A Jarring Situation

Okay, I admit, I'm just here to rant.

Jem jars. Canadians might be familiar with the term. Americans, probably not. It's a size of home-canning jar somewhere between regular and wide-mouth. Available only in Canada. Nowdays, notoriously hard to find. I don't even think they make the jars anymore, and the lids and bands are not carried by a lot of places. There's a whole history as to why.

I have inherited jars from my grandmother. I have boxes of these darn things, which I want to use especially now that Bulk Barn is here and I'm buying everything in these handy-dandy, flimsy bags. Besides, I'm in love with chef Michael Smith, seeing that beautiful Nova Scotia pantry lined with mason jars full of ingredients.

But arrrrrrgh!!! They are so hard to find! And because now only Bernardin makes them, they're expensive! Which I don't mind if they last forever like the jars, but they do have a limited life. I'm also hoping to pick up more jars at yard sales this year, but they will probably be Jem jars as they were the most common size at one point, and because lids and rings are so hard to find....

*makes low growly noise*

Another rant, I managed to kill my tomato seedlings by accidently cooking them. LOL At least I have time to try them again and hope for the best.

O Sleep, O Gentle Sleep*

Good news. I'm not nuts.

Abby really doesn't sleep well, and the docs have agreed to do a sleep study on her! We had our appointment at the Children's Hospital Sleep Clinic yesterday, and they agreed that this is a problem. A checkbox in our favour is that the neuro on the sleep clinic "board" is our regular neurologist!

*I'm not sure if it's a good thing or bad thing when they say, "Oh yes, we've been briefed about Abigail."*

Sleep disorders are so common in kids with epilepsy and autism, and since she's got a double-neurological-whammy, it only makes sense that she's got it bad. We've actually been having to medicate her the past few months to help her sleep and so we can function. Not a long-term solution, hence why I want to get to the bottom of why she's not sleeping properly and what we can do to help her.

*does a little dance of joy*

Whoa, I suddenly got a vision of Balki and Larry.... (sorry, channelling a little Perfect Strangers there).






Abby's appointment at the clinic was fairly early in the morning, so we drove to Capital City the night before. Of course, leave it to me to forget Abby's sleeping medication at home the night before we go to the sleep clinic. It's almost funny. Almost.

So we went through a morning at the hospital (would already be not fun if I had an average almost-three-year-old), who pretty much tantrumed the entire time, because, well, let's face it she's seen more doctors and hospitals in her short life than most people see in two lifetimes. She woke up screaming (and I mean screaming) thrice the night before, so we were all functioning on about 4.5 hours of sleep. Except the baby. 'Cause she slept like a baby. Small miracles, eh?

I think I had a point to this thought, but it seems to have escaped me. I guess that's my cue to go to bed, huh?

*O sleep, O gentle sleep,
Nature's soft nurse, how have I frighted thee,
That thou no more wilt weigh my eyelids down
And steep my sense in forgetfulness?
~William Shakespeare, Henry IV, Part I

Tracing the Fine Line

There's a fine line between being cautious and being paranoid. I'm not sure where that line is.

Back in December, I *thought* I saw Rachael have a few twitches a la IS. I took her to Doc, who ordered us up an EEG. It was normal. She stopped twitching. Life was good.

She's now nodding her head. Not often, not clustered. But disturbing. She's hit her head on table, etc a couple of times while doing it. My husband has noticed it too.

I feel lost. Do "normal" kids do stuff like that? She seems fine otherwise, there's no regression, her eyes are bright and clear. She's hitting her milestones, although she seems to "forget" that she knows how to roll over.

I'm torn between worried that I'm being paranoid and risking becoming that annoying parent that's convinced something's wrong with her kid (when nothing is), and being too dismissive and regretting not seeking help sooner. I keep praying that either the nods stop (best case), or something happens that clearly indicates that I need to seek help. I don't want to see her little brain get eroded away by those damn seizures.

What does that mean if I do in fact have a second child with IS? Is it us? Our genetics? Our home? I was very convinced for a long time that Abby developing such a devastating condition was punishment. What does two kids mean?

I just watch, and wait, and worry. And pray like mad.

Uncharted Territory

I remember learning about explorers in school. You know, the whole Christopher Columbus, Jacques Cartier, and that guy who went around the world (Cook? No, no, not Jules Verne). I remember being caught up in the romantic ideas of going though uncharted waters, visiting strange lands, yada yada yada. You get the picture.

We're moving into uncharted territory on three fronts in this house:

1. Abby has been seizure-free for over one year! She's never been that long without a seizure in her life (her previous record was approximately 7 months before she was diagnosed with IS). The thought that her seizures may be gone (at least for awhile) is both thrilling and terrifying. Will she still be my child with epilepsy? At what point do they stop being referred to as epileptic? Or is it like being an alcoholic, you never really fully recover as the possibility of relapse is always darkening your door?

Either way, I'm so very, very thankful for having this precious, precious year without a seizure. It's been wonderful to see her grow and develop unobstructed by the damaging fits. I hope we can throw that map away, and never sail that sea again.

2. Rachael is rapidly approaching 7 months of age, and I realized a day or two ago that we're moving into uncharted territory with her too. I've never had an average child after Abby's diagnosis and everything went to shit (sorry mom, bad word, I know). The second half of Abby's first year of life passed in a blur of daily ACTH injections, thrice weekly hospital visits for blood work and blood pressure readings, doctor's appointments, EEG's, more blood work, more doctor's visits, MRI's, 7 daily doses of 3 different oral medications, hospital admissions, visits from my social worker... my head is swimming just thinking about it.

I was trying to corral Rachael into her diaper, thinking, "I never had so much trouble diapering Abby at this age!". Then I remembered Abby at that age.....................

What is a normal 7-month-old like anyway? When do babies normally crawl? When will she start speaking? Waving bye-bye? I don't really know! I get to experience all kinds of firsts that, in a sense, I sort of missed out with when Abby was oh so very sick.

I feel kinda cheated that I missed all that with Abby, but also like I've been given a second chance. Rachael is, in a lot of ways, a little Abby 2.0. I see her big sister in that face. I get to experience that babyhood that Abby missed, and was forced to grow up out of far too fast. I'm looking forward to it.

3. This gluten-free, casein-free diet (GFCF). We removed dairy (and the offending casein protein) from Abby's diet several months ago, and it's made a substantial difference in her maladaptive behaviours. She can sit and concentrate far better, she's less aggressive, she's needing less of that constant vestibular stimulation, and her language skills have vastly improved. She still misses the dairy (she was determined she was going to have milk at Nana's house when she saw the carton in the fridge, she was also sneaking cheese at Auntie's house at Easter from the taco salad dippy thing and feeding the parts she didn't like [such as lettuce] to the dog, and forget about reusing old cottage cheese containers as poor-man tupperware!), but is generally happy with the level and variety of foods I can provide. She's about 95% casein-free, and it's a balance between what she can tolerate and what is relatively simple to provide.

We're moving now into the gluten-free phase of the diet. I needed to learn a different vocabulary. Xanthan gum? Guar gum? Teff? Jowar flour? It's taking some experiementation, but we're starting to get the hang of it. (My husband told me this morning that this GFCF diet thing was not too bad, so I'm taking that as a compliment!) Let me tell you, it's hard. I have to totally rethink what I give her.

Luckly, there's been so much research and awareness in recent years about gluten intolerances due to Celiac's disease that there's lots of "maps" of where we need to go. But you know how it is when you're trying to navigate a new city even with a map in hand: it's still confusing as hell.

How Much Is That Doggie On The Television?

She pointed at the TV, looked at me, and panted like a dog.

Then I realized there was a dog TV.

Yes, Abby, that is a puppy. :)

Acquisition

I've never had the opportunity to witness, up close and as an adult, the process of language acquisition. Now, I do vaguely remember my brothers learning to talk, and I've had periodic exposure to nieces/nephews/friend's children going though the process; but never have I been in the nitty, gritty, trench-warfare that is learning to use language.

It really is a marvelous thing.

I've been witnessing, the past several weeks, Abby's blossoming from a non-verbal child to the beginning of a verbal one.

"Abby, what do you want?"

"Up!"

"Abby, what do you want?"

"Bubbles!" (pronounced buh-boo)

"Abby, are you hungry?"

"Ah!" (affirmative)

"Abby, clean up that mess!"

::frustrated sigh and starts cleaning up the toys she just meticulously threw all over the floor::

It's a good, good feeling to have this simple report with my child. It's amazing hearing the new things she says/mimics/does everyday.

Driving in the car near the hospital, an ambulance goes by. A perfectly whistled pseudo-siren comes from the blond, curly-headed munchkin in the backseat. We drive a little further, and same said child starts humming the first few bars of "Slippery Fish" over and over.

It was hard not to cry.