist, and therapists on site.

So, we're fine without a diagnosis for now. As long as Tater is still progressing and meeting new developmental milestones, we're happy. He's sitting without support for longer periods of time and even is trying new ways to sit. While sitting, he will lean as far as he can forward and then pull himself back up. He'll keep doing it until he gets tired and falls over. It's the funniest thing. He looks like one of those glass birds that "bobs" for water. AND my Christmas came early when last week in therapy he started lifting his head more when laying on his stomach. This is such an important milestone and he's been having a hard time with it. I'm so very happy he's getting the hang of it.

Toser's getting a cold so he's been a major booger. I left him in our room to watch TV and lay on our bed. He was quiet just a little too long (why do I never notice that until it's too late?) and came downstairs with 2 tubes from wrapping paper rolls. 2 tubes previously holding wrapping paper that was now all over my bedroom. And of course it wasn't the cheap dollar store kind. My kid has taste and went for the expensive, heavy stuff. I didn't think to take a picture until I was rolling up the last roll but you can imagine what it looked like. Now take your image and magnify it because there was A LOT of paper in there. I didn't really get on to him, because honestly, who's fault was it? But the poor kid is getting sick, doesn't feel well and thought the world was coming down around him when I asked him why he couldn't go for the cheap stuff. All I know is he's getting all of his presents wrapped in the expensive, heavy, and now wrinkled, wrapping paper.

YB's sisters, et. al, are coming this weekend and staying until after Christmas. And my brother and sister are both coming home as well. We'll go to my grandmother's church and house for Christmas Eve and then out to my Mom and Dad's Christmas Day. We're so excited about all of our families being here. I count 22, including kids, add 3 dogs and craziness will ensue. Woohoo! Craziness is what we thrive on.