Thursday, August 5: Update

A new win streak has started. Claire has broken the one day on, one day off pattern she’d started on Sunday with emergency services. It’s a small victory, but we’ll take it. We kept Claire’s feeds to much smaller doses the past two days and we haven’t had any reflux episodes. We are still on edge whenever she makes an odd noise while feeding, but our anxiety has been unfounded for the past two days. I’ll gladly continue the anxiety as long as this continues to be the result: it’s an exchange I will make.

We also continued our new routine of keeping Claire with us while she falls asleep. She relaxed in Autumn’s arms instead of Tiffany’s tonight. Autumn held Claire for a solid 30 minutes before politely asking, “Can you hold Claire now? I can’t feel my leg.” In addition to the pin pricks that comes with a sleeping appendage, Claire’s diaper had printed itself on Autumn’s leg leaving red creases and wrinkles. She’s a good big sister, and she wore her discomfort with honor.

Claire began her day at therapy with her first return to the pool since inpatient therapy. She enjoyed the water, though she still protests when her soaking time is interrupted with actual therapy work. Yet she perseveres.

We met with the orthotics group today to measure her feet range of motion. While we have seen improvement in her feet flexibility, we are still concerned about losing range as she continues to point her toes. The therapists started the first stage of serial casting today to make sure we protect her abilities. The casting involved the most strenuous stretch to date for Claire’s feet. In order to build the boots, the therapists have to get Claire’s feet as close to neutral as possible. Claire’s right foot has retained most, if not all of her range. Claire’s left foot, however, is tighter and has toned a little more. It’s not much, but it could deteriorate farther if not treated aggressively. When we started her evening stretch tonight, Claire expressed some cries of pain on her left foot. We think it’s a little sore from today’s casting session. So we took a break this evening and will check tomorrow to see how her foot feels. Overall, we’re glad she is getting the custom formed boots and believe they will help her maintain her range.

I’ve got some projects on the weekend’s docket. We received the standing frame yesterday and while it is used, it is in good working order. The cosmetic issues are easily remedied. I made an enjoyable trip to Home Depot today to get some of the repair materials and I’m all set for the work this weekend. I think I’ll just lay out my new tools and equipment in a row and admire them for a while before actual work begins. They’re just so nice to look at. But that’s not all the shopping I did today. I followed up the Home Depot visit with a trek to Fry’s to get an adapter for Claire’s new headphone set. I wasn’t satisfied with off-the-shelf headphones, so I ordered a studio quality set earlier this week. They’re pretty awesome. Claire likes them too.

Every day I’m reminded of how many people are pulling for Claire and I continue to be humbled. Thank you for your support and hopes. Enjoy your Friday!

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43 thoughts on “Thursday, August 5: Update”

  1. Glad to hear it was a good day! Here’s to many more to come!!! Sending positive vibes your way——>

  2. Yay! So glad to hear Claire bear is back in the pool. I miss our pool time together and her whole team at OCH misses her terribly and we’re checking in on her every day on the blog! Cant wait until her next check-up at OCH. And loving the photos as always- keep them coming Tyler!

    1. You are so sweet Brita! Thanks for following along with us. We miss you guys a lot too… but have to say, love being home. 🙂 I hope you are doing well! See you in a few weeks.

  3. Another stranger praying for you guys, but I felt compelled to send another quick note to you to say that you guys are awesome parents. If I were in your shoes about now I would start to get really lazy with treatments, therapy, the blog, equipment, etc. I know myself. I wouldn’t stay on top of that stuff, even for my kid’s sake, as much as you guys do. So here’s a pat on the back. You’re doing great. And I’m still praying for you guys and for Claire.

  4. Such a sweet picture. Continuing in our prayers for Claire and all of you. Speaking for myself here but please don’t feel obligated to the blog. We love knowing how to pray for you and I’m hoping it is therapeutic in some fashion but please don’t add to your stress or lack of sleep. We love y’all!

  5. What a sweet angel you have and she is very blessed to have such great parents and amazing sisters to love and support her. We will continue to pray for Claire and your entire family. God is really showing himself through all of you! Sweet Dreams precious Claire!

  6. You and Tiffany are doing an amazing job. . . and big sister Autumn too. I pray for all of you every single day.

  7. She looks like shes lovin it. You and Tiffany and the girlies are a great team! I am so happy and thankful to God for this good day. I am also excited for Claire to use the standing board knowing it will help her feet so much. Good things are happening and so much more to come for Claire!!

  8. PS: I think you should let the ‘big girls’ decorate Claire’s equipment [ when practical ] with her fav colors, fav flower or animal, hearts, etc.
    Just an idea.
    Susan D.

  9. Amber is such a good big sister to help hold Claire into sleep. And Claire looks so peaceful in those headphones! Enjoy tinkering with your new tools and equipment as you get the standing frame ready for use, Tyler. It can’t be said too many times what a wonderful family God has gblessed this little girl with, to bring her back to health and wholeness. You are super. May all the prayers coming your way undergird you in the time to come. I continue prayers for you all, and for the rest of the Claire Team. Dodie

  10. I look forward to the Claire updates everyday. I continue to pray for her as God brings her to mind. Thankful for all the miracles so far and still praying for more! I continue to appreciate your raw transparency. Thank you for allowing us all to see a glimpse of your journey. May God’s mercies continue to be fresh each morning!

  11. This is the first picture I have noticed where Claire looks like Tiffany. It must be the ear phones. 🙂

  12. Yay for a good day. So glad to hear it. You’ll be amazed how much the standing frame improves things for your whole family once Claire gets used to it – the girls can talk to her and engage with her in a whole new way. I love that pic – those are some big headphones so I’m sure they’re working magic for Claire.

  13. Oh – and did you guys get to bring home/borrow/get a tumbleform? It’s a great feeding seat – easily repositioned for sleeping as well.
    Just a thought. We still use ours daily.

  14. She is so beautiful, she looks just like an angel. Thank you for keeping us updated. I think of your family everyday, may the miracles continue!!

  15. What a sweet big sister Autumn is! And I love the peaceful look of Claire in the headphones.

    I continue to pray over your journey. There are indeed many pulling for y’all!

  16. We are so grateful for your daily updates. They are so inspiring and you are a blessed and talented writer. Have you been told that you should write a book??? You write a beautiful, heartfelt story and I look forward to reading it each night. You draw us in, and it’s an honor to be part of the journey with you. And it’s an honor and privilege to pray for Claire and the family daily. Thanks for allowing us in. Grateful.

  17. “A new win streak has started.” Father, I stand in agreement with this statement, that a new season is beginning for precious Claire and her family in which “small, ” daily victories not only abound, but begin to turn into HUMONGOUS victories! Thank you for this statement of faith!

  18. Just wanted to say hello, we are praying daily for Claire and your family and will continue to do so. Tyler, I could almost hear a “Tim Taylor” grunt as you were talking about your new tools! We appreciate you taking the time to do updates about Claire. We check in every day. Love and miss you all.
    Uncle Andy, Aunt Susan, and boys

  19. I love the tone in your post! I love how Autumn and Heidi take such care of their sister. There is nothing stronger than family love! I hope Claire has continued luck with her feedings. My prayers continue for you all!

  20. Glad to hear the good news, and look forward to continued progress and improvements. Your family has been through a rough ordeal, and it is not over yet, but God is FAITHFUL!

  21. not an everyday commenter, but an everyday pray-er. praying for all of you as you continue to adjust to your new life. so sweet to hear of autumn’s care for claire.
    thank you for taking the time to document your day. your journey is such an encouragement to others and a reminder for me that every day has blessings… as you are oftentimes sharing the blessings of your day.
    may God bless you for your positive, awesome attitude.

  22. The headphones gave me such a chuckle (and it’s brilliant). That picture of Claire is priceless; she looks so at peace, but even more so. I know the song Blackbird by the Beatles is more about the Civil Rights Movement – but have you played that song for her? There’s just something so soothing about it. I used to sing it to my girls when they were little babies. Have a wonderful weekend.

  23. You guys are doing an excellent job with all that is going on. We will continue to keep Claire and your family in our prayers.

  24. Way to go Claire! Small steps make the recovery process!! Keep up the good work with the feeds. Way to persevere in the pool during therapy too. Hard work will pay off.
    I have just started to follow your story due to a co-worker’s son recent near drowning. I saw your information on a link from their website.
    You will all be an inspiration to us.

    Thanks

  25. Yes, we are ALL pulling for Claire! I anxiously await updates on this beautiful child and wish every day for her continued baby steps towards progress! You have infinite patience and clearly she will blossom as much as her little body is able!

  26. Love this update! I especially smiled over the mental image of you lining up your new tools and admiring them. You’re a really good writer, Tyler. 🙂

    Great photo of Claire. Jacob is sitting across the table from me right now with headphones on, listening to Keith Moore poetry put to music by Phil Keaggy. Music has a mysterious power over the brain. You probably already know this, but Mozart is supposed to be especially great for brain development.

    Preserve those sweet little feet. I expect she’ll skip up to you and thank you some day.

    Much love and prayer as always,
    Jeanne

  27. Tyler, you and Tiffany go with me through my day. My attitude becomes more positive when I remember your joy. My demeanor is grateful when I consider your courage. My love is greater when I think of your love for your family. God has made you and inspiration and I am amazed at what He can do in suffering. Thank you for sharing.

  28. Claire is just the sweetest most angelic little girl I have ever seen…..I just want to hug her!

    I absolutely love that her sweet sister Autumn held her to fall asleep…so sweet.

    Look forward to seeing more pictures and reading more stories about your daily life that make me appreciate the small things in life so much more. Thank you for sharing the hardest journey in your life with the world…she is too special to keep all to yourselves!

  29. Hi, Again, Tyler and Tiffany:

    We’re so glad to hear that the feeding times have been more successful, with the reduced amount in the feeds. We pray all continues to go well there.

    Please tell Claire that we think she looks just “Awesome” wearing her new
    headphones set!

    Blessings, Ken & Jana Kirkpatrick
    Jesup, GA 31545

  30. What an eventful day! Claire’s making strides n u guys are being aggressive w her therapy, doing a beautiful reacting to needs, balancing those spinning plates:)

    Prayers up for God’s strength, grace….:))

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