This Week Felt Like Summer
Sunny was living it up this week - the weather was in the 70s Mon-Wed and we took full advantage. We took walks on all three of those days, and they turned out to be an accidental almost 3 mile walk each time! It felt so great to be able to get Sunny out so much, and to get out and break up the day for her nurse and myself.
Tuesday, she had a follow-up with her Endocrinologist. She said her numbers were good, and that plus the dose she was on, (for her hypothyroidism) was encouraging.
The rest of the week, we took our walks until it switched back to winter & we stayed inside. She finished up her antibiotics from.... whatever it was. They made her very tired, so LOTS of sleeping pictures because that was a bulk of what she was doing:)
Next week, we have a follow-up with her helmet team. She wasn't wearing it for about a week when she wasn't feeling well, and we still don't enforce it too rigidly. It's for sure a priority, but if she's abnormally agitated - which she rarely is - we'll try taking it off to see if it does the trick. I think her getting her rest is the top priority, but we're really trying to to it consistently to TRYYY to get something out of this.
We've been encouraged that she's not had a UTI in 2026, but she's still had something each month. With her finishing her antibiotics, I've found I get nervous in anticipation for "the next thing". I'd love for just a month without any need for antibiotics or unscheduled Doctors appointments. But, as a complex care parent, I should probably also just be better at accepting it as her norm.
Prayer requests:
- health for Sunny, she's already acting.... A little off again? Very squirmy with bouts of an elevated heart rate. It's making me nervous.
- weekend night nurse
- & that her helmet would be helping to improve her skull shape, & potentially neck tightness.
Thank you. You're so kind to STILL check up on this crazy babe♥️
Love,
Chris, Alyssa & Sunny
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