Friday, July 16: Update

If the next 10 days proceed as we expect, Claire will be continuing her recovery at Baylor’s Grapevine Our Children’s House outpatient facility. We were excited to learn that the Grapevine facility also has an aquatic center on site: other satellite offices have access to pool therapy but not on site. The aquatic therapy was one of three items on or wish list for Claire’s outpatient rehab center. The other two included a great therapy staff and close proximity to home. We ended up getting all three. The Grapevine OCH staff is well respected and the facility is only eight miles away from home. Now that we’ve nominated the Grapevine location as Claire’s provider, we begin the process of scheduling evaluations so we can make a seamless transition to outpatient without losing any momentum.

We continued that momentum with feeds and meds today. We eliminated another feeding time today and shifted her feeds forward. This puts Claire on a more normal feeding schedule with no feeds occurring a night. This is important because it eliminates two interruptions at night and helps get her ready to transition home. She had a little bit of reflux with this shift today, so we are going to pace the feeds over a longer feeding period tomorrow to see if her stomach will adjust to the increased volume better.

We also worked with today’s doctor to come up with a gameplan that eliminates some of the meds. She is now completely off Ativan and will begin coming off the Seroquel tomorrow. She is making the changes with few – if any – side effects.

Claire had another good night of sleep last night followed by an equally good day. Her ups and downs today were even and she responded well to therapy. While it’s hard to recognize the day to day changes, we marveled at how far she has come since admission at OCH. We are optimistic that the progress she has made so far is just a scout for the recovery to come.

Tomorrow is a big day for us. My mom leaves early tomorrow morning, homeward bound for Colorado. I’ll have much more to say about this tomorrow. Please keep her in mind as she flies home and makes the adjustment back to ‘normal’ life. We will miss her something fierce.

Thank you for your prayers and hopes.