Archives for January 2009


Well, I’ve been trying real hard to take some pictures that document Charlie’s progress, but that’s easier said than done. I tend to delete pictures I don’t like, so I don’t have a ton that would be good for comparison’s sake.

Here are the changes I’ve noticed in Charlie’s body:

Charlie’s neck has made the most changes. His Adam’s apple has moved down and rather than being under his chin it’s now at the very top of his neck. I’m starting to see all the veins and the shunt in his neck and he does a much better job of picking up his head while on his stomach. I can’t wait to work on the back half of his neck!

He’s lost one of his eyes here, but you get the picture.

His abdomen has made major changes too, but it’s hard to really capture that in a photograph. His ribs used to be almost pointed at the bottom of his rib cage–the whole thing looked like a diamond. Now, he still looks like a rounded diamond, but that’s still an improvement. The big change in that area has been how much flatter his chest has gotten. The bottom of his rib cage used to be the highest point of his abdomen. Now, it’s flatter and more balanced. When I pick him up I feel how much stronger he is. Best of all is the un-measurable: sometimes Charlie will be sitting in some one’s lap and he looks complete and utterly normal. I think all special needs mommies do that thing where we stare at our child and wonder if they’re “passing” for normal at a given moment. Usually, Charlie is close. Sometimes now, however, he’s dead on–even his eyes. I can’t quantify it, but it sure is awesome.

The final area we’ve been working on is the jaw/larynx area. I struggled with this area–first I had the position wrong, then I had trouble with Charlie waking up when I tried to do it. Plus, it was uncomfortable. I e-mailed the peeps at ABR and some other parents, did some fiddling and things got better. Then, I bribed myself: I buy current episodes of One Tree Hill on iTunes and I only let myself watch them when I’m doing Jaw/larynx.

I finally saw a change after putting in some hours. I think it’s from the jaw/larynx exercise, but I suppose it could also be the neck. Anyway, his tongue is changing. Since I took Charlie home from the hospital, he’s had a forked tongue. Sounds creepy, but it’s not that bad. Charlie’s doc keeps asking me if I want to snip it, but it doesn’t seem to be causing any problems, so we’re not snipping anything right now. Well, it looks different sometimes now. The center part is still tighter, but he seems to have more control over it and sometimes it doesn’t look forked at all. His speech therapist agrees, so I’m not crazy. Well, I may be crazy, but not about that.

Christmas photo.

Here’s a picture of us doing an activity with drawers–namely, how to open them, and what goodies may be inside.

As a final note, I’ll add that after two Feldenkrais sessions, Charlie lunged for something with his right hand. This is pretty unusual since he favors his left side for almost everything. If he does use his right hand it’s usually for support or help–not the lead hand. It could be a fluke, but I feel like I should write it down for posterity.

Busy Busy

Well things are busy in a good way. I don’t have any funerals to attend or any hospital visits on the horizon, so things are looking pretty good.

Days are full with regular therapy, ABR, Charlie’s intellectual program and now two Feldenkrais appointments a week. Some days I barely get on the computer, which is crazy for me.

I am working on designing some stationary, which is both thrilling and frightening. It’s thrilling because I can’t believe I’m actually doing it. It’s frightening because once I’ve finished designing it, I’m going to have to stomp around and try to convince store owners to carry it. I am SO scared to try this, but I realize my anxiety is probably worse than the rejection would be. Besides, rejection isn’t fatal, so I just need to stick my neck out. SCARY!!!! I’d like to eventually have my own web site where I sell my designs online, but for now I’m just trying to see if a market even exists for what I’m doing.

I’m going to try to post my designs up here real soon. I’m working on birth announcements/shower invites with coordinating thank you notes. I’ve scouted out several places that might carry them and have even scoped out some of my competition.

I’m planning on taking some pictures of Charlie to show some of the changes I’ve seen, so stay tuned. . . things are happening over here.


Well, we went to our first Feldenkrais appointment today and I thought I’d share.

The lady practices all the way down in the Quarter and I got a little bit lost on my way down there. Luckily, my little brother is a wiz at directions and got me there almost on-time despite my wanderings.

The woman was very nice, with long hair, a flowing dress, and bare feet. She had a black standard poodle name Boogie who hung out with us.

I can’t really explain Feldenkrais even though I sat there and watched the entire session. It’s kind of like she’s stimulated different muscle groups with massage, but she’s also moving him through various movement like yoga. She described Feldenkrais as “educational.”

She feels strongly that Charlie will benefit from multiple visits a week since that is what is recommended. He normal rate is seventy-five dollars for a visit. She is going to charge me that for our weekly visits, but if I’m able to make it over any additional times during the week then she’ll only charge me twenty-five dollars for that session. I get the impression that she’s excited to be working with Charlie.

I got lost coming home too. I’m definitely going to need to spend some time with a map if we’re going to be going there regularly.

I’ll admit that I’m apprehensive about this new therapy. Mostly, because it’s a lot of money and time. Charlie seemed to enjoy it, though, and I’ve decided to give it six months and I’ll re-evaluate then. For now, I’m jumping in and giving it a try.

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