Saturday, November 21, 2009

Well, We're Here Again

Well, we're in Plano again--same hotel, similar room, same families, same food.

A little over a year ago I started this ABR thing. I packed up my child, my mother, my father, I got on a plane (something I hadn't done in years), and off we all went to Montreal, Canada. I was fairly certain that I had lost my mind.

I was also certain that I had to go, and had to try this therapy. Charlie's doctors had already told me that we were doing everything we could do and still my little boy could barely move, could barely pick up his head, and could only roll off of his stomach. He definitely couldn't sit.

All through the ABR training, I would have these flashes where I realized how crazy it all seemed. I mean, they wanted me to push on my kid with towels. Towels don't feel very scientific.

I was relying on the experience of others. Countless parents had told me that ABR helped their children more than anything else. Jacqui at Terrible Palsy had documented her son's progress and I hadn't seen anyone else get those kinds of results.

So I was stepping out on a limb and trying something untested. I knew full-well that it could be a disaster--a waste of time, money, and energy, but felt that it was a risk worth taking.

ABR has been so good for Charlie. Within weeks of starting it, he was rolling onto his stomach and commando-crawling towards things that interested him. His sitting improved, his vision improved, his reflux got better. It was obvious that we'd made a good decision for our family.

The amazing thing about ABR, though, are all the families that don't have blogs, never post a video on Youtube, or a picture on the support board. These are the kids that blow you away when you see them after three or six months. It's also really inspiring to talk to the parents who have been doing this therapy for a long time. Today I talked to Julia' s mom, Carolyn. Julia went into cardiac arrest during a routine hospital procedure at two months of age. After this happened, she was blind, deaf in one ear, and didn't respond to touch. The doctors told her parents that she would probably spend the rest of her life in a persistent vegetative state. These days she's in a wheelchair, but she can see and hear, and even talks some. These days she's about seven and working on self-feedingand reads age appropriately. She reads. Swish that around in your mind for a few minutes. I'll be honest, if my kid didn't respond to touch, I wouldn't know where to start. It's crazy what is possible if parents are dedicated to their children.

Well, I'm exhausted. This trip has kicked my butt and I still have some more training tomorrow morning. I want to talk all about our Phenobarb wean and what body parts we're working on next, but I'm calling it a night.