Monday, July 12: Update

Claire is responding to commands more than she has the past six weeks. Her pattern is still inconsistent and her effort contingent largely on whether she is agitated or not. She is, however, making a concerted effort to comply when we ask her to act. Today, for example, we watched Claire struggle to lower her arm when we told her to do so. Claire raises her right arm straight out in front of her as an agitation symptom and tenses her muscles. It takes its toll on her body and energy reserves. Today during one of her tensed muscle episodes, we told her to lower her arm. We saw her elbow break in as she struggled to lower her hand to her chest. She made multiple attempts with us encouraging her and praising her along the way.

Claire also met with the ophthalmologist again today. The doctor noted that Claire’s vision is more responsive to changes in light than when she last saw Claire. The doctor is confident that Claire can tell the difference between light and dark, however, she could not say to what extent Claire can distinguish images. She also remarked that Claire has come out of her coma much more than when she saw Claire last. Claire’s pupils are more responsive, yet they are still sluggish. There is still little of which we can be confident, but enough to know that Claire’s vision is improving. We hope it continues down that path.

Claire took another walk outside today after her early morning therapy sessions. She enjoyed it. We hadn’t seen her this relaxed on a walk yet. It was reflective of the day. Claire was collected and subdued throughout the day showing agitation in mild waves and on an infrequent basis. We are encouraged by the pattern that she is setting as we continue to wean medications: with each dosage subtraction, Claire is showing fewer withdrawals and reduced agitation.

While the phasing out of specific meds is going well, we are having to increase her Baclofen levels to deal with her muscle rigidity. We discussed this with tonight’s nurse. The nurse sees this pattern occur frequently, however, Claire is not nearly as spastic as other patients. She has seen patients that have no muscle flexibility. While we understand that each recovery story is different, we were encouraged to hear that Claire doesn’t have to battle the extremes of muscle rigidity. We will continue to work with her every day and hope the muscle toning abates as her brain continues to heal.

Claire is making her second visit to the therapy pool tomorrow. The first visit was such a big success and we are excited that she has the chance to go back so soon. She will also be at the pool on Wednesday.

Thank you for following Claire’s story and giving us your support. We look forward to telling Claire about all the prayers and hopes she received. Talk to you tomorrow!

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22 thoughts on “Monday, July 12: Update”

  1. I am very tired, and perhaps should not comment, but my angels are driving me crazy. How does she respond to massage? Perhaps it is the touch that she is longing for. I have been with you all since day 1. Like it or not, we are family! I know that you like it and I thank you all for allowing me to be a part of your journey. xoxoxoxo pat 🙂 much love and prayers. May the Lord lift us all up so that we may know how to help Claire.

  2. As a grandmother I earnestly prayer for your sweet beautiful daughter each day and also for each one of your precious ones. I’m standing on the promises that God does not ever make a mistake. We know God uses everything for His glory. I’m aware by reading comments that your crisis has touch so many peoples lives. I’m praying for the continual recovery. Praying in Guymon, OK.

  3. Hello Tyler and Tiffany, I’m Jeanne Damoff’s daughter. My mom has been sharing with me about Claire and I just read your blog for the first time today. I’m very encouraged by your honesty and just wanted to let you know you have another sister praying for you in Seattle.
    Much love,
    Grace

  4. Yay for Claire for continually improving!! I am so glad to hear that things are heading in the right direction, I have a 13 month daughter myself and your story has really touched my heart in so many ways. I think about you all often, and really enjoy reading your updates. You are in my prayers everyday. God bless and may the good news continue!

  5. I have been following your journey online and my heart is breaking for your baby girl. Everynight I pray for God to lift her little baby up to Him and heal her. I pray He gives you both the strength to continue in your battle to bring her back to you. I pray He gives comfort to her sisters.

    I applaud you and your blog. I appreciate you sharing your and your family’s pain, fears, hopes, and dreams with all those who read your words. I am personally amazed at the strength that you both have managed to possess. You are both an inspriation to others and a testiment of any parent’s love for their child. Your daughters are blessed to have you as their Mom and Dad!!! Probably just as you are both blessed by having your three loevely children.

    I know God is with you and hears these prayers. You must believe that He is listening. My children and I will continue to pray for each of you. We all wish we could wrap our arms around your Claire and give her a huge healing hug!!

    Thank you for sharing your story with all of us , unknown people but people who really care. We wish you all the best and we will never stop praying until Claire is 100%.

    Yours in Christ our Lord,
    The Turpins of NRH, TX

  6. What good news to hear that Claire’s agitation is lessening. I’m so glad to hear of the ups you’ve had over the last few days. This is a long journey but you are holding it together so well and seemed to have accepted that there are days when you are stronger than others. Here’s to more good news in days to come!!!

  7. Thankful for the progress, each step is worth celebration. I am missing you all so much and hanging on to each update, thanks for taking the time and sharing. Hug all the girls. Praying for each of you. See you when we return!

  8. Our family is cheering right alongside yours. We are so proud of Claire’s accomplishments thus far. God has accomplished so much within your family. We know that He will continue to bring your family, Claire’s body and the doctors the strength, determination and knowlege necessary to let this tragedy end triumphantly.

  9. Wonderful news about her improving vision and lessening agitation! Thank you for keeping us posted with your amazingly written blog.

    Praying every day for all of you,
    Susan

  10. While I’ve never met any of you, your story has touched my heart. I’m a grandma of five beautiful little girls. The youngest just turned four and is just learning to swim. Her fearlessness is frightening and your story has made us all more aware. I can’t wrap my brain around what you’re going through or why this has happened to your beautiful Claire. Claire by the way is the middle name of my second granddaughter. What I do know is that this little girl has crawled inside my heart and now has another prayer warrior…in Arizona. Tyler, you have an amazing gift for pulling words from your heart and writing them down. You could write a book. A book that would teach us all the importance of water safety and patience and so much love. Keep on keeping on. Inside that sweet brain dwells your Claire…the one you’ve always loved…the one who needs you so very much. I’m confident that she’s slowly letting you know that. What a lucky little lady to have such an amazing family behind her. This ‘Mimi’ in AZ is sending you all love and strength. I’m confident you’re feeling it!

  11. The update sounds very encouraging. I don’t think I told you too much about my daughter, Maddie. She was born 3# 5oz. Her stomach was not attached to her stomach and she had a very small head (Microcephaly). Maddie also had hypertonia (rigid muscles). The prognosis by the doctors was poor to say the least. They assumed she had a fatal chromosome disorder which she did not…Thank God! After surgery at 5 days old to connect her esophagus to her stomach, we thought that we fixed her and she’ll be all right now. After she spent 5 weeks in the NICU before coming home, we were encouraged to say the least when she was able to drink from a bottle. Slowly, but surely, she drank less and less from the bottle and couldn’t control her tongue when we tried to feed her other foods by mouth, and eventually was diagnosed with failure to thrive. If we wanted her mental state to get better and her body to get better, we had to get her the proper nutrition…we knew that! After months of struggling with the idea of placing a feeding tube (g-button), she got hers at 9 months old. Maddie thrived, even got a little heavy, by going through with this. While this made me feel like we were going backwards because she “needed help”, I know now it was the best thing we ever did…plus keeping her in speech therapy to improve her oral/motor skills and strength over time. Yes, it’s been a slow process, but with the help of all the therapies (OT/PT/Speech), Maddie has really come a long way. She’s 9 1/2 years old now and she hasn’t needed to use her feeding tube for 6 months now. Praise God…she’s going to be getting the feeding tube out soon…something we honestly thought would never happen.

    As for her high muscle tone, she always looked to be in a fetal position. It was most comforting to her to be swaddled in a blanket, as it gave her the proprioceptive input that she needed. Over time, and with years of twice per week therapies, Maddie is able to many things she once could not.

    I tell you all of this because I’ve read every blog you’ve written and I believe that Claire is going to thrive on life again one day! Like Maddie, Claire is bound to go through spurts of healing time (which feels like nothing’s getting better), then spurts of impressing you with what she can do next. I’m sure the process will seem slow for you and your family. Honestly, we all know it won’t be an easy one either. However, having many friends in her life will be the best thing she could ever have out of life.

    I still hope to meet you one day when you’re in the office. I just know your time is limited there and don’t want to disturb you while you’re able to “get away” for a few minutes from the realities of it all! Believe me, I know! It’s hard, but press on my friend…Claire is worth it!

    Sincerely,
    Donna

  12. I’m so happy to read about Claire’s progress. I haven’t missed one blog. Although we don’t comment as often, we are always checking what going on and you all are in our thoughts and prayers.

  13. Progress for Claire! YAY!
    Rigidity/muscle spasms are the pits – can be really painful too. Glad muscle work is improving – she will be so much more comfortable.
    Care to the caregivers;
    love and prayers to all.
    susan D.

  14. Appreciate your updates- I sense Jesus’ Spirit as I read them. The Father uses them also as a motivator to continue to pray “without ceasing” for your marvelous and hurting family. Your transparency of events, thoughts, challenges, and feelings lends to my recent sense of strength to face situations in my own life which overwhelm my equilibrium. Our stabilizer, salvation, and sustenance is ultimately only from Jesus. May He faithfully provide all three to you and especially Claire. I have prayed this song on your behalf, from Kerrie Roberts, titled No Matter What. http://www.myspace.com/kerrieroberts

  15. Hi Tyler and Tiffany,
    I read your posts almost every day. I can glad to hear of each improvement. I am asked often if I have heard any more from Claire’s family and I tell the nurses what I have read. Thanks for taking the time to post the updates.
    Your family is in my prayers. Tell Autumn and Heidi that I look forward to pulling their ears when you are able to visit.
    Chaplain Jim

  16. My name is Heather, and I am Ruth Williams’ sister-in-law. Ruth knows Tiffany from MOPS. I have been following your blog since day 1 and have been praying for Claire and your entire family. I am a pediatric physical therapist. I work with a pediatric home health agency called THERAPY 2000, and wanted to let you know that I am more than willing to help you get set up w/ therapy once you transition home. I live in Fort Worth, but my parents live right by you guys. I may even have some equipment that parents of my patient’s have donated to me that Claire might be able to use. She has been in my thoughts and prayers so much, and I would love to be able to help your sweet family in any way possible!

  17. Hi, I know you don’t know me, but I just wanted you to know that I keep up on your daughters progress and pray daily for her recovery. I live in Tunnelton WV. My daughter Missy Mattingly knows Claire’s grandmother that lives in Co. They went to the same church until my daughter and family moved to England. May God put his healing hand on your daughter and bless you all. Prayers, Janet Myers

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