Pages

Wednesday, September 30, 2015

Absence

Abby's epilepsy has been relatively stable for a number of years. The last time the apple cart was upset in a major way was about a year and a half ago, when the switched generics on us for one of the anti-seizure meds. 



In that particular case, the new generic was absorbed at almost double the rate of the old generic, making her trough level skyrocket to over 60. It should be below 30. She had numerous seizures as a result, as well as a resurgence of migraines and facial tics, both of which hadn't bothered her in well over a year at that point. 

Since then, we seem to have settled into a relatively livable pattern of one complex-partial seizure about every three months. And actually, she hadn't had a seizure at all, as far as we know (always tricky to know what's going on when communication is such an issue) in about six months. 

Today, the phone rang. 

 

I always loathe when my phone rings, and I see on my call display "School Division". Something is usually wrong, although there are always exceptions. 

Today wasn't the exception. 

The teacher explained to me that Abby had an absence seizure. We haven't had an absence seizure in a looooong time... probably since she was about 16 or 17 months old and started transitioning from the infantile spasms to the complex partials. I asked some questions, and from what I could remember is sure sounded like an absence seizure, albeit a long one at 45 seconds. 

Second-guessing myself, I check epilepsy.com  just to make sure I was remembering the ins-and-outs of seizure types correctly. Then I called the school back and asked a bunch more questions. 

Was she responsive? No

Did she chew, which she typically did for complex partials? No

Did she come out of it gradually or abruptly? Abruptly

Did she seem aware of what just happened? No

Walked like a duck, talked like a duck.... 

 
 I didn't know what it meant. Do seizure types change? 

The answer.... dah dah dah dah!... is YES!

I called Dr. E. I love that man. I'll be lost when he retires in the next couple of years. Anyway, he explained that it's very common that as these kids approach puberty that the changing hormones can dramatically alter both seizure patterns and types. It can be rough. His advice was just to wait, watch and keep track of things. 

 See, now here I've been worried about the puberty and Autism thing. You know, teaching her to wear a bra, menstruation, the mood swings, all that fun stuff. 

That, somehow, suddenly seems simply compared to the prospect of managing an ever-changing epilepsy through the teen years.

Tuesday, September 29, 2015

One!

I'm a few days late on this post, but I don't think anyone minds. 


Baby turned one! 



Oops. Forgot my pants!

I don't think I've formally introduced her. Baby Christina was born last September and just turned one! She's quite the little peanut, and has been walking for nearly 5 weeks already, months earlier than anyone else. (She's got to keep up to everyone, 'ya know!). 

It's been a lovely fall so far here. I turned the A/C on this past Saturday (it was nearly 30 degrees!) but it was... chilly... this morning. First frost. Alas, I refuse to turn on the heat in September, and we buckled down and put on sweaters. 

We live on a lovely cul-de-sac - it's idyllic really, and perfect for our family - and while the leaves are turning the flowers are still looking lovely.


The tree in the circle. In case you were wondering,
it's our meeting place for our fire escape plan. 


Aren't they still lovely so late in the year? And no rabbits jumped out
and scared me, unlike last time I tried to take a picture of them. 
We were scheduled to take a nature walk today to record more of the changing season in our journals, but plans got kiboshed by erratic napping schedules. However, a frog trapped in the window well provided ample fodder for the journals in the end. 



Getting down the business. Ignore the dumpster.
We're renovating.

The frog. 

Hard at work. 

Drawing. 
I'm pleased to report that the frog was subsequently caught (along with a companion - we never realized there was a second frog until Daddy came home and captured them for us) and released into the back yard in a more suitable habitat. After my husband brought the darn things in the house to show me. 


Why are there frogs in the kitchen?


*Sigh* 

Men. 

Abby has settled into school finally. It was a bit rough the first few weeks, as she has new EA's this year. Her OCD has been very bad, even with bumping up her medication that helps with that. And before you ask, yes the medication is helping because we tried taking her off of it after Christmas last year, thinking it wasn't helping. The result was not pretty.

Despite all she's been through, she still always smiles for the camera!
She loves to swim. The deep pressure of the water helps with her sensory needs. Right now, we have her in a one-on-one swim class for special needs kids at our local Y, plus she swims two afternoons a week at school. We also go to the Y for public swimming whenever our schedule allows us. Our Y membership has been a great asset, not only with Abby but all the kids. In the long, dark and cold days of a prairie winter, it's good to have someplace to go that doesn't involve snowsuits! 


Sunday, September 6, 2015

School

 I think this is officially my first homeschooling post. 





Homeschooling is something that has long interested me. I read back on old posts like this one, and I can see how my thinking has evolved since then, especially on the topic of socialization. Alas, that's another post.  I still wish I could keep Abby home with us, and teach her myself. However, her challenges are great and I need the school resources to address them. 

When I met my first homeschooler, the big girls were very young. Rachael was maybe a few months old at the time. I was intrigued, but it wasn't something I had seriously considered up to that point. I filed it away in the back of my mind, never really thinking that I would pursue it. 

But then something magical happened. Abby started kindergarten. 



Abby's first day of kindergarten
I seems like an almost terrible thing to say, but our family is almost... normal... when she's away at school. Suddenly, once she started all-day-every-day kindergarten, possibilities started opening up. 

Homeschooling my other children suddenly became an option. And I suddenly found I wanted those precious hours of normalcy with my other children when Abby was away.

I wanted them home.  


From Easter. Everyone home. 
Rachael went to nursery school that year Abby was in kinder, and then I never re-registered her for the second year. I didn't register her for kinder either. Technically, I didn't have to register her for anything, public school or homeschool, until this year, but I registered her for homeschooling last year, grade 1. "Register" isn't even the correct term - here we just have to notify the Department of Education of our intent to homeschool, and fill out two progress reports per school year. 

Easy-peasy. 

So now, as Abby heads into grade 4 (!) at our local public school, in her very awesome Life Skills program, Rachael is heading into grade 2. Joseph is, theoretically, doing pre-K, although I'm not sure how much he's going to sit for bookwork. I've decided to have him "do science" with Rachael, as I think he would like the topics we're covering, and the rest... well, he's got lots of time. Reading and math will wait until he's ready. 


Cause we're coving stuff like simple machines. He'll love it. 

We're using CHC this year, with a bit of infilling mostly from Catholic Mosaic and trying to embrace some project-based stuff. We've been using a mix of different things over the past few years, trying out Mater Amabilis and Seton. I love the idea of a Charlotte Mason-style curriculum, but with MA I had to do too much of the planning. Seton was just too intense. 

CHC seems to be a happy medium. Rachael doesn't have the patience to kill-and-drill, and I would rather find myself in a position where I have to seek out extra work instead of feeling obligated to finish the whole. darn. book. That's stress I don't need. 

So this year is going to look something like this: 



with a bit of this thrown in for good measure: 


Planing her model of a playground

Lining things up

Needs more glue

And more glue... 
In the wake of making something....