A hell of a disorder

What a difference a day makes. Yesterday she could barely stand. Today she walked to school all smiles.

She was super wobbly when she woke (unfortunately this is quite common most days) and she only had a few tiny sips of smoothie this morning. But once I started talking to her about her day (school with friends, and then summer camp), she perked up.

I’m grateful for these mornings when she can walk to school. And it’s in these moments that I remind myself how lucky we are.

We have a few big doctors appointments coming up. Next week we are checking in with the nephrologist about the pee situation (which is still a pretty big issue). And then in August we are seeing the GI doctor. This appointment is the one I’m dreading the most. You see, Lily has lost 3.5 pounds since February. This is a lot of weight loss for her tiny frame. We will be discussing whether she needs a feeding tube. Her eating has not returned to the levels needed and it is concerning (to say the least).

I will keep you posted.  In the meantime, we will continue to make the most out of this summer.  This may just be my kids favorite season. And damned if we’re going to let Rett Syndrome get in the way of our fun.

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2 thoughts on “A hell of a disorder

  1. Looks like you are having a blast…..keep up all the fun activities. We love you,
    can’t wait to see you. Tons of hugs and kisses.

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