Wednesday, September 22: Update

The first signs of Fall are beginning to show. Temperatures have had a sustainable drop in north Texas (mid-80s!) and the first leaves are starting to change. The new season heralds the return of some family members this week. I picked up my sister, Bryanna, today and we’re picking up Tiffany’s parents tonight. The house is full once more!

Bryanna’s arrival today was a surprise for half the girls in the house. Autumn and Heidi didn’t know she was coming. Neither did my mom. It’s been a surprise two weeks in the making. It worked. It took a solid 20 seconds for my mom to process that Bryanna was standing in front of her when we walked through the door. She was stunned. The waterworks soon followed as my mom played see-saw with her emotions. Giggling and smiles was intermixed with crying and tears. It reminded me of when we brought Autumn home: like Autumn, my mom is so overcome with emotion she would rather escape everyone’s view and gather herself before addressing the situation. It’s fun to watch. And funny.

While my mom and Bryanna caught up, Claire observed. We’re seeing this behavior with greater frequency now. Claire appears to pay closer attention to the events around her now. When we enter into her field of vision, her eyes regularly track to our faces. They focus and hold the subject for longer periods. If we speak to her, she’ll watch our faces with greater interest. It’s very minor and slight, however, we notice the difference now compared to a few weeks ago.

Cutting Claire’s Chlonozapam dose in half at nights has also seemed to normalize. We’re seeing increased movement with her right leg now too. The Chlonozapam acts as an anti-anxiety medication: it was prescribed when the Atavan and Methadone weren’t doing an adequate job regulating her neural storming. While it helped with her posturing when she needed it, it’s not as imperative that we use it now.Ā  We think it was contributing to the limited extremity usage on her right side as well. Now that it is a lower dose, we’ve seen a significant increase of muscle use on her right side. This set off a new set of challenges, however, we think we’ve got solutions for those now too.

We seen the biggest help come from the horse therapy sessions. We’re very happy that we’re on a twice a week schedule now. Claire got to test drive her new helmet on Monday. It was a little heavier than the helmet she used before, but she flexed her neck muscles and held her head firm. Muscle fatigue started to set in near the end of the session, a sign of how hard she’d been working. She slept the whole way home, just to make sure we were convinced of her effort.

We are grateful for your words of encouragement and support. We are looking forward to more positive updates and news. Enjoy the rest of your week!

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32 thoughts on “Wednesday, September 22: Update”

  1. It is so great to hear Claire News!! I’m very happy to hear that she is continuing with her baby steps!! We have certainly not given up our prayers for Claire! She continues to stay in our minds and hearts and we include her everynight in our prayers. Enjoy your company! Hugs and Prayers! Keep fighting Sweet Girl!

  2. Thanks for all the news! Glad the horse therapy is going so well, and that Claire is tracking people better. Fun for all to have a full house for a while. Continuing prayers for small (and big!) improvement and moderating temperatures. Dodie

  3. Love to hear all the news on Claire and can totally see Susie’s expressions! Praying for you all!! Happy you have a full house again!!!

  4. I am so happy Claire is doing so well, everyone at the school I teach at ask about her all the time. She is the the thoughts and prayers of so many. I am happy that your family is doing so well. If you need anything let me know! Have a Great Week!!

    Kristen

  5. This is wonderful news about Claire. We have been traveling and offline for so long that we didn’t even know that Claire is home now.

    We are so happy for you that you have Claire back home with you. Wonderful, wonderful news!

    Blessings,

    Ken & Jana Kirkpatrick
    216 Horse Ranch Road
    Jesup, GA 31545

  6. Claire sounds like she’s really making improvements. I’m so happy for you! Have a great time with your mom and sister. Let them help you and take advantage of them being there. That’s what family is for. šŸ™‚

  7. One of the Sisters in my community wrote to me yesterday and said that she was offering a special prayer for Claire. I have kept them updated with the hopeful news and they are very aware of your little girl’s progress. So, you continue to have about 350 pray-ers for her continued improvement. Sr. Dorothy

  8. This is a very encouraging post!! We are glad that Claire is making such good progress!! Enjoy
    the more pleasant weather and your company! Keep up the great work Claire!!!

  9. Yea Claire!! I love a good positive update. I can’t imagine how long those beautiful eyes have wanted to follow the voices that she knows the best! Your family is such an incredible example of strength and love. Still lifting you guys up and praying for patience and endurance while waiting on these small steps that are changing Claire’s life!

  10. Hi, see this video:

    this is a video in portuguese but pay close attention to the person wearing a black t-shirt in the vocals… He (Marcus Menna), on july of 2004, was 20+ minutes without breathing due a lipo surgery failure and was 62 days in a coma (some very deep coma) with severe brain damage. Doctors said he would never make it. He is a prove of miracles that only the Lord can make it happen. This video was taken on May/2010.
    I wish all the best for your family.

  11. Awesome update! I am so glad you have a full house of support once more. I was telling my class about Claire today and how hard you are all working with Claire everyday. I continue to keep you all in my thoughts and prayers! Enjoy your full house!

  12. Thanks for the Claire update. She is a true precious child with a family who obviously loves her. I so enjoy hearing about her and your little family. Peace be to you and prayers for your entire family.

  13. I have been meaning to reply in the last few weeks that even though I know you guys only through this connection, I have noticed so much progress, so many steps forward on your path. I see this in he pictures you post. They are kind of a paint-by-number compilation that I’m sure will result a beautiful painting of the future. I no longer see vacancy in Claire’s eyes; I now see determination, promise, and maybe a bit of irritation in all she is accomplishing. Again, like many, I do not really know you, but I so look forward to that future picture taken toward the end of this long road you guys are so ably travelling.

    Dave – Tustin, CA

  14. Hi Tyler, Tiffany and girls,
    I read your posts almost daily and I continue to be excited at the news. I keep Claire in my prayers and will often update our nurses her at Medical City when there are changes. We think of you often and will keep your family in our prayers.
    Chaplain Jim

  15. Happy First Day of Autumn to your precious family. Glad to hear you’re enjoying reunion with family. A house full of loved ones is the best. Also, great to hear how the horse therapy is going and what a trooper Claire is. We continue to pray for each of you and ask God to allow continuing improvements and strength and hope for each day.

  16. Praise the Lord! It is so good to hear about Claire and your family. Will continue in pray for you all.
    As a cowgirl myself I am thrilled that the horse therapy is helping!!!

  17. Thinking of you. Praying for you. So thankful for your amazing family and excited about the horse therapy results. God is in all the details. May you rest in the assurance that He is near and is working out His plans, day by day, with perfect faithfulness.

    Love,
    Jeanne

  18. I love the fall in New England! The leaves are so beautiful right now and the air is so crisp. Glad to hear the news on the progress and love the little flowers on her ‘shoes’. Thinking of you in CT!!

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