Friday, August 13: Update

Everybody is in bed now and another work week is over. After I laid Claire down to sleep, I walked into the kitchen and Tiffany asked me, “Was that a sigh?” I told her it was. I don’t sigh much, but this week was a long one and that sigh may be the one break we get before the night begins and we hit the reset button tomorrow morning. It’s going to be a busy weekend.

Tiffany and I have been brainstorming ideas to help relive Claire’s pain and discomfort. Our meeting on the 25th seems close to others, but 12 days is an eternity for us. We can’t stomach the fact that a solution may exist to ease Claire’s pain but we have to wait for it. So we started thinking up ideas today. We are going to try our new approach through the weekend and see how Claire is on Monday. We have a percussion massager that we started using today hoping it will heat her muscles and break apart her tone. We made sure to up her water intake today to deal with the amount of acid being released into her system from the muscles. We paired the massager with deep tissue massages and her regular stretching regimen. We moved Claire into the bathtub after one session for a long soak with hopes that the buoyancy will alleviate some of her spasticity as well. By the end of the day we were seeing some improvements, but the jury is still out on whether they will be long-lasting or not. Her feet aren’t pointing in as much and when she relaxes, her feet fall closer to a neutral position.So far, so good.

We also repurposed the massager for another recurring issue. Claire’s body still hasn’t developing a normal plumbing schedule. The Miralax was sidelined because of the vomiting, but now she’s backed up. The prunes and water levels have not solved the problem. We gave her a smaller dose of Miralax this evening and hope it will alleviate her discomfort.

We feel relatively comfortable bringing the Miralax back into the game because Claire has not stopped having eating problems since we took it off the solution list. Claire’s reflux has diminished, however, she still has mild episodes of reflux. Today was the first episode when I was not home. Tiffany and the girls called emergency services to stay on the precautionary side of things and I’m glad they did. Claire was fine. The firemen and the paramedics checked her out and gave her the thumbs up. They also cleaned up the house to help Tiffany. They’re our family now. Family take care of each other. They continue to take care of us.

We’re going to plug away through the weekend and hope to break through Claire’s tone. We’re aiming to see if we can eliminate the knots and tightness and stop the self-perpetuating cycle the muscle rigidity brings. We thank you again for your support. We’re looking forward to seeing many of you soon. Goodnight!

Sign-Up Sheet for Claire Visits

I tried out four online sign-up sheets and this is the one I liked the best. We’ll see how well it works.

Click here or the button below to go to Claire’s calendar for signups. This will open in a new window. Please be aware that the time slots for each day are for a single volunteer/family to visit Claire. Each slot is between two and three hours long: you are not obligated to stay for the entire time slot. You are signing up to visit Claire anytime within your time slot. Claire does best with visits between 30 and 60 minutes.

Please also be aware that the times are subject to change. I will update the calendar as new events come up. The sign-up calendar goes through October right now. Feel free to email me with any questions at