Well hello there, big vast chasm of the internets. It’s been a while. You look well. Congratulations for getting Betty White on SNL. Have you lost weight?
I feel a little guilty for not updating the blog more than…well…quarterly. I’m trying to figure out if I really have anything to say. The more time I spend online, the more I realize that the vast majority of people who take the time to write online are kind of asshats. I suppose I should just stop reading the comments on Yahoo! news articles. That would probably help a lot.
But there are so few of us Prader-Willi families out there on the net that I feel a little obligated to keep this thing going, if only to add my little two cents to the trickle of information out there about our lives and our kids. But therein lies the rub: I think I’d rather blog about my last pap smear than what I think and feel about Prader-Willi Syndrome on a daily basis.
So…my test results were normal. Thanks for asking.
I’m going to try again…again…to get back to blogging. The truth is, that other than the broken record of Prader-Willi-related fears and worries, life around here is pretty “normal” and PWS is just a little black rain cloud that kind of hovers over everything, but at the moment isn’t really doing much. Still, there are a few things to report: We finally got Hope the orthotics the physical therapist recommended, they are Sure Step inserts that just stabilize her heels and ankles and keep her from walking on the outsides of her feet. They have helped TREMENDOUSLY, I can’t believe I held on to that prescription for six months. Hope is walking, talking, and feeding herself. She is still tiny, and underweight, but at last check she was back “on the curve” — it’s just a very little curve. She is still taking growth hormone, and we are still very grateful to have the support of doctors and specialists who believe as much as we do in growth hormone therapy. I think the obsessiveness about the food is kicking in a little, but I’ll admit it could just be paranoia on my part — Hope has a fairly limited vocabulary, but she can communicate that she wants food. She is only two though, and from my experience, two-year olds don’t talk about much besides food. I probably didn’t need to spend three hours on the internet last night looking at refrigerators with digital locks, but I like to torment myself. That should bring you up to speed on Hope.
Well, that’s it for now. We’ll try doing this again tomorrow, and not three months from now.