Here are some updates…
Hope had her 6 month check-up yesterday with her pediatrician. She weighs 14 lbs. 7 oz. and is 25” long, making her 25% in both height and weight. The doctor is very pleased with how she is doing and was quite impressed with her mobility. Hope started rolling over a couple of weeks ago and hasn’t stopped since, she knows how to get her arm unstuck (she lifts her head off of it). She’s not doing the full roll just yet, but she’s getting a little tougher to diaper. She’s making a bit of noise, she grunts and squeaks while she’s rolling. It was really hard for me to hear at first because I knew it was because she was stuck on that arm but that she needed to learn how to pull it out on her own. Now that she’s mastered that it is a little easier to hear her, but it still gets to me a little because it sounds like she’s working so hard. Of course, her noises may be of satisfaction or happiness for all I know–since I’ve heard so little from her. I’m trying not to hover too much and let her do her thing and it is good for me to let her do her squeaks, I’ve got to learn her language — we’re all a bit delayed in that regard.
Hope had a sleep study scheduled for November 3, but we got called yesterday for a cancellation tomorrow night. It’s actually perfect timing in the sense that our specialist said that they usually prefer a follow-up sleep study 6-8 weeks after starting HGH and we’re seven weeks in this week. I won’t forget to take the camera this time and I’ll chronicle the whole thing. It’s going to be a little tougher this time I’m sure because Hope can, and will, pull at all the wires, not to mention the fact that she wants to sleep on her stomach and roll constantly.
The first meeting of the Prader-Willi support group we are organizing is this Saturday. So far I’ve got four definite confirmations and two tentatives from other families. It’s going to take a while to get off the ground but that’s o.k. We’re getting a lot of help, Prader-Willi CA has sent out a mailer for us, Prader-Willi USA is sending one too. The local geneticist who hosts the monthly Prader-Willi clinic is handing out flyers to their clients today. Best of all, today I got a totally unexpected call from the Pfizer rep in our area — he’s been talking to families too and (I’m guessing) he’s the one who got the Endocrinology Clinic from Children’s Hospital to send out a mailer to their patients. Unfortunately not everybody belongs to one of the big organizations so it’s going to take some time to get in touch with everybody, but we’ve got plenty of time. I’m looking forward to Saturday, initially I was a bit apprehensive about meeting the children…and to be totally honest I still am a little…but mostly I’m really looking forward to it.
Tammy & I are already looking down the road at some other things we’d like to do for Hope, either in conjunction with our PWS support group or separate. Tammy wants to design a custom cycling jersey raising PWS awareness (WANTED: graphic designer). There are t-shirts available through the national organization, but you cannot ride in just a t-shirt…(it’s some kind of cardinal cycling sin, I think they beat you with your bike pump). Seriously though, I’m surprised it took this long for her to say something–I expected a jersey a long time ago…cyclists, man, I tell you — any excuse for a new jersey! Of course, what’s the use of a jersey if you don’t have some place special to wear it? Hopefully we can convince a few of T’s cycling buddies to wear the jersey on rides and at races. Someday we’d like to organize a fundraising ride of our own…Ride with Hope (working title).
This morning while I was getting dressed, Grace came over to me and poked my butt and exclaimed “woooow mama! you got wheeeeelie beeg butt!” I’ll let her out of the closet when Tammy gets home.
Things are pretty busy around her these days, but it’s all good. We’ve got three fun-filled weekend coming up, our support group kick-off this Saturday; the weekend after — DISNEYLAND!!! (can you tell how giddy I am?) The weekend following we’ll be celebrating Tammy’s grandma’s 98th birthday with family and the next day is Hope’s baptism (you’re all invited, email me for details).