Archives for February 2009

Back and Forth

So. . . I hesitate to say that Charlie has been sick because I feel as if we are battling this yucky sinus/congestion thing nearly every week. I’ve paid out a bunch of co-pays and he never has a fever and never has an infection. He’s always just an irritable, snotty, funky mess and it lasts a few days and then it’s gone. Not surprisingly, when it’s cool he feels better and when it warms up he feels worse. I think it’s pretty clear that the kid is an allergy-fest. I may risk one more co-pay and see if he’s old enough to take zyrtec or something. I don’t like the idea of drugging my kid, but he snores like an old man and it’s effecting everything else, so I think it would be worth it if we could put a stop to it.

Anyway, why am I whining about my kid’s allergies? Not because it’s interesting!

You see, on Monday we took Charlie out in his gait trainer (walking contraption). Quick aside here, when I first heard the word gait trainer I HATED it–I have no idea why. Moving on! So we took him out in his gait trainer and for the first time ever he was actually taking steps on his own. Just one step and then with a little help the other step, but this is a huge improvement over his previous work. By the time we finished the session his therapist was wondering if we should order him his very own gait trainer, so he isn’t dependent on a loaner.

Well, on Tuesday the congestion started and he was so irritable and weak on Wednesday that I could barely get him to sit up right in his high chair, which is never a problem for him. Every time we put him in the gait trainer he just sagged it in it. Le sigh.

Now I’ve let him rest up and we’ve got a cold snap coming, so hopefully he’ll be feeling better soon. In the mean time, I WANT TO PRACTICE WALKING!!!!! I am so impatient and I’m at the point where I’m dying to take a little video of his foot action, and he’s just not sleeping well at night and this makes his pretty uncooperative during the day. Seriously, has a person ever died from impatience?

So, my baby’s first steps:Yay!


It Changes You

When Charlie was born I was so scared that he was going to change me in a bad way. I was afraid I’d never be happy again. I was afraid I would become bitter. I was afraid that I would forget how to enjoy life and be thankful for what I have.

Well, really, I realized that our lives are full of events and all we can do is react to them. How we react to them is our choice. I feel pretty confident that for the most part I’m the same girl that I was before Charlie.

Yesterday, however, I realized that I have changed some. My brother’s girlfriend works at an Oil and Gas company and all the big companies rent out hotel suites or restaurants around the French Quarter and then print out special invitations for people to come. She had invitations to three different events and we were excited because they all have open bar and free food.

Well, as I snaked through one location I found myself wondering how a person with a wheelchair would get around the place–not easily is the conclusion I came to and it made me a little sad to think that maybe something like this wouldn’t be a possibility for Charlie (as an adult–God help me if I brought my baby to the Quarter at Mardi Gras). Later we were up on a balcony on Bourbon throwing beads at the tourists. Not to worry–I didn’t encourage anyone to remove their clothes! Anyway, down the street I saw two parents pushing their adult son in a wheelchair. Looking at him, I thought it was a pretty safe bet that he had cerebral palsy. I got one of my prettiest bead and started waving to his dad. He saw me, I motioned that the bead was for his son and threw it to him. He put the bead around his son’s neck and told him something in his ear. Then, the man in the wheelchair looked right up at me, smiled, and gave a bit of a wave. Incredible feeling.

You know, if the way Charlie is going to change me is to make me more observant, more attuned to people with disabilities and more likely to reach out to them, well, I’m fine with that.

ABR Questions and Answers

People have a lot of questions about ABR and like most parents trying it out I think that it’s hard to answer many of them. I thought I’d take a shot at answering some of the ones that seem to come up the most.

What is ABR trying to accomplish?
Ever seen an older person with cerebral palsy? Their arms and legs are often twisted at impossible angles and it looks uncomfortable or maybe even painful. Well, while your child’s brain injury doesn’t get worse, the structural defects that they have do get worse over time and movement becomes more and more difficult. Medicine’s current course of action for the defects includes hard plastic braces (AFO’s, botox injections in tight muscles, and orthopedic surgery). I have a friend whose grown cousin has CP and she says that she can’t count the number of surgeries he’s had at this point.
ABR seeks to correct these defects with another way. Much like the way deep-tissue massage can work out the kinks in a muscle group, ABR uses light compression to restore strength and volume to areas that have collapsed or lost strength.
Uhhhhhh. . . what do you mean by collapsed?
Sounds pretty serious, right? Sounds like something you’d notice, right? Well, in some cases the answer is yes, but in other cases it’s less obvious. We first noticed Charlie’s collapse about two weeks after he was born. He had a deep depression in the middle of his chest. The doctors called it a pectus. In other areas of his body it’s less obvious and is more like a failure to develop then an obvious deformity. Before starting ABR, Charlie had no neck–zip. Now, he has one.

Hubby changing Charlie’s diaper. If you look in the middle of his chest, you can see a deep depression.

My computer tells me that this picture is from early October 2008. Complete neckless wonder.

Hello? There’s a neck. This was taken Valentine’s Weekend.

Who cares if this stuff is collapsed?

This a good point. ABR won’t fix your child’s brain, so what’s the point of trying to fix the structure? Well, the bad structure is responsible for a lot of movement problems. Try bringing up your shoulders by your head and then lift up one of your arms–not easy. Imagine if these inadequacies were spread out around your entire body. ABR theorizes that spasticity and over-looseness are two side of the same coin: because your structure isn’t balanced, the body respond appropriately–loose where there is too much space between parts and tight where there isn’t enough.

Why can I only learn about ABR in Canada?

The only ABR center in North America is located in Montreal, Canada. The reason is simple. It’s the only place where somebody went ahead and opened one. Here’s the thing. Leonid Blynum spent many years perfecting a technique for working on the structure of kids with brain injury. Along the way he worked with his father who was a medical doctor and also Linda Scotson who runs the Advance Center in England. His love appears to be in the research–not in the implementation. Individuals start ABR centers to teach people how to implement Leonid’s research. Annie, who runs the center in Montreal, tried ABR after experimenting with eighteen other therapies unsuccessfully. She has a child with CP. She believes in ABR so much that she opened a center in her neighborhood and now people fly there from all over the US to learn about the techniques. Leonid isn’t running around teaching people techniques. He evaluates children and makes recommendations for exercises based on their structural deficits. He spends the rest of his time perfecting techniques and doing more research. Lately he’s been in Singapore a lot researching how to work on the bodies of people of Asian descent. So if we want a center in the US we’d have to find someone who wanted to open one and I haven’t met any volunteers. Trainers from the Canadian center do come to the US several times a year to cut back on family’s overall travel expenses. My latest satellite visit was to Plano, Texas, which is a one-day drive from where I live.

I’ve heard that there’s an ABR machine?

There is an ABR machine but in most cases they make you wait three to six months before they let you have one. ABR machines are not cheap. They rent for 350 Canadian dollars a month. NOT cheap. Machines provide bulk hours of therapy to the abdomen, but they aren’t as effective as hours you do with your hands. I look at like this: if you have a kink in your back you can go to a masseuse or use one of those massage chair things. The massage chair thing is pretty good, but not as good as having someone really get in there. The benefit of the machine is that you can strap it on your child for the night and they can get therapy while they sleep.

If this method is so great then why hasn’t it been proven and why won’t insurance pay for it?

ABR is still in it’s infancy, but I believe that it is getting closer to becoming an accepted form of treatment. Insurance doesn’t pay for it because there haven’t been any double-blind studies proving it’s effectiveness, but that day may be here sooner than we think. ABR techniques were developed over time working with several people. One of those people is Linda Scotson at the Advance center in England. The Advance Centre has actually brought researchers in and have begun to show that their techniques are effective. A synopsis of the study can be found here.

ABR in Canada is on a similar path. They have PhD student who is at the center weekly and I know that I signed a release allowing Charlie’s info to be used for reasearch purposes. At least one paper has been written regarding ABR’s effect on scoliosis and my understanding is that it will soon be presented at a Conference in Australia. The center in Montreal has just been designated a research center by the Canadian government, which means that now money will exist for the sole purpose of researching ABR and seeing whether or not it is an effective form of treatment.

So. . . this guy Leonid is a mathematician? How about some credentials? It’s true that Leonid is a mathematician and he became interested in restoring the structure of the human body from a research angle. While he may not be full of credentials, his staff certainly is. Both of the trainers that I worked with are also physical therapists. I’m not sure if that is a requirement, but it does feel good to know that they are trained. Another mother asked our trainer in Plano, Gavin, why he’d decided to become an ABR trainer. His response was simple: “they were getting results and I wanted to see how they were doing it.” Here is an extremely detailed article on Leonid if you’d like to read it. Frankly, I couldn’t understand all of it, but maybe you can:

Is it true that ABR isn’t compatible with other therapies? While is Canada, we bandied about this question a lot. The only therapy that they said was incompatible with ABR was a therapy called patterning, which is taught at The Institutes in Philadelphia. A couple of things makes this confusing. One, some parents choose to only do the the ABR program. The other reason is because ABR deems many traditional therapies ineffective. Their theory is that it does no good to try to improve function if you don’t improve the structure. The caveat to this is that they acknowledge that there are benefits to therapy beyond function–having your child upright can incourage digestion, spatial awareness, and social interaction. If I could I would upload the video of me grilling Gavin and him trying to avoid telling me his opinion on things like standers and AFO’s. For the record, Gavin and others at the Center completely agreed with my decision to continue putting Charlie in the stander.

Did I answer your question? If not, leave me one in the comments and I’ll try to answer. If I can’t answer then I recommend sending an e-mail directly to the center. They’re about a million times more helpful then most of the medical personnel I meet in the US.

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