Tuesday, September 14: Update

After a month and a half at home, we seem to be developing our routine. Claire’s early complications are manageable and her schedule more predictable. The girls are in full-swing at school and we have a mostly regular schedule. We fight to keep things in perspective, especially when it comes to the marginal value of each new change Claire shows. Think of it like your first dollar: moving from zero to a dollar gives you much more enjoyment than moving from $10,000 to $10,001 dollars. But it’s still a dollar. We were vigilant to watch for Claire’s early changes because everything was new again and portended our hopes of a great recovery. Today’s changes carry the same hopes, however, they are sometimes diminished in a sea of previous changes. It’s an important balance for us to strike.

We have seen noticeable differences with Claire over the last week. Her eyes have become more active and track faster to sounds and light. The jury is still out on what she can see; but we are confident that her brain is processing more aggressively. My hypothesis right now is that Claire locks silhouetted areas much easier right now. When we are backlit, Claire locks onto our faces in greater earnest. She may not be able to pick out our features yet, but I do think she is seeing our shape. When subjects are flat and evenly lit, Claire’s eyes wander more, looking for higher contrast interests. It’s still an improvement.

We started weaning Claire off her final dose of Chlonazapam this week. Yesterday was rough: the withdrawals made Claire irritable and her stomach upset. Today was much different. Claire was even-tempered and didn’t show any of the signs she exhibited yesterday. After the Chlonozapam is out of her system, we will start working on the final Seroquel dose. After this is complete, Claire will be on a single medication around the clock and one sleep aid at night. It’s odd to look at the multiple paged prescription document we came home with and realize a two medication reality is on the horizon. We hope things go well and we don’t see a reversion to  increased spasticity or agitation.

Tiffany and my social lives have been very busy of late. We had dinner with Claire’s Medical City doctor and his wife on Saturday night. It was awesome. We didn’t realize how much good it would do us. It did a lot. We capped off the weekend at another family friend’s house. Homemade beer, popcorn and cake were on the menu. It was a nice send off for the weekend.

My Aunt Grace joined us for a couple of days and we loved having her here. She helped with the girls, fed us and chilled out. Autumn and Heidi are still talking about her visit and eager to meet their second cousins after hearing stories. We hope to see her soon.

Thank you again for all your prayers and support. I plan to post some pictures with the next update. Thank you for continuing to follow Claire’s story, especially as the posting frequency diminishes. We hope to share continued good news soon.

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21 thoughts on “Tuesday, September 14: Update”

  1. Homemade beer, popcorn, and cake–awesome menu! And that sounds like the rest of this post. You’ve made a lot of progress, it seems, at calming yourselves down and adapting to the new normal, as it is for now. You don’t have to like it, but you’re accepting it for the moment. Glad the girls are settling into school. Glad you’re having a social life. Glad you’re seeing some baby steps with Claire. God bless all of that and what the future brings. Love y’all. Dodie

  2. Praise God for her improvements. I’m so encouraged to hear of her vision improvements, and how awesome that she’s only on 2 meds now! Those are huge victories. Praying praying praying nonstop for a miraculous recovery and for the strength of a mighty God to revitalize and sustain you all. Sending all our love, hope and prayers.

  3. Thank you for sharing and don’t worry about the less frequent postings. We appreciate you keeping us in the loop about what’s happening with Claire. My prayers, and that of my Dominican community, continue. Blessings, Sr. Dorothy

  4. My name is Whitney, and I have been faithfully following Claire’s story since the beginning. I am not sure how I was originally notified of Claire’s tragedy… but she has been in my nightly prayers.
    I could have written every word in your blog. Our similarities are many. You can find us over at http://www.suzybooze.com.
    Two and a half years ago, when our daughter was 11 months old, we, too, ‘lost’ her. Suzy was perfectly perfect on the morning of Jan, 26, 08. By that evening she was in a coma fighting to stay alive. She had contracted a common virus, however, for her it traveled quickly to her brain and caused viral encephalitis. The original tragedy for the two of our girls is different, but the rest has remained the same. Suzy stayed in a coma for 2 weeks, was transported to the rehab unit for 7 weeks, and then sent home to us. Their injuries were caused by different things; yet, everything else is the same. They both have suffered brain damage, and so far their recoveries are heading on similiar paths. Suzy had no vision for the first 8 months, cried, was uncomfortable, had a feeding tube, and was on several medications. We have fought spasticity, and posturing, and overstimulation. (She now has her feeding tube removed and can see!)
    We, too, have 3 daughters, and Suzy is our youngest.
    I wish I could tell you that all is perfect now. And that 2 and a half years later we have our perfect daughter back……
    However, I can tell you that things are SO MUCH better. And that Suzy continues to make progress each month. And how I spent the first year crying and praying and begging and pleading.
    Our 2 older girls have remained happy. And they adore their little sister.
    Life is different for all of us now, but it is still wonderful.
    We have tried multiple therapies and treatments for Suzy. We have poured thousands and thousands of dollars into her brain. Some things have provided success – others, not so much.
    Please know that I have been praying for Claire, and that you are not alone on this journey.
    Contact me if you have any questions.
    Hugs and love,
    Whitney

  5. I am so glad you are all finding a routine. I believe routines are really good for kids and adults alike! It is wonderful to hear about Claire’s tracking ability. Any millimeter of progress is still progress! I continue to keep your family in my thoughts and prayers!!

  6. So happy to hear a routine is starting to develop and that you are seeing some improvements in Claire. God is still on His throne and He is in control.

    Keep up the good work you are doing!

  7. walking with you… every penny of the way.

    so glad to hear of your regular routines. i’m sure the “normalcy” does everyone well. just know how much you are loved and prayed for and how much our Father has every detail in his capable hands.
    thank you for being such a valiant advocate for claire, your wife and your girls. you exhibit and mirror the qualities of our Father… it’s obvious to me where you get your strength.
    press on!

  8. Now that you are posting less frequently (which I TOTALLY understand and am on board with), I find myself even more drawn to finding out the latest news. Good to hear about everyone in the family. Thank you for taking the time to update us.

  9. Wow, this looks different. Did you change website colors? I’m such a blog idiot. I know nothing.

    Anyway…love to hear updates about precious Claire. I am still praying for her life and yours as God lays you on my heart. Looking forward to playing with your girls very soon.

    Are the big girls adjusting to school and enjoying their teachers?

    1. The big girls are doing well. They are adjusting to school just fine. They have their days like any other kid, but overall, school is going well! How’s Ashton doing? Does Lauryn go to preschool? I hope you are doing well! Love to you guys, Tiffany

  10. I just wanted you to know that my heart is going out to your family. I am a mother of 3 kids, ages 7, 4 and 1. I found your website through another little girls’ website who had a near drowning incident in Marshall TX. I have literally spent all my free time reading your story from start to finish. I can see how much you love your Claire. She is a precious child. I am trying to put myself in your shoes and I am just devastated. Claire’s story has profoundly affected me and I really want you to know how much I appreciate your honest thoughts. It really puts things into perspective. I pray that Claire has continued success and that she feels the love her family has for her. I also pray for your older daughters and that they see that love conquers all. Kelly In Henderson TX

  11. Happy to see the update – don’t worry about the rest of us.
    We keep you in prayer, thought, and vision, becauase we all love Claire.
    We are delighted with any ‘progress reports’, because we love all of you.
    Care, hugs, love, and prayers to Claire and Care Team;
    Susan D.

  12. Still holding Claire and your family in my thoughts and prayers. You are such a lovely family and I am so sorry that things aren’t improving more rapidly. Love from San Diego!

  13. It’s wonderful to hear that Claire is progressing beautifully and that the rest of you are doing so well. Getting out and about is terrific therapy for all of you. Keep up the good work!

  14. Your Aunt Grace is an awesome lady!! That’s for sure. Glad to hear she got to see you. She was so very concerned when all this started…and I know she still is and loves you very much!

  15. Hi, Tyler and Tiffany. I read this update the day you posted it, but I’m just now getting a chance to comment. I arrived in Seattle late Monday night for another week-long visit. Can’t seem to stay away. 🙂

    This post is so refreshing and encouraging. I’m thrilled you’re finding balance in your day-to-day schedule while still holding on to aggressive hope. We continue to pray and to tell others about Claire so they can pray, too. God is working out His plans, slow though they may seem. One “dollar” at a time.

    You’re such a delightful family. Much love to all of you.

    Jeanne

  16. Hi Tyler & Tiffany,

    It is sheer delight to hear about your social life; so much good comes of it that I hope it’s a regular deal:))

    Claire is blessed to have u both!

    Praying the girls have an incredible school year!

    Candace

  17. We do not know one another, but I am praying for you all! I’m so happy you have Claire in one way or another, and I pray that sweet little girl keeps fighting to show you guys the life she once had! My best friend’s daughter is in OCH right now, she was in a near drowning accident here in Marshall, Tx on August 25. It has really helped me to read your posts. I can’t wait to see little Madie when she comes home from OCH and help out with her therapy as well. Thank you so much for sharing so candidly about your struggles and successes. God is being glorified through your family in ways I’m sure are hard to recognize for you right now. I’ll continue to pray until Claire is Claire again. God Bless you all!

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