Wednesday, August 25: Update

Everyone woke up this morning with things to do. We packed the girls off to school and then prepped Claire for our return visit to OCH Dallas. Aside from having to fill out another library of paperwork because we are outpatient instead of inpatient visitors, there’s not much to report in terms of progress. Claire’s physician, Dr. Raji, was pleased with the improvement in Claire’s arms and reported that we were doing all the right things. Yet the now familiar refrain of “wait and see” rings in our ears.

We did make some slight changes to Claire’s regimen. Claire will go to outpatient therapy once a week now instead of three. We feel that our efforts at home have been more productive so far. The time it takes to get ready and drive over to Grapevine would be better spent conducting exercises and sessions at home. As Claire continues to improve, we will re-evaluate increasing the number of sessions at outpatient therapy with a more aggressive rehab plan.

We also asked the doctor to prescribe Ambien for Claire. Claire has been on Seroquel as a sleep-aid since she was admitted to OCH Dallas. It is primarily a psychiatric drug and we would prefer to have Claire on a med that targets sleep: Ambien is a good place to start. We will trial the Ambien for a month and hope to move Claire off the Seroquel soon. While we wait to wean off the Seroquel, we are taking Claire off the Amantadine right away. We learned that the Amantadine has a history of causing reflux. Dr. Raji wasn’t seeing any continued benefit from the Amantadine and since Claire has been struggling to keep food down, we decided to cease Amantadine doses. It will be out of her system by Sunday.

The rest of Claire’s day was mild. Her calm mood matched the subdued day outside in north Dallas. Claire was content. And we were reluctant to push her hard today for therapy. Tiffany conducted some easy sessions throughout the day, keeping Claire loose and comfortable. The break ended at 7:30 PM. We gave her legs a vigorous session. Her quadriceps have been a growing source of discomfort the last week. We made them our focus tonight. Claire was not happy. It was a mixture of contempt for not being consulted and overall discomfort. She may not have wanted to do it, but she did. And by the end of the night her legs were more flexible and her disposition even more relaxed.

The hefty workout was a great prep for sleep. Just talking about it makes me more sleepy. So with that, I bid you a good night. Thank you for your continued support and prayers.

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17 thoughts on “Wednesday, August 25: Update”

  1. It sounds like you ARE reporting a lot in terms of progress, if you can go from three outpatient therapy sessions to one, and the doctor’s pleased with the improvement in her arms. Even though Claire initially didn’t like the evening exercises, they helped get her ready for sleep, and her legs were more relaxed. I hope it helped your disposition to have the doctor tell you you’re doing all the right things. I know you want more improvement, faster, but sometimes miracles are slow in coming, especially when you see her day to day and minute to minute. She’s coming along faster than you can sometimes see, I suspect. Ambien’s a good, gentle sleep aid–at least has been for me. I pray it will work better for Claire, without the reflux that’s so terrifying to all. How’s school going so far? And I’m waiting with bated breath to know how the first session of hippo therapy goes. Blessings and prayers for you all.

  2. Hi Dear Family of Claire!
    I am a long time family friend of your family – from CSCS with Alex and Brianna being dear friends of my daughter Callie Webb. We were at Alex and Laura’s wedding so we maybe met you then. I’m Shelley Olivier now. Your sweet mom and dad have been precious to help me over the years. All that to let you know – I love your family!!
    And to tell you that Claire is in my heart every day and I’m believing miracles for her life! I have loved your updates and believe that you are the bravest mom and dad in the world! I’m so proud of the way you are dealing with everything!! I can see God’s heart pound extra beats of pride for you!!! Please know that you all are being prayed for and loved from Colorado Springs!! My husband, Brian is a Family Dr. and he has great compassion and love for you!! We both are believing!!!! Rest well!!

  3. i would agree… you are making great progress. being able to stay home and do therapy is less taxing than all the traveling, and i imagine this is good for claire, too. you all are such wise advocates for claire. glad to hear she’s doing so well and continuing to pray for neurological improvements.

  4. I think you will find that as you go along in this journey, what works will change. At first, for us, at least, we were doing outpatient therapies 5 days a week. But looking back, I’m not sure there was any progress gained. As soon as home therapies began there was a huge boost in progress.

    Also, watch out for Ambien. I’m actually considering asking for a script from the neuro for brain awakening for my son. I’ve recently come across research that it has the opposite effect on brain injured patients, and in fact, may wake up the brain. The active ingredient that does this is supposedly Zolpidem. Google it. It was fascinating stuff.

    As always, my prayers are with you guys! Go, Claire, go!

  5. Hi from another IBCer who has been following Claire’s journey and praying for her daily. I just wanted to let you and Tiffany know how impressed I am with your approach to Claire’s recovery. Claire is blessed to have such proactive and committed parents! I pray that God continues to give you the insight and wisdom needed to question the right issues and research the solutions. Please know that so many of us are praying not just for Claire but for you and Tiffany and the girls as well. I can only imagine the energy, both mental and physical, it takes to get through one day, and I pray that God sustains and strengthens you each day.

  6. Tiffany and Tyler, I praise God for you both and your commitment in doing your research, for challenging the Dr’s/ medical professionals and continuing so agressively with daily therapy with Claire and Hedi and Autumn. Claire and the girls are so blessed to have such loving & dedicated parents that press on and will never give up. The sacrifices that you both are making to juggle life is to be commended. It reminds me of our realtionship with our heavenly Father. How He continous to push us daily, in his “therapy”.How painful some our trials can be to us phsyically, emotionally and spiritally. How He will never stop in helping us get better( In His Image). You both are such a demostration of loving parents who truly love your children as He loves us.!!! Thank You for your sacrifices, thank you for your love and determination and thank you for never giving up on Claire nor on Him.. God Bless you with strengthen to continue on your daily journey and give you preserverence to stay committed to Him and to one another and most of all to Claire.
    Love ya

  7. I hope the girls had a good first day of school. Keep up the good work with Claire’s therapy! Thinking of you in CT…..

  8. Just wanted to say hi since I have not posted for a week. I am still reading and praying. I was thinking how buff Tiffany’s arms will be after all this “resistance training”. 😉 Ha ha.
    If you get a chance can you post a picture of Claire soon? I miss seeing her. That picture of the girls on the first day of school was priceless! Heidi’s boots were awesome. Do they go to a school that requires uniforms??
    Thanks. I love you all very much!

  9. It sounds like you’re making great progress if you can cut back on the outpatient therapy. Continuing to pray for you all!

  10. Continues prayers and hopes from Conn. I have sent Gary L. [IBC] a cd to be given to your family. The group Tribute is one we heard in Fla. last winter. It touched our hearts. Song #3 and song #11 are so special and I would love to dedicate them to your family and especially to our Claire. Listen,relax and enjoy the messages. Love from the American Grandparents of Rebekah and Brendan

  11. I shared Claire’s story with some of my seventh graders today and we prayed for her recovery. It sounds as if you have come to some good conclusions regarding therapy and meds. I was wondering today about her vision – any improvement there. As always, I continue to pray for strength and good rest for all of you as well as wisdom and perseverance.
    Love,
    Susan

  12. I also wonder about how Claire’s vision is progressing as well as the latest MRI. I am hoping that the news is positive. I think of Claire daily and cannot even begin to imagine how heavy your hearts must be with grief. She is a beautiful little girl and I hope that you continue to see positive improvements in Claire’s condition.

  13. Kudos ya’ll on continuing the “intentionality” of your research and knowledge of Claire’s drug regimen. It is the day to day observations that make such a difference in her care plan…..despite your own weariness you are sooo on the mark and alert ! Have a good week

    blessings and prayers,
    jennie

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