Milestone? Hell Yeah.

I’m so glad that I decided to write about joy because it fits in perfectly with the amazing thing that has started happening at my house.

I’ll back up a few minutes and say that two things happened at my house: One, I re-dedicated myself to making sure Charlie gets his ABR machine on every day. And, two, the glass on Charlie’s iPad busted and I had to send it off for repairs.

In the interim, we’ve been helping get his Lady Gaga video fix by putting Youtube on the laptop. Unexpectedly, he started doing this:

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That’s his ABR machine around his waist.

This is a good thing, but he’s been able to do it for awhile. After a few days of this, he started knee-walking at Feldenkrais.

Sunday, he pulled himself onto his feet twice. He did two more times in therapy on Monday.

Perhaps the most-amazing thing is that the therapist reported that he’s doing it just like a toddler would. We need to teach him how to do it the way a five-year-old would, and his legs are incredibly weak, but it blows me away that his oh-so-pokey development continues to progress.

I’m thrilled.

Welcome to Miami

After taking almost a year off, Charlie and I headed for Florida to learn some new ABR exercises.If I’m leaving you clueless, ABR is an experimental therapy technique that we do on Charlie. I’ve written oodles about it in the past, but the simple version is: we’ve tried it, and we’ve been very happy with the results, so we keep doing it. Rocket science it ain’t.

The goal of ABR is to try to improve the structure of the body–to make things work better and move more normally. A good goal, yes? Well, when you visit, they try to show you how your hard work has paid off. It can often be difficult to see small changes, or in some cases, you see that your child is doing things differently, but you can’t put your finger on the specifics.

So, the lovely people at ABR look at pictures they’ve taken of your child and videos you’ve done. They compare the two and make a neat little report for you that details their greatest areas of progress.

It’s been over a year since our last visit, but I did get in about six months of work before pregnancy, Parvo, and newborns put me out of commission. Still, they got the old photographs and we were able to see some definite improvements. Awesome!

The greatest improvement is in the area of his shoulders. While sitting, he does a better job of catching himself if he tips over. If you try to put him down on his stomach, he’s able to prevent face planting (super-useful!).

ABR testing

ABR testing

The other changes are more things that look different about his body and that may help with function in the future. First, we’ve gotten some more length to his neck. This helps with head control and I remember when I was working on his neck last year, the teachers at school definitely mentioned an improvement in head control. The second major change is in his legs. Now, I would have probably never noticed this without ABR, but a common issue for kids with cerebral palsy is that when you move one leg, the other moves too. And let me throw this out there too–once ABR points something out, you can’t NOT see it. Anything they point out, I see it not only in Charlie, but in every single kid with CP.

But about the changes. Used to be, if you lifted one leg, the other leg, and half his backside would move with it. Now, both legs still move, but his back stays nice and flat on the table. We’ll keep working and hopefully we’ll get those legs to move completely independently of one another.

ABR testing

Since people like the hard facts, I’d estimate that we achieved these changes with about 180 hours of hands-on therapy. We had some machine time, but not as much as we would have liked since Charlie has been struggling with sleep issues on and off for the past year.  We pretty much had to restrict its use to his hips/pelvis area. The neck and shoulder improvements are probably a direct result of hands-on therapy. Up next for us? lots of work on the pelvis, which will hopefully translate into better use of his legs and move movement in that area in general. Also, work on his mid-back to improve his posture overal.

This and That

Pasting together a million tiny thoughts and pretending that it counts as a real post. . .

Charlie is doing fantastic. We don’t have as much time to do ABR as we used to–school has slowed things down–but we are still doing it and he is still making progress. He’s holding his head better when he sits in his chair and turning it side to side more every day. He’s also twisting around while seated, which is great except he promptly turned around in the bath tub, grabbed one of my disposable razors and started banging it in the water. Yikes! Mama’s gonna have to get more vigilant.

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We’ve also discovered that he loves hummus. We thought we’d give it a go and he proceeded to lap it up like a cat with milk. Hummus has protein so Hubby is, of course, terribly excited by this development.

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I discovered how much Charlie loves school when we got back from the holidays. His first day back, he came home and giggle all evening until it was time for bed. Clearly the kid likes his school-time routine.

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I had planned to do some new therapy type with Charlie this summer–horseback riding or maybe some HBOT before the baby arrived. I’d taken on some freelance and consulting work with the idea that we could do one last thing before our lives became over-taken by newborn disorder.  That was of course back when I thought I was having only one baby. The books and the doctors are warning me that 24 weeks is going to be the end of the line with regards to picking Charlie up, strenuous activity, etc., etc. Not only do I not know what I’m going to do in the day-to-day, but I’m not sure what to do about my plans for therapy. I’m still figuring things out at this point.

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