Friday, July 2: Update

Claire’s elbows were cast today. The occupational therapist fitted Claire for some hard plastic elbow splints yesterday and they didn’t work very well: they left red stress marks on her elbows that didn’t go away for several hours. So we moved to plan B. We spent an hour and a half today padding her arms and wrapping them in hot pink casting strips. Her left arm is showing the most tone, so it received the heftiest treatment. She now has hot pink Popeye forearms.

We had to cut the casts off after they set. Claire wasn’t a fan. The saw was noisy and the vibration was odd. She protested despite plugging her ears for her.

We did learn that she didn’t protest as much when we covered her ears. This was valuable information and led to a solution we should have considered sooner. Claire has been having trouble sleeping at night because of the in-and-out nature of the night nurses. She’s sensitive to the slightest noises. Some of the nurses are very good at being quiet. Others are more heavy-handed. The problem is that we never know who we are going to get each night. Because Claire responded so well to having her ears plugged, I ran to Target and got some of the compressible ear plugs. We cut them down to Claire-size and they’ve worked well at calming her down and muffling punctuated sounds. I hope they work tonight.

We were assigned an appointment date next week for Claire to try some pool therapy. It’s a bigger step for Tiffany and me, but we can’t think of a better, more safe opportunity to get Claire in the water again. We also hope the buoyancy and warmth with help calm her further and reduce her muscle tone. The right side of her body is not exhibited much tone; however, the left side continues to challenge us. She hasn’t lost any range of motion and now we’re looking for similar improvements we’ve seen on her right side.

Claire has a more challenged night of sleep last night. She was very lethargic today and struggled to keep her eyes open. The overcast day and afternoon showers contributed to the general malaise in Claire’s room. We hope Claire’s shower tonight will wash away some of the dreary feelings and prep her for a solid night of sleep.

Thank you for your prayers and support. We hope your Independence Day weekend brings some great rest and relaxation with friends and family.

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12 thoughts on “Friday, July 2: Update”

  1. Praying for a great night’s sleep for everyone.
    Soft ear plugs – great idea, Tyler! Overstimulation + lack of sleep = exhaustion for anyone.
    Care to the caregivers; hugs and prayers for everyone.
    Susan Davison

  2. Every day you post it brings up things we have dealt with on Makenzie’s behalf. She had very tight arms. Her fists where always in her chest. We tried many things. She has had botox and phenol injected to help loosen them up. We also used Pedi-Wraps. These worked very well. They are soft and easy to put on. That website is http://www.medi-kid.com/index.php?p=catalog&parent=1&pg=1

    Makenzie still has tight arms but everyday they get a bit better. They are no longer stuck in her chest and she is using them more and more every day!

    We are praying God’s full restoration over Claire and believe God can and will move mountians in Claires life!

  3. Claire…I am right there with you on the cast removal!!! I had a cast when I was 5 and seeing your picture brought back memories and cringes!!!! You scream all you want; sorry Tyler and Tiffany! 😉

    Here’s to a restful night for all of you and continued progress!!! Sending many prayers and thoughts your way!

  4. I am pretty sure that you will never meet most of the prayer warriors that watch for and read your wonderful updates everyday ……….. but you and your family have become so special to us. You put our little, petty, everyday worries into perspective for us and help keep us focused on the important things in life. THANK YOU and may God richly bless you!!

    Joan

  5. Joan Bailey-Loman, you really hit the mark.
    Tyler, Tiffany, Autumn, Heidi and Claire, I am thinking about you and watching your blog every single day. At the same time, I am cherishing every moment I have with my girls while I hold your family so close to my heart. Sending much love your way…

  6. Hope you all get much needed rest, that is my prayer for you all. Tyler and Tiffany, I know right now you might feel like you can’t find the right words to say to Autumn, but is the perfect opportunity to share with her how we live an imperfect world and how we must lean on God for all the struggles that we face daily. We don’t always have an answer to giveand that’s ok.You might be able to share that our plans,our wants and our needs might not be what God has planned for us. We serve a very loving God, a very faithful God and he wants the best for you all. Just like you and Tiffany love the girls how much MORE does your heavenly father love you. I am so excited to see the faithful prayer team that is continously praying daily on your behalf. Thank you for pouring your heart to us and posting your daily blogs, so we can join you miles away in heart, mind and spirit.

    JUST KEEP THE PRAYERS COMING PEOPLE!!!!!

    God’s miracles WILL be seen through our little Claire….
    And we will praise Him through it all of them and see His mighty work….

    You two are amazing parents….God Bless you…..Luv you…

  7. Good Morning and may God keep showing you little things to keep her comfortable so you can take big strides in her recovery! I pray for sunshine to fill her room. May this little girl know the hearts she has touched through your words and sharing. May this Independence Day bring your family new Independence as well over some of the things you have been challenged with. We are not going away and will lift you when you need a rest. Until you post again the prayers will be flowing over your Physicians, Claire, and Your Family.

  8. I heard about Claire through a women’s prayer/devotional email group of which I am a member. I have spent the last couple of hours reading her story from the beginning, and am impressed by some specific things. Your writing shows not only a gift for words, but for remarkable strength. Despite the heartache, you are holding it together for each other and for all of your girls. You are taking time to process information, not just react to it. You have angels all around you – not only in the spiritual, ethereal sense, but also in the present, human sense. Continue to lean on your family and friends. Continue to trust in the Great Physician to lead sweet Claire through this and restore her. I will be praying for you all.

  9. Tyler,
    It was so nice to see you at work this week, I admire your courage to attempt to bring more normalcy in your life. It should however help you forward. Not sure how you can possibly get any clarity in your mind to do strategy, but you can sure secure yourself a career as a writer!!
    You have such a talent and your candor sharing your life and emotions is truly admirable . Claire, Autumn and Heidi are very lucky to have such a courageous, caring and strong dad. It is so encouraging to see all the progress Claire has made..

    My thoughts are with you and your family,
    Barbara

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