Friday, August 6: Update

It’s time for another short update since there is not much to report and I’m tired.

Claire’s streak continues. We increased Claire’s feeds slightly today and feel that we’ve found an equilibrium volume that we will test for a while. We’ll continue to measure her weight to see if it is fluctuating, and hopefully we’ll see that she’s gaining at a normal, three year-old pace. It’s been nice having a run of three days without the need for emergency services. Claire’s stomach seems to be more stable: we’re not seeing the slightest signs of reflux right now.

Tiffany worked Claire out today despite it being an off-therapy day. By the time 6:00 PM rolled around, Claire was spent. She was calm for the rest of the evening and eager to sleep once 8:30 PM arrived. She’s sleeping soundly in her room, and for the first time since this began, Autumn and Heidi have joined her. The change is hard on them. They’ve gotten used to sleeping on our bedroom floor, close to us both. But as we continue to rebuild a routine, this piece of normalcy will serve them well.

We hope your collective weekends are enjoyable and you get to relax with friends and family. Thank you as always.

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9 thoughts on “Friday, August 6: Update”

  1. What nice posts the last couple of days! My son loves those headphones, too!!! I am sad that I will be out of town next week and unable to see you in the office. I’ll have to check the posts via e-mail. There is so much I’m learning about Claire’s recovery and treatment that is just amazing. For example, the casting and stretching of her left toes to ensure her abilities going forward. Wow. And how great is it that she is communicating well enough to tell you her foot hurts?!?!? It’s just phenomenal. This is just such an amazing journey and learning experience. Thank you for the window into your world. Enjoy your tools.

  2. I heard Autumns favorite song “Bullet Proof” yesterday on the radio. I remembered dancing in your living room with your mom and Autumn (with her super awesome dance moves). 🙂 It made me miss her. Would you tell her? Glad you had a good day.
    Michelle
    PS. Then I had the song stuck in my brain for the rest of the DAY!!! UURRGGH! LOL

  3. Tyler, I hope both u n Tiffany hv an outside ur little nucleus family person(s) who nurture & listen to u, fill ur reserve tanks on a regular basis or they’ll surely get bone-dry as the Sahara.

    Then in turn also on a regular basis, make sure ur giving individual time, unique to Autumn & Heidi, all there in the moment.

    Doing a lil here n there consistently prevents stress crises that pop up when pressure builds n wreak havoc:/

    Keep up the great job!!! Prayers up always:))

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