Thursday, August 12:Update

It’s a down day. Grapevine has reintroduced the Baclofen pump as a recommendation for Claire. The physical therapist explained that she is unable to break through Claire’s muscle tone because of the spasticity; and if the therapist can’t break through the tone, then we don’t think Claire can either. This could mean that a lion’s share of Claire’s pain and discomfort is coming from her rigidity. In normal English Claire is very tight on her right side. She has large muscle knots in her left calf, bicep and trapezius (neck) muscles. Most of the therapy session is spent just trying to stretch these areas. We and the therapists feel that we’re racing on our hamster wheel, and we’re just not gaining any ground. Enter the Baclofen pump.

We have seen the Baclofen pump as a solution of last resort. There are also some complicating issues that may preclude Claire from having it anyway. But Claire’s new occupational, speech and physical therapists have all mentioned the pump and gently prodded us to consider it. I think it’s the gentle prodding that is causing more headaches. We’d really like a professional opinion one way or another with an explicit discussion about the risks, downsides and upsides. We appreciate the consultative approach, but we’d like an expert to stand up and tell us what they think is best for Claire. Because that’s what we’re interested in. If we’re at the solution of last resort and that is what is going to help Claire improve, then we’ll take that path.

The pump still causes its share of trepidation. We don’t like the idea of Claire going into the operating room again. And we also want to be assured that the pump will work, that we’re not assuming the risks for a possible solution: it needs to be a real solution that will accelerate her recovery, or at least get it moving again off this plateau. Whether it will or not has yet to be explained to us. Claire is scheduled to return to Dallas OCH on August 25th for a meeting with her advising doctor. We will be discussing the Baclofen pump then and seeking the expert’s recommendation.

Until then we will continue on the same path. We feel hamstrung knowing that there always exists the potential that we could be doing more and we just lack the knowledge and resources to draft a comprehensive plan of attack. We’d like to help Claire break out of the cycle of pain causing tensing, causing more pain, and so on. It breaks our hearts to see what her body is doing to itself. We hope a solution presents itself soon, whether it’s the Baclofen pump or something else.

Today marks the end of another formal therapy week. We’ll continue  working on Claire through the weekend and prepare for next week’s events. My mom gets her on Tuesday, shortly after Claire has her second MRI. We are approaching the MRI with mixed feelings and we haven’t decided yet whether we will request the results or choose to keep them out of our knowledge set. We know that if the results come back negative, it won’t change our approach or our hopes for Claire’s recovery. It would only make it more difficult to remain hopeful. So since it won’t change how we’re going to behave, the knowledge becomes superfluous. We will be wrestling this issue over the weekend.

Thank you for continuing to pray for us. We need your prayers over the next few days particularly as we start to evaluate some bigger decisions. Enjoy your Friday and goodnight!

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32 thoughts on “Thursday, August 12:Update”

  1. I will be praying for you to receive the knowledge you need to make the decisions you have to make regarding Claire’s ongoing therapy…. it’s tough to be in the dark surrounded by people trying to be gentle when you really need someone to just stand up and tell it like it is. I am also, as always, praying for you all to be able to get lots of rest and to feel the hands of God surrounding you as you deal with the day to day issues in your lives.
    *Lots of Hugs from South Dakota!*

  2. I pray that God guides you to make the best decision for your beautiful daughter. My heart aches for all of you. You are always in our thoughts and prayers. God bless Claire and your family.

  3. Thank you so much for sharing so boldly and in so much detail. I will take all of this to prayer. You are a precious family.

  4. We continue to think of and pray for your family each day. Your daughters are very blessed to have parents like the two of you.

  5. I’m sorry for your down day. I hope you get the answers you need re: the pump. I can imagine the hamster wheel you’re on with the rigidity/spasticity – so incredibly frustrating.
    Many prayers on the 2nd MRI – I’ve never seen my daughter’s, nor do I want to. I want to picture her brain as whole and perfect as it was when she was born – yes, I’m a dreamer. Whatever you decide to do will be the right choice.
    My heart aches for you as well.

  6. I pray for all of you as you face some tough decisions in the days to come. Remember that you are held in the palms of God’s hands as you go through this hard time, as you have been so far, and will be in the future. I am so glad your mom will be with you, with her wisdom. Again thank you for sharing your frustration and fears and vulnerability with us. It helps to know just what to pray for, and I hope it helps you both to have put in down for us to read. Blessings, and sleep well. Love, Dodie

  7. You are all working so tirelessly. Don’t forget to take some well deserved rests. God will lead you where you need to go so you needn’t worry.

  8. I understand wanting medical professionals to give clear guidance and direction. My husband and I have been there with one of our twins who was born with a birth defect of his skull that has not responded as desired to surgery and which has now caused issues with his development. I pray that you feel a peace so that you have a clear direction to head and I pray for your desicion with her MRI. My sister told me this once when we too where facing indecision from our son’s medical team – she told me we were our son’s quarterback and we had to be the leaders of this “team.” I am impressed at your hard work and diliagence with your daughter’s care. I pray that you can lay it all at the Lord’s feet and let Him bear your burden. I am praying for Claire, and both you and Tiffany and your other daughters. You inspire me to push harder when at times I complain that it’s not fair to have a child with special needs or when I feel down about the situation with my son. Claire is so blessed to have such wonderful parents!

  9. Praying for God’s perfect wisdom to be yours as you contemplate all the upcoming decisions that need to be made. May He be your ultimate guide, and speak loudly and clearly to you as to how you should proceed.
    Praying for a restful, peaceful and fun weekend for your family. I know your normal life has changed dramatically, yet I wish for you to find joy and fun in your family life once again.

  10. Our hearts feel heavy as we read your update today BUT we also know WHO is in charge and we know what marvelous things He does. We continue to pray that the medical staff guides you in the direction that is best for Claire. with our Love and ever on going Prayers. Barb and Frank

  11. God will guide you, guys, and the right decision will come.
    I hope (and pray) that you have a better Friday.
    May God bless your day!

  12. Tyler, have you had a chance to look into horseback riding therapy? This is indicated as an non-surgical alternative for spasticity. I had mentioned it to you from Jeanne Damoff’s book, and upon reading your post, I immediately began research on the baclofen pump, and came across this site, which mentions horseback riding therapy. I am sure you have done so much more in terms of research and you have tons of people tossing information at you in order to help with Claire’s recovery. Hopefully you will find these links helpful in pushing Tiffany and you in a direction that will provide you with comfort in your decisions.

    http://www.neurosurgery.pitt.edu/pediatric/spasticity/nonsurgical.html

    And here is a link to Therapeutic Riding in Texas… scroll down a bit and there is a long list, with places near by!

    http://www.texashorsemansdirectory.com/TherapeuticRiding.html

    You continue to be in my daily thoughts and prayers.

  13. I ask you to take a look at the link that I include below, not as an attempt to dissuade you from considering the pump, but because I think the point about reviewing the printout after every adjustment is an excellent one to keep in mind. You seem like wonderfully attentive and engaged parents, but sometimes a second (or third, or fourth) set of eyes doesn’t hurt. 🙂

    When God created that beautiful little girl and knew she was going to need a special level of love and care, He knew that your family was exactly where she needed to be. She was entrusted to you on purpose, and I know God couldn’t be more pleased with how you’ve stepped up to the challenges. You’re all very blessed to have each other, and it seems you have a nation of people lifting you up in prayer every day. God bless you, and thank you for sharing your experiences with us.

    http://www.nbiadisorders.org/baclofenpumpcaution.htm

  14. I know you don’t know me, but I’m been following your blog (I got the address from a friend) and have been praying for you guys. When I read your post today I was reminded of a Veggie Tales song. I know they’re written for kids, but I think there’s a lot of wisdom in them for grown-ups. The song I thought of is: “God is bigger than the boogie man.” I think the concept covers anything that makes us apprehensive, and I know that you have lots of hard decisions coming up, but God is bigger than any of the fear and uncertainty that you’re facing. Sometimes it’s nice to have a catchphrase to think of in those times, and humming a Veggie Tales song might also keep your spirits a little lighter 🙂 Continuing to pray.

  15. I don’t know if this will help or not, but are friend of ours had a severe brain injury MANY years ago. They did this intensive therapy called “patterning” that brought on incredible results. Let me know if you would want me to get more information about this. I don’t know much about it, but I do know it involved a volunteer for each of his limbs moving each limb in a specific pattern to help the brain recognize the movements. You have been in our prayers and I continue to follow sweet Claire’s road to healing. You are doing an amazing job as parents!! Stay strong!

  16. Hello. I am Courtney Toomey, Julie Nickell’s sister in law. I am a resident physician, so I work quite a bit and haven’t commented on here. I read your comments daily, and your family truly inspires me. I have a daughter about the same age as Claire, so your story has really touched me. I am a resident in PM&R (Physical Medicine and Rehabilitation). We are trained to work with patients such as Claire. Although I as still in training and I recommend that you talk to Claire’s physicians who know her entire medical history, I can say that I would recommend the baclofen pump. I have seen amazing improvement even within a few hours of it being placed. It is a wonderful medical advancement. I know I do not know you or your daughter, but I wanted to give my opinion. I look forward to seeing how things progress. I pray daily for your entire family.

  17. Also, I forgot to mention, I believe that the baclofen pump will greatly help with any physical pain that Claire might be feeling. I HIGHLY recommend doing this, but it is a decision that you must make for her, not me. I hope that your physicians do a good job at informing you of the pros and cons. I feel that the pros greatly outweigh the cons in this situation.
    -Courtney Toomey

  18. I’m sorry to hear you’re having to deal with high tone but, unfortunately, it is pretty normal on the journey of brain injury.

    Have you considered hyperbaric oxygen therapy? That really helped Christian’s tone.

    But the biggest healer (besides, the Almighty, of course) was time. Tone changes over time. And Christian was a stiff little board on both sides right after his accident. But as time went on, after stretching, intense physical therapy, more stretching, and HBOT Christian’s tone is actually not that bad and no where near as severe as it was just after his accident. We also recently did botox in his legs and that’s helped wonders, too.

    These are hard decisions we have to make and sometimes we wish someone else would make the decisions for us. I pray that God gives you clarity and confidence in your decisions.

    And, as always, prayers for continued healing for Miss Claire.

    Sincerely,
    Christian’s Mommy
    http://www.christiansjourney.org

  19. Definitely praying for you and with you as you make these difficult decisions. We pray for the best solution for Claire to be revealed to you, the right guidance from your doctors, and wisdom, strength and peace for you, Tiffany, Autumn, Heidi and Claire each and every day. So glad your mom will be back out to help. Love and miss you guys.

  20. I am always so inspired by your posts….you just want Claire better and will do what it takes, it is so amazing. I too wish doctors would just tell us what to do….what is going to give the best results. I think your family is an inspiration to so many. I so wish I could be a volunteer and come visit Claire….I live in Toronto which makes it difficult..I hope that your community visits Claire – anyone can! If people cannot afford to donate money, toys, etc, they can afford to volunteer time!!! Come on people! Volunteer a few hours a week, month, etc. Whatever you can! This family deserves it!!!! I just think the world of your family and am so sad that you have been through much! Praying for a speedy recovery for Claire! She is too sweet!

  21. We continue to pray for you all! I remember when our daughter had a second EEG after her stroke and she had started to make improvements by then. My husband and I so wanted those results to say her brain was normal. I remember my husband being initially disappointed when it came back abnormal. I told him it didn’t matter what the EEG said, miracles happen and this is even more of a miracle that she does so well inspite of what the scans all say, it’s testimony to a God who can heal. We just keep working with her and pushing her because we don’t know what Gods plan is for her and the same is for Claire. God is so much bigger than an MRI and we will keep praying that He restores her in His time. You guys are a phenomenal family and I love how everyone works so hard together. Keep fighting for Claire!

  22. i can appreciate your not wanting to know the results of the MRI. i will be praying for you over the weekend to feel peaceful one way or the other.

  23. Continuing prayers for wisdom for you as you make decisions regarding Claire’s treatment. Continuing prayers for Claire’s healing as well as for strength for all of you as you participate in the healing process. Your family is on the hearts and minds and in the prayers of so many!!

  24. In regard to Claire’s tone, I ask this knowing *nothing* at all about her type of injury, is acupuncture an option?

    Still hoping the best for Claire.

  25. James 1 says, “If any of you lacks wisdom, he should ask of God, who gives generously to all without finding fault.” I pray this for you and Tiffany. I wish so badly that I could come visit Claire.

  26. Hi,
    You don’t know me but I have been following your blog and praying for your family. I felt I should respond to this post because my mother in law had a giant aneurysm burst in her brain almost 9 years ago and when she first came home after 7 months in the hospital her muscles were very rigid and it appeared that she was in a lot of pain. One of the therapies that helped with the rigidity of her muscles was hyperbaric oxygen treatments. This is not covered by insurance but we found a clinic, took her to therapy a few times a week for several months and her muscles relaxed a lot. She also regained the control of her neck muscles. I believe that it greatly improved the quality of her life. I thought this might be something you would like to look into.

    Praying for many blessings upon your family,
    Melinda

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