Tuesday, July 6: Update

Claire will make her first return to a pool tomorrow. We hope Autumn and Heidi will be able to watch also. It will be therapeutic for all of us to see her in the pool again. It is a great opportunity to overcome some of our irrational fears in a such a controlled environment.

The pool therapy will be on Claire’s second day of decreased Ativan. Claire was much more alert today after halving the dosage for he first time this morning. We enjoyed seeing her eyes open for a significant day portion. Her agitation stayed static compared to yesterday and we hope the trend continues as we continually wean some of her medication.

We discussed her weaning schedule at our Care Conference today. We are very satisfied with the way the medical staff engages our concerns and suggestions. We had a lot of them today. We discussed nutrition and getting additional nutrients into her daily diet. We also discussed changing her feeding schedule to match a more normal cycle. We eliminated her 2:00 AM feeding and boosted the rest of her portion sizes throughout he day. If she handles this well we won’t have to get up at 2:00 anymore. We like that idea.

The Care team also gave us our list of equipment for home care. It was shorter than we expected. We liked that too. We have been hoping that the required equipment wouldn’t force us to get more living space: we want to bring Claire home to something familiar. So we are trying to avoid moving as much as possible. Today’s equipment list indicates that we can postpone or eliminate the need for a move.

We got further insight into where Claire is in the rehab process as well. The Care team is focusing most of their effort toward Claire’s medical treatment as opposed to pushing her rehab schedule. The doctors are waiting for Claire’s brain to calm down further before increasing her rehab intensity. This gave us clarity and helped temper our expectations for the next few weeks. It was information we needed to feed our patience which tends to wane over time.

We are hoping for another good night of sleep tonight. Thank you for your hopes and support.

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25 thoughts on “Tuesday, July 6: Update”

  1. This is for Claire,
    Each little tiny flower that opens, each little butterfly that flaps its tiny wings,
    The little baby that cries,and even the little girl that sings
    The Lord God made them all!!
    Claire your heavenly father has you in his hands, there is a season for everything, and you are making such good progress, I keep saying to my self, Come on Claire PULL Through,
    Im sending you tiny angel kisses and hugs your way
    May God continue to give you guys peace and comfort

  2. I wish this process was faster…I wish we knew the purpose of this…I wish no parent had to experience what you are going through…
    We love you guys!

  3. Oh! I am so glad they agreed to adjusting her medications! I hope you all do well with the pool therapy. I know it will be scary, but I too believe it will help all of you!! It is such good news about the equipment list. You all need familiar surroundings! This an exciting time in Claire’s recovery. I am prayerful that you will all be under the same roof soon!! Good luck today!!

  4. The pool therapy is a huge step for your whole family, but I believe that Claire will continue to amaze us all by how well she does today. When it comes time to set up Claire’s equipment in your home, let me know if you need any help at all. We are keeping your family in our thoughts and prayers!

  5. I will be praying for your guys…this is a big step. Don’t be surprised if the girls freak out a little bit. They may not, but it could be a trigger…for any one of you. It is good to face our fears. This will help you all to heal just a little bit more. it is such a slow process. My heart is with you.
    Love you all.
    Michelle

  6. Hey – big day. You can so do this. Know that you are in our thoughts every day – I know it seems as if life goes on for everyone else except you, but in reality, circumstances like this touch an amazing amount of people and the positive energy that is heading your direction is powerful stuff. I foresee little Miss Claire as the next Michael Phelps…stay the course. Sandi :o)

  7. We will praying for ALL of you as you venture into water therapy tomorrow for your sweet Claire. We pray that the very thing that hurt her help make her well. So many times in life the ugly becomes the blessing. We pray that will absolutely be your families case with the water therapy.

    We pray for Claire daily. The updates that you give certainly help us to pray specific for her needs as well as the entire family.
    We worship an Awesome God- He will not leave you or forsake you!!

    God Bless you today and give you strength, wisdom, comfort and courage.
    In His Love
    Wendell and Linda Hollinshead

  8. All the new adjustments seem so positive — the decreased Ativan creating a more alert and less agitated Claire, no more 2 a.m. feedings allowing you parents a bit more rest, not as much equipment at home making one less huge problem to solve about moving, and pool therapy bringing about a wonderful therapeutic event for the whole family!

    And it’s so good to find out why the doctors aren’t pushing her physical therapy as much as you’d like. They certainly know their stuff, and that, along with incorporating your concerns into their actions, should give all of you the extra boost you need.

    Best wishes for all the new turns around the corner and love and hugs for the Martins.

    1. Thank you for the encouragement. It’s so important to think on all the positive things happening around us. Thank you for bringing it all to the forefront of my mind. It gives me strength for the day.
      Tiffany

  9. I have been following your entries for a while now, as it was passed along from a co-worker asking for prayer requests. Please know that although you don’t know me or my husband, we are partners in prayer with you and your community. We don’t miss an opportunity to get an update on Claire, and she is prayed for on a daily basis.

    We also pray for you and your family. While my experience is different, I have been through something similar with a family member, and I know that it is a tough road. Just know that you don’t walk it alone.

    In Christ’s love,
    JW

  10. So thankful that you are able to communicate so well with your Care team.I know how important that is and that they are listening and able to answer your questions.I know you have important question.

    Praying for you,
    Sue Wear

  11. I was thinking about all of you today…I hope the pool therapy went well. We continue to pray for Claire and your family daily and rejoice with each new hurdle Claire crosses. Prayers will continue! Tell Autumn, and Heidi, I look forward to seeing them in the fall 🙂

  12. Our family is still praying for Claire every single day! I have not missed a Claire “update” yet and think of her and your family often! So glad that you are getting some “positives”! We look forward to seeing her progress get better and better and hold out hope that it will!!!

    Blessings to you all!!!

  13. It’s amazing how I judge my day according to how Claire is doing. I am very happy today for the progress and will be anticipating your post tomorrow. Each step she makes is triumphant. I just love you all.
    Julie Hamers

  14. Wow, it sounds like a really good day of news yesterday. I’m hoping for more days like that. I hope the pool went well. Thoughts and prayers are being sent your way….

  15. Ya’ll don’t know me, I found your blog through a friend of a friend. I just want you to know that your family is in my prayers. You have a strong faith that will carry you through this. It’s hard to understand why God allowed this to happen to your little girl, but we as Christians know God has a plan for us all. Hang in there and fight the good fight and watch God work wonders through your family.

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