Up to the minute

After spending much of my free time here reflecting on the trip (part three of three of the trip home is written, but not yet proofed), I thought I'd better give everyone an update on what's going on NOW.

- Mira is doing well. She has had, this week, one isolated seizure. Whether it's the new combination of meds, or getting her sodium levels up, or just that she's generally more relaxed, we don't know, but it's been a good week on that front.

After a "bath" (just wiped down) and a hair wash. Oh, I am looking forward to seeing what her hair looks like as it grows out! It sure looks like she's got a head full of soft curls!

- Mira's sodium levels continue to be low. They were at 122 when we picked her up; they're supposed to be in the 130s, and though we some days get above 130, we can't keep it up there. They've taken her from a once daily sodium dose, to twice, to three times a day now, when this morning her levels came back at 128. The thought now is that we're still looking at the impact of the tegritol on her system.

- Mira had another disautonomic storm last night around midnight. Unlike Saturday's, this one was carefully attended and observed by multiple nursing staff who were in touch by phone with the doctor, and we administered a small dose of the same rescue med we'll give her for seizures that go too long. She did not come out of it as quickly as we would have liked, but she did and after she was settled, another dose of milk and molasses helped her to move what was getting stuck after the barium contrast earlier in the week. (Pain, pressure, pooping, and peeing (and one more "p" I can't remember) are common triggers for storms. Her nurse and I were talking this afternoon thinking we may have avoided the storm if we had taking more active steps sooner to help her keep moving things through.)

- the best news is that she's finally got a date and time scheduled for her surgery! The not so great part about that news is that it was NOT for today (which would have let us go home on Monday), but the surgery is not until Monday at 10:30, putting us here until Wednesday. Although two more days doesn't sound like a lot, Mom's already been gone for most of two weeks, and everyone's ready for that to be over!

- The last two nights we have decided to leave Mira around supper time with the nurses so Matt and I can both be home to give a small sense of normalcy to the kids at home. We celebrated Owen's 12th birthday on Wednesday with Chinese take-out, and had a dinner of rollicking laughter last night. It was a crazy meal, but so good to be all together at the table laughing and talking and enjoying each other.

- Bogomila and I had a chance to talk briefly about the blog. She had seen that her picture was on it, and I reassured her that I was sharing very little about her because I wanted to respect her privacy, and that someday when her English was better, we could talk together about what she is and isn't comfortable with me sharing, but at the moment she gave me clearance to tell everyone that we are all enjoying lots of laughter together. Google translate is still our best source of developing inside jokes. "Mogo Mila" is one of my silly new nicknames for her after a botched translation of her name. ;) We try to use pronouns as much as possible!

- There's a cold running around our house, making the plans Matt and I had for having me be a little more heavily home this weekend a little more tenuous. We can't have Mira getting sick before surgery! I've talked with one of the doctors on rounds here, and two nurses, and we all agree that with caution, I can go home. We will then decide if Matt's well enough to come (he's not sure if he's sick, or just reaching his limits with carrying on the household with minimal assistance), or if he's got to be the one to stay  home.

- Going into next week is going to be a challenge. Our friend Faith has been an incredible asset to us, but we'd asked her for a week, and she has willingly given us that. However, she, too, has demands on her time, and will not be staying with us anymore. Tonight she will sleep at her own house, and tomorrow afternoon will come back for a while to let Matt try to get some work done while I'm back here with Mira, but the logistics of this last week of being apart are going to be more complicated than either of the first two weeks were.

So that's where we're at!