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!

Happiness 101

Well, Cristin over at Tiptoeing Through the Tulips nominated me for a Happiness 101 award. Normally I’m terrible at awards. In fact, I had a dream the other night that someone nominated me for a Lemonade Award and I couldn’t remember who. Note to self: get off the computer–you’re dreaming about the dang thing now.

So! This one is easy and totally in-keeping with my year-long quest to celebrate. I’m supposed to name ten things that make me happy.

1. At the top of the list has got to be the Saint’s victory over the Viking last night. Some dummy said the New Orleans needed this win to recover. I’d like to call BS on that one. We didn’t need this, but man on man are we enjoying it. One woman I follow on Twitter brought her grandmother’s ashes to the game. Seriously.

2. Whenever you walk past Charlie, he sticks his hand out to you like, “pick me up!” So cute.

3. Hours of work on Charlie’s shoulders has finally paid off and when I go to put the tray on his high chair, both arms come up in the air as opposed to lefty coming all the way up and righty lagging behind

4. Shoe shopping. Blissdom has become the ultimate shopping excuse. I’ve already bought more pairs than there are days of the conference. Don’t tell Hubby, OK?

5. My good friend has returned from a four month stay in Iraq all in one piece.

6. Another friend is having a baby in 2010!

7. My brother is getting married! Next month. He and his fiance have been dating for almost nine years. If you ask my brother why it took them so long, he’d say, “we don’t want to rush things.” Um, mission accomplished.

8. Jack Bauer–I’m on season five of 24 and I’m Lo-ving it!

9. How I Met Your Mother–even Hubby likes the show and I’m already quoting it.

10. My art. Good things are happening: Group shows, maybe some other things. I’d share more, but right now I’m a little gun-shy after my last experience. I’ll keep you posted.

Ten Blogs that Make me Happy (I’m naming some non-special needs peeps as a horizon-broadening exercise):

Nadine @ Velvet Tush

Erin @Mo Mommy

Tess @Truish Story

Ashley @Weehawken Kitchen

Sarah @ Semi-Desperate Housewife

Melissa @ What. Today. Looks. Like

Shelly @ The Decayed Gentlewoman

Toni @ Toni is Crazy

Jennie @ She Like Purple

Swistle @ Swistle

Whoo! That’s a lotta linkin’!

***** I wanted to edit this and add that no one should feel, ya know, obligated just because I linked them. I often get all tense at the idea of writing to a promp, so NO PRESSURE!****

The Alternative View

I’m well-aware that some of you visit my blog because of your interest in alternatives. We are actively engaged in the alternative therapy ABR and people are naturally curious about that therapy and what is involved with it.

Well, I e-mailed ABR with questions about botox and back braces and I thought I’d share their answers with you guys. I’m going to summarize, though, because they have some fairly long explanations.

Firstly, I’d like to say that there is a lot of misinformation about ABR. ABR does not discourage parents from pursuing additional therapy if they would like and encourages us to have an open dialogue with our doctors about ABR. From my experience, Charlie’s doctors consider ABR a non-entity. They’ve never heard of it, don’t ask many questions, and seem satisfied once they hear that it is non-invasive. I dare say most of them immediately file it in what my father calls “the circular file.” That’s fine by me. I consider doctors resources and not all-knowing beings, so I don’t need them to keep abreast of every detail in Charlie’s life. That’s my job.

On the question of Botox, I received a two part answer. The first part of the answer was, “no, Botox is in no way counter-productive to ABR.” Good. I’d hate to be working against myself. The other part of the answer told me to be mindful that Botox is not FDA approved for children (no surprise there) and that at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine, they were cautioned that little is known about the long-term effects of Botox. She also advised me that Botox is not really a long-term solution, which I knew.

Her comments on the scoliosis thing were really interesting. Basically, she said that something like a back brace is designed to reduce further spinal damage and compression. It does not, however, make a person any stronger. ABR seeks to make a person stronger and also to create space between the vertebrae. So, we could get the back brace if we want–our decision. She then sent me pictures of Charlie’s spine. The first set of pictures were taken during our initial visit to Montreal in October of 08. The second set in November of 09–roughly a year apart.


In this first picture you can see that Charlie’s spine doesn’t bend when he’s tilted to the side. This is abnormal. A normal spine is quite bendy. Having a fused, locked spine can really impede your ability to get things done.

In this picture you can see that Charlie’s spine is beginning to have some bend to it. It’s not perfect, but being able to balance in the sitting position has become a lot easier and this is part of the reason.

There are several other structural changes to Charlie’s body that I can see in these pictures, but I’ll save all that for when they send me our annual review. For now, I know that if I go with the back brace or the Botox then at least I won’t be working against myself. One less thing to worry about.

Related Posts Plugin for WordPress, Blogger...