Thursday, July 22: Update

Claire resumed her rehab schedule today following yesterday’s recovery break. We were told to expect the phenol injections to take two to three days before effects would take hold and the Botox three to five. I noticed substantial differences this morning when Claire woke up for her first diaper change. Claire’s therapists were equally excited when they started working with her: there is a noticeable improvement already in Claire’s muscle rigidity. We are looking forward to seeing how improved she is after the treatment has taken full effect.

The improvement allowed Claire to complete her sessions in a much more relaxed state. Lori, Claire’s occupational therapist, still had to battle with Claire’s surly attitude in the early morning (an early morning for Claire is anything before 11:00 AM). Despite the fact that Claire is not a morning person, Lori was able to flex Claire’s wrists and arms farther than before and with relative ease. Mary, Claire’s physical therapist, drew the long straw and got to work with Claire while she was alert and calm. Claire was our new stretchy, Gumby toy today and we enjoyed seeing just how much further she could bend. She did a great a job.

Claire’s final session today was with Susan, the neuropsychologist. I got to administer Claire’s Rappaport test today and she scored a 1.0. We will continue to give her the test after discharge to track her progress and help inform her therapy efforts. Claire did not cooperate for the vision portion today, refusing to open her eyes. For some reason she didn’t like the idea of lights being shined in her eyes. Go figure.

The rest of the day was quiet. We continued to make plans for going home and spent time together where we could. Tiffany and I started making our way through a six part series on the history of comedy in America. Claire joined us for one of the episodes. She seemed to like it.

Thank you for your support and enjoy the end of your work week!

39 thoughts on “Thursday, July 22: Update”

  1. A picture is worth a thousand words! Todays pictures are priceless and so precious. Dear Claire, Keep up the good work….Our thoughts and prayers. Barb and Frank

  2. She looks great!! I am so happy to hear she is on her recovery road! She seems to get stronger and make substantial improvements almost everyday!! Noah Abigale and I pray everynight for Claire!! With all of the prayers going up from all over the country it seems we have gotten his attention! Stay strong you two!! Hugs and Prayers!!

  3. That last picture is absolutely beautiful. It speaks volumes and is full of hope. Good luck as you begin the next stage along this journey. My thoughts and prayers are with you all.

  4. i am with claire – anything before 11 is just too early in the AM. 😉 i have been so happy to read the amazing progress she has made this week – joyful.

  5. Claire is doing amazing things and I know you are thrilled with her progress over the last couple of weeks. God is healing her slowly but surely, not at an easy price for you I know, but nevertheless He is healing her. Thank you Lord for being faithful to those who love you!!

  6. LOVE that last photo. Gorgeous.

    So thrilled with Claire’s unexpectedly rapid response to her phenol and botox treatments! Thanking God with you for every good gift.

    History of comedy sounds like a nice diversion. Enjoy. 🙂


  7. Thank you so much for sharing Claire’s progress. The pictures have been especially touching, and I have been blessed by all you have shared. I am a special ed teacher, and I have been so very touched to see how involved your family has been with Claire’s therapy and recovery. She is very blessed to have parents like you both, and to have such an extended support system. I know you are preparing the equipment and plans for when Claire gets to go home. If the hospital doesn’t give you ideas or suggestions for helping with the CVI, I would be happy to help out or to get you in touch with the VI specialist for your school district. Mary Ellen has my contact info if I can help in any way.

  8. the last picture brought tears to my eyes. she’s come so far in a few weeks… really. i know the journey seems tremendously long… take courage. there are legions praying, interceding on your behalf.
    good job, claire. know you’ll love being at home again.

  9. Look at that beautiful Claire! She is doing so great! And you continue to be amazing parents. God is working through you so magically! Prayers, prayers and more prayers for your family. Your daughters are so blessed to have you as parents!!
    Colleen Taricani

  10. What a sweet photo with her mommy:) so beautiful! I love reading about all these POSITIVE updates and am looking fwd to several more!

  11. Looks like if Claire keeps up at this pace we all might be getting to celebrate with the big broohaha much sooner then expected!! I can’t wait to bring the balloons!!! You keep it up little girl; you are just an awesome fighter!! You also are such a lucky girl to have wonderful parents and sisters to show you how to face tough things head on; you all are just downright inspiring!!! Prayers and positive vibes being sent your way.

  12. Such beautiful pictures of her today. Thankful for the forward steps and praying for many many more. We love y’all.

  13. Glad injections already working.
    Can relate to that eye exam stuff [ lost all vision in one eye after brain surgery, so med students and eye docs love to examine my eyes ] – gets old fast!
    And I am a [ theoretically, anyway ] ‘mature’, ‘rational’, adult!!
    Care to the caregivers; hugs, love, and prayers to all
    Susan D.

  14. These are the first pictures i’ve noticed where her mouth isn’t opened…she looks so good! If I didn’t know her circumstances, I would have no idea by looking at the pictures that she is going through what she is going through.

  15. Beautiful pictures – Claire is doing so well! She just seems so much more relaxed and calm – in her facial expressions especially.
    She’s on her way back…

  16. Claire looks fantastic in these pictures! I don’t even know what to look for…and she looks so relaxed and comfy to me 🙂 Yay!

  17. Hi,
    Its so exciting to look that Claire is doing such a good work!!! I, Pablo and Diego, are willing to go and visit her as soon she is back home. Hope we can help!!! Have a great weekend.

  18. Claire is obviously improving at a steady pace, you can see it in the pictures. God is at work in her body, and He will continue until she is back to where she began. To Him be the glory!

  19. I wait with eager anticipation for each update. I laugh with you and cry with you. Your update today afforded me those wonderful happy tears. The photo of Tiffany and Claire is so beautiful. It looks like, even if just for a moment, all was right in the world. I know your blog is more of a cathartic outlet for you both, but you will never know how many are touched and changed by you. We all love and cheer you all on to your next step.

  20. Great pictures today and yesterday! Claire looks GREAT!! It is neat to be able to “see” progress. She has come a long way. You all have. The picture for Tiffany and Claire is especially precious. They both look tired, but more beautiful that ever. I am so proud of you all.

  21. Beautiful pictures! I’m so glad to hear that you’re seeing results already from the procedures. Claire looks calm and so sweet in that first photo.
    Many prayers still being spoken in your name as you get ready to take this recovery journey home.

  22. Like everyone else who’s commented today, I think the photos are beyond remarkable! Both of them. They say so very much. And, without a doubt, the one of Claire and Tiffany is priceless. Your reports of Claire’s progress with the shots and therapy prove just how very far she’s come in nearly eight weeks. I still believe that the strength and love you both transmit to Claire, along with the adorable, much-needed ministrations from Autumn and Heidi, are what’s making all the difference. Well, along with God’s help, of course! Somehow, Claire knows all of you are fighting for her, and she’s showing she can do the same. Big-time. We’re still with you and eagerly await your going home.

  23. Glad to hear she’s having positive results from the injections. Will continue to pray as you prepare to head home. Go Claire!

  24. Love the pic of Claire and her mommy!!! So precious! Keeping Claire and family in my prayers…….

    Fullerton, Ca

  25. Wow what a wonderful picture!!!! She looks so alert. Yay Claire!! We are praying and rooting for you all!!!!!!!!!

  26. Watching COMEDY w Claire might be the 2 for 1 special: stresssssss reliever AND releasing all those beautiful brain chemicals!:)))))
    Prayers up for Gunny girl;)

  27. What a beautiful picture of Tiffany and Claire. Claire looks so much like her Mom! Praise God for medical technology!

  28. It’s worth repeating how wonderful those pictures are! I agree–frame the last one, especially. It’s just gorgeous. So great to see Claire’s face relaxed. Glad the injections are working before they were supposed to! I sent out a new update yesterday to the people and prayer lists I’m keeping in touch with, and I don’t even know how many others those people are sending them on to. And the same is true for all the others reading this blog, and many who know you and about you. You have no way of even knowing how many are praying for all of you. I hope those prayers buoy you up and help give you strength. They are, I am confident, part of why Claire is doing so well, and will continue to do so well. That, and having one of the greatest sets of parents, and sisters, in the whole world. Love, prayers, blessings, and hugs, Dodie

  29. Claire looks so wonderful day. She is making great progress. Prayers and thoughts for all of you.

  30. You can totally see the agility in her arms and legs and a look of peace on her face. That last picture is priceless! Hugs from AZ.

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