Sunday, August 15: Update

We got tired of waiting for the replacement knee pad to arrive for Claire’s standing frame. So we fashioned our own. Claire was having a tough morning. She was responding to leg stretches and we wanted to see if putting some weight on her legs would alleviate some of the pain. It did. Claire stayed in the standing frame for just over 30 minutes and was calm and collected the majority of the time. She was also much more subdued after she came off the frame. We were so encouraged by the results we put her back on the frame this evening when she was getting agitated again. She calmed down again and stood for another 30 minutes. We intend to use the frame on a daily basis now and hope it will produce recovery results for Claire.

We spent the rest of the day trying to catch up on some rest. We got bits and pieces, but the weekend was still too short. I’d say that we’ve got a big week ahead of us, but that would indicate some relativity, that it’s different that previous weeks. They’ve all been the same. There’s always something new to qualify the week as “big;” we hope those things are steps in the right direction for Claire.

Thank you again and sleep well.

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28 thoughts on “Sunday, August 15: Update”

  1. She is beautiful! I so hope this week brings around some big improvements for Claire. I can’t imagine how anxious you guys must be. I pray for you all to keep your strength and the grace you have been blessed with. Thank you so much for always giving us our daily Claire! She is loved by so many now, as are all of you! Sleep well, sweet girl! Love and Prayers!

  2. That’s amazing! Claire looks so great! I’m so relieved to hear that it helped with the pain – you’re experts in trial and error by now. 30 minutes is fantastic too! Did the girls like seeing her upright?
    Keep on keepin’ on!

  3. this is my first time commenting, but I’ve read your whole story from the beginning. I just wanted to let you know that I have a 2 year old with spastic diplegia CP and is using a lot of the same equipment Clare is. I’m wondering what stander she has?! It looks a lot better then the one Jillian tried!

    1. Cheryl:

      The frame we got for her is the Easy Stand Magician-ei. We have been very pleased with the stand. It is very sturdy and supports from the back and front. It is designed to to stand kids from a seated position which makes them feel more secure rather than pivoting on a central fulcrum. We recommend it especially if you find a good used model for a good price.

      Tyler

      1. Thank you, Tyler!! Jillian tried a dondalino stander and she didn’t like it at all. I’ll bring this one up, but not sure if we can get it here (We’re in Canada) keep up the good work with Claire.

  4. What a blessing to see Claire in her stander! She is such a trooper! I AM SO THANKFUL that God gave Claire to your family. He knew that Claire would need strong parents and I am continually amazed by your strength and resolve. I continue to pray for you. I look forward to your daily updates!

  5. You are both learning how to read Claire and adapt to her needs as they come along – congratulations. That is a big hurdle to overcome. Praying God will continue to give you His wisdom and help you discover new ways to help Claire.

  6. I would like to get your post updates as emails. I was getting them and I must of clicked something by accident to say not to recieve them. Could you please check and see if there is a way to fix it. I love to read about claire. She looks good. I really think she likes the Standing machine. Good luck this week. I know your very busy. Please take care and thanks for sharing your story.

  7. I love the picture of Claire today! She is so beautiful! How great to see her in the standing frame! We are so happy that it is helping her. We are praying for a great week for you guys!

  8. I don’t know why, but the first picture reminds me of the titanic…She looks like her hair is blowing in the wind… “I’m the King of the world!” Well, in her case she can be the pretty, pretty princess. 🙂
    Love you guys!

  9. Praise God! It is so nice to see pictures of precious Claire. You are truly the best parents in the world. Thank you for sharing pics and progress!

  10. how great it is to find something that can alleviate claire’s agitation. i’m sure it gives her a change of scenery and helps her use a whole different set of muscles.
    as a former spinal patient… i used to look forward to being repositioned so much. i would count the minutes. i’m astounded at her ability to manage 30 minutes so quickly!
    i wonder if her agitation isn’t a sign of her getting better cognitively? i know i’m completely naive to this injury and what it does to the brain and body… but i am remembering my own baby and how he used to get so cranky… but all we had to do was move him somewhere/give him something else to do. his mind was always ahead of his gross motor skills…
    just thinking out loud.
    i would agree that the pairing of Claire’s issues and parents like you is a perfect match… Claire has the most proactive, caring, compassionate parents with a zeal to tap every resource. kudos to you for being Claire’s champions!

  11. After two families in my church asked for prayer for Claire, I’ve read the daily update religiously. I’m overwhelmed by the love I feel for this child whom I’ve never met. Thank you so much for letting me share in your journey. I look forward to the day when we all can celebrate her total recovery.

  12. I ran across your blog and Claire’s updates and wanted to say Hello! I work for Altimate Medical, who makes the EasyStand Claire is standing in… it is great that Claire has started a standing program. Keep up the great work!

  13. Such a joy for both of you and Autumn and Heidi to see Claire standing up . . . and looking so perfectly beautiful at the same time!! You’re so creative in your attention to her needs. This was indeed a big day for all of you. God bless.

  14. You all are an inspiration. We read your updates daily and keep Claire and your entire family in our thoughts and prayers.

  15. She is so beautiful…and how wonderful to see her standing!
    You have such wisdom in helping her! What wonderful parents you are.

  16. Love these pictures! Especially the first one. She looks like she’s soaring, and she probably is on the inside.

    So good to see sweet Claire standing upright. Hooray!

    Love, Jeanne

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