Thursday, July 29: Update

At the same time we seem to be stuck in time, we also feel like we don’t have any of it left. Before we know it, we’re looking up at the clock and it’s 11:00 PM and we’re wondering where did the rest of the day went. Sleep seems to be an afterthought, though we feel like the Sandman is always stalking us, lurking around every corner. It’s different from those first three months with a baby. Then we felt like we were the ones chasing sleep, and it was ever elusive. We couldn’t get enough. That’s not the way it is this time. I’m tired. But I feel other burdens and I fight the urge to sleep. I feel like I ought to be doing more. More research. More therapy. More focus.

This has always been the albatross around my neck. I’ve felt that any problem, issue or opportunity can be overwhelmed. Friends and family are amused with my approach to new hobbies. When I find something new to pursue, I go all out. I digest inordinate amounts of information, structure my own training regimens and immerse myself in the new culture. This is the last subject matter I would have chosen to pursue. It’s certainly not a hobby. My tendencies, however, are put to good use with Claire. I feel that there is always something new, something better that we can do for Claire, so I chase after it every day. But this requires a lot of time as well.

My sleep gets the leftovers. And it’s not a priority for me. Not yet. I will be soon, either by my own choice or foisted upon me when my body says “Enough!” I have a solid understanding that balance is the best approach, not only for me, but also for Claire and my family. If I don’t take care of myself, then it will be hard to take care of them. I understand that; but I don’t abide by it. Not yet.

While I may not be getting as much sleep as I need, Claire is sleeping like a pro. She is getting nearly 12 hours of uninterrupted sleep each night and her reserves are being replenished. She captures another one to two hours with naps during the day. Today I rolled her on her stomach for a while for a change of pace: she got so comfortable she fell fast asleep. We’re learning new methods to add variety into Claire’s routine so that she feels more comfortable and less frustrated by the mundane. Being on her belly was just one of our attempts. It’s nice when the experiments work and we discover a new tool to fight the malaise.

Claire wrapped up her week of scheduled therapy at Grapevine OCH today. She had another productive day and we learned some new therapies that we can utilize at home. We are pleased with the first week and her new therapists. They have been a great source for new ideas and they are proactive with Claire’s plan. We appreciate that and are glad we added them to our Claire Team.

Thank you as always for being a part of the Claire Team. We hope the end of the week is a good one!

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19 thoughts on “Thursday, July 29: Update”

  1. Tyler, you are a great dad, and Tiff, you are a great mom. You are doing your best for your baby. That is the best you can do as a parent!

    Tyler, can you explain the coma scale thing a little more some time? I never knew there were levels to it, and only thought of a coma as “the person is completely out and non-responsive.” Where is Claire now on that scale, and what do they see happening with her as she comes more out of it?

  2. We are continuing to pray for your family. I know that sleep seems like “time wasted”, but please do try to rest to restore yourself. I pray that God gives you all restful nights and productive days, and that he will continue to surround your family with peace as he watches over you and precious Claire. Please know that there are moms and dads all over the world who want you to know how much we love you and will continue to uplift you in our daily prayers.

  3. Tyler and Tiffany~
    Today I kept thinking of your family. I prayed for each of you, individually, as each of your experiences and reactions to the current circumstances are unique. There is something about Claire. Something. That tugs at my heart.

    P.S. Roly~Polies…Tyler, your words are affecting me; causing me to let go, just a little, just enough, of the brokenheartedness I have over our son’s situation. Thank you.

  4. Sleep is very important to our physical health as well as our mental health. You can encounter health concerns if you are not careful. You need to make sleep a priority on purpose.
    Great to hear that Claire is resting and sleeping! She senses that she is home in the arms of love, she is comforted by her loved ones, she is in familiar surrondings. Now follow in her footsteps. Fall into the arms of your heavenly Father.”Be still and know that He is God” is my pray for you and Tiffany.

    Do not be anxious about anything but in everything give praise and thanks to the Lord.

    Claire and the rest of the family needs you to be strong and healthy :o)

    Hope you have a restful weekend.

  5. I hope you are able to find the balance and sleep soon. I know what it’s like to have a mind too busy to sleep! It is so good to hear about the positive effects being home is having on Claire. I continue to keep you all in my thoughts and prayers. GO TEAM CLAIRE!

  6. We are soooo very proud to be part of the Claire team….Even though the miles between us are many the care and concern we feel for all of U Keeps us near. We are only a prayer away….Our prayer at this time is for rest , precious sleep. For u. To keep up your mind, body and spirits. U need to rest. Lean on HIS everlasting arms and rest…..Our Love and prayers for continued positive progress for Claire. Barb and Frank {the American grandparents}

  7. The Claire Team! I love it! Tyler, that is perfect. Have a wonderful weekend. I am sending much love and healing thoughts your way.

  8. Thank you for the notes on your sense of balance and well-being. My father (Ed Irvin, Ed Powers’ uncle) and mother have expressed notes of concern bout how you might be holding up. Tiffany, Claire, Heather and Amber are fotunate to have a man such as you in their lives.

  9. I’ll put my two cents’ worth in too. You do need that sleep as much as Claire does, Tyler! You can see what it’s doing for her. It will do the same for you. That’s my prayer for you right now, too. Dodie

  10. We hope you can find a way soon to ” escape” a bit w peaceful dreams and slumber from all that you guys are facing! You are AMAZING parents!!! We are continually thing about you all and praying!!!

  11. It sounds like the Claire Team is turning out to be quite awesome and inspiring. Keep up the great work! You are doing a wonderful job and yes, please take care of yourselves…

  12. Tyler, your family is so fortunate to have you doing research and digging yourself into them! Because you have remained faithful to God and His calling for you as the man of your house, He continues to allow His unfailing Grace to fall upon all of you! I am constantly amazed at your positive words and encouraged with prayer. I wish I had taken the time to know Tiffany on a more personal level while we served together. What I do know I love and you are blessed to have each other! Thank you again for sharing!

  13. Dear Family,
    It is so exciting to read of the great, positive effect on ALL of you with Claire’s homecoming!! It is so true, life’s unexpected challanges educate us in ways we NEVER would have chosen. We looses WISDOM to all of you, Claire is showing you and her sisters will too. Holy Spirit will not only comfort you but guide you as well. As you research, look at REFLEXOLOGY. It is a “gentle touch” means of stimulating from the inside out, you can see it @ “Interactive Reflexology” You can go to ARCB website to find Reflexologists in your area. It has helped me and many that I know.
    We continue to release healing to body AND soul for each one of you, and rest as well!
    Much love, Uncle Glenn and Auntie Ruthie

  14. Hi Tyler & Tiffany,
    I was away this week and just got caught up on Claire’s first week at home. I am so happy that it is going smoothly and that Esther was able to be there to help out in the transition. You are both amazing parents to all of your girls. I continue to pray for Claire’s healing and for your perseverance and good rest. I know that there will still be some tough days, but it sounds like she is progressing well. Again, thank you for the detailed updates!
    With love,
    Susan

  15. Ask God to run the show; that way guilt with not knowing enough, not doing enough NEVER becomes an issue, and that’s a good thing!

    God is so faithful to provide the best options in the most timely fashion that his yoke is easy n burden light becomes a reality even in the midst of a deeeeep valley ur busy climbing out of.

    Take a lesson from Claire and get some restorative sleep;);)

  16. hi i’m max i hope Claire gets better and i want her to know that i’ve ben praying for her.
    I’m Max Turpin and I’m 7.

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