Monday, June 14: Update

Today has been spent anticipating and preparing for our move to Baylor Children’s House tomorrow. We don’t know what time we will be making the transfer so we’ve been taking the time to clean our courtesy room and transport the generosity of others back home.

Tiffany and I made our first trip back home together. We knew it would be a difficult trip. We busied ourselves as much as we could while we were there. It was therapeutic to think that by organizing the house some we were bringing a little bit of sanity back into our lives.

Claire has started varying the noises she makes and we are picking up on the different emotions and messages she is communicating. Consistent with her ability prior to all this, she is very good at communicating her disapproval. Christina, one of her nurses today, told us that Claire yelled at her when she started to move Claire back to the bed. That sounds about right.

The next few days will be hectic as we get on-boarded at Baylor’s and figure out the routine for the next six weeks. Once we have an idea of how things will operate, we will let you know when visits will be good to resume. We thank everyone who has visited during the last two weeks while we were at Medical City. Your support has been overwhelming and encouraging. We are eager to see you again at Baylor’s.

Thank you again for your prayers, hopes and support. I am hopeful for the updates to come over the next several weeks as Claire and our family start the intensive rehab program. Talk to you soon.

Sunday, June 13: Update

There’s no rest for the weary. That’s how today felt. But we have no complaints because we enjoyed all of it.

We met with the doctor this morning and he insisted that we get Claire out of her bed. They laid out that we needed to hold her and give her a wagon ride around the unit. It sounded like a good idea to us. It was.

The first order of business was to get Claire prepared for the day. This included a diaper change and a new hospital gown (she graduated to hospital gowns yesterday and feels much more proper partially clothed now). Her eyes were alert and searching while we prepped her. An unexpected show of progress had our hearts in our throats while we were talking to her. For context, while Claire has been awake, her eyes have tended to shift to her upper left: it seems she is more comfortable looking that direction. This could be due to the insult to the brain or just her natural tendency. Either way it has been difficult for her to shift her gaze to her right since waking up. Tiffany was talking to Claire on her left today when I came to the right side of the bed. I told her to “Look at Daddy” and then looked away briefly. The words weren’t out of my mouth when Tiffany said “She’s looking at you.” I looked back and her eyes had shifted to her right to meet mine. It is another small step, but it was a big one for her. Throughout the day Tiffany and I both kept testing and she was responsive with her looks and is starting to track with more efficacy.

We started the days activities with some Mommy-Claire bonding time. By the end of the day, Tiffany logged several hours worth of holding Claire. It was good for both girls.

Wagon rides around the PICU were next on the agenda. We also arranged to have Heidi and Autumn play roles. They hadn’t seen Claire for a few days and were able to spend about 30 minutes with her today while Claire cruised. They couldn’t follow her through the unit so we staged a train station where Claire would pull in for five minutes with Autumn and Heidi before taking another lap.

It was fun to watch the girls with Claire. They both said such sweet things to her and consoled her about some of the things that have been concerning them. Autumn was unsure of how to handle the news that Claire may need to use a wheelchair for a while. She took the opportunity to tell Claire that she didn’t need to worry about being in a wheelchair because she and Heidi would push her, help her and find things to do that she could do with them. The sweet things they whispered to her made us cry; and it was nice to be together as a family again.

Claire listened intently to Autumn and Heidi, watched their faces and tried to talk to them. Each time that we went to make another lap, the girls would watch us from around the corner and wait for Claire to return.

We all got a chance to get out of the hospital and go to a nearby park with our friends Jon, Becky and Evan. We are still tormented when we leave. It was great to get out, but each time we leave behind a member of our family. It doesn’t feel right, and we battle thoughts that continue to plague us. We miss Claire, and we miss being a family. We won’t be comfortable again until she rejoins us.

To hasten that return, we have learned that our tentative transfer to Baylor Children’s House is set for Tuesday. We are all eager to get started on Claire’s rehab, but we are sad to see so many people who have been so critical to this story left behind. We take consolation in the hope that we will soon be back to introduce Claire to the people who saved her life.

Thank you again for your prayers and support. We continue to be overwhelmed.