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.
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!
I'm Katy. I'm a wife, mom, and champion napper. My oldest son is six and has cerebral palsy, I have two-year-old b/b twins, and a one-year-old. I consider myself living proof that God has a sense of humor. Read More…