Tuesday, July 13: Update

Claire’s beneficial pool visit last week was not a predictor of today’s trip. Things didn’t start off very well. The warm pool at the rehab center was out for the count: a biological attack made it unfit for service. So Claire was relegated to therapy in the large pool which is about four degrees cooler. Those four degrees were very important degrees to Claire. She voiced her displeasure for the first half of the session before finally moderating her body temperature and calming down. But Murphy’s Law says that what can go wrong will go wrong. The temporary calm was soon disrupted when the fire alarm system sounded in the rehab center. The therapist scrambled to cover Claire’s ears while we retrieved towels to wrap around her head. It was loud. And it lasted a long time. The alarm finally retreated and Claire finished out her session. It set a bar that we hope is not matched when she returns tomorrow.

Despite the hardships we were still appreciative that Mary, our therapist, got Claire to calm down and protected her in the water. She is great with Claire and we’re lucky to have her working with Claire.

Claire’s walk today was less eventful and had a calming effect on her. We made two laps around the OCH campus before Claire let us know she was done and ready to head back inside. We met with the speech therapist to discuss strategies to help minimize the strain in her facial muscles. Claire has been tensing more on the left side of her body. This is influencing her facial muscles as well and causing her jaw to set unnaturally to her left. We learned how to massage her face, focusing on her cheek and jaw muscles to help alleviate the pain in those areas. After working with her today, her mouth is more relaxed and not as tense.

We discussed new treatments for Claire’s muscle spasticity today. We have three options available to us, one of which was nearly performed before leaving Medical City. The most invasive option is called the ITB pump: it is a Baclofen pump that is surgically planted in Claire’s abdominal cavity and feeds Baclofen directly to her spinal cord. This is the option intended to treat severe spasticity. Claire does not have severe muscle rigidity yet, but it is possible that it could develop. Tiffany and I and the doctor think this is an option that should be explored further down the road.

Because we don’t know whether Claire’s spasticity will improve or degenerate, we still need to employ a strategy that minimizes the downsides and equips her to perform well in rehab. The best tactic we feel for that is a combination of the second two options: phenol will treat Claire’s lower extremities and botox will treat her upper extremities. Both procedures are minimally invasive and lasts for up to six months before a renewal procedure is needed. This should give us the bridge we need to evaluate whether Claire’s spasticity is a permanent effect of her brain injury or a product of her brain calming down and will improve with time.

We continue to learn new aspects of our new life and how it will shape our near future. It is a daily battle allowing ourselves to grieve without succumbing to debilitating fears. It’s difficult to be positive with Claire when more sinister thoughts creep at the corners of our mind. The struggle to remain truly positive and speak encouragement to Claire leaves us exhausted at the end of the day. Reading your comments helps us renew our strength and prepare for the nights. Thank you for your support.