Sunday, December 20, 2009

We finally finished our creche!!

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

Friday, December 18, 2009

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:

Thursday, December 17, 2009

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!!

Monday, December 14, 2009

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.