Friday, June 11: Update

We’re settling into the cadence we expect will continue until we get our transfer orders to Baylor Children House. It’s a slow, plodding pace and we’re thankful for the opportunity to catch our breath.

Claire slept through the night last night with relative ease. It was good because the morning started with occupational therapists darkening Claire’s doorway. The therapist spent some time demonstrating how to stretch Claire’s ankles, calves, and shoulders. The therapist also test some of Claire’s response control. Claire was told to move her arms up and down. She couldn’t, but she was trying. The therapist said that while she was holding Claire’s arm and giving instructions, she could feel the muscles attempting to lift her arms. She needs help to lift them, but she is responding to some degree. Small, minute steps. Steps nonetheless.

Claire also got to sit in her captains chair today. Her one hour of scheduled time turned into two and a half after she fell sound asleep. The upright position helped clear her airways and escape the prone position in the bed. The physical therapist worked with Claire’s legs and arms again. Claire is making effort to raise and lower her legs, but it is hard to distinguish between some slight agitation posturing and real effort. What we do know is that her legs are responding to touch.

Claire also got her much loved, much adored blanket today. We tried to incorporate it into physical therapy asking her to reach or grasp for it. This was met with protests or frustration. It’s hard to see the pain in her eyes but we’re happy to see the struggle from what we’re telling her to do and the effort she is making to perform. After an hour of work and healthy coughs, she fell asleep.

No big leaps have been made. No major changes. But we are encouraged by the slight day-to-day changes. I am eager to share updates, but I must be patient with those little movements forward. I thank you for being patient along with me.

Later today Tiffany and I got to hold Claire. It warmed both our hearts to feel her in our arms.She was agitated because of some chest congestion but slowly drifting in and out of sleep with us.

Thank you for your prayers and support.

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