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(this is how a typical HEALTHY school day runs for our girl)

4:30am Her overnight fluids end. Time for Nexium (for reflux) and CoQ10 (for mito).
6:15am She gets Augmentin (for gastric motility) and 8 ounces of Elecare Jr with Miralax (for constipation) and cornstatch (for hypoglycemia).
6:45am Josh gets her dressed, unhooks her oxygen, and brings her downstairs.
7am I brush her teeth and hair. I give her Advair (for asthma)She gets on her socks and shoes. I pack her feed for school and draw up her midday CoQ10. Josh packs her lunch.
7:25am We leave for school. (After dropping her in the car line, I go in and drop off her pulse oximeter and CoQ10 for the day.)
11am She goes to the clinic for a glucose check, oxygen sats check, Augmentin and CoQ10 doses, and to get hooked up for her feed. She is doing most of this for herself these days, with some encouragement from her favorite nurse!
3pm School is out! Yay! (I pick up her equipment prior to dismissal most days.) At home, some days she has a small snack. Then it is time for CoQ10, Augmentin, and another formula feed while she does homework.
5:30pm Dinner, but K doesn’t eat most days.
6pm Shower/bath. PJs. Braid hair. Advair.
7pm Nexium and Benadryl (for nighttime congestion). Reading time.
7:30pm Hook her up to her oxygen and pulse oximeter. Lights out and cuddles!
8pm Augmenting and formula feed in her sleep with Miralax.
8:30pm Overnight feed of clear fluids started.

Free time is used to reading, playing, video games with N, and TV. The important stuff! ♥

 

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