Vaccinations

Charlie was fully vaccinated through two months of age. I’d heard about all the controversy surrounding vaccines, but frankly, we’d been through so much the last thing I wanted was to land in the hospital with some random, totally preventable illness. beach 3 147

When Charlie was four months old, we were in the hospital having a shunt installed to drain cerebrospinal fluid off of his brain (good times). When he was six months old, he started having some very serious seizures, and vaccines were contra-indicated for the treatment of those seizures. So was going out in public. Again, fun times. Really, the first six months of Charlie’s life was one big party. If by party, you mean major medical event.

So Charlie was around one year of age before I got around to even thinking about vaccines again. At that point, after having spent some time in Seizure Town, I was pretty wary of vaccines and the associated risks. beach 3 275

So we waited.

And then suddenly, without me even noticing, Charlie was three with preschool looming before us. Louisiana is pretty lenient with regards to vaccinations and public school, so it was really up to me to decide how much, how many. etc.

I ended up finding this really fantastic book for any of you guys who aren’t sure about vaccinating or who maybe want to delay or even space out your child’s vaccinations. It’s called The Vaccine Book and it is authored by Dr. Robert Sears. What I like about it is that I didn’t feel pressured to do one thing or another—rather, he gives you a lot of options. He gives you a schedule for getting all your vaccines on a slow schedule, he suggests a reduced schedule for people who are nervous about it, he even provides you with the traditional schedule. The book tells you what additives are in vaccines and what the potential risks are.

We’re starting with the reduced schedule and Charlie got his first two vaccines in almost two years last week. He hated them. It wasn’t so much that they hurt—he seemed more mad that somebody DARED to do that to him. Twice. I guess I can see his point.

We started with some of the ones that prevent meningitis and will be moving on to DTaP (diphtheria, tetanus, pertussis) in about a month.

So if you have questions about vaccines, please check out this book! It saved me a ton of research time by putting everything in one place and it did so in a way that didn’t sound crazy and reactive.

Have a happy Fourth, y’all!beach 2 037

Alternative Treatment for Cerebral Palsy

I give a lot of credit to the ABR method for Charlie’s amazing progress. It’s not, however, the only treatment we do with him. ABR makes Charlie strong, but it doesn’t make him move. To help Charlie learn how to move, we take him to a person who practices Feldenkrais.

The last time we went to ABR they told us that we’d made very few changes below the waist. This is probably because we’ve never worked below the the waist. Despite that, Charlie has learned to take independent steps. I know that Feldenkrais has been instrumental in that progress.

Feldenkrais was developed to help teach movement. The general idea is that if a person does a movement enough times, that will create a “memory” in the brain for that movement. So with a kid like Charlie our practitioner does lots of movements that isolate each leg and each arm.

Charlie’s brain bled the day after birth and in many ways he acted like an itty-bitty stroke victim–he had very little use of his right arm and sometimes seems to forget that it’s there. He also has some more classic CP–he used his legs as one unit, and honestly, he wasn’t great about noticing them either.

We’ve been doing Feldenkrais for a little over a year and wow, has it made a difference. Here are a few of the things that I credit our Feldenkrais work with:

  • Improved use of his right hand including trying to use it almost every day–the other day he ate half a sandwich wish his right hand.
  • Moving his legs independent of one another.
  • Taking steps.
  • Improved weight shifting with arms, which has led to independent sitting.

I’m sure there are other things that are a combination of all our efforts, but these are things that very specifically seem to be related to movements Charlie does in Feldenkrais.

We go weekly to see our practitioner, but it can be beneficial to do just a few sessions as well. Charlie just loves Feldenkrais and smiles and claps when we arrive at each session.

If you’re interested in finding a Feldenkrais practitioner in your area, here’s a link. Anat Baniel is an off-shoot of Feldenkrais that has many exercises specifically tailored for kids with special needs. To look for a practitioner of this method, search here. If you are able to find a certified physical therapist who practices these techniques, then many times insurance will cover it. Score!

Just wanted to tell you guys about something that’s working for us.

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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