Thursday, January 21, 2010

Getting into the Groove...

...literally and figuratively speaking! My blog has kind of fallen by the wayside lately. Giving in to being lazy and putting it off are the only excuses I have for my lag between posts. But here I am! Back again! And really, I do not have anything new and exciting to report...which is always good in our UCD life. I like it boring. I like it monotonous. I like saying, "Nothing," when someone asks what is new. It means Coulby is healthy, stable and, most importantly, home.

Coulby is having a great Winter (knock on wood!). While he has brought home colds and nasty viruses accompanied by fever, and one VERY persistent virus that he so graciously passed on to all of us, he has been metabolically stable. *Celebrate!*

Coulby's last several Hopkins appointments have gone well and yielded nice, low ammonias and fairly stable amino acids. A few minor adjustments to his diet and medication and he has been good to go. We have been managing to get all required protein and calories into him each day without too much of a struggle. Because we increased the one medication a little bit, Coulby can really taste more medication than formula now, and lets us know it. He will very firmly tell us, "I hate my formula because it tastes nasty!" It makes me feel badly because I know how awful it is, and I do not want to give him something so gross, but he has to have it. There is nothing I can do but tell him that I am sorry he has to drink it, but it keeps him healthy and home. Coulby seems to get that.

Coulby is doing well in Kindergarten, although he has a VERY short attention span and LOTS of energy. It makes it difficult for him to complete every task and stay focused. He loves going to school though. He is disappointed on the weekends when he asks if it is a school day and I say no. I get the, "Ohhhh, nuts!" A Coulbyism. I like that he is excited about long will that excitement last? I do not think he will be getting on the bus to go to high school so happily and willingly.

So things here have been fairly quiet...not literally. Two kids can make a lot more noise than I ever imagined. Especially a brother and sister quarrelling! We have more and more of that in our house. I feel like I should be wearing black and white with a whistle around my neck! But when Coulby and Caroline play well together, it is so much fun to watch and hear. Their make-believe worlds sound like a great escape from reality.

Now that I am back in the world of blogging, I am going to make it a point to post more regularly. (Do you hear that, Mindy?) My main goal behind establishing my blog was to educate those unfamiliar with UCDs. To raise an awareness by telling Coulby's story. And I still believe in that. So look for more posts soon. Until then...