Thursday, April 30, 2009

Scratch that

Well, the fludrocortisone seems to have balanced out her hydration a little--the circles under her eyes aren't as dark, and she isn't wetting through her pants as much--we had been going through at least 2 pairs of pants a day at school--but, now, instead of less seizures, she seems to be having more, and on top of that, she's been pretty quiet and drooling sometimes. She's also thrown up once a day for the last 3 days. And she's not giving me the same warnings as in the past--it's more like: "Oh no! Get the" Too late. ...but I digress.

So--is she drooling because she is retaining more fluid, or is she drooling because she's having seizure activity? I have a call into the neuro nurse to talk about it. And, we'll do more lab work on Monday to see what the effect of the fludro has on her electrolytes.

You know, I didn't pass fact, I don't even think I took chemistry, and I barely got a C in biology. But I wish I could figure all this out, and I know you've heard that a million times already. We all wish we could figure this out, right? Too many medicines, too many body systems, too many symptoms.

But let me finish this post out with a little good news--you know, besides the fact that we don't have swine flu yet. So I was reading to Annie yesterday about the 10 little ladybugs who got eaten by various animals and then magically reappeared on the last page happily playing with their predators. Anyway--when I got to the fish who ate the ladybug, Annie said, "fshhhh." Then today at speech therapy I was reading her the Brown Bear story, and when I got to the page with the goldfish on it, she said, "fssshhhh." Now, of course, she won't repeat this word on command, but she definitely said it--twice, in context.

She also said something that sounded like her nurse, Moira's name--both yesterday and today when I dropped her off and picked her up. When I turned around in the van to ask her if she was saying, "Moira," she just gave me a big grin and then looked out the window at Moira.

Two steps forward...


"...being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ;" Philippians 1:6


Gretchen said...

Oh, I'm thrilled about the speech/language gains, Jean! And I swear, she's getting so much more intentional, even with greetings. I love how she totally looked right over at Jack and said, "Hi!". It was appropriate in so many ways.

So, I'll praise for that, and pray for this other stuff, which is so hard to figure out. Sounds like all the docs are perplexed, too, so I wouldn't feel alone. In fact, you're the #1 detective on the job, and I am amazed at all you observe in her.

C u soon. ;)

Sue Powell said...

Yes... praise God for the speech and recognition improvements, etc. And will keep praying for FORWARD steps with all the physical stuff.