Friday, July 9: Update

Claire had her most subdued day to date. She was relaxed. She was alert. She was even. We saw the least amount of volatility today as well. The ups and downs, the mood changes, were much closer together than days previous. We hope this is an indication her brain is close to emerging from coma and she will be able to respond to commands with regularity soon. Setting aside whatever the future has in store, we enjoyed the present today and our time with Claire.

Because Claire is doing so well, we got the go-ahead to lower Claire’s morning Ativan dose again, moving ever closer to removing some of the sedation drugs from her system. The corollary is that we increased her Baclofen to deal with any additional muscle spasticity that could result arise from the lower Ativan dose. It also helps make sure that Claire can continue her therapy without regressing. Finally, we also increased Claire’s Amantadine dose today: Amantadine is the drug that increases Claire’s brain dopamine levels to make her more alert.

Tiffany and I got to reflect on Claire’s progress this morning since my mom was staying with Claire. It’s difficult for us to think about the future without reflecting on the past. On the one hand, we need to be positive for Claire and her recovery prospects: we believe she feeds off our mindset and disposition. On the other, we are still grieving the little girl we miss. Striking the balance is difficult and we are not good at predicting when we will be hit with emotion. We ordered a new car seat for Claire today and Tiffany remarked that she has no problem getting rid of Claire’s old car seat. She reasoned that we couldn’t keep the old one because every time we put Claire in it now, she would be reminded of how Claire always insisted on buckling herself. We don’t know when she will next ask to buckle herself. And that uncertainty weighs heavy.

We needed a break to clear our minds and the opportunity presented itself when Claire’s occupational therapist, Lori, offered to watch Claire tonight so we could get away as a family. We escaped for an hour and a half in the Dallas rain. It was just enough of a respite that we got to laugh and short enough to dissuade opportunities for sad thoughts. When we got back, Claire was sprawled in Lori’s lap, relaxed and awake. Lori often jokes about how much agitation she inspires in Claire: we know it’s all a front and Claire loves Lori. So do we.

Thank you for your continued thoughts and prayers. Enjoy the weekend with friends and family!

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21 thoughts on “Friday, July 9: Update”

  1. I love these sweet, sweet pictures of Tiffany and Claire.
    Thanks for sharing. Thank you for the update. Praying that the changes in medication will have positive results. Continued prayers for all of you.

  2. I have only commented one other time, but I continue in prayer for Claire and your family daily. I am concerned though that you are bearing the brunt of the costs for all the equipment you have mentioned. I hope you have insurance help. It pains me that you have had to endure so much.

  3. I read such hope in your words! It is wonderful! I am glad you have so many good people around you for support. I continue to keep all of you in my prayers!

  4. Hello,

    My name is Sherri and I have been following Claire’s blog for about a week. I wanted you to know that I am praying for your entire family and have journeyed down this same road with our now 11 year old son. I am not sure how Claire’s accident happened. Our son was a near drown following an episode of cardiac arrythmia. His recovery sounds very much like what Claire is experiencing early on. You are doing an amazing job of supoorting and loving your daughter, and you are right I believe they do pick up on our attitudes and feelings. We took our son home about 6 weeks after his injury because he was still semi-comatose and didn’t qualify for rehab. We took him for a course of Hyperbaric (40 treatments) about a week after we got home. He has made a remarkable recovery (although he is still in therapy some 2 1/2 yrs later) It has been very difficult but I feel that you will see Claire recover as well. Children’s brain are so much more forgiving and the recovery goes on for a lot longer than we were originally told by the doctors. Matthew cam home unable to move, sit up, walk, talk or eat orally. He know attends school (spec ed) and can run, jump, talk and eat orally. I would love to talk to you to give you support and let you know what we found helpful during the early weeks after his injury. You can email me at Taffera@aol.com and I will send you my number if you are interested. Please know that you are in our daily prayers.

    Sherri

  5. Praise for a good day for Claire!!! I’m glad your family had some time together tonight. Praying for continued progress for Claire and praying for her caring family.

    Love,
    Susan

  6. I learned of Claire at a church service in Colorado Springs, CO. I have followed your blog daily since that day. I pray everyday for Claire to be healed and for your whole family to be touched with love. I couldn’t even imagine what you have gone through & continue to go through. I have a 3 yr old and I couldn’t imagine. Little Claire has blessed my life with looking at my daughter every day and taking heart to enjoy every minute with her.

    Love & Blessings to your family. And let the Lord’s light shine on all of you.

    Blessings-Cassandra I.

  7. Things are sounding positive, one step at a time. Also sounds like you have a great support team….Lori is a great example. God continues to be with you all.

  8. The picture of Tiffany and Claire is so beautiful. I can see Tiffany’s heartache, but at the same time, I can see the deep motherly love. You continue to be in my daily thoughts.

  9. We strengthen you with our love and support. Claire is on our hearts daily and we continue to bless her, asking the Lord to heal her fully! We praise Him for each and every victory on this road to recovery!

  10. Absolutely heartbreaking. Poor sweet Claire…what an angel. I have been following your blog and I am repeatedly heartbroken everytime I read an entry. I cannot imagine what your family and your beautiful, sweet Claire must be going through….what a terrible terrible tragedy. I know that it was a near drowning, but what on earth lead up to that point? Was there not a fence around the pool? Were the people that were suppose to be watching her temporarily distracted? Did her flotation device fail? Please forgive me if I am being too forward, but I cannot help but wonder what led up to Claire’s near drowning.

    1. Thank you for your concern, Melissa. Quite a few factors contributed to the accident, but the details are, frankly, still too painful for discussion. The “placing blame” trap is all too easy to fall into, and ultimately pointless. The accident was just that – a terrible, life-changing Accident. Thank you so much for caring for our family as we all try to leave the past behind so that we can focus on Claire’s future.

    2. Tyler, Tiffany, Autumn & Heidi (and to all those closely impacted). Listen to only the positive words you need to hear from all those who love you, whether we know you or not. Hugs to Claire.

  11. You really are such a lovely family!I know the pain of this happening to your precious daughter is unbearable. She is lucky to have such an amazing support system and I pray for the day that you see real progress with her! My cousin’s 17 yr. old daughter suffered an AVM (aterio ventricular malformation) that was like a time bomb waiting to go off one day (in your brain since birth as it is a congenital defect) and has been in a medically induced coma for almost 3 weeks now. No communication, no real progress….just the waiting game-altering meds to keep enable her brain to heal and keep her sedated with all the swelling. No one knows what damage lurks inside. I can only imgaine that your life is the same right now. I am so sorry that 2 amazing girls are in this limbo. Prayers and HUGS to you all today!!!

  12. So many positive, good things are happening along this path for Claire and your family. My thoughts and prayers continue your way.

  13. Thank God for Lori. My best friend Debbie adopted 3 babies from 3 different families and they all became autistic, each developing different attributes of autism; it was a huge challenge. Autistics don’t tolerate change so Debbie was fortunate that their teachers volunteered to babysit them. When they need dental care, UCLA has a program that sends out to their home area the same dentist each time. Prayers up!

  14. So relieved to hear that Claire was more balanced and also that you all got a break. Have you all been playing music or singing her favorite songs? I strongly believe in the healing power of music, and the power of a mothers lullaby to her child…I have been away from the computer for a long time and so relieved to hear that little Claire is recovering…peace to you all and we pray for claire and your family every day

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