Made of Gray

Intensive Physical Therapy - Week 1 Re-cap

Holly D Gray7 Comments
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I'm in LOVE with this therapy. If I had my way, I would drop everything else and do this every 6 weeks. Financially it won't happen, but we can always dream!
JANsuittherapy
The very first day Caleigh was a rock star. She did everything asked of her and the 3 hours went by super fast. We came home and she took a 45 minute nap. She was up, wired and ready to go. She didn't settle into sleep until 10 that night which is not her normal and then she was up and down all night long. Overstimulated is the word here.

The second day was rough. Caleigh was tired and cried the majority of the 3 hours. She still worked and did what was asked of her, but she didn't do it without a fight. To top off the 3 hours of an exhausted 3 year old, Caleigh and I came out to the van finding a very flat tire. We had to wait about 30 minutes for road side assistance and then we had to drive an hour back to the house on the spare. The whole day was terrible. We went to bed, all of us, at 8:30.

After much discussion about the importance of sleep; Caleigh got her zzzzzz.

The third day was much better with only a few 3 year old tantrums. We started to notice more strength and control. Up until this point Caleigh has been using her extension tone to move. The whole point of this therapy is to teach her to use her flexors which have no strength because her extensors have been taking over. Working around the constant movement of the Dystonia can be done, but it takes a lot of motor planning and Caleigh is getting faster everyday. You can see her thinking things through and then making the movement. It's wonderful and heart wrenching at the same time.
JANsuittherapy4
Day four was just as good. Caleigh's head control seemed better as we started working on sitting unsupported. The suit in the photos is called a Thera-Suit. You can read more about the suit and therapy here. Basically the therapy is like going to the gym with a personal trainer everyday. Caleigh does reps of every movement which are increased daily. She lifts weights with her legs and the weight is increased daily. Caleigh lifts her head up off a wedge, and with the proper coaching and support, extends her arms out in front of her to help pull herself to sitting. Usually she pulls her arms back (tone kicking in) while pulling her head up and it just doesn't work. She pushes through her shoulders instead of letting her elbows collapse while in an all 4's position. We are also working on integrating some of the reflexes that seem to be hanging on by a thread. All completely normal PT activities, but the intensive part is really the key here.

The fifth day, yesterday, was just as wonderful. Caleigh is stronger by the end of the first week. I on the other hand....feel completely exhausted. The driving and the learning is tough, but honestly if Caleigh can get up there and do anything asked of her there really is no reason for me to complain. Caleigh smiles when we talk about going everyday. She enjoys the work and she is super motivated.

Last night we sat down to watch Dora and practice sitting.
This is what Caleigh did....
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This is all her muscle working. Usually, Caleigh's tone holds her up when she is excited and then she collapses when her tone stops. This is just her pushing up using the right muscles. She relaxes and rests often but can still push back up. I'm thinking if we get independent sitting out of this 3 week stint it will be well worth it. We are very proud of our girl!

Once you choose hope, anything's possible.
~Christopher Reeve

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