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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32 thoughts on “Tuesday, August 9 Update”

  1. So nice to read your encouraging notes, Tyler and Tiffany. Know you’re feeling stressed but hopeful, so please keep up the positive thinking! I think of all of you often and am happy to hear about every little bit of progress. Have a great time at your sister’s wedding next month — I’m sure all three precious girls will be adorable bridesmaids! And do enjoy your long-awaited vacation in December. Please continue to keep in touch.

  2. Thank you for keeping us updated on Claire and the rest of your family. She is continually on my mind and heart. May the Lord continue to give you hope and strength! The progress is so encouraging to hear!!

  3. A vacation sound bittersweet. The update sounds wonderful – Claire sounds like she’s doing wonderful. What a great family you all are. I’ll be glad when the weather gets cooler, too!

    Donna Dixon

  4. I just wanted to say that the Lord used a chiropractor to heal me of Hydrocephalus, before there was any medical treatment for it. The chiropractor adjusted my neck in such a way that it caused my inner cranial fluid to circulate as it should, instead of continuing to build up on the brain. I pray that the chiropractor Claire will see will have the Lord working through his hands and that he will be able to help in healing Claire.

    Praying for Claires’ healing,

    Ken & Jana Kirkpatrick
    Jesup, GA 31545

  5. It was great to hear from you and how Clair is doing. We are pleased to know things are still moving forward for her. She is in our prayers every day along with your whole family. We are happy to hear you are planning some time away together it will do you both good and give you a new fresh outlook on things when you get home again.

    Cousin,
    Janice and Eddie Healy
    Aloha, Oregon

  6. So wonderful to hear from you and hear the good news!
    Situations in life sometimes remind me of a childhood game “mother may I’. Some times you can take giant steps and sometimes smaller ones…but all forward movement is a wonderful thing! We rejoice with you in the forward movement Claire is making!
    You remain in our thoughts and prayers!
    Love,
    Paul and Carolyn

  7. Thank you so much for the update. I’m sure it is mentally exhausting. I still think of Claire and pray for both her and your family. Please enjoy your time away together in December!
    Peace to you all,
    Cheryl LaClair

  8. You might look into theraputic listening therapy in combination with OT/PT. We started it a month ago and are seeing compeling results helping with our son’s pain and sensory issues. It is an additional therapy but is fairly easy to incorporate into the day. I’m Natalie Ried’s cousin, feel free to get in contact through her. We’ve been praying for Claire and your family since last year so I feel compelled to offer anything I come across!

  9. Thank you for your willingness to share your lives with us. It is a great honor and privilege to pray for you, your family and Claire. I have two more friends who have suffered a TBI and the road back is long and like you’ve said before, hardly a sprint and even more arduous than a marathon.
    You always right with so much optimism and I hear the rhythm of family life as you continue to adjust to your new “normal.”
    Hopefully, knowing there are many praying for you is a great encouragement.
    Press on…

  10. Tyler and Tiffany,
    You’ve been on my mind and heart a lot lately, and I’ve been wondering how things are going with all of you. So thanks for your update. It seems to me you do have a lot to report, what with Claire’s turning herself over on occasion, and her startle reflex. Hope that she and Tiffany can have some more good one-on-one to provide the laughs and smiles all of you need to keep going. Enjoy Bryana and Brian’s wedding, and your vacation together. Love and prayers, Dodie

  11. That was a great report! It seems like she is making great strides and shows continued signs toward much more to hope for. Thank you for your updates. I hope we will get to see wedding pictures of the 3 beautiful bridesmaids. (friend of Tim & Susie)

  12. Awesome news. I was just wondering last night what was going on with little Claire. I am a stranger to you but I pray for Claire’s healing and that your family will continue to be strengthened.

  13. Thanks so much for updating us on Claire and your family. It’s great to hear your optimism and the changes and improvements in Claire. Your strength and courage through this year is amazing. Sweet to hear Claire’s special relationship with Tiffany – nothing can replace that one-on-one of mother and daughter. We’ll continue to pray for you all.

  14. I am so happy to hear that Claire is still progressing. Thank you for keeping me on your mailing list. My thoughts and prayers are with you. I teach LIFE Skills @ Nimitz High School with Kristen Dame; that’s how I know about your family. I wish you peace, and strength, and God’s grace in the months ahead.

  15. I was just thinking that I would love to read an update on Claire about 3 days ago!! How awesome to hear that there is still more progress being made every day! That’s just greatness!!

    Thank you for taking the time to keep us all informed! It is a privileged to pray for your family!

    Dee

  16. So good to “hear” from you guys again! I am happy to read that you are doing well and that Claire continues to improve. Thank God! I am excited for you guys about the upcoming vacation! After 10 years it is much deserved!

  17. It’s AWESOME hearing about Claire’s improvements! She is such a great girl and I’m sure she will keep on improving with all the great love and support from her family and friends. Love to all of you guys 🙂

  18. What a blessing to hear from you! your family is so often in my thoughts! I know that you are participating in a marathon, and I just want to encourage you all to keep on! Thanks for writing!

  19. Oh thank you for the Update, Claire is still in my heart and praying for a full recovery. God’s timing is perfect and Glad that Claire has had some joyous moments towards recovery. Hugs to your family and continue to lift you all up to Jesus who gives comfort and peace.

  20. I appreciate the updates so I can celebrate your progress and pray for Claire’s continued healing. Strength and love to you all.

  21. Thanks so much for the update on little Claire:) I’ll continue to pray for GOD’S grace in your lives, as well Claire’s complete healing:)
    Suzi

  22. I was so happy to read your update. Claire and your beautiful family continue to be in my thoughts and prayers. Blessings to you all.

  23. It’s so beautiful that Claire progresses. She’s so fortunate to hv such amazing parents even with all the bad days thrown in!

  24. Just wanted ya’ll to know that you’re still being prayed for. I hope you are doing well and that Claire is enjoying life.
    Love
    Natalie Grubbs

  25. I have been following Claire’s story from Seattle, WA (friend of Glenn & Ruth Rogers) – today I was inspired to pray anew for continued miracles for Claire… I know what keeping these blogs up is like as I have sister who survived being shot in the head & a father-in-law battling multiple myeloma – and the requests/expectations for updates can be staggering (& sometimes discouraging).
    I just wanted you all to know that I have still been praying for Claire & your family. Blessings this Thanksgiving season.

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