Labor Day Weekend Update

The triple digit weather in north Texas has seemed to finally broken. Our resolve has not. Shaken, yes, but not broken. The daily battle to remain positive, patient and persevering continues to wage; with each passing day, it becomes a little more difficult. We find ourselves hoping to see something new, something that will bolster our resolve and give us strength for the next day. We were warned about these dry spells of little improvement, times when it seems Claire’s recovery would start to plateau. We knew they would come; we were still ill-prepared. When Claire is making progress and reclaiming pieces of her former self, our operational load is bearable: we work hard through each day knowing that we’re seeing improvement. During these times of seeming little to no improvement, we begin to wonder if were spinning our wheels. “Why isn’t she getting better?” we ask. Bill Murray said it better than I can in What About Bob: “Come on. I’ve come so far. I’m doing the work. Gimme, gimme, gimme. I need. I need. I need.” It’s a roller coaster. And it’s the worst ride I’ve been on and I want to get off. But I’ll stay on as long as Claire has to ride it too. I’ll stay on it for the rest of my life if it means she gets better. I wish it were that easy and transactional.

Since we hit this slower period, we’ve evaluated whether there are additional strategies we could employ. Last night I dreamed that Claire pushed up on her arms into a crawling position. I woke up from this enjoyable imagery thinking about what was missing from Claire’s routine. One thing I feel has been lost over the last few weeks is the testing of Claire’s limits. For the first few weeks after we got home everything was still new. We were trying new exercises and stretches and Claire was working hard. She was uncomfortable and she was challenged. I think we’ve retained the first part of that equations – Claire is still uncomfortable – but we lost the second part: the challenge is missing. I’m borrowing a page from kinesiosology and musculature: variety is better for muscle-building. Exercise routines typically hit a plateau period as the body becomes adjusted to the routine. The body requires a shock after two to four weeks of routine in order to increase metabolic process efficiency and become stronger. We’ve found that Claire’s body is still sore from general atrophy and the brain shock, but we’re not seeing real progress in muscle strength. Her arms have good range of motion, however, they are very weak and cannot support her body weight. We have no reason to expect that they would after an injury like this. But it’s our job now to get them back into shape. They won’t with our existing routine. So we took steps to augment that routine today.

Claire will start doing more challenging exercises this week. We bought a peanut ball this weekend so Claire can strengthen her arms and shoulders under her own weight. We’re also going to begin incorporating more strength building exercises for her legs and core. We’re going to take it slow enough to avoid strain, but push enough that Claire gets a workout. We hope that with the increased strength will come additional control and purpose.

Aside from those changes, the weekend was uneventful for Claire. My dad arrived yesterday for a short visit and that has been the weekend’s highlight. We’re sad that it’s such a short visit, but happy to see him.

We hope your weekend was wonderful. We thank you as always for your support. Enjoy your short week!

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26 thoughts on “Labor Day Weekend Update”

  1. Plateaus are hard. Thanks for being so honest about just how hard this one is for both of you. It must be just as hard for Claire, and for her sisters. But it sound like you’re on the right track, with new and different challenges for those muscles. I like that you’re prodded to do more research so you know what you’re up against, and what you can do about it. I’m glad your dad’s there, even for a short time, because it’s clear he’s a good perker upper for you. Blessings, prayers, and love to you all. Remember you’re all held in God’s large and loving hands, all the time, now and as long as it takes! Dodie

  2. Yay – so glad you’re the proud owner of a peanut! It’s worth every penny. One exercise we employed frequently was to straddle the peanut with Lola between my legs (sounds ridiculous given the size of the little peanut) and kind of bounce up and down. We used this very early on when she had limited neck control and tons of excess movements. It seemed to calm her down some days.It may take an extra person to help with positioning at first – until Claire gets the hang of it. Did you get the red one? It’s a great size for us.
    Good luck mixing up Claire’s workout regime – a very smart move!

  3. My brotherinlaw had a stroke, leaving him unable to speak and use his right side of his body. with treatments he was able to speak altho labored , and run 5 miles a day. Please don’t overlook this. You are in our prayers. Love you all!

  4. Thinking of Claire everyday still, even though I do not reply daily. You and your family are in my thoughts and prayers
    May God Bless you abundantly in this time of struggle and may you still experience his Joy and Peace.

  5. We’re happy to hear that you’re continuing to work to restore Claires’ normal functional abilities. We pray that you will keep on working with her and gradually challenging her to be able to do more to return to her normal living functional abilities. ( Just a layman’s view!) We think we’d keep challenging her to increase her level of accomplishment, at regular intervals.

    The Lord has a plan for her life; and if Claire were our child, we’d just seek each day to know what the Lord would have us to do to help Claire in that day to work to return to a normal way of functioning.

    We pray the day will arrive for all of you when you will, once again, have a happy, healthy Claire.

    With Our Love and Prayers in Him,

    Ken & Jana Kirkpatrick
    216 Horse Ranch Road
    Jesup, GA 31545

  6. Just wanted you to know that Claire’s been on my desktop for a while now and my prayers continue for her best. May God encourage and strengthen your family for the days ahead and give each of you the rest needed to press on. He is the power behind you and may you not just know that, but feel it.

  7. Just wanted to let you know that we are still here and are praying for Claire.

    I can hear the pain and desperation in your words and can remember being there like it was yesterday. I searched and felt the weight of the whole world on my back. What was I missing? What could I do that would help more? Why isn’t anything working.

    3 years later I am an a totaly different place. I still believe that God will completly heal Makenzie. I see the progress in her every single day. However, I now realize that God doesn’t need me or any one else for that matter to heal Makenzie. God has led us many places and I have followed his lead but the desperation is gone. It has been replaced by God given peace.

    We have done so many things with Makenzie. HBOT, Stem Cells, PT, OT Speech, mommy therapy, hippo therapy, water therapy, IMOT Neuro Suit therapy, ABM, DAN protocol, sensory learning, NACD, and supplements. We have been all over the country and to Costa Rica, twice, I have bought every kind of therapy tool thinking somehow that object would bring about healing.I have been there and can relate.

    I pray for full healing for Claire, Makenzie and many other kids I know and love. I believe God can and will move the mountians in our children’s lives so that they can once again be whole on this earth.

    Tonight I am praying for peace and rest for your family. You guys are doing a great job and your faith is amazing! God is listening and he will answer. In the meantime take a deep breath and know that wether or not you are doing everything right, God is there with Claire and continues to work healing in her regardless of what we do or don’t do.

    Keep hanging on! You are an amazing family!

    Tons of hugs and prayers
    Pam and Makenzie!

  8. Plateaus are so very frustrating and seem to last much longer than they actually do. The positive is that after the plateau you will likely see some leap in progress that you may not expect. Hang in there. My thoughts and prayers are with you and your family daily.

    Nancy

  9. I am glad to hear you looking for more ways to “push” Claire’s recovery. I hope the peanut helps her with her strength building. I continue to keep you all in my prayers!

  10. Praying for you as you are on this plateau, that God would continue to encourage you, to give you hope for the future He has planned for you and your family. Keep striving for more, and eventually Claire will start to show more improvements, I am sure of that.

    Your discouragement is perfectly understandable, and I can tell that you are a family that will not just give up and settle for anthing but the best that you can have.

    God bless you all as you continue to struggle through this valley.

  11. Still praying everyday that GOD will bring about a full recovery for Claire. HE has brought her this far, and I believe that HE will continue. Have hope:)

  12. Even though you seemed to be in a place with no forward movement…it wasn’t true. He’s given you the plan to move forward. Amazing!
    We love your spirit…you are all long distance runners.
    You stay in our prayers.

  13. I wish you tons of strength and guidance on this journey. I can’t begin to imagine what you are going through. My thoughts are with you all.

  14. A popular exercise package is P90X..it’s premise is dramatic muscle results from muscle confusion which is exactly what ur describing as missing. P90X has every conceivable type of exercise to continually trick the body, avoiding plateaus, building muscle quickly. Excellent direction ur taking!
    Hope ur Labor Day weekend was restorative n relaxing, even if fragments, moments.
    Praying for God’s strength n grace to keep ur reserves full:)

  15. Just wanted to let you guys know that I woke up yesterday (Tuesday) with you and Claire on my heart and prayed for you on my own and with my co-workers at church. Hoping that God gives you both peace and strength.

  16. Don’t know exactly how this works, but hope you’ll still get this message….How is Claire, and how are all of you?

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