A deep breath of ultimate breathiness (breathe from the diaphragm, Marilyn)

Baby, Baby

Top News Story: Last night Baby E. slept through the whole night.

I can barely type that sentence without flinging over the laptop in joy. Do you know what it’s like to sleep through a whole night after a month of hour-on/hour-off nights? (To specify: Baby E wouldn’t sleep except in our arms. We put him down, it was eyes open, screamy cries. So A would take one hour while I slept, then I’d take the next hour while he slept. I look at pictures of us from this past month and we look …well, it’s not good.) Anyway. He probably won’t sleep through the whole night tonight, because…

Next Top News Story: today we gave Baby E. his last shot of ACTH. He still has to take blood pressure meds, and we’ll start the weaning of those next Monday. But he isn’t having any more of the spasms, and his EEG looks clear of hypsarrhythmia. So now we cross our fingers and wait. If the spasms come back, we’ll do another course of ACTH. (A prospect I’m sure the insurance company is real jazzed about.) If he has new and different seizures, we’ll try new and different medicine to control them.

It is amazing how much more doable this crappy diagnosis looks after a full night of sleep. Or at least, amazing how much my personality devolves when I do not have regular and partially unbroken sleep. I am glad I have not interacted with too many people this month. (Hurray for cave troll jobs.) I woke up at 5:30 am and thought, he didn’t wake us up. He’s dead in there and I lay very quietly, listening for any sound of Baby E. He woke up at about 5:35. I am ecstatic.

Other Stuff

Editing, editing, editing. Baby E. gave me a 45-minute nap this morning, glory-be! So The Novel That Ate Lake Tahoe is almost done with the final pass. I’m so excited to get it out of my face.

Went to the Dollar Store (urgh) and bought a pool noodle for Baby E.’s PT, and some shiny-pretties for his OT. They were stocked up for Halloween, so I bought a bunch of decorations for the house, because we don’t have any and it’s a travesty.

Also in the spirit of Yay-Up-and-Coming-October, check out the wonderful creepy links at this AskMe post:

Read to me classic stories of horror

Watching a lot of stuff on the old tee-vee. I picked up season 1 of Jeeves and Wooster, and I am heartily ashamed that I have never seen it before. Delightful! Baby E. and I are working our way through Season 5 of Buffy. And A. and I started watching Iron Man 3 last night. (We still watch movies in serial these days. Leave us alone, we make our own fun.) I am liking it a lot more than I thought I would. Possible culprit: Shane Black and his weird love of explodey Christmases? Anyway, I look forward tonight to the thrilling conclusion.

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4 thoughts on “A deep breath of ultimate breathiness (breathe from the diaphragm, Marilyn)

  1. Yay for sleep! We are still light years away from sleeping through the night over here, but on those rare nights where I get two-ish hours of deep REM sleep just before dawn, it is astonishing how much more capable and pleasant I feel.

    I’m glad Baby E. stuff feels more manageable, too. Is he any less grumpy as you’ve been tapering down the ACTH? Are you still stuck with the unavailable/misdirective bullshit local docs, or have you found someone better?

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    1. :( I hope you guys get more sleep soon, it’s truly amazing how quickly the deficit builds up. Does your little girl sleep with you guys, or in a crib/sidecar thingie? A. started sleeping with Baby E while they rocked in the rocking chair, which made me nervous, but gah — sleep or no sleep?

      Baby E is so much improved! He was a nightmare until we got down to about .07 ml per day (the third level of the taper), which was about a week and a half ago, and it was as if he woke up a brand-new baby: jolly, smiley, full of chuckles and giggles and coos. Steroids are of Satan. Even if the spasms come back and we have to do another course of the drug, it’s so good to know that Sweetface Baby will still be there.

      Unfortunately we’re still stuck with the same local docs. We did have a good appointment with a local pediatric neurologist, but he’s only local in the sense that he flies back and forth between Rapid City and Sioux Falls every week. (Though he used to come out this way only 4 times a year, so I guess this is an improvement.) We also saw on our paperwork from the children’s hospital that our Unavailable Pediatrician’s records of Baby E’s brain bleeds stated they were a lot more severe than he told us they were. Or at least, what A. and I REMEMBER he told us they were. Frustrating. I feel like recording our next well-baby checkup, just to have a reliable memory.

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      1. I am so glad Baby E. is smiley again. Baby chuckles are the best. It really does make a big difference, doesn’t it? I know on cranky days over here, it’s easy for my brain to slink over to Bad And Crazy Self Loathing Land and to start thinking things like, “All this work and she doesn’t even like me!” Which I know of course is not true, but when I’m sleep deprived and the baby is displeased with everything I try, it kinda feels true, you know?

        She is in bed with us, since the only reliable way to get her to sleep is to nurse her down, and she’s still nursing 2 to 9,356 times a night (perhaps a slight exaggeration), and with her in bed it’s easier to just roll over and stick a boob in her face, rather than getting up, walking across the hall and sticking a boob in her face. But just recently I have been able to nurse her down for a nap *and then actually walk away*–that is, I don’t have to lay next to her or wear her for her to stay asleep. (And, yes, all babies know when you try to sit down.) So that is progress!

        That stinks about the crappy doctor, though. You totally should record/take notes at the appointments, and if the doctor has a problem with it, tell him to kiss your ass. Or you could say that you’re “just trying to make sure you remember everything” if swearing at the doctor would be less than helpful.

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        1. That is fabulous that you can put her down and leave her! (Ha, looks so callous typed out, but seriously. FABULOUS.) Baby E’s been doing so well, we can put him in his crib to coo and just generally chill while we tidy up his room/run a load of diapers/get dressed/etc. Being able to put the baby down with the baby keeping their cool is glorious.

          I can just imagine cussing out our doc. He’d probably go, “Hm. Okay. See you next month.”

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