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.

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

Yet Another Plano Trip

Well, we’re back from eating our way through Plano, Texas and the surrounding areas. I am not kidding. My parents, some of the tiniest people on the planet, are really enthusiastic about eating. They are equally enthusiastic about feeding Charlie–that’s their idea o true entertainment.

Whenever I’m out of town I try to go to places that we don’t have in NOLA (that’s New Orleans, LA)–I mean, if I’m 400 miles away, why eat at Applebees, ya know?

So we started at Panera Bread Company–at this point we realized that we’d forgotten Charlie’s seat–the one we take with us everywhere, so he can actually SIT at the table. It was ugly for a moment, but we tried a restaurant high chair and lo and behold! He could actually kind of sit in one. He starts to list to the side after awhile, but man, what milestone.
So, Panera. Delicious bread, salad, and warm potato soup, which was good because it was COLD.

We also hit Carrabas Italian Something-Or-Other. I had pasta stuffed with cheese, which is how I like my pasta–stuffed with things–especially it it’s cheese.
And there was Pei Wei Chinese food.

And Uncle Julio’s Mexican Restaurant–you should always get Mexican food when you’re in Texas–they really know how to make it there.

I think I’m still full.

You may remember that the purpose of this trip wasn’t to eat at a wide variety of chain restaurants, but rather, to learn some new therapy techniques and see how he’s progressing.
Things are good.

Improvements are there. They focused mostly on big, functional changes. Charlie used to be made of silly putty. There was no way he could sit up at all. At the six month mark, he was starting to have trunk control. At the one year mark, He can actually sit independently for brief periods. Our traditional PT has actually taken sitting off of our goal sheet–she’s moving on to bigger things like walking!

His neck is a lot longer in the back. Might not seem like a big deal, but when you start seeing how many CP kids have a hunched look and trouble raising their arms, you realize you need a neck. Also, Charlie’s physiatrist who can’t even remember the name of this therapy has commented on how improved his head control is.

They’ve also got some shots of him pushing into quadraped and honestly, these aren’t good shot–he’s actually a LOT better at this now–getting full arm extension and sometimes even getting his butt off the floor.

These pictures aren’t dramatic as my first set, but major progress is still visible. He can sit. Not for a long time, but still. It’s amazing.
Total, I think I spent about 520 hours working on Charlie with my two hands. My parents coughed up the money for the ABR machine and I think we got about 500 hours with that. Machine hours are NOT the same as manual hours, but they help. Is it worth all the time and money? For us, yes. For others, maybe not. I don’t think he’d be this strong without it. Also, his overall health has improved dramatically, which isn’t something you can take a picture of. He’s a great eater, a good pooper, and he sleeps relatively well. He seems to be getting better and better at fending off disease and when he does get sick, it doesn’t decimate him the way it used to.

Up next we’re working on little things like jaw strength and even more neck length, but also big-picture stuff like strengthening his pelvis, which should aid in standing and walking. Can’t wait to see where that takes us!
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