“That's the time you must keep on trying…,Smile, what's the use of crying”

(That will be the last depressing title for a while, I promise.)

Good evening.

Everything is going pretty good over here. Today was Sarai’s 3rd day on the ACTH. Other than the pharmacy finding it impossible to get it up here on time (that wouldn’t be happening if Julie or (Christin’s) Steve worked there!), things have been pretty smooth. Her spasms have been MUCH more subtle, so subtle I was actually “arguing” with a nurse that she was in fact having one yesterday, the nurse didn’t even see it. She’s also been having a couple less each day. This early improvement is very encouraging to Dr. James. We think, but we can’t be sure, that he actually smiled and appeared optimistic!

I gave Sarai my first shot this morning. Poor baby… poor mommy! Adam’s up for his turn tonight (if they ever get here with the shot). We’ve got a practice syringe and a roll of toilet paper for practice… almost the same thing…. Or not! So far she’s not having any side effects, other than eating like a horse. Her blood pressure is good, and so is her blood sugar. She’s up to 15 lbs. 6 oz.

Dr. James is going to order an echocardiogram for Monday, just to get a baseline. That will be an easy ultrasound-like procedure, but as usual, she probably won’t tolerate it very well.

The physical therapist came today. She hopes to visit a few more times before we leave.

We got some live music with “Mike” today. Very cute!

A few visitors are coming this weekend, including lil sister & bride to be… KATIE! Oh, no. Heaven help the sailing wing!