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.

Degrees of Salt

Tater: 100, Scoliosis: 0
Tater does NOT have scoliosis!!!! We went to a UAB clinic in Decatur yesterday and the orthopaedic surgeon there thinks all is well in Tater's spine/bones. He even said we won't need to come back for a check until Tater is 16-18 months old and walking. No doctor has ever given us any indication Tater will walk so that is hopeful news indeed. Of course we take all news with a grain of salt, but good news gets a smaller grain than the rest.

And then there's the whole clubfoot debate. You wouldn't believe how fired up people can get about clubfoot and the methods used to correct it. This doc thinks the boots/brace combo we got from Iowa won't do much good in preventing a relapse. Not that we've had a chance to use the brace yet. With Tater's cold we've hesitated to put him through anything else right now because when this kid gets sick, he's really sick. Anyway-the grain of salt thing. We think the brace can help Tater so we're going with it. One thing we've learned going to so many doctors is they can definitely be biased about methods and treatments. We're biased towards the Tater so we'll take what we agree with and file away what we don't (the other thing we've learned is to not discount ANY advice-it may be handy later on).

We're off for family photos at a real live studio. This will not be fun. Yard Boy is grumpy because we're going to spend actual money on a photograph of the whole family (when it comes out great he'll act like it was all his idea). Toser is going to be grumpy because he'll have to wear something other than a t-shirt and Crocs. And I will be grumpy because they both need to get over it already. Tater is probably the only one who will have fun and that's because he'll have new people to adore him at the studio.

A Toser, a Tater, the Yard Boy and me

Hi all! I wanted to create a general blog for the whole family and get away from focusing on the medical issues on Tater's Caringbridge site. We want to raise him as the normal kid he is and not always dwell on the things that may slow him down a bit. I’ll still do updates on everything we find out medical-wise and events as they happen but he’s getting better by the day and there’s not always something to write about in that regard. The plus for me is I can use this as a baby book for both of the boys because I am lazy and the idea of actually sitting down and organizing all of their “accomplishments” and “milestones” makes me ill. Bragging to the Internet doesn’t seem as foreboding. The plus for you is you can read it or ignore it as you wish. It’s like a Christmas letter you won’t feel obligated to read. You’re welcome.

And since the elder of our children will probably be Googling his own name before we know or are ready for it, I wanted to give us all code names so they won’t be able to find this and be mortified to read stories of how funny it is when they go to the bathroom and how inappropriately they sometimes mispronounce truck. I would like to reserve the right to tell them the mortifying stories to their faces and actually watching them squirm. And let’s be honest-there are plenty of fruitcakes on the Internet and I don’t want them looking us up in the phonebook. The elder son is Toser, the younger is Tater. And their father is Yard Boy (or YB for short). I am CS because I don’t need a cute name-I’m cute enough without one.