"Are we going to the hospital today?"

Every morning Selene wakes up (in my bed, but that's a problem we'll solve another day) she asks "Are we going to the hospital today?" Every. Single. Morning.

Some days I reply, Yep. And she says "Ok!" And some days I say "We are." And she bawls. And the days I say "No." She squeals "Yay! Now we can do what we want!"

So we finally have our schedule set and I'm not 100% sure it's going to work. On Mondays she'll have school all morning and then I'll pick her up, feed her lunch on the way and have back to back PT/OT. I'm not sure this is ideal but we're going to try it. Coming off of a 4 day break and having a Tuesday break we'll might pull it off. Then she has school and a 3pm OT on Wednesday and a Thursday morning. Don't ask me about Kalina's nap schedule....

Her physical therapist met us for the first time this past Thursday and saw a lot she liked and a lot to work on. She's hoping to work with us for about 12 weeks which is encouraging. And her OT said it seems her muscle bellys are shortened and that it doesn't seem to involve damage to tendons. So to me, it seems that everything is reversible.  I'm trying to hear good news without getting too excited.

More good news is that markers in her blood work showed improvement and the possibly that this treatment is working. I'm steeling myself for our appointment on Tuesday and trying not to get ahead of myself because I don't want to be too hopeful. But weaning off of steroids would be amazing. Selene is eating me out of house and home! I buy like $15 worth of "green yogurt" (key lime ONLY Oikos brand) a week. Every day she asks to go to the grocery store and tells me she's hungry and thirsty every 26 minutes...

She went back to school shopping with Ainsley and Anita and ate a whole chic fil a kids meal as well as a McDonald's burger. I've never seen her eat a whole burger or more than 3 chicken nuggets at a time. So yeah.

Overall, with the help of our family I think I've got a hold on this.  Granted school hasn't started yet. So that's going to bring challenges, such as exhaustion and requiring Selene to separate her body from mine, but I'm hopeful we'll get through it and in a few weeks will be in our routine. For now, we're just going to finish out our summer, get our backpacks ready and meet our new teachers!

Thank for you the continued prayers and thoughts!

Guys! She put on a tshirt! And then took it off, but it touched her body.

Pictures before therapy.

Package from sweet friends!

Miss Big girl won't go down backwards anymore...

Accidentally gave her syrup for the first time and she's super stoked.

Ainsley joined us for therapy (Also, she has no torso strength and this was concerning :( )

She's not sure she wants to buy into this...

bear walk races!

I made pad thai and they devoured it.

Eating the leftover chicken before I can wrap it up...roids.

A card from Uncle Justin and Aunt Kelly, loves her Pandas

She's been trying to balance since her therapist showed her.