Saturday, September 18: Update

This week was all over the map. Some good, a lot challenging. We felt we were making small gains in the sleep department; this week was another set back. We wish we could pinpoint a single cause. We can’t. We suspected it was the reduced Chlonozapam dose. We’re not as confident it was the culprit now. What we do know is that we’ve spent the last four nights making slight changes to Claire’s sleeping practices, hoping that one will work and Claire will again sleep soundly through the night. At 2:30 AM last night we think we discovered a method that will work. We’re rolling it out in earnest tonight and , fingers crossed, we hope it gets Claire the sleep she needs.

Thursday’s therapy session went well and we were sent home with a goody bag. Claire’s long-awaited custom boots were inside. We don’t have to use our hybrid hiking boot-splint boot solution anymore! The custom boots work like a charm: no chaffing or skin breakdown and they keep her feet in a natural position. While her left foot has improved the most and falls to a natural position most of the time, her right foot still breaks in slightly. These boots will help alleviate the stress on her foot and lateral calf muscles. We’re very happy to finally have them.

Claire continues to improve her neck strength and is holding her head up at more aggressive angles and for longer time periods. We do a number of exercises on the large fitness ball. Her focus and determination are apparent and reflected in the degree of fatigue she shows when she gets a break. We are very proud of her work ethic and spirit.

Autumn and Heidi made cookies with Nana today. Autumn used the cookie project to cap off her earlier efforts. Autumn has decided that her favorite actress is Claire Danes. Autumn drafted, edited and finalized a fan letter for Ms. Danes today. Autumn hit on a number of points, however, her most potent inquiries were about Ms. Danes’ marital and education status. I am tasked with finding the correct address to which to send the letter. I’ll make it tomorrow’s project. My reward will be cookies.

Aside from contacting celebrities, baking cookies and exercising Claire, it’s been a relatively uneventful weekend. We hope your weekend is bringing you needed rest and relaxation. Thank you as always for your support. Sleep well!

26 thoughts on “Saturday, September 18: Update”

  1. Claire is looking very focused here. There’s a different look in her eyes. It’s so good to read about her progress. She’s very blessed to have parents who will devote themselves to her improvement. I know you must be very tired. One day at a time is all you have to get through.

    Praying for healing and strength and many blessings.

  2. So thankful for the boots. It is a shame that things like that tKe so long arrive.

    I’m praying for a good nights sleep tonight. I’m sure you need it as much as Claire. I’ll be sure to pray prior to bed as well as thoughout the night as I tend to wake up periodically.

    I enjoyed the pics of the girls.

  3. Thanks for the picture updates, love seeing the progress that is coming along. Continue to uplift Claire to receive full recovery. May you all feel God’s Peace and Assurance

  4. Claire looks so alert in the pictures! It is so good to see! I hope the girls had fun making cookies, some of my best memories are making cookies with my grandma. I hope Claire’s sleep pattern improves soon so you all can get your rest. I continue to keep you all in my thoughts and prayers.

  5. Hi, Tyler and Tiffany

    I am so glad to see the girls in these beautiful pictures! You all are continuously in my prayers. . .

    Ps: Tiff, did you have your massage this weekend? I hope so:))

  6. Thanks for the update and the pix–what beautiful blue eyes she has! You’ve commented often on how much Claire has always hated to have her hair combed, both before and after the accident, but in this picture she seems very calm about the whole thing. Is this a change? So glad the boots arrived, and expect they’ll do good things for her feet. What wonderful concentration Autumn and Heidi are putting into making cookies! Yummy. Prayers for a good night’s sleep for all of you. It makes everything so much better. Love to all, Dodie

  7. Beautiful famiy and touching memories being made…how nice! “One day at a time” is one we hear a lot. One I like is, “Slowly me go further”. It’s meaningful!

    Acceptance is so hard when your entire life takes turns and twists like a rollercoaster, but it seems your family has accepted the hand you’ve been dealt and try to focus on whet parents do…parenting the best you can! Little Claire has really shown a lot of gains in a short period of time and it’s the hard work you’ve all challenged her with…and the effort you’ve put forth.

    My prayer for your family is that your strength continues to grow in each of you…especially in the caregivers as that’s who needs it the most!

  8. You guys are a beautiful, beautiful family. I love that your talents in writing and photography capture the essence. Have a wonderful day.

  9. Just want to say how proud I am of you guys. The length and the unknown make this challenge especially difficult. I know you are weary, but I also know that you won’t quit. You both are excellent parents. I am also glad that your mom is back to help share the load. You know I wish we were closer, but I think and pray for you often.
    Love you much!
    PS. I miss the girls. You really are blessed to have them all the time. 😉

  10. This is the fan mail address for Claire Danes:

    Claire Danes
    Signpost Management
    205 South Beverly Drive
    Suite 208
    Beverly Hills, CA 90212

  11. Thanks for sharing the pictures of the girls. Claire is looking more alert and vibrant. 🙂 So happy she got the new boots and hoping that sleep comes easily tonight.

    Good luck getting those cookies!

  12. Thank you for sharing the pictures of your girls. Claire certainly is looking more alert! Hope this week brings better sleep for everyone!!

  13. Bravo to you and your family for your warrior spirits. I think of you often and continue to pray for Claire’s recovery. I admire you all for your courage and faith and for continuing to move forward, knowing that anything wonderful is possible. Say ‘hi’ to Susie.

  14. Tyler, I know you came in to our office (dentist) the other day and I really wanted to say hello. Unfortunately I was called away with some other tasks and was unable to break away. As always, thank you for taking the time to update Claire’s Journal. I eagerly await the posts.

  15. What a beautiful family. Each one of you remains in my daily prayers. Thank you for the updates with the wonderful pictures. Your blog provides a service in gathering so many together in prayer. Thank you for the effort and time in sharing. We are celebrating every progress. We are sending support for each challenge. Many blessings.

  16. I love the pictures! It is such a great way for all of us to get to know your family, when we don’t really “know” ya’ll. Still praying. I can’t imagine being up at night…for ya’ll or for Claire. Rest is so important and so I will be praying that you get more. Thanks for the update. Oh and I LOVE the boots.

  17. Dear Miss Claire-

    I have followed your post since day one, and find you and your family’s strength and courage inspiring. I know that God has a purpose for all of your suffering, as hard as all of this is.
    Today I noticed something in the pictures your daddy posted…something has changed in your eyes-they are brighter, and more alert, even if not looking straight on. It’s as if I can see your fighting spirit. You are going to wake up completely, I just feel it!! We are praying for you and your family everyday! Keep up the hard work. You have many people pulling for you!!
    Colleen Esterday
    Rochelle, IL

  18. Great pics of all the girls! What kind of cookies?
    Care to the caregivers; hugs, love, anmd prayers to all;
    Susan D.

  19. Your writing truly is amazing….it’s not just a simple stating of the facts…and I can’t put my finger on it. But it is beautiful prose, showing an amazing family coming together for its youngest, most vulnerable member. What a lovely family you have. I am so sorry that life as you knew it was shattered on that awful day in May. BUT you have continuted to show unbelievable grace, fortitude, love, strength, determination that is awe-inspiring! And I pray for continuted improvement daily! It is true that Claire looks so much more alert and I know it is in no small measure directly related to the love that surrounds her every minute of every day! Keep up the good fight!

  20. Fantastic blog! I actually love how it is easy on my eyes as well as the information are well written. I am wondering how I can be notified whenever a new post has been made. I have subscribed to your rss feed which should do the trick! Have a nice day!

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