Friday, November 19: Update

I learned about another Coppell family today that suffered their own tragedy earlier this year. Todd and Tara Storch lost their 13 year-old daughter Taylor while on vacation in Colorado. I hope many of you have already heard their story and have been keeping their family in mind. For those of you, like me, that are hearing this for the first time, I encourage you to read their story. In short, Taylor was an organ donor. Because of this, her family was able to hear Taylor’s heart beating again after she’d died, in the body of a recipient. The woman carrying Taylor’s heart is a mom. Taylor’s gift wasn’t the hardware keeping her alive: it was the extra years the mom received to watch her children grow. The Storch’s set up a foundation in Taylor’s name called Taylor’s Gift. The website gives you the opportunity to become an organ donor in under 90 seconds. It’s easy. It’s fast. Please take the time to fill out the online form.

Claire’s adjustments to the new house have been improving. Her reflux has moderated. Her disposition has been calm. Aside from a nasty upper respiratory cold that took hold early this week, her progress has all been forward. The past three weeks have been encouraging for us and we hope for Claire.

One development in particular has bolstered our resolve. Claire is responding with more consistency to commands. We decided to start testing whether she can understand a request and deliver a response. This sounds simple enough, however, it is dangerous area, both emotionally and scientifically. Tiffany and I have been acutely aware of our tendency for confirmation bias: we want to see improvement and want to make sure we’re not reading false indicators. So were are very careful to design a communication system with Claire that doesn’t lead to false positives. The difficulty with this is that as Claire gains additional control over her muscles, she still battles the remnants of neurological storming that cause her limbs to twitch and spasm involuntarily. For example, if we ask Claire a question like “Are you hungry” and we assign a finger squeeze as the affirmative, we have a low confidence level on whether or not a finger squeeze really means “yes.” We venture that we perceive more pressure when she squeezes after we ask a question, however, we can’t be sure because she squeezes at varying pressures without the question. So we need a signal that is more definitive.

We decided to try an arm raise with Claire. We settled on this because the arm raise is so infrequent and it takes a significant amount of effort on her part. It also provides the opportunity to test whether she is really answering a question or not because we follow up the question with the command “Now put your arm down” which is equally difficult  as raising it. The system is cumbersome because it is a series of closed ended questions. It does, however, give a vehicle to communicate simple needs and wants. It’s working. We are confident that the system operates well the majority of the time. Tiffany and I tested it together first last weekend when Claire was upset. We explained to her that she needed to raise her arm high when she wanted to answer “yes” and then peppered her with a series of questions. When we asked her if she wanted to move to the floor, her arm went up, and when we told her to put her arm down, she complied. When we moved her to the floor, she stopped being upset. We were very encouraged.

We’ve had multiple opportunities to try out the system over the last week. It isn’t foolproof, but it works most of the time. We are still wary of creating false positives, however, we are hopeful that Claire feels a little more understood than she did a week ago.

Now what this means for her brain activity is still undetermined. Is she able to process requests and commands? It appears so. Is she contemplating them on a higher cognitive level than base needs and rewards? I don’t know. I certainly hope so and the father in me thinks she is operating at a higher level. Only time will tell.

This progress has been very welcome as the emotional war continues. The end of this month indicates the six month horizon. It is an arbitrary time line, particularly where young children are concerned, yet it lurks in the back of our mind. We continue to wonder why she hasn’t made more progress. We battle those thoughts reminding ourselves that she continues to move forward with no change in pace. We continue to miss her personality, the little things that always made us smile. And it’s taking its toll on everybody.

Autumn and Heidi have been watching old family videos with Claire as therapy. I am thankful that they continue to express how they are feeling about the past six months. Autumn will mention she misses the way things used to be and we nod and tell her that we miss it too. Within minutes of expressing herself, however, Autumn is back at Claire’s side discussing what game they should all play. The other night they decided on Candyland. The girls made sure Claire won. Then she won at Sorry. They’re good girls and they love their sister.

Thank you for keeping our family in mind and praying for Claire. We maintain our hopes for Claire, that she will soon smile, crawl, walk and talk. Your support helps us when we are tired and forlorn. We hope the coming holidays are spent with family and friends that show you the same love you have shown us.

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29 thoughts on “Friday, November 19: Update”

  1. Our Moms in Touch group is praying for Claire and all the family. I’m printing-out this latest update, to take it with me the next time we meet. Thanks for keeping us “in the loop”.

    Blessings,

    Paula (and Workman Moms in Touch)

  2. Tyler, I sure love getting these updates and I am encouraged when I hear of these significant breakthroughs for Claire. I am always so thankful for having my own child in my life and your family continues to inspire me. In the future, if you decide to bring back the volunteer schedule, I look forward to signing up and helping out. My son goes to preschool in Coppell on Tuesday/Thursday so it would be a great time to visit when he is at school. Best wishes and Happy Thanksgiving.

  3. So great to hear from you and even more thankful to hear about Claire’s progress! WE are honored to be included in your lives and how you’re all persevering in this journey. Believing/asking/praying for all you’re hoping for!

  4. thank you for the detailed updates… with all you have going on it’s so great that you take the time to REALLY share significant moments. so thankful that Claire is continuing to make forward progress… all in His timing… and hers, too.
    thankful for how you are growing as a family… and while this is not a journey you would have chosen for Claire and your family… you are journeying with grace and courage. your fortitude is inspiring!

  5. It was wonderful reading all about Claire’s progress, and I was most amazed about her raising her arm in resonse to a question and then voluntarily putting it down. What fantastic progress!! Know you’re cautious, but I think that’s a notable milestone. You and Tiffany have always been so clever with her therapy, and I’m happy all of you can see the little steps as they slowly make their appearance. Claire seems to have come incredibly far to someone like me who doesn’t see her day-to-day. You should feel really proud that your choices are working by trial and error. And, as always, Autummn and Heidi are there to encourage their little sister by just being with her, helping as they can.

    This will indeed be a Happy Thanksgiving for you because you have much to be thankful for. Blessings and keep the faith.

  6. We are proud to say we have been organ donors for several years now and love the thought that we can go on after our earthly life and help others. We encourage others as you do to do the same…..Continuing to keep your family in our prayers…..Thanksgiving blessings to you all….

  7. I am so glad that you shared the Storch’s story! I am a friend of theirs and frequently work with their organization. I have been quietly following your posts since the accident. I posted a while back about being a teacher in Coppell (at the school where the Storch children attend(ed)- I am so glad that you you have moved to our community and hope to meet you someday! Welcome to Coppell!

  8. So grateful for the update, and for all the details. It seems the two of you’ve found a system that does tell you some of what’s going on inside Claire’s mind, and that it helps you give her what she needs and wants. And I love the details about how involved Autumn and Heidi are! Praying that your Thanksgiving is wonderful–you do have much to be thankful for. Sometimes it must seem that the progress is soooo slow. But think back to those first few days and weeks, and how far you’ve all come now. You’re an amazing family! Love and prayers, Dodie

  9. Tyler & Tiffany, thanks so much for the awesome updates…it is so uplifting for me to read your words and see how much (& how diligently) you are working for your sweet family. My heart breaks & yet beams at the same time to read about the strength and love that both Autumn & Heidi are facing this time your lives. It’s still so hard for me to imagine as an adult and they are just 8 & 5 years old. I know that God must surely be preparing you all for His wondrous purpose, as only He can do. You are in our prayers daily.
    Much Love,
    Lisa & Madison Littell

  10. Dear Tyler, Tiffany, Autumn, Heidi, and Claire –

    I find myself thinking about your family at random times as I go about life. It makes me just Thank God for all he has provided for you in the past 6 months and ask that whatever you may be dealing with right then that God will provide a path or an answer.

    I have heard of Taylor’s Gift and registered to be a donor. Taylor has given and will give many people gifts those who receive the organs and those families who do not have to wonder in such a tragic time of grief what their loved ones would want them to do.

    I hope that you realize that you have given so many people a gift as well. Your ability to share your lives with us and your constant resolve to move to the next mile marker in your journey. You never get down in your writing and I know that Claire feels the same from you.

    Over the next 6 months be the milestones big great tiny or small may you see the progress your angels make!

    God Bless all of you! I smile when you do pop in my head and prayers are always going up for each one of you!

  11. Thank you for the update! Still praying from N.M. for all of you. Stay encouraged as I am encouraged hearing about Claire’s progress. God is so good and He does hear our prayers. Will again request that my Sunday School class pray for Claire.
    May His face shine upon you and give you peace!

  12. So glad to see this update! Congratulations on the new house and on the forward progress that Claire is making. Continuing to pray for all of you. Hope you have a wonderful Thanksgiving!

  13. So good to hear an update! Excited about positive progress in communicating. I continue to pray for all of you and hope to meet your family some day.

  14. It’s so good to have an update. Thank you for taking time to write. I think of ya’ll so often, still. As those hard moments hit, I pray for God’s strength. I am so thankful for the possibility of Claire knowing more of what is going on. May the Lord give you extra grace as the six month approaches and through this holiday season. And He will. 2 Corinithians 12:9-10 ” ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

  15. Thanks for this update. I rejoice with you over Claire’s progress and am so proud of all of you for pressing forward and clinging to God and each other. I know it’s hard.

    I still pray for you every day. May grace, peace, joy, and gratitude for daily mercies be your holiday portion.

    Much love,
    Jeanne

  16. As a Speech-Language Pathologist, it seems that you are on the right track to help Claire get her needs across. Keep up the good work. You are great to assume thta you were reading false positives and then tried to make the plan stronger to judge her mental capabilities. Wonderful ideas and philosophy.

    Keep up the good work Claire.
    Enjoy the holidays.

  17. Thank you for the update. I so look forward to hearing how this sweet girl is doing. She, and your family, are constantly in my thoughts. I am a mom of 3, ages, 7, 4, and 2(today), I think of you all often. When my kids are making me tired with their requests and activity level, I think of you and think of how you’d love to hear Claire doing all those things. Its sounds like she has made great progress, that is very encouraging for the soul. I commend you, as I’ve done before, for being so honest. It takes great courage to put those feelings out there. Still thinking and praying for your sweet Claire and the rest of you.

    Kelly in Henderson TX

  18. I am so moved by the tenderness and love Autumn and Heidi show Claire. I have 3 daughters the same ages as your girls and the whirlwind you’ve experienced in the last 6 months seems so real to me. I’ll continue praying for your family and praising God for the progress Claire makes.

  19. Dear Tyler and Tiffany and girls,
    We think of you often and all of you are in our prayers daily. This time of year always make me think of your family and the time everyone came to Thanksgiving at our house. I was so excited that I forgot to make mashed potatoes, everyone was forgiving though, as I had lots of stuffing! LOL You and Tiffany were engaged then and you (Tyler) were telling us how you wanted 8 kids! Tiffany on the other hand was saying 4, but you were convinced that you would change her mind. Your mom and I still giggle about that. We hope that this year’s Thanksgiving meal is the same as then…..lot’s of laughing, good food (hopefully with mashed potatoes) and the making of wonderful memories for years to come.
    We love you all and Happy Thanksgiving!

  20. Thank you for the update. It is wonderful to hear that you were able to communicate more with Claire. I’ll keep praying for continued progress for Claire and more signs of hope for all of you. You are all in my prayers.
    Sending you lots of love.
    Ivy

  21. Thank you so much for the updates on Claire, I’m praying for her and you all nightly. All of your posts really touch me, but this one in particular really struck a cord, and I found myself in tears by the end of it. Your writing is so truthful and real, and I as a parent myself I can only imagine the struggles you are going through now, but you all handle this with such grace and strength that only our maker can provide. Claire is so blessed to have such a loving and strong family and you will pull her through this. Remember God does not work in scientific time frames, he works miracles! Though we have never met and are thousands of miles away, I find myself thinking of you all often, and your story really has had a profound impact on my life, for this I am so grateful. Continuing to pray for Claire, and a happy holiday season for all of you!

  22. Go Claire! That really is amazing progress! And she will be so much calmer now that she has a means to communicate – imagine how frustrated she is. Your girls are very sweet. We found that the ipad allowed our children to find new ways to play together -even if one of them is doing all the screen touching and the other is looking on. My son feels like he’s helping her along, and she just loves to have his attention.
    I think of you all often. Thanks for taking the time to post.

  23. Tyler and Tiffany,

    I have been praying for and keeping track of the progress of Claire for all these months. I visited with you in late August and was able to see the situation of Claire. Since then, my religious community, the Grand Rapids (MI) Dominican Sisters and Associates have been praying and I’ve been keeping them notified of the progress of Claire.

    Today, I received this information from one of our associates, Mary Claire, who is a speech pathologist:

    I hope [Claire’s] family has access to all the augmentative communication devices out there. I recently purchased an Ipad to use with students and there are tons of free or inexpensive apps. They require touch but no pressure. There are fun games too, like popping bubbles which encourage finger movement. Even adults can have fun like with the one where a bunny eats carrots if you turn the Ipad slightly.

    Mary Claire Fu, M.S. CCC-SLP (associate)
    Speech/Language Pathologist
    Eagle Crest Charter Academy
    616-786-2400 Ex. 236

    If you decide to contact her, please let her know that Sr. Dorothy recommended her to you.

    Blessings always,
    Sr. Dorothy

  24. Just wanted ya’ll to know that I’m still praying. I’m sure this Christmas will be different. Although, the reason for Christmas remains the same, praise God, that He does not change.

  25. There’s nothing like finally settling into a new home! So glad that Claire is adjusting beautifully too. I think her loving sisters have a lot to do with that..winning at both Candyland AND Sorry, how can u beat that!?:)

    Still excited about the horseback riding!

    I know ur praying continually that God give u wisdom for making the BEST decisions for Claire’s care & progress, knowing that God is SO faithful in providing:)

    Ur both doing an amazing job!

  26. I hope and pray that everything is still improving for your wonderful family, and that you have an outstanding holiday. I miss seeing you since your move, but I am so happy about your new house. Take care!

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