“Nobody said it was easy, nobody ever said it would be this hard. Oh take me back to the start.”

Hello everyone. I thought I’d let you all know the ACTH was started yesterday. They gave her a shot in the afternoon, and for the time being, it will be given at 8pm and 8am. The shot is a gel, so you can imagine how much it must hurt going in. : ( Today they gave her some kind of numbing cream (the doctor said it was like icy hot) that they put on an hour before the shot. They had to seal the cream on with a big Band-Aid, so she cried when that came off, and the cream really didn’t make a lick of difference in how upset she got. (I may indulge them trying that once more, then, foggedaboudit.) She’ll also be given zantac to help prevent upset stomach and ulcers. From reading what a lot of parents say about ACTH, lots of kids end up having feeding problems because of the upset stomach issues. Plus, Sarai is still getting B6 every 6 hours. They crush that up and I give it to her in a bottle or mix it in with food, and it makes everything taste horrible. So between that and the ACTH, I have a feeling we’ll also have a hard time getting her to eat. (So far with the B6, it’s been pretty ok giving her a spoon of food with the vitamin and chasing it with a spoonful of regular food.)

We’re going to be on a tough schedule with medication when we get home. A woman stopped by today who will be in charge of helping to make sure the medication and supplies are all ordered correctly. She said she assists with about 5 families a month who have kids going home on ACTH and they’ve seen great results. Gives me a little hope!

I asked today about getting a physical therapist to stop by (Aunt Kathy suggested that to mom), and starting tomorrow, she’ll stop by 3x/week (which probably means we’ll see her 3x total). But no one will replace our Vanessa!

Activities here have been fun, they do such a great job for children. Yesterday I took Sarai to a magician and a drum circle. Today was a puppet show, but she fell asleep just before, and later on this evening there’s a “rock concert.”

Being us, we’re still trying to find humor anywhere we can. The other day, a nurses’ assistant stopped by to take vitals. I wasn’t paying much attention when Adam chimes in with…

Adam: Yeah, the nurse got mad at me last night.
Me: Why?
Adam: Because I pulled it out too fast.
Me: WHAT??
Adam: The thermometer!!

Aye.