Sunday, May 17, 2009

The Next Hurdle

The Boy is almost sitting. In fact, for about 2 seconds at a time, he can actually sit completely unassisted. Today, he was prop sitting and pushed up, or maybe used his abs to pull himself up, to a regular seated position before starting to topple over. I'm so proud!

The next big thing is treadmill training. I can't imbed the video here, but you've got to check out this link. By the end of the summer, I want to be doing this with The Boy. Then we'll be starting speech therapy, too, etc., but I can't tell you how excited I am about this research coming out of the University of Michigan by Drs Dale and Beverly Ulrich. This will make a big difference.

The Boy visited the Down Syndrome clinic last week and was declared a success. He's doing very well, and the therapists attributed a lot of that success to his very, very early intervention. That makes me and Turtar feel so good. Extra validation from a professional source somehow felt really fabulous. I've wondered more than once if our therapy sessions and working with The Boy on our own was making any difference at all. I guess it is. That is encouraging. I will try to keep it up.

Thursday, May 7, 2009

Helmets, Massage, and Sitting










That's a lot of pictures, but I can't get enough of these kids. :D

The Boy is pretty much awesome. That's not new. That's old news. But it's so true it bears repeating. So he's had his helmet for almost a month now. We went with solid blue. And I've got to say, I'm really happy with it. It matches EvErYtHiNg in the way of infant boy apparel. The plan was to get biker stickers to put on it. Our neighbor is so cool. She's a Montessori teacher who also rides a Harley and plays with a roller derby team. So she left some stickers on our porch as contributions for The Boy's helmet. Turtar's favorite was this monkey skeleton. It was too big to lie flat on the helmet, so I went to great lengths to transfer it with permanent marker. In fact, I even bought a set of permanent markers with something like 20 different colors. Unfortunately, permanent markers don't stick to this helmet. They work more like dry erase. I have no idea what the helmet surface is made of, but I keep thinking of my high school chemistry class... all I remember is "like dissolves like". Oddly enough, the pencil I used initially to sketch in a monkey skull under the strap, I can't get off all the way, even with rubbing alcohol and nail polish remover. So, usually I leave the helmet plain, but last Sunday I let Her Nibs draw a heart and color it in, and I drew a mouse (at her request) along with some encouraging epithets. The Boy has also seen an osteopath twice and his head is showing significant improvements in rounding out. Hurray! Sadly, Medicaid will only cover these custom helmets before 6 months of age and The Boy was at least 6 months and 5 days at the helmet fitting, so we had to pony up for the co-pay ourselves. He was sweating in it like crazy at first, but it's calmed down a little. It does get really stinky and we have to clean his head and the helmet very thoroughly everyday. Whenever we let him out of his helmet for his one hour, he is positively euphoric. Every time he seems to think "That's the end of that!" So sad it's not true.... but at least one time it will be...

We are also doing infant massage with The Boy. Someone from church is certifying to teach infant massage, so I was fortunate enough to get the course free as part of her certification. (YEAH!) And I like it. I think it's really good for The Boy. At first I thought of it as very extra-curricular, but his therapists and osteopath have been so supportive of it, and proud of me for doing it, that I'm pretty committed. The Boy doesn't like it on his arms and chest though. I mean, he really hates it. He yells and complains during therapy, but he was bawling his eyes out when I massaged his arms and chest. The massage therapist said 'go easy. if he doesn't like it, don't push it'. The osteopath said 'of course he doesn't like it. he's so tight in there, but it's good for him, do it anyway'. And the occupational therapist said 'do it on the arms, but not the chest. there's tons of nerve endings on the chest; we don't even do touch therapy there'. Oh yeah. His Physical Therapist taught me the touch therapy treatments to do today, too. It's with this soft brush, like you would use to brush the silky threads off a corn on the cob. I think it feels nice. The Boy does tolerate it better than massage.

The big goal right now is sitting. The Boy is SOOOO so close. Today he was prop sitting for like 20 or 30 seconds. AAH-SUMMM! (in a sing-songy high-pitched voice) I don't think he'll be there by 7 months (which is tomorrow), but he's almost there. He hates it, of course. But I get that. I started a new workout routine 2 weeks ago and my muscles are always aching. I bet that's how he feels. When I'm sore from the last workout still, I don't really feel like working out again. We're in the same boat. And I find he is a great inspiration to me, motivating me to work harder to develop my own muscle tone, even when it's hard, even when it hurts, even when I'm tired, striving for my own milestones...

And we're doing solid foods, too. That's really hit or miss. I thought we were really getting a handle on it the other day, and he's started sticking his tongue out constantly. Not the "I'm used to nursing and I use my tongue for that" sticking it out, but sticking it out like he's trying topoint at something with it while receiving food. But at least he now accepts eating solid foods as a viable solution to his hunger. Nursing is not the only answer!

In other news, I'm feeling completely inadequate. We're learning about an amazing treadmill intervention that can have kids with DS walking about 4.5 months earlier. Definitely worth the effort, but I'm still cringing a little and bracing myself against yet another step in our daily therapy and care regimen, even as I start scouting out an appropriate treadmill. Maybe it's just another step in the process of accepting my son, but I feel like I resent my own weaknesses, not his. I think 'if only I were more organized and productive, if I were already on top of my own issues, I would be able to handle my son's care better'. *sigh* But we all adapt to the hand we're dealt. Maybe Urban Tangerine would consider adding her bit about Kung-Fu Panda on this blog as well. I keep trying to tell myself 'there is no secret ingredient ... I am the Dragon Warrior'. I may need to make a T-shirt to remind of it, though, printed in a pretty reflective metallic. I am the Dragon Warrior! Or at least, I'm training to be.