Another Long Break

It’s been nearly a year since the last routine disruption for our home: as a reminder, nearly a year ago, we were making another visit to Medical City which ushered in four months of testing and multiple hospital stays. This has now been the longest stretch of uninterrupted stasis since the initial incident. It makes me a little nervous, lest we get too comfortable.

There is little to report since the last update. Claire took a therapy break through the holidays. She resumed therapy in January, however, the setting was now our home. We have shifted away from outpatient therapy sessions. While Tiffany and Claire were both reticent to leave their Baylor Grapevine therapy family, the surplus time and effort has paid dividends.

The emotional toll continues to be levied on a sporadic basis. Autumn and Heidi are in good spirits, growing fast and keeping busy. Their emotional awareness contradicts their age: they experience things deeply and are acute to social dynamics and their role in them. We have frequent talks about their perspective and how their experience has uniquely changed their view of the world. We’ve used the phrase before and we’ll use it again: our girls are learning how to deal in an environment ambivalent or ignorant to the walking-wounded. These feelings are infrequent and deep-seated: this lends to an unpredictability for when and how they will materialize, so we take them as they come. We’re proud of the girls and their desire to support each other and embrace living.

I hesitated to write this last paragraph because alone, taken out of context, it betrays our sense of life in general. We have plenty to report that is good. Yes, we have been molded and shaped to a permanent degree by an event  we would change if given the chance. Yet our lives are full and we enjoy our time together.

We’ve reached a point with Claire’s progress where she continues to move forward and at a measured, glacial pace. We’ve tested some different technologies, including Dynavox. Dynavox is an assisted communication tool. It is based on line-of-sight. The patient is able to make a choice by locking on to a picture between two discrete options. We tested the tool for three weeks before sending it back. Claire’s therapists submitted a report to determine whether Claire will benefit from the tool. While we have some skepticism on assisted communication devices, the Dynavox seemed to work with Claire. We’re hoping she is approved so we can continue using the tool.

Claire returned to Our Children’s House Baylor Dallas this last week for a long-overdue visit with Dr. Raji. Claire is now six and has been growing as you’d expect a young girl to grow. Her weight has increased and we’ve observed an increase in spasticity the last few months. Raji increased Claire’s Baclofen dose to combat the spasticity. Raji also expressed some concern over developing sclerosis with Claire’s spine. Our therapeutic means to combat include increasing her strength and stretching with more vigor. We will return to OCH in a couple weeks for another round of Phenol and Botox injections.

We have settled into a routine. Our hopes are undaunted. We continue to work with Claire in hopes she will regain a significant degree of mobility and speech. We have been monitoring the developments around neural stem cell research. No defensible clinical data has emerged yet; however, there are some meaningful trials taking place right now stateside that will have some impact on clinical applications.

Thank you again for your continued support and thoughts. I will submit another update should anything material come around. Otherwise, look for another update in a few months when there is more to report.