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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Trials and Tribulations

There is so much promising research happening with Rett Syndrome right now. For this momma, it’s overwhelming to digest. There are currently 3 clinical trials that Lily is eligible to participate in and all three offer the potential to help with some of her symptoms.

Clinical trials are no joke. We participated in one a few years back and it’s a lot of work. Lots of hospital visits and monitoring. And a new medication to remember to give her every day.

I’ve done a lot of poking around, reading medical papers, have consulted with two Rett specialists, a bunch of Rett mommas and have decided that Lily will be only participating in one trial. It should be starting in late fall and I’ll be sure to send updates.

In the meantime, we’ll just be enjoying life in our little oasis on the UWS, trying to get this kiddo to gain some weight. Come and visit if you’re in town!

Love,

C & L