Thursday, July 15: Update

The march to discharge day continues and we’re scrambling to get everything we need done. Today we met with a home health agency to discuss a part-time nurse for Claire during the day. This is contingent on another ball we’re juggling: Medicaid approval is the only coverage we’d have for in-home care. Our insurance company excludes pediatric nursing care. We take consolation in the fact that Claire did not need a tracheostomy, and she doesn’t have any long-term pulmonary complications. These two items alone require much more equipment and attention to care in the home. We are blessed that the extent of Claire’s medical care is feeding and medications both of which are administered through her g-tube. The bulk of our time and effort, therefore, will be placed on rehabilitation. It really is a blessing and our hearts ache for families that must deal with additional, more complex treatments when they go home.

Claire receives about an hour of rehab with her therapists each day. We administer the other two and a half hours of rehab she receives each day. She doesn’t like it. But she’s getting better. She is beginning to comply with simple commands on a more frequent basis. When we tell her that she needs to work on calming herself down, she makes the effort. When we ask her to open her eyes, she makes the effort. We are excited about the effort. It doesn’t always produce results we can see, but we see the struggle and we love the struggle.

It is hard to see Claire in pain when we do therapy. But we chalk it up to eating vegetables and doing homework. We’ve always seen our role as parents is to make sure that our girls are fully equipped to contribute and make effective decisions in life. For all parents, we understand that we instruct our kids to do things they don’t want to do because we know what is best for them. Our role has not changed. The challenges have. But we will continue to make Claire do the things that are best for her because we still need to give her the tools that will serve her in later life. Right now those tools include protecting her muscles from working against her. They include protecting her range of motion. They include the therapy she often protests against so strongly.

But we know she also needs breaks. We took some long walks today as a family in the coveted Dallas heat and humidity. We stopped to sit and feel the breeze blow the heavy, sweat inspiring air against our faces. It’s really horrible. While we dislike the heat so much, it calms Claire, and she enjoys the walks. It’s a turning of the tables: we force her to do the therapy, and she forces us on death marches around OCH at 4:00 PM in the afternoon. She knows what she’s doing. I’m wise to her machinations.

The girls spent some of their time outside playing schoolyard hand games. It did all of us good, including Claire, to do frivolous things. Both Tiffany and I feel Claire is developing a distaste for the hospital and enjoys the escapes the walks provide. We don’t blame her and share her sentiments. We are all looking forward to taking Claire home.

Claire was very alert for the rest of the evening and had a look of calm and content on her face. I hadn’t seen that face since before this happened. It made me happy.

Thank you as always for your prayers and hopes. We are forever indebted to you, our friends and family, whether we’ve met you or not.

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43 thoughts on “Thursday, July 15: Update”

  1. Thank you for your daily updates. I read each night to see the advances Claire has made each day. It is true so many of the successes are hard to see, but having watched my little brother go through much of what Claire is doing, I can tell the successes are many!!! We cannot wait to hear you are all home!! Our thoughts and prayers are with all of you.

  2. I just cannot thank you enough for spending the time to write in such detail. I look forward to your daily updates and am so encouraged for you all with the progress that Claire is making. The last picture you posted is just beautiful.
    God bless you all for trusting the Lord so deeply.
    -Prayers from VT!

  3. It is so good to see that Claire is claming down and is more able to respond, both to commands and to her enviorment. It is also good to see her progress. But I also see progress of a different kind. Both of you seem to be progressing toward and accepting of your new, ‘revised’ family structure. That is healthy. The good news is that you are still an intact family. A family of five, changing and adpating to each others needs. Claire has a good home!
    All of you are, of course, in my prayers throughout the day. But my prayers are especially for Autumn and Heidi and the adjustments they are making. It is tough for them also. Children shouldn’t have to make those kinds of adjustments in life, but they must.
    Always, prayers are being said for our Claire!!! It is my personal belief that each prayer said for Claire is aiding in her healing. The prayers of little children count double! šŸ™‚
    I continue to believe in a mighty recovery for Claire. Never underestimate the goodness of our God.
    Love from Dad

  4. Your post brought tears to my eyes. I can’t imagine having to watch your child go through all that Claire has had to endure over the past few months. I was just listening to a Bible study tonight which talked about how God provides what we need when we need it to get through the difficulties that come our way and I truly believe He is giving you and your family just that… the strength you need to make it through each day and to help Claire continue to fight for recovery.

    May God bless your night sleep and the day to come.

  5. I love this post so much! I am so happy to see the progress Claire is making. Thank you, God! We will continue praying from NJ. Thank you for taking the time to update us…especially those of us that you don’t know. You have touched our lives and we will be praying for you guys for as long as we are able. Keep fighting the good fight. You are inspirations!!!

  6. What a sweet angel Claire is and she continues to touch our lives tremendously. My friends and I think you should write a book, Tyler, seriously….your writing is amazing and I look forward to reading your updates with Claire’s progress every evening….there are parts that always make me smile and we continue to pray daily!!!

  7. I praise God for every little step she takes!!! I am still praying for her daily and wait anxiously for your updates. I have a daughter Claire’s age and can’t help thinking how in the world would I respond in your situation. You are wise beyond your years! I can hear faith and hope and love shining through your words. While we should be encouraging YOU, you end up encouraging US.

  8. Oh Claire looks so good! I love the pictures. She looked like she was having fun watching her sisters play. And the final picture is just so sweet šŸ™‚ Thank you for all the posts that you write. I am so rooting for Claire’s recovery, and that you all can be a family under one roof again. God bless you all.

  9. Love the last picture – she looks so comfortable, peaceful, and thoughtful – SERENE.
    { Make a blowup to look at on any ‘bad’ days ].
    Care to the caregivers; love and hugs to all.
    Susan Davison

  10. Love you all! Tears of joy for that last picture of Claire. She’s so beautiful, and I love to see her with some respite, if even for a moment. Talk to you tomorrow…

  11. I have been following your updates since the beginning and am praying for Claire and your family all the time. I was so happy to see the last picture in your post tonight. She truly does look calm and content. Thank you for allowing us to follow in your journey. We will continue to pray that Claire makes a full and complete recovery.

    ā¤

  12. Claire looks calm, and I am sure she is happy to be with her sisters. I hope she comes home soon to her home. I am praying for her and all of you every day.
    Thank you for all the updates.

  13. I am one of the people who regularly read your updates on Claire. I first learned about Claire and your family right after the accident from a friend at church. Please know that I pray for Claire every day. Thank you so much for your updates and photos. I know that you have a long road ahead for your family. I read a bible verse today and wanted to share it with you. “Come to me all you who labor and are burdened and I will give you rest.” Matthew 11:28 I wish you and Claire a good rest tonight.

  14. just a little note,
    thinking and praying for you guys
    love reading the daily posts
    Claire YOU ARE SO BEAUTIFUL
    Tyler and Tiffany you guys are enduring strength and hope for your daughter
    May you continue to be Blessed!!’
    May you both have a restful night and regain your energy
    In Him
    Christina

  15. That last picture brings joy to my heart. Can’t wait to see you all in about a WEEK!!! Praise God for every new day with Claire and for each little joy and step towards full recovery. Much much love and prayers.

    PS. Tiff, your hair is SO LONG! You are beautiful, my friend.

  16. Just wanted to share I have been following Claire since about 2 weeks after the posts began. My littl cousin is a friend of Claires. I want you to know how blessed I feel each evening after your journals post. I have a heart for children and Claire is in my heart. I pray for her and your family each day. God is in the business of miracles! Keep the faith, and trust upon His word, and he will guide Caire and your family down this road to recovery. May God Bless you and be strong in Him. Draw from His strength. He wants us to ask and depend upon him.

  17. Tyler and Tiffany,
    What a wonderful family you are! I agree, this blog should end up as the basis of a book, to give others in similar situations hope. All the tiny steps Claire’s taken do add up. I too love the pix of the hand games in the heat–better sometimes than the a/c–and her lovely calm relaxation afterwards. That monkey has become a real friend. The two of you seem to have grown closer through this–keep it up, with the help of your strong faith. And Claire, keep up the good work! Being at home will be the next big step, with its own adjustments. It will be good to be able to start solidifying your family of five again into your “new normal.” An old hymn keeps going thru my head–“Be not afraid, what e’re betide/ God will take care of you.”
    Blessings, prayers, hugs, and love,
    Dodie

  18. Oh God is good! Claire is making such beautiful progress! She is a miracle every day. I pray for you all to know God’s love each and every day and for strength and courage on this journey. I know it must be hard but you are all marvelous and amazing!
    Colleen Taricani

  19. Isn’t God good????

    For all the little and big steps he allow us to have in our lives.
    Praise His mighty name.

    For all the progress that we are all witnessing I am getting Jesus bumps :0)

    He is there with you and guiding you!!!

    You are doing are outstanding job !!

  20. I loved all of the pictures you posted; especially the last one. What a beautiful picture. I still have goosebumps!

  21. I love all the pictures. Thanks for putting those up. Continued prayers many times a day for ya’lll. That Texas heat is brutal and I cannot imagine how brutal it is to be Claire dealing with muscle rigidity and range of motion that is not cooperating. I will really be praying for ya’ll as you come home. It will be good. ANd so thankful that ya’ll don’t have trachs and all like you said. What a blessing!

  22. Hi Tyler and Tiff,

    I’d been on travel for a couple of days and bit busy at work, and hadn’t checked your daily posts for a while. I am very surprised by the progress ‘Clairesita’ has made. Perhaps it is because I hadn’t checked in that it is easier to appreciate this, but boy you guys are moving forward.

    Congrats to Claire, Tyler, Tiff, Autumn, Heidi for all the progress made. You guys are awesome and all the hard work and pain is paying off.

    Kudos to her health care team as well. Living in Bolivia, I can assure you that children in similar situations here don’t get 10% of the care she’s gotten.

    Best to you all,

    Rodrigo

  23. So happy to see Claire’s progress. Many prayers still said for your family as you get ready for the next phase in her rehab.

  24. I’m so glad Claire does not need any serious equipment. That is a real blessing. She looks great in the photos. No matter how hot it is Riley loves to be taken out in this heat but I never quite thought of it as a death march so that is really cute. Counting the days with you when little Claire can go home to the quietness & serenity instead of hospital noise.

  25. Fantastic post!! You should make a mental note to come back and read this post on the days when things are more difficult.

    And btw Tiffany is so darn adorable! What a cutie! Good pickin’, Tyler šŸ˜‰

  26. It sounds like Claire is helping your family to cope by showing cognitive ability. I think that’s wonderful! She is so beautiful and so is all of your family. Like you said, you are blessed to have the lesser of all evils when it comes to medical complexities. The feeding tube is a big deal in one way, and in another it’s not. I can say that after 9 years now of Maddie having hers. In fact, it is a bittersweet thought about the finality of the removal of her g-button. I can’t wait, but then again I can. It’s a part of her and we were dependent on it for so long…it’s kind of the last physical thing that we will have to let go of. Sounds strang, I know. Keep up the positive thoughts – it’s wonderful!!!

  27. I woke up this morning with the last photo in this post and sweet, hopeful thoughts of Claire in my mind. Praying with you today. May our good and gracious God be in all your moments, surprising you with His tenderness, giving you unexpected joy, and bringing to pass His plans with perfect faithfulness.

    Love, Jeanne

  28. Like so many others, I absorb every word of your blog every day. I pray for Claire and your entire family and am so thankful for the many blessings that shine through your words. Please know that you have a faithful follower who is praying for you here in Seattle.

  29. I am happy she is doing good. As well I hope you all have looked in the children with special care needs program. It is a good program that helps with medical costs. Let me know if you need more resources.
    Veronica

  30. As I read your posts, I’m constantly remembered that God will never give you more than you can handle–God knows that you were the perfect family to help Claire through these challenges. My oldest brother has some similar challenges taught me many lessons as he was growing up, but on those days that I was losing my patience, I would read a poem that was written by a family friend, Emily Perl Kingsley, called “Welcome to Holland”. May it give you strength on the most trying days and help you to remember that although you are in a different place that where you expected to be, it is still a very beautiful place. Many prayers for you and your family.

  31. Thinking of you all from far away near London, England….sending love and wishing you all strength for the days and months ahead….sincerely with love, Caroline..

  32. U had me laughing on the turning the tables!!!! Laughter lightens!! No wonder God invented it!:D

    I was talking to my own chiropractor Dr. Carla Rudolph about Claire; Carla has always had a great interest in the brain as I have. There’s a process that chiro’s take you thru called Body Works. Carla even takes it further, more refined tests she uses a Low-level Laser to reset the strength in a weak area. It’s fascinating! For example, she’ll have me stick out my tongue to the left n I’ll test weak my arm will drop; then she’ll do ten seconds of laser and test again, and I can resist strong:) Many little tests where u can see immediate results. Very fascinating and very inexpensive.
    Prayers up!

  33. Thank you for all your updates. I am exhausted at the end my day and I always look forward to seeing your updates. Then I get up and do what I have to do. I tell myself if Claire can do it then so can I! I might want to do all that it takes but seeing/reading what all of you do for Claire and all the hard work she is doing, it motivates me. So thank you for being such great parents and a wonderful inspiration to me. I have a child with special needs so I do understand all that is takes. Lots of love and prayers to you all.

  34. That last picture of Claire is THE CUTEST ever!! It’s awesome to see her looking more alert; her eyes look really pretty šŸ™‚

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