Did that really just happen?

Ella was discharged from Children's Hospital just before 5pm tonight, and we've been home for a few hours now. So glad. Jackson said it best, "It's so good to have our family back!"

After a little down time at the house, I loaded up all the kids to go get Ellie's prescriptions filled--some of which were due tonight. I had some sweet time with my boys at Sonic while we waited. After we got home, I got them to bed without too much fuss on their part, fed Ellie one more time, gave her the medicine, and laid her down as well.

And for now, I'm alone with my thoughts about the past several days.

Surreal doesn't begin to convey how this feels.

Being in the hospital was strange enough, but bringing my girl back home, with a veritable sack of supplies in tow and six medications and referrals to home health and information from the National Organization of Rare Disorders and for that matter a diagnosis is a little much for me. I can't quite believe that this is our life now.

I'll be okay. I just have some stuff to work through.

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Ellie only had two seizures today, that I am aware of anyway. I couldn't watch her in the car on the way home much, and now that I'm home, I am pulled at least two other directions.

I think it is important to try to observe her as much as possible to get a good feel for how well the ACTH is working, but I'm realistic enough to know that I won't be able to catch every seizure now.

We have a follow-up neurology appointment on Tuesday. I'll be giving Ella daily shots of ACTH in the meantime.

The crazy, still-unfolding story of how we will actually be getting the ACTH delivered to our house and who will be paying for it will have to wait for another time.

♦