Tuesday, August 9 Update

The summer break is in the wrap-up phase for our household, and we’re only hoping the weather will soon follow suit. Yes, it’s cliche to comment on the weather, but in this case, it would be negligent of me to not mention it at least once: it’s hot. We’re racing toward breaking a record that was set in 1980 for most consecutive days for triple digit temperatures. I think we’ve all gotten sick of it being the “go-to” subject as well every time we step on the elevator. We all hate the weather small talk, but it’s just so compelling right now because we’re collectively exhausted with the heat. I’ve also exhausted this topic and won’t mention it again.

Overall, the summer has been a blur. We’ve had to keep our heads on a swivel  for the last three months, shuttling Autumn and Heidi to camps and Claire to therapy sessions. We’ve tackled a handful of projects around the house in between visits from house guests. And we understand that most of you have had similar schedules. This has been the first summer that we feel was busier than the school year. It has required more coordination and help from family friends based on our new dynamic. Last summer was spent in hospitals and feels like it didn’t exist. We were still in the throes of discovering what our lives would be like going forward. And those lessons become more acute as time continues to pass.

Claire’s continues to progress as well. While Claire’s achievements haven’t been as emotionally satisfying as her first smile and laugh, they are still indications that her body is working hard to recover, relearn and repair. Claire had a second round of Phenol and Botox injections in late July which required some general anethesia and a visit back to Our Children’s House Dallas. She’s been much more loose because of it and further relaxed her arms and legs.

We’ve also seen some marked improvement in Claire’s core strength. Tiffany woke me up six weeks ago in the middle of the night after going in to turn Claire over. We have to rotate Claire in the night to make sure she’s not developing any bed sores: the skin breaks down easily from prolonged pressure. On this night Tiffany didn’t need to turn Claire. Claire had turned herself. It’s starting to happen with more frequency now as well. While turning yourself in the middle of the night can be directed by unconscious activity, we’ve also seen it start occurring during the day as well. Claire is turning herself from one side to the other while awake.

We’re excited to see what’s next after turning and hopeful based on a new phenomenon Claire has demonstrated. It’s also a source of comedy for our family. For those parents that recall the Moro reflex, or startle reflex tests, this will be clear. Recall that this reflex is the response to the sudden loss of support. An absense of the reflex is an indication of severe motor system disorder. Claire has not had the reflex since the accident for obvious reasons: her basal ganglia received the brunt of the injury which controls motor movement. In the last eight weeks, however, Claire has been demonstrating the response accompanied with sudden support loss. Another analogue is when you fall asleep sitting up and suddenly shock yourself awake when you feel your balance start to tip. Throughout the day, Claire will be stable and then, unannounced, fling her arms straight out as if trying to steady herself. This is accompanied with a gasp and sometimes her legs mimicking her arms. We’ve discussed with her doctors and it can be an indication not only of the motor system and vestibular system improving, but also nerve growth. Whenever it happens, it makes us giggle. Whoever is present always helps calm Claire down and reassure her that she’s safe as well as reminding her that what’s happening is a good thing and indicates she’s getting better.

This kind of encouragement has become our common theme. Claire goes through ups and downs. It’s apparent that Claire has good days and bad days. The last week Claire seemed to be a little downtrodden. These weeks also seem to be demarcated with an absence of good quality time with Tiffany: on a busy week where there are a lot of logistics to look after and Claire and Tiffany don’t get one-on-one time, Claire is more irritable and smiles and laughs are harder to come by. That was this last week. Tiffany has the biggest impact on Claire. And when Tiffany and Claire did finally get some time together, it was clear that what was missing. Claire is always eager to laugh with Tiffany and those laughs go a long way.

We’ve been looking into other ways to help Claire based on the funds we received over the last four months. We’ve settled on trying a Neurologic Chiropractor based on some feedback we’ve received. We will be meeting with the practitioner in the next couple weeks so he can learn about Claire and also determine whether he refers Claire to a more seasoned professional or not. We’ll let you know how that goes in the next update.

Claire’s recovery continues in the context of home life. We’re preparing for my younger sister’s wedding in late September. Autumn, Heidi and Claire are the flower girls. Tiffany and I are biding our time and planning for our first vacation since we’ve been married. After 10 years, we’re finally going to try and get away for a week in December. All this and much more as we bide our time, continuing to wait and hope.

I wish I had more to report. Nevertheless, I thank you for your continued thoughts and support. We don’t know how long it will take, but we continue to be optimistic and thankful that there are so many pulling for Claire and our family. May 30th was Autumn’s ninth birthday and marked one year since the accident. We’ve been strengthened since then from the service and love of family and friends. Thank you.

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