Wednesday, July 21: Update

Claire’s phenol and Botox injection procedure completed without any complications. She was put under for the operation and was alert and awake again by 2:00 PM. Had Claire only needed the Botox injections, there would not have been a need for the sedation; however, the phenol procedure interacts directly with her leg nerves. We can’t imagine that would be very comfortable and are glad she wasn’t awake for it.

While the procedure went well, the recovery has been uncomfortable. We want to make sure that no swelling occurs in Claire’s legs and that means elevation and ice. We’ve been rotating ice packs on her legs all day, 20 minutes on, 20 minutes off. Keeping her legs elevated has increased her agitation. Claire doesn’t like laying on her back and elevating her legs while on her side contorts her body and places stress on her lower back. Claire has to endure this for 24 hours; while she’s uncomfortable, she’s persevering like a pro.

We enlisted Autumn and Heidi to help calm and distract Claire during her uncomfortable awake hours. Autumn read Claire a Dora book first. It gave us a chance to go over how to help Claire recover with books. Autumn was very good at telling Claire when she would read the next page and informed Claire when she would take the book away from Claire’s face. Claire wasn’t enjoying looking at the pictures and Autumn was confused about why she wouldn’t calm down.

After I told her that Claire probably couldn’t see the pictures when the book was that close to her face, Autumn laughed a little and moved the book back so Claire could see. Claire settled down right away and stared at the pictures long enough that Autumn pleaded with me for when she could move the book again because her arms were tired.

Claire has recovered. We have filled out papers. And more papers. It’s all in the interest of hitting the ground running when we do get discharged so we don’t lose any time between the inpatient and outpatient therapy. We’re eager to maintain Claire’s momentum and are pleased with how proactive OCH has been. Their enthusiasm for kicking us out is matched by our enthusiasm for going home.

Though we are happy to go home, it is hard to say goodbye to those we’ve grown accustomed to seeing. We exchanged hugs today with Claire’s admitting nurse at OCH because we wouldn’t get to see her again before discharge. We’ve loved having Charity watch over Claire and laugh with us. We look forward to seeing her soon.

We will be eager to have friends and family visit Claire once we return home. My mom and Tiffany are making their way through the Damoff family’s story right now and one thing that jumped out at them was how much visitors helped Jacob improve. We hope it has the same effect for Claire. We will let you know as soon as Claire is ready to have visitors.

Thank you as always!

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18 thoughts on “Wednesday, July 21: Update”

  1. I just love looking at these pictures! Claire’s hair is so beautiful and her sister is such a sweetie!!! I hope your transition goes smoothly and I know that Claire will enjoy finally being home again. Sending lots of love your way!

  2. What sweet, beautiful pictures of Autumn reading to Claire.
    Once again, I am brought to tears. You are in our prayers every night at bedtime. My children and myself pray for Claire and your whole family. God bless you. Your posts are amazing Tyler!

  3. just had to comment that the story about Autumn with the pictures is totally cute! I was thinking when I saw the first one (before i read the blog), “wow, i would not like to see things that close to my face…” then I laughed; neither would Claire…

  4. I know how Claire feels about the pictures in the books. My kids do that to me all the time and it is annoying! I am so glad you guys are almost ready to get “kicked out”! Your post is so enthusiastic today!! I continue to pray for your entire family!

  5. I am amazed at your resilience and strength. I know it’s source but you wear it beautifully. Pressing on in our prayers for Claire and your family.

  6. I’m so glad the injections went well, and that Autumn was able to suitably distract Claire by reading to her. It seems some of her vision is coming back? I wish I lived close enough to come visit once you get her home! I hope you will continue your blog, even if not daily, for a while. But I suspect you’ll be even busier once Claire is home, with increased activity. The most important thing is that you’ll be a family of five under one roof again. Still praying for you all. That Claire is such a precious child. Love and prayers, Dodie

  7. Loved hearing of Autumn reading to Claire and the book too close to her eyes and all :O) What a great care-giver to her sweet sister. We’re enthusiastic with you about getting Claire home soon!

  8. I think Autumn and Heidi deserve ‘best big sister’ awards.
    Care to the caregivers; love, prayers, and hugs to all.
    Susan D.

  9. What great pictures of the sisters! I’m excited that you get to take Claire home soon. I know that will be a special day for all of you, especially Claire. Continuing to pray for good rest for all of you, a smooth transition from OCH to home, and healing for Claire.
    Love and prayers,
    Susan

  10. God bless your return to home! Will be great to see you all again! I am waiting for that day. . .

    I love these sweet pictures!

    Always with you. . .

  11. So, I had a couple of notifications in my email to moderate blog comments. I moseyed over there, and the first thing I noticed was that, once again, my number of visitors had spiked dramatically. I immediately thought, “Tyler must have linked to my blog again.”

    I hope you guys know how popular you are! 🙂

    These past few updates have been such a delight to read, full of Claire’s improvement and your eagerness to press on to the next step. I love the pictures! She looks so great. I have great hope and expectations of good things to come.

    It blesses me more than words can possibly express to know that our story is helping you navigate yours. I do pray God will provide all the right people to come alongside and be part of her ongoing recovery. And I trust He will. Don’t be shy about letting people know ways they can help. We never were, and we discovered that lots of people were eager to jump in once they knew we welcomed their involvement.

    By the way, in case you haven’t made the connection, Natalie Grubbs who commented above is the Natalie mentioned often in our story–Jacob’s best friend and a huge part of his recovery. I have no doubt she is praying for Claire and all of you with as much tenderness and fervency as you could hope for. She’s a treasure.

    Much love and constant prayer,
    Jeanne

  12. I am so happy to hear Claire is doing so well. I would love to visit soon let me know when a good time is. as always if u guys need anything just ask…… god bless. and good night.

  13. I think Autumn will go into the medical field as a some kind of therapist. She is smart, has the heart and wants to help. We are all witnessing a little therapist in the making :0)
    So excited for you to hear that you are heading home. You will see how dramatically Claire starts to improve daily. There is nothing like the comfort of your own home and familarity. There’s no place like home…….Now you can begin your new life as a family unit again. Once again together under one roof. Now your family is COMPLETE ! Praise the Lord…..It might not be the same like it use to be, but you are together and adjustments do need to be made in order to return to a new routine. It’s just like bringing a newborn home for the first time. Wow is your life turned upsdie down, but with time you all will adjust beautifully.
    Much prayer coming your way daily …Luv ya…..Stay Strong….

  14. The inner beauty of your family shines so brightly. God gives people challenges who are able to show other the true meaning of faith. Your family is such an inspriration to all.

    1. joanne – i second your thoughts – i have been trying to get to the right words and just couldnt – so glad you put them on the page to allow me to tag along.

  15. I can see your excitement just in your words on the page! Everything is coming together for Claire’s discharge. Looks like you will have some great little helpers at home!

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