...middle-of-the-night posts, that is. It will happen more often as I get closer to having this baby and I have more and more trouble sleeping. It may also happen a lot because we're playing with Elli's medications.
A couple weeks ago, Elli and I met with a new neurologist (new to us, not new to neurology). This doctor was very supportive of my desire to try to reduce the number of medications Elli takes to the bare minimum. I had intended to try weaning her from seizure meds this summer, when poor sleep would have no effect on school. The doctor convinced me that now would be best, when she's probably busier and more likely to be physically tired.
This seizure medication has wreaked havoc with Elli's sleep cycle since the very beginning. For the first year to year and a half, it caused her to wake in the night and not go back to sleep. Now her body has adjusted to it, and if she doesn't take it, she wakes in the middle of the night!
On the one hand, I dread the weaning process because I know we have to reverse this and it's going to be painful. On the other hand, I find hope in her body's ability to adjust, because I think this means she has a good chance to successfully return to better sleep habits off the drug (as long as she doesn't have any seizures in the mean time, of course!).
We are doing a very very very slow wean, adjusting her dose this first time by only .25 mL (basically 2 1/2 drops less). We've been on the lower dose for one week. I was starting to feel pretty optimistic until last night. She had a brief period of wakefulness around 11pm, but went to sleep on her own.
Tonight I'm not sure if she fell asleep and then woke around 12:30am, or if she never fell asleep but miraculously stayed quiet for 2 hours (seems unlikely, given her pattern of only staying quiet for 20-30 minute stretches). But she's quite awake, though coughing.
This is what gets tricky. I learned from keeping a sleep diary on her in January that 2/3 of the night wakings she had that month occurred the day before her nose started running from a cold. If she follows Scott's and my pattern of colds, that's the day her throat hurts like mad.
So, is she awake because we reduced her dose of seizure medicine? Or because she's getting a cold?
She's been coughing for a few days with no other symptoms. So I decided to go ahead and give her some night-time cold medicine and some Tylenol, just in case. I'm blogging now, waiting to see if the medicine helps her sleep. I know I won't sleep until she quiets down, so crawling back into bed is a waste of time.
We have another dilemma to sort through. I had another meeting with her team of specialists at school. The news on the whole was good -- they've been trying a lot of new things with her and have found that the changes were good and some new methods have potential. But things are still far too early to give me any real solid information. They have to teach her a new communication method, one that doesn't depend on the accuracy of her hands, before they can use it with her to assess what she does and does not understand of first grade material.
She is making progress with the new method, but it's going very slowly right now and they haven't been able to do much assessing yet. So we don't know yet what she really knows.
Our dilemma is that it's now half-way through February. She is over half-way through the school year, and we're still not making much progress on academics. So, do we take another year in first grade to give her a chance to learn that material and maybe get to grade level in at least one area? If we're going to repeat a grade, now is the time, before the kids (including her) are aware enough to know what's going on). So much of first grade material is foundational to future learning, and if she doesn't have major learning disabilities, repeating now would give her a chance to master this stuff and then keep up decently well. Because she has an IEP (individiualized education plan), she has until age 22 to finish school.
Or do we keep her with her classmates and move her into a different school to keep her from getting bored, knowing that she'll continue to work where she's at no matter which classroom she's in? She thrives on change, always does well in new environments, and tends to shut down when she's bored. Plus she has a core group of friends now that could move with her.
There are pros and cons to both. What we can't do, partly because we aren't educators and partly because she's our first and we've never had a child in 1st or 2nd grade before, is write out a comprehensive list of these pros and cons so we can weigh them.
My task over the next month or so is to call and email people on her team now and on the team that would work with her in 2nd grade to try to put this list together. Meanwhile, we're going to see how she does over the next couple months. Chances are good that she'll take off and start to make up for lost time.
We have to make a decision at our next big meeting the second week of April.
Now if we can all just get some sleep, so our brains will work enough to think through all of this! I think Elli is finally asleep, so I'm going to crawl back into my bed and hope I sleep until morning.
