The Great Cottage Cheese Incident

This actually happened a week or two ago. It's the reason why we now have a lock on our fridge.

Abby, bless her heart, helped herself to the 500 ml just-opened container of cottage cheese (that's about a pint for all you non-metric people). She then proceeded to take the said container of cottage cheese into the living room, dump the contents on the carpet, and stomp (!) on it a la I Love Lucy.




Needless to say, it was a mess.




I have several new grey hairs.

On the positive side, we've discovered a previous owner of this house must of scotch-guarded the carpets. Bless them.

A Begining

If you're reading this, maybe you've been to my other blog, All Our Needs Are Special. I created this blog, A Prairie Catholic, because I find my musing increasingly revolve around my faith. I wanted a place where I can examine them.

And so it begins.

Randomings and the Epilepsy Rant

I've been meaning to post for awhile. Never seem to get around to it. So I'm taking five and catching up.

I unplugged from Facebook. It's scary. I feel adrift, but noticed that I have considerably more time on my hands.

I've gone back to piano. What does that mean, you ask? Many moons ago, I stopped my studies to get my ARCT in piano pedagogy. After many months (years) of musings, and the need to so something totally unrelated to the world of Autism and Infantile Spasms, I've decided (with my husband's blessings and support, of course) to complete my education. Cool eh? I feel very suave and sophisticated telling people that I'm now studying with a Russian-trained piano instructor at the University. :)

Speaking of Autism, very good news! They finally hired a second tutor to replace our girl that left in November! The new girl starts in two Mondays from now. We're all very excited.

Abby is doing well/not well. She's finally over her sinus/ear infection that took two rounds of antibiotics to clear up (that's the "doing well" part). She's still having seizures (the "not well" part). Several times a day. I'm feeling a certain level of frustration because they don't seem to be doing anything...

They've increased her VPA from 200 mg BID (daily total 400 mg) to 200 mg BID then 300 mg OD (daily total 700 mg). She's at almost 100% increase, but we see no improvements. I still haven't actually talked to the neurologist, just the nurse-clinicians. They've mentioned maybe having us make the trip in to see them, but won't give me a date. I asked when do we stop just increasing a single medication that doesn't seem to be doing very much, and when do we try something else. Their answer is that she still has "room to increase" based on her weight and trough levels (last at 73, should be between 50 and 100), so they'll just carry on for awhile yet.

No EEG has been done to see what's up, and no other tests have been done except the trough levels, ALT for liver functions and CBCs. I'm getting antsy. I want to know if the seizures are coming from the same place as before. Do they have the same profile? We should be outgrown the Infantile Spasms, so now what the hell is this? She's definately having complex partials, but I couldn't tell you how many. At least three a day, although I suspecct more because I can't keep my eyes on her every waking second as much as a try.

I lay in bed at night, trying to visualize a path for us. It's very blank. I feel like we're at a dead end, and uncharted waters. I realize now that we will probably always have seasons in her life where we will be struggling with this disorder, but it's been a long time since I've really understood what that means.

I read a great post last night. It's a blog I've followed for a long, long time, another child affected by IS. She talks about IS being a symptom, not the disease. I had thoughts like that before, but was never able to articulate it. I envy her, because for all of their struggles, they finally had an answer. We've never gotten answers, and because Abby did so well for 19 months, we weren't overly concerned about that. We had hoped that part of our life was over with. But now, suddenly, the need for answers is very real and very urgent to me.

Bah, enough already. Onward with my day to be productive! Or at least a reasonable facsimilie thereof.

We finally finished our creche!!





It really was a lot of fun. Something we will have to do as a family every year!!

The One That Carolyn Originally Published Without A Title

Okay, so I'm blogging a lot lately. I need something I can do to maintain my sanity, and where I can watch Abby out of the corner of my eye. We've also had the camera handy trying to document the seizures (never seems to be on hand when she actually has one. Yeesh!). So we seem to have a plethora of pictures.

Miss Abby loves having her picture taken. She's the queen of close-ups. I have... oh, about a million... pictures like the above.









The weather if finally warming up. Our yard has been very lonely, with no one to play in it for over a week. Hopefully we'll get some good outside time this weekend. God knows we can all use it.


We've been working on lots of crafts, both in ABA and during our free time. Abby and I are working on colouring a big nativity scene to hang in the basement. I'll post pictures when we're finished (there's lots of colouring!).

We've made some ornaments. I spent the afternoon Mod Podging some of them yesterday.




Today has not been a great day so far. We've had three seizures and a bleeder by one o'clock. A bleeder? you ask. Abby got a teeny tiny paper cut on her finger, and it bled, a lot, for about an hour. It was everywhere. The ABA tutor originally thought she had a nosebleed, there was so much bood.

It may be coincidence, just the funny way she got cut. What's worrisome to me is that one of the side effects of valproic acid (which they've now increased the dose of twice, and changed the dosing schedule) is a decreased ability to clot. We will be keeping a very, very close eye on her this weekend.


Okay, so what's with the calendar? Just before Abby was first diagnosed, I bought this awesome calendar at Superstore that was HUGE, and had these giant grids, etc. Turns out it was a lifesaver.

(we interrupt this broadcast for the fourth seizure of the day)

(maybe I really should give her an Ativan)

Back to the calendar... our entire lives were recorded in that calendar during the year-from-hell. For example:



Those images are from our old 2006/2007 calendar. It's hard to see in the photo, but there's something written pretty much every day, even the "free day" (which I wrote "free day", LOL).

I didn't buy one of those calendars last year. I didn't think I needed it. This year, my sister-in-law was selling them as a fundraiser for her sons' daycare, so I bought one. Pretty good planning on my part, eh?

The new calendar is promising to be just as full as 2007, at least in the short term:

An Update

The number of seizures is on the rise. Yesterday we had three. It's classic partial complexes, with the flicking eyes, chewing motions and/or flirty mouth, clenched fists. She makes this funny little cough went she starts to come around. An increase in the amount of valproic acid has so far not done anything. She's on antibiotics to treat the sinus infection she's been struggling with, and at least that seems to be improving.


Her seizures are leaving her exhausted. She curled up on my lap and fell asleep like this last night.


She's trying very hard to be her normal, happy self, and is mostly succeeding. I praise God for that.

Rachael has started signing!! We've been trying to capture a seizure on video for neurology, without success. We managed to capture Rachael signing, however!!

And the Greatest of These Is Fear

My Mom used to tell me I was a scaredy cat.

She used to also sing me the song: "Every party needs a pooper, that's why we invited you, party poo-per, party poo-per", but that's for another discussion. We have already mentioned the pleasant, agreeable child I once was. Let's just leave it at that.

I couldn't even list things that I was afraid of as a child, but as an adult, I'm afraid of (in no particular order):

- furnaces
- most gas appliances
- on occasion, my husband's driving
- putting my hand into strange, dark places
- earthworms
- spiders and spiderwebs
- most insects
- thunderstorms and/or tornadoes
- large dogs
- some teenagers
- slimy things

I admit it. I am a scaredy-cat. There, I said it out loud.

When Abby was diagnosed with Infantile Spasms, my most overwhelming emotion was fear. I was afraid. How do I cope? I asked myself. What does this mean? Who will my child be? Can we really do this?

Why is God mad at me?

But you adjust. You learn to cope, and develop strategies to muddle your way through.

I am afraid of spiders, but I compensate by getting a really, really big pair of shoes to squish them with. I am afraid of thunderstorms, but I keep my weather radio handy and will hide in the basement when it gets too intense. Earthworms are not scary if I wear garden gloves when touching them.

When Abby had that first, very intense round of seizures, I was very afraid. The second go-round, I was still afraid, but I felt better equipped. I knew the worst was behind us.

And now, as we plunge into a third round, there is fear, but also anger. We went almost 20 glorious months without a seizure. Until this week. I didn't know for sure until today, but it was unmistakable. And Abby knew. She's been trying to communicate it to me the past four days. She'd been crying, restless, clingy non-stop for four days. It came to a head this afternoon, when she refused to leave my side.

And then I saw it.

When it was done, there was fear in her eyes, but she saw that I knew. She cried in my arms, and all I could do was hold her tight. But then we were at peace again, and the crying, the restlessness, the absolute clinginess stopped. She was more herself again. The fear, that loneliness from holding her secret was gone.

There's nothing scarier than being alone with your fears.