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.

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16 thoughts on “Another Long Break”

  1. So good to hear the intimate details of how this journey to Claire’s recovery is proceeding. She is so Blessed to have a mom and dad who accept no limitations that would impede her progress. She is also Blessed to have the best two sisters (Autumn and Heidi) who are so loving and supportive and bring so many happy moments to their sister. You all are always on our lips and in our prayers. Thank you for allowing us to be a part of support team as pray warriors. Love and Hugs to all !

  2. I’ve been wondering how Claire was doing. It’s so good to have an update. Prayers for continuted progress!

  3. Thank you for the update. I do so admire your family for the courage you show. May God always be so near to each of you as you continue thru this journey with Him.

  4. Thank you so much for the update! I think of your family often and precious Claire… What a beautiful picture of love, hope and compassion you each are. I continue to pray for strength and tender mercies for you all… We are sending love and hugs from Colorado.

  5. I’ve read your update several times – soaking in the subtleties of the depth of what you’ve written, and how it resonates within your family. I’m so glad that your hopes are undaunted – Claire will do great things because of this. I loved to hear about her Dynavox trial – something we’ve never tried – I’ve heard great success stories. I think about all of you often – and hope that you’re doing well. Is Claire still digging Phineas and Ferb, or has she moved on to bigger and better things? Thanks for sharing your update.

  6. Such a pleasure meeting you and Claire today! You both were very brave for appearing in front of such a large group. I hope your trip was worth it? Not sure if anyone told you, Sharon Pratt, the physical therapist who eval’d Claire today, is recognized as one of the best in the USA and Europe. She is from Ireland and is well respected as a therapist. God bless your entire family!

  7. I just came across the update! I have been wondering how you all are doing these days. Thanks for the update! I am glad that there is continued improvement, even if it is slow. Such great news!

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