Thursday, July 15: Update

The march to discharge day continues and we’re scrambling to get everything we need done. Today we met with a home health agency to discuss a part-time nurse for Claire during the day. This is contingent on another ball we’re juggling: Medicaid approval is the only coverage we’d have for in-home care. Our insurance company excludes pediatric nursing care. We take consolation in the fact that Claire did not need a tracheostomy, and she doesn’t have any long-term pulmonary complications. These two items alone require much more equipment and attention to care in the home. We are blessed that the extent of Claire’s medical care is feeding and medications both of which are administered through her g-tube. The bulk of our time and effort, therefore, will be placed on rehabilitation. It really is a blessing and our hearts ache for families that must deal with additional, more complex treatments when they go home.

Claire receives about an hour of rehab with her therapists each day. We administer the other two and a half hours of rehab she receives each day. She doesn’t like it. But she’s getting better. She is beginning to comply with simple commands on a more frequent basis. When we tell her that she needs to work on calming herself down, she makes the effort. When we ask her to open her eyes, she makes the effort. We are excited about the effort. It doesn’t always produce results we can see, but we see the struggle and we love the struggle.

It is hard to see Claire in pain when we do therapy. But we chalk it up to eating vegetables and doing homework. We’ve always seen our role as parents is to make sure that our girls are fully equipped to contribute and make effective decisions in life. For all parents, we understand that we instruct our kids to do things they don’t want to do because we know what is best for them. Our role has not changed. The challenges have. But we will continue to make Claire do the things that are best for her because we still need to give her the tools that will serve her in later life. Right now those tools include protecting her muscles from working against her. They include protecting her range of motion. They include the therapy she often protests against so strongly.

But we know she also needs breaks. We took some long walks today as a family in the coveted Dallas heat and humidity. We stopped to sit and feel the breeze blow the heavy, sweat inspiring air against our faces. It’s really horrible. While we dislike the heat so much, it calms Claire, and she enjoys the walks. It’s a turning of the tables: we force her to do the therapy, and she forces us on death marches around OCH at 4:00 PM in the afternoon. She knows what she’s doing. I’m wise to her machinations.

The girls spent some of their time outside playing schoolyard hand games. It did all of us good, including Claire, to do frivolous things. Both Tiffany and I feel Claire is developing a distaste for the hospital and enjoys the escapes the walks provide. We don’t blame her and share her sentiments. We are all looking forward to taking Claire home.

Claire was very alert for the rest of the evening and had a look of calm and content on her face. I hadn’t seen that face since before this happened. It made me happy.

Thank you as always for your prayers and hopes. We are forever indebted to you, our friends and family, whether we’ve met you or not.