Tuesday, July 13: Update

Claire’s beneficial pool visit last week was not a predictor of today’s trip. Things didn’t start off very well. The warm pool at the rehab center was out for the count: a biological attack made it unfit for service. So Claire was relegated to therapy in the large pool which is about four degrees cooler. Those four degrees were very important degrees to Claire. She voiced her displeasure for the first half of the session before finally moderating her body temperature and calming down. But Murphy’s Law says that what can go wrong will go wrong. The temporary calm was soon disrupted when the fire alarm system sounded in the rehab center. The therapist scrambled to cover Claire’s ears while we retrieved towels to wrap around her head. It was loud. And it lasted a long time. The alarm finally retreated and Claire finished out her session. It set a bar that we hope is not matched when she returns tomorrow.

Despite the hardships we were still appreciative that Mary, our therapist, got Claire to calm down and protected her in the water. She is great with Claire and we’re lucky to have her working with Claire.

Claire’s walk today was less eventful and had a calming effect on her. We made two laps around the OCH campus before Claire let us know she was done and ready to head back inside. We met with the speech therapist to discuss strategies to help minimize the strain in her facial muscles. Claire has been tensing more on the left side of her body. This is influencing her facial muscles as well and causing her jaw to set unnaturally to her left. We learned how to massage her face, focusing on her cheek and jaw muscles to help alleviate the pain in those areas. After working with her today, her mouth is more relaxed and not as tense.

We discussed new treatments for Claire’s muscle spasticity today. We have three options available to us, one of which was nearly performed before leaving Medical City. The most invasive option is called the ITB pump: it is a Baclofen pump that is surgically planted in Claire’s abdominal cavity and feeds Baclofen directly to her spinal cord. This is the option intended to treat severe spasticity. Claire does not have severe muscle rigidity yet, but it is possible that it could develop. Tiffany and I and the doctor think this is an option that should be explored further down the road.

Because we don’t know whether Claire’s spasticity will improve or degenerate, we still need to employ a strategy that minimizes the downsides and equips her to perform well in rehab. The best tactic we feel for that is a combination of the second two options: phenol will treat Claire’s lower extremities and botox will treat her upper extremities. Both procedures are minimally invasive and lasts for up to six months before a renewal procedure is needed. This should give us the bridge we need to evaluate whether Claire’s spasticity is a permanent effect of her brain injury or a product of her brain calming down and will improve with time.

We continue to learn new aspects of our new life and how it will shape our near future. It is a daily battle allowing ourselves to grieve without succumbing to debilitating fears. It’s difficult to be positive with Claire when more sinister thoughts creep at the corners of our mind. The struggle to remain truly positive and speak encouragement to Claire leaves us exhausted at the end of the day. Reading your comments helps us renew our strength and prepare for the nights. Thank you for your support.

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38 thoughts on “Tuesday, July 13: Update”

  1. I keep praying that Clair shows aprovement every day .
    She has come a long way . As all of you have . Keep Strong.

  2. We are praying daily for Claire and her continued recovery. Having worked with Brain injured kids as a PT years ago, I can totally emphathize with you and what you are going through. Just remember that the brain is very pliable in kids and it sounds like Claire is quite the fighter. The nervous system is quite amazing and there can always be times of improvement, so never give up hope. We pray that God will continue to provide you all with what you need for each day and that you will trust in Him to comfort you and give you strength for each day. He is walking beside you through this all and he is cradling Claire in His Arms!

  3. Addison (4) asks me about Claire at least once a week. We have prayed for her so much and will not cease… Thanks for taking the time to update, it truly helps guide my prayer time. Blessings to you ALL!!

  4. I’m so glad she enjoys those walks. It’s important to take notice of the things that Claire enjoys since therapy can get repetitive at times. It sounds Claire has parents who really care about her well being to the core. I really enjoy reading the updates. Hopefully it’s therapeutic for you!

  5. You don’t know me but I learned of Claire’s story via a dear friend of mine in California. I have been following your family’s journey since it’s beginning and have included you all in my daily prayers. How lucky Claire is to have such devoted loved ones, so committed to her recovery and care. You inspire me every day and remind me of what the human heart is capable of even in it’s darkest hour. I pray knowing that our good God holds you all in the palm of His hand brings each of you comfort in the days and weeks ahead.

    Blessings and peace to you…….

    Cindy Emery
    Anchorage, Alaska

  6. I so understand your struggle to remain positive. I hope that a month from now, you read your posts and marvel at how far you’ve come. The hardest part for us in our brain injury journey is regarding the permanency of situations – do we deal with horrible seizures forever, or is it merely her brain recovering and growing? I remember our daughter being “permanently” curved into a “C” shape – we thought that’s what our forever looked like. It was a phase – as her brain settled down, so did her posturing and movement disorder. Nobody could have told us at the time that our daughter would overcome those physical obstacles – we had to experience it for ourselves. And likely, we wouldn’t have believed them anyway – so deep we were into our grieving process.
    I remember a particularly hard day, when our neurologist let “poor prognosis” slip from her lips – she left and my husband and I cried. One of the nurses came in and gave us supreme heck for letting this doctor blow our our “candle” as we’d maintained such positivity until that point. She just kept saying, “She doesn’t know. Nobody knows but God.” Then she told us many stories of brain injured children who one day spoke, or who walked out of the hospital after months in a coma. It was just what we needed……to be given supreme heck by a formerly grouchy, old nurse. We smartened right up. And now, it give us great joy when our little “poor prognosis” struts into this neurologist’s office and throws books all over the floor and runs away laughing.
    We’re all with you….cheering you along every step of the way.
    Not that you have time to read, but Norman Doidge’s “The Brain that Changes Itself” is a great read.

    1. You have encouraged me greatly. Thank you so much for sharing. As Claires ‘nana’ i have waled in the strength of the Lord this last 6 weeks.. He has been so faithful hundreds of ways. I will be returning to CO. This Sat. And though it will be awesome to be reunited with my hubby and best friend, my heart aches to leave them. Your post was tremendously encouraging to me personally. I pray that when I return sometime in August We will all have the joy of noting marked improvement for sweet Claire.

      1. I’m so glad that you feel encouraged by my post. It’s so difficult to be where you’re at right now, and I know how much pain I felt when night fell over the hospital room, and it was just me, the buzz of machines, and my computer. I searched for blogs that would inspire me to maintain hope, but at the same time, I was upset that someone else’s child had already been given a miracle – horrible as it sounds….their child was already “better” while mine was unable to smile, or even elicit a response to pain. We have no family here either, so when my parents or sister flew home, it was more difficult for them to be away than to witness the everyday sadness at the hospital.
        I wish that I’d documented with pictures on my blog so that you could go back and see what things were like back then. It might help you to see.
        I pray that you will see tons of improvement in Claire upon your return!

  7. And the comments and prayers will continue… We (collectively the people your family has touched) will continue to pray and offer our support. Again, you do not know me our my family, but from day one when we first heard of Claire’s accident, we prayed and honestly felt that she would be okay despite the uncertaintly. I write to you today, with that same feeling of certainty that Claire will be okay. Call it prayer and an overall belief in that good things happen to good people, but the certainty is there. I specifically have been praying for one request… ever since you posted a comment mentioning how you and the girls miss Claire’s voice, I have been praying that you soon will be able to hear her voice and she only continues to heal. Go Claire! We’re fighting along side you!

  8. Dear Tyler and Tiffany,

    I realize it’s one more drain on your already stretched time and emotional energy to log on and send these reports. Thank you so much for making the effort to do it. You can’t possibly imagine how many people are moved by your words and pictures to continue praying.

    I assume you have a stat counter that lets you know how many people stop by, but I just want you to know that the day you posted a link to my blog, I had by far the most traffic I’ve ever had. I’m sure the folks who clicked over represent only a fraction of those who read your post that day. It blessed me so much to think that many hundreds of people are holding you all before the throne, and I believe that when they pray for Claire, God also touches their lives in beautiful ways. That doesn’t take away the pain and stress of moments marked by too-cold water or fire alarms, but I hope it’s a thought that brings you a comfort of sorts and a deeper sense of God’s purpose in all this.

    I pray God fills you with peace that passes understanding. When sinister thoughts creep in, may you have the power to take them captive. May you grieve well and hope well and find all the faith and strength you need to trust in a God who loves your daughters more than you do.

    Continuing in tender, affectionate prayer,
    Jeanne

  9. We hope and will pray that Claire will have a more calming and therapudic pool session tomorrow!!!

    Even on these tough days God’s will is present! He was just obviously trying to tell all of you the pool was just to darn cold!! 😉

    Our thoughts and prayers are with you and your entire family!! Sending positive energy for a calm and restful night.

  10. Thanks for all the updates and for letting us see into your daily life as Claire continues to heal. You don’t know me, but I have been keeping up with Claire’s story since the beginning. She has come so far in her recovery and I know that she will continue. Never lose hope and stay strong. Get excited over the little things! She will feed off of your excitement. I am a special ed teacher and have seen great success in students with brain injuries. I have two students who also do water therapy and have great results. I’m sorry to hear Claire’s therapy was a little rough today, but it will get better. I hope Claire gets to go home soon so you and your family can be together and continue to grow stronger. Sending positive thoughts your way!

  11. Tiffany & Tyler,

    I’ve read each post here and continue to pray for you and your family, for sweet Claire, and the doctors, nurses and other staff at OCH. I pray that Claire will continue to make great strides in her healing and recovery. I pray for your continued courage, peace and hope as you continue on this journey together. Your words are open, honest, at times heartbreaking, but always beautiful. So many people are reading these entries and are praying for and thinking about all of you. Thank you for sharing your experience and thoughts here with us in words and photos. Much love and many blessings to you all.

  12. Just want you to know that when I wake up in the middle of the night, the first thing that pops in my head is Claire and I immediately pray for her and you. I remain devoted to the idea that there’s a miracle in the offing. God can do it, and it may happen tomorrow. That is what drives my prayers concerning her.

  13. You seem to be operating on so many levels as parents and caregivers, full of hope and faith, yet cautious, as you go through each moment with Claire. I marvel every day that you can live a “normal” life with colleagues and other outsiders, yet you are are constantly in Claire’s world. You can share some of your lowest points with complete strangers like us and still retain a calming influence on your close-knit family. You’re learning more than you ever thought you would and acting on this knowledge with both confidence and trepidation.

    Tyler and Tiffany, you are indeed an inspiration to all of us. You’re doing so well with this new life, and I feel that you’ll grow even stronger as time goes by. You seem to own it now, which is half the battle. Your input is strategic to all the therapies and other considerations, and you’ve already bought the best therapeutic objects for your home that will help you do everything possible to maximize Claire’s recovery.

    Claire will improve SO much — you can count on it. God bless.

  14. I heard our pastor quote Ps. 139: 7-12 today and thought of you–how God meets us in our pain and the darkness is not to Him. We continue to pray and believe for improvements for “little Claire” as we call her.

  15. I hate cold water, and fire alarms do horrible things to my brain. I can’t even imagine what they do to Claire’s body and brain. I’d scream too–right now it’s the only way she has to communicate. Glad the walk afterwards helped. Blessings and prayers to your whole family as you move into your future with the Lord by your side. Susie, enjoy your time at home with Tim and your best friend. I am sure you will see the little steps of improvement when you return. You have been such a good Nana for Claire all these weeks! And to Autumn and Heidi too, providing a rock of stability and familiarity to them among all the chaos and change.

    Love,
    Dodie

    1. Thanks Aunt Dodie, also just to be sure the world knows…when I said’hubby and best friend’ they are one and the same my Tim. Love to you- Susie. 🙂

  16. I am motivated tonight to write and tell you that a college sorority sister that happens to be one of your neighbors one night when this all began posted to pray for Claire. I live in New Jersey with my husband and two children and pray and think about Clarie and your family every day. I have been so drawn to you story. Strangely i eagerly await your updates and I am in awe over you raw honesty and true courage. I pray for the day that I open the update and your prayers and everyone else’s have been answered and there is an awakening. I pray everyday that you find a balance between fear/grief and the little joys the day may bring towards progress. I have since signed my kids up for swimming lessons and have become more diligent in watching them in the pool. I hope to one day buy the book of your story that leads you back to seeing your baby Claire awaken to the beginning of a new journey. I am spiritual, but not to religious, but I am dedicated to continuing to pray for you to have the courage to have continue hope along with acceptance to some painful realities. Thank you for telling your story and for bringing the courage you both have as parent because as parents sometimes that is all we can have for the sake of our children.
    Warm wishes and prayers of hope,
    Donna, New Jersey and mom of Julia and Ryan

  17. Hi Tyler and Tiffany,

    I’ve written once before. Claire’s situation with muscle tone sounds a lot like my son, Samuel’s. When we were in rehab, Sam did a lot of posturing, but his spasticity was not severe enough to warrant a Baclofen pump. Sam was on oral Baclofen for about six months after his accident – most of that time on the maximum dose. But like you mentioned in your post, his brain healed to the point that the Baclofen was no longer needed. Also, while in rehab, Sam had phenol and botox injections. The phenol was amazing for Sam’s inner thighs – they opened up immediately after the injection and remained that way for nearly a year. Anyway, I just wanted to encourage you in your journey with Claire – God has truly created an amazing organ in the brain and she still has lots of healing to do! Praying for you on your journey and please know that if you ever have questions about our experiences in Sam’s recovery, I will be happy to help if I can. Blessings to you!

    Kahne Seidel

  18. Claire is precious and close to our hearts. We undoubtedly believe that she will be fully healed. Stay strong. Thank you for the updates each day. Sincerely, the Akin family

  19. Everynight as I sit and read your updates I pray for full restoration of your beautiful little Claire! It is so hard to live in the moment of what needs to be done and also live in the hope that God will heal your baby. I was strong. Maybe a little to strong and many of nights you could find me in a ball on the floor of my daughters room bawling, pleading, praying, that God would give us a miracle.

    Three years later I can see that God did give us MANY miracles. Makenzie can not walk or talk but she is so perfect. I still pray for healing for Makenzie and trust that God knows what he is doing! It took me three years to get here and it was a slow, hard road, but my life has been blessed in ways that I could have never imagined.

    This is hard stuff but it does get better! It really sounds like you are doing a great job getting Claire what she needs now and now being the important word because later she may not need any of it and that is the prayer I continue to pray over and over and over!

    Makenzie has had both phenol and botox. They are both a great tool and worked very well for Makenzie. I say worked because we haven’t needed to use either in a very long time. Makenzie’s tone was very similar to Claire’s from what I can see in your pictures. Today Makenzie has full range in every part of her body and is on no meds for tone.

    Makenzie also loves the pool. She loves the WARM pool! We go to the pool very often theses days because she is so free while in the water. For the non therapeutic pool I bought Makenzie a wetsuit and that seems to help a TON if the water is not warm enough. Also I woud encourage you to look into the Waterwaybabies head collar. It allows the head to stay out of the water while being able to concentrate on the body and give the child freedom to move in the water better. Their website is http://www.waterway babies.com. Makenzie LOVES hers! I just wrote a post on Makenzie and water therapy with a video of her in the pool at: http://www.makenziesmiracle.org/2010/07/doggy-paddle.html

    Praying for Claire
    Believe… Prayer Works!
    Tons of Hugs and Prayers from Colorado!

    Pam and Makenzie

  20. Somehow I have a feeling that the therapy session Claire experienced today was as traumatizing as it will EVER GET, for her and for you guys too! As yucky as it was, I’d like to conclude that it makes all future sessions downhill from there! Lord willing, future sessions will reveal baby steps of progress and produce triumphs for you to rejoice in. ((((Big huge hugs)))) Praying for peaceful sleep for all of you.

  21. Just remember, fear is not of God… even in our hardest times… in your hardest times, He is your comforter, your hand to hold, your shoulder to lean on and cry on. God can handle your anger, your pain and your grief. He is bigger than all of that and wants you to give it all to Him. I know those fears that creep into the corners are easy to give in to at times. That’s when I reach up and grab onto God’s huge hand and let Him lead me. He walks me right away from the fear and towards the next step, whatever that may be. He loves you and is with you holding you tight in His arms through all of this, just as He is holding Claire. Our prayers here in South Dakota continue constantly for all of you.

  22. Please know that you all continue to be in our thoughts and prayers, everyday. May God grant you the strength and patience you’ll need during this long hard road to recovery. God bless and guide you all.

    Love, Kitty Dawson and family

  23. Love you guys. Sorry you had such a rough day. I pray that today will be much better. It makes me sad and angry that Claire has to go through so much. Praying for you all…
    Michelle

  24. Hey guys! I just wanted to let you know that my husband gets botox injections in his arms every once in a while. He was hit by a car when he was 16 and suffered a massive brain injury. As a result, he has muscle spacticity in his left arm. The botox injections were just what he needed to help relieve the spasms, and for him each shot lasts for better than a year, sometimes two. Incidentally, insurance companies see red flags when ‘botox’ comes through. Be prepared to argue because they always reject us the first time and then pay when we explain the purpose.

    As an aside, when my husband was hit by the car he died at the scene. A paramedic at was at the Circle K near where he got hit and brought him back. He was in a coma and the doctors wanted to harvest his organs but thankfully my mother-in-law wouldn’t let them. His prognosis was poor, to say the least. Now we have been married 13 years, have a beautiful daughter, he has a bachelor’s degree and works as an insurance agent. No matter what medical personnel say, this is all in God’s hands and I know He is watching over you and your family. Still praying!

  25. I just finished a Bible Study at my church. In it we discussed the story in Exodus of Moses and the Israelites and their 40 year trek through the dessert. The lady who did the Bible Study (Patricia Shirer), her basic idea she was trying to get across is the fact that all of us face wilderness times in our lives. Times when God has lead us out into the desert and we feel lost and wonder why we can’t take the shortest route from point A to point B. But God has a plan, and the reward at the end always makes the journey worth it. During the whole Bible Study I kept thinking of your family. I believe you guys are in a wilderness at this point in time. But don’t worry, one day you will come out of it, and the end reward will be worth it. Just trust in Him! Best of luck, I pray for you all every day…

  26. Please know that whether we write everyday or once a week, you are always in our thoughts and prayers. I wish I could do more to help your pain. God Bless.

  27. Claire, you are one tough cookie.
    So many new options now – and they keep getting new ones.
    Care for the caregivers;
    love, hugs, and prayers to all.
    Susan Davison

  28. I am in awe of how God is using you in the midst of the pain and the hope! Your on-going story draws many to you. Together a bigger story is written. Bless your night and your day.
    Oh, how hard it must be to wait through the days and nights. Sense WILL come out of this – keep trusting.
    Love, Lynne

  29. Boy taking things one day at a time takes on a whole new meaning.
    This journal makes me appreciate the complexity of the human body n the role the brain & nervous system play in conducting it like an orchestra WoW!!! I feel overwhelmed just reading it.
    Please thank Mary again from us; we are just SO SO appreciative of those who go beyond “their job” into the realm of amazingness:)))))
    We strong but many times we’ve needed to constantly pray for God’s strength, God’s grace, God’s e-v-e-r-y-t-h-i-n-g just to crawl thru it…and then we noticed we weren’t crawling anymore but walking, then playing //
    Prayers up! xo

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