Wonder Woman

I can’t stand the cuteness!! Today was Superhero Day at school and Lily was Wonder Woman (costume courtesy of Uncle Carl and Auntie Alina). She loved her outfit so much she didn’t want to take it off, even for her after school physical therapy session (see bottom right photo of her rocking out on the stairs with her PT).

You wouldn’t believe it by these pictures but she was barely able to walk and was feeling emotional and uncomfortable earlier. She’s been extra lethargic these past few weeks, especially in the mornings. And this morning, the damned rash on her face came back with a vengeance. We have no idea what is causing it and it seems to come and go with no correlation to anything. And it’s super painful and itchy for her. Cortisone, bacitracin, even anti-fungal cream doesn’t do much to alleviate it. So far, what works best is a cold compress.

It seems like every day brings about some new, weird and random Rett symptom. It is a relentless and ruthless disorder. And through it all, my kid handles it with such grace and determination. She’s truly a Wonder Woman.

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4 thoughts on “Wonder Woman

  1. I love that blue and that smile and that courage. Rett is ridiculously unpredictable, but Lily seems so spirited through it all.

  2. You are awesome ms Lily. I love you soooooo much and I am so proud of you. You are my super hero.
    I hope to see you soon
    Xoxoxo

  3. I’m sorry to hear about the lethargy and the rash. But I do love her modern and youthful take on Wonder Woman! Too cute!

  4. Awwww she looks so thrilled! I always say you guys are the real superheroes
    who fight injustice everyday! Sending much love and wishes for feeling better.

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