August 13, 2008

"These Boots Were Made For Walking. . .

[sing along] . . and that just what they'll do. One of these days these boots are gonna walk all over you."

Well, at least we hope. I have a new appreciation for hope now. Before, hope meant crossing my fingers and anticipating. Hope now means hours and hours of work and time invested, having complete optimism and faith that my investment will bring about the desired outcome, all the while dismissing the little thoughts in the back of my mind that it may not.

The lyrics to that song take on a whole new meaning as I sing them to Bridger every morning as we do his therapy in. . .

His new therapeutic gait trainer!

His little body is getting stronger one little muscle fiber at a time. He truly is a champion!

By the way, this is hard. That is not a complaint, just a statement. Bridger feels very trapped in a body that his mind can't make move. Pretty much from 1:00pm on, he cries out of frustration whenever I put him down. If you were interested in a glimpse at the timing logistics of my day, here is a piece of my schedule:

Bridger needs 4 tube feeds a day as well as the 3 high chair mealtimes with the rest of us. The tube feeds have to be at least 3 hours apart, no later than 6:30pm in the evening or he cries all night due to reflux. They cannot be within an hour before the highchair time or else he is too full for the vital practice of eating the "real stuff". The tube feeds can't come within an hour after highchair time or else the real food in his stomach chunks up the tube and formula can't go down (sorry, gross, but reality nonetheless) and he can't do any type of feeding, oral or tube, within 45 minutes of therapy time otherwise he just throws it up from the physical exertion during therapy. I do about 3 hours of physical, hands-on therapy with him each day, that doesn't count all of the "play time", speech and fine motor skills work I do. With his gait trainer I am physically moving each leg up, pressing heal down, rolling his foot to toe and pushing down and forward, then repeating with the other leg. . . back and forth, mimicking the walking motion to help him wire his brain how to these motions. Collectively, an hour of time is devoted to helping him sit, anchoring his hips, holding his lower body, tucking in his hyperextended legs to form his base, patting his stomach and massaging his spine to activate and engage those muscles. This only requires 5 of my 8 arms. I have to massage his little muslces after all of this or else he cries all night with severe muscles cramps. I usually spend at least an hour or two each day going through the massive amounts of paperwork, cutting my way through the red tape to figure out benefits, services and insurance. On this week I have also had 8 medical appointments in the last 8 days. Oh yeah, and then there are the 3 other little ones, 6, 5 and 3 to take care of and the few minutes a day that requires (swim lessons to attend, scissor skills to work on, itty-bitty nails that beg for mom to paint them, meals to make, sweeping up a good portion of those same meals from under everyone's chair when mealtime is over, games to play, Legos to pick up including the little ones that are embedded in my foot from stepping on them, legos to threaten to throw away as I bandage my foot, countless loads of laundry that secretly multiply and replenish when I have my back turned, school supplies to buy, scriptures to teach, milk to stock, parks to frequent, wiggles to get out, hugs to get in. . .) You do the math. Also, dear hubs is working until the wee hours of the night and good chunks of each Saturday for the past several months. Calgon, take me away -- who am I kidding, who has time to soak in the tub. Unless, I added my laundry in there with my Calgon and could wash that at the same time. . . hmmm, now there is an efficient thought. I pride myself on how efficient I can be sometimes.

So, I guess if this wasn't so impossible it just might be great. Luckily, those kids are just so darn cute that it is impossible for all of this NOT to be great.