Monday, July 19: Update

I hit the wall today so this one is going to be quick.

The Sandman has finally caught up to me. The three and four-hour nights of sleep have left my sleep reserves at a deficit. It was difficult to keep my eyes open today and everything looked like a bed. And now I’m ready to crawl into bed, which is rare because I don’t often get to bed before midnight.

Claire is already asleep. She knocked off around 8:45 PM today. She is having a harder time adjusting to the feed changes than at previous feed adjustments. So we are moderating her feeding a bit to give her stomach a break.

Aside from the digestive discomfort, Claire was very alert today. Her eyes were open and searching. Her face was often relaxed and pensive. Her muscles are showing some rigidity relief as well. Her left bicep is not as spastic and her left foot is more nimble. These two areas have been the most troublesome and it’s nice to see some positive changes.

We will continue the fight against muscle spasticity this Wednesday when Claire goes into the operating room for her botox and phenol injections. We are all looking forward to the benefits that come with these procedures: Claire’s rigidity should be greatly diminished from them. We feel that a portion of Claire’s continued agitation can be attributed to her muscle discomfort. The injections should alleviate the stress and pain in her muscles and we hope they will improve her demeanor.

We have a Care Conference tomorrow morning followed by another pool therapy session. This will be our last Care Conference before discharge. We hope all goes well and we continue the charge toward home.

Thank you for your support. Good night!