Wednesday, August 4: Update

Claire had a good day today. We diminished her food volume today even more than we planned because Claire’s stomach was still a little unsettled. She still received a healthy amount of food, however, it was a little less than we plan to give her long-term. ‘Long term’ is about four or five days right now. We are constantly re-assessing how well Claire is handling her food and each day’s schedule because things change hour to hour. Yesterday is a good example. Claire hadn’t shown any signs of feeding trouble throughout the day. She was on her final feed, getting ready to call it a wrap; next she was over my knee gasping for air. Watching her while she feeds has become our big time consumer now. But until we feel we’ve got a handle on what she can tolerate, we will continue to observe her for the slightest changes.

Today’s semi-normal schedule was punctuated with an enjoyable visit with the Damoffs. We met George and Jacob today. Both Tiffany and I were all smiles when we met Jacob. I’d been eager to meet him since Jeanne and I started exchanging emails. Both Tiffany and my mom have read Jacob’s story, but I haven’t been able to pick up Jeanne’s book because of the emotional burden. I was hearing bits and pieces about the story from them and decided to visit Jeanne’s image library dedicated to the book. It was Jacob’s smile that encouraged me the most. He was happy. He was the same today. And he had the same encouraging effect on me that his pictures did.

George and Jeanne have become our mentors, without us explicitly telling them. They’ve been on this path for 14 years. They share the accumulated knowledge and wisdom from those years without reserve. We are the richer for it. We look forward to seeing them again soon.

We tried a new bedtime routine tonight with Claire that went very well. Claire has stayed up for a couple more hours after she gets her meds for the past few nights which is different from nights previous: Claire had established a pattern of falling asleep within 45 minutes of receiving her meds. Tiffany and I were a troubled with the new pattern. I’d check on Claire multiple times and each time her eyes were wide. I was also seeing emotion in her eyes. I felt like she was expressing some anxiety and pain. It seemed like the meds were calming her down physically, but her mind was still active. I believe that Claire is very aware right now, and the idea of leaving her in her room, wide-eyed and alone was causing me a lot of discomfort. She may be calm on the outside, but she seemed to be nervous on the inside. So tonight we kept her out of her bed for longer. We brought her into our room so Tiffany could cuddle with her. Claire began relaxing on her own. Her eyes started getting more heavy and her body let down. When we laid her down to bed 30 minutes later than normal, she seemed more assured and ready to fall asleep.

It was also therapeutic for us. We haven’t had a lot of time to just relax with Claire. From the time she wakes up to the time she goes to sleep, she has a full schedule. It’s not about the time quantity with us because she gets loads during the day. It’s more about just holding her and making her feel safe and helping calm her nerves. It’s a routine we will continue because it does such good for all of us.

We will continue to work on her feeds tomorrow and hope that today is a harbinger of a good schedule to come. We thank you for praying for Claire’s recovery and hope the rest of the week treats you well. If you’re in Dallas, try to stay cool. For the rest of you, be thankful you’re not in Dallas.