Gluten Free New Year

It’s been a while since I discussed August and his general wackiness. Following the advice of many of the lovely people who read this blog, I decided that we were going to change his diet to see if that changed anything. The first thing I decided to eliminate was gluten. I did this mostly because my husband eats a very low-gluten diet naturally, so I thought it would be the easiest transition. Well, I gradually eliminated things and finally got him gluten free and we were going strong for a couple of weeks.

He started making some serious improvements. He started saying “mama,” pushing a ball back and forth, and he seemed to have a longer attention span. I wasn’t sure what the cause was, but one of his therapists said, “just keep doing what you’re doing.”

Well, at a Christmas celebration my husband gave him a handful of pita chips to keep him quiet.

The following days were not good. No babbling, spinning in a circle, and withdrawn.

He’s gradually pulling out of that funk, but it is a sloooow process. It took him seven days to get “mama” back.

Looks like we’ll be gluten-free for the foreseeable future.

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.

ABR: Two Years Later

Two years ago I got on a plane, which I hate, and traveled to Montreal, Canada to learn an alternative therapy technique known as ABR. There was little information available on this therapy, but a video I saw on Terrible Palsy had me convinced that we had to try it. It made sense to me–the questions I had about Charlie’s broken body were all answered by this therapy. The theories spoke to me.

So off we went.

The reality of ABR is simple activities done with household items. It’s about hours of hard work and not miracle cures. I’ve often joked that there’s probably a permanent dent in the couch from all the time I spent sitting there, working on Charlie.

Four different households contributed the funds required for this therapy. We couldn’t have done it without their generosity. I can say, without hesitation, however, that it was money well-spent.

The child I took to Montreal two years ago had had little physical development in first nineteen months of his life. He could roll from his front to his back. He was beginning to show awareness of commando crawling, but needed help to complete it. He could prop sit if perfectly placed, but would eventually topple. He had the desire, but that little body just wasn’t strong enough. Some people would claim that the development he’s had since was spontaneous and natural, but I would remind you that your average 13 month old can walk. Charlie could barely move at 19 months.

So what do I think we’ve accomplished with two years of ABR? I’ll break it down as simply as I can:

  1. Improved breathing and lung capacity. After we began ABR, I could actually feel Charlie’s chest start to expand for the first time. Before that, only his diaphragm would move.
  2. Improved strength–he began being able to roll on to his stomach, could commando crawl independently, sits independently in a shopping cart, sits and uses one arm independently.
  3. He can push up on his stomach and fully extend both arms.
  4. He can crawl up a one foot step.
  5. His legs are no longer frog-like and have rotated inward.
  6. He can hold his head up while looking down at a tray table.
  7. Able to get himself into the four-point crawl position ( no movement, yet)

We have baffled the doctors as his hamstrings have not gotten worse like they predicted. His scoliosis has actually improved from one x-ray to another. He is strong and healthy despite his physical limitations. In the beginning, any illness would land us in the hospital for days which was exhausting.

When we began ABR, we agreed to do two years of training. Many families that started with us didn’t finish. It’s tough. We have finished and we will be going back in about six months. I probably do half the recommended hours and Charlie still gets stronger and stronger. You should see some of the other kids–it’s amazing.

I know that many people who read this blog are interested in ABR, but have been held back by finances or travel. ABR is working on both of those things. They are in the process of hiring professionals who live in the U.S. to get trained in their techniques. They are also in the very early stages of trying to get their therapy approved by insurance companies. They are conducting several studies to measure the effectiveness of their techniques. If proven effective, this will greatly aid in getting insurance to cover the therapy.

So there ya go! Wrapping up two years of ABR and grateful that we’ve been able to experiment with this therapy. For our family, it has been truly extraordinary. apple craft

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