All Our Needs Are Special

Random

2012-01-22T23:12:00.000-06:00

Checkin' in.

Opening Christmas Stuff

A favourite activity - piled into the chair

Cheezy

Smiling for Mom

My beautiful babies <3

That's all.

Stuff

2012-01-10T23:23:00.000-06:00

Pst.

Hey.

You.

Yes, you.

Happy New Year!

Okay, enough of that.

This is a story about stuff.

Not, not that Story About Stuff.

This one is my own.

In this case, it's the story about MY stuff. You know, the stuff that accumulates in the recesses of a house.

Yes, ladies and gentlemen, I have been purging. And purging. And purging. And a month or so later, I'm finally starting to make a dent.

Well, a small one anyway.

It never fails to both fascinate and horrify me that we can accumulate so much stuff. My husband and I don't consider ourselves materialistic people. We only have one income. Yes, we have three children, but our ability to acquire is seriously hampered by our financial situation.

So where does stuff come from?

Well, a lot comes from friends and family. I am so grateful for them. They alone provide me with enough hand-me-down clothes to comfortably clothe my children. My parents give gifts to us and our children, all year round. We are very blessed in that regard, that we never have for want our material needs.

But there's a catch. I hoard.

Yes, there it is. I admitted it. I tend to hoard.

I went though all the kids clothes. I gave away 12, yes 12 garbage bags of clothes and shoes that no one will wear because we simply have so much. I lent out 8 boxes of clothes to friends who have babies/toddlers and Rachael has outgrown her clothes. I still have clothes coming out of my ears!

Yeshe. That's a lotta stuff.

I realized something today, however. What's the deal with me hoarding? Am I not trusting that God will provide for us? I mean, it's reasonable for me to hang on to Abby's clothes that she's outgrown at this point as Rachael will grow into them in the next couple of years. But do I really need six boxes of clothes in size 3X? I needed clothes for Joseph. I ended up with 4 people giving/gifting me clothes from their own kids for me to pick through. I kept a box or two of each size of the nicest stuff, and gifted the rest on.

Sorting though box after box after box of... junk.. I realized that a lot of stuff I was hanging onto "just in case". Or sometimes it was "in case someone needs it someday". We have never wanted. God has always provided. Or, at least our family and friends have.

My new year's resolution? To let go. To not let my stuff hold onto me like that, and to trust that I will find what I need when I need it. It's also to know the limits of our stuff. Joseph doesn't need four giant diaper boxes full of infant toys. He "needs" one, and a small one at that because his sisters' toys are much more interesting anyway. Do we really need hundreds of books when there's thousands for free at our fingertips at the library? Do I really need all those fancy dishes that have never seen the light of day? Do I need those trinkets that have sat forgotten in a box since moving over two years ago?

What are your resolutions? And what is your "stuff"?

Consumed

2011-10-30T01:41:00.001-05:00

My sporadic blogging is annoying. Yes, even to me it's annoying. I often have ideas rattling around inside my head (see, when I shake it you can hear them rolling around like marbles!), but never seem to commit to them.

But this idea is compelling me. You see, I must write about Facebook again.

I know. I hear your groans and I feel your pain. But bear with me.

I've written previously about my departure from Facebook. And about coming back. Yes, I know, I'm obsessed. But this phenomenon of social media has long both intrigued me and worried me.

I remember years ago when Facebook was still "new" (Abby was a baby), a friend of mine told me that she had posted pictures of my child (and other friends' kids as well) on Facebook. I was livid. I tore her up one side and down another and made her swear she would never, ever do such a thing again. I swore I would never join such an insidious website, as I saw very clearly the apparent dangers without every truly understanding what either Facebook, nor the dangers, actually were.

Eventually, after being bombarded with invitation after invitation, curiosity got the better of me and I joined. And I was hooked.

My own feelings of malaise and mistrust was replaced by, "Wow, look at how cool this is!" I posted photos of my kids. I updated my status umpteen million times a day. I watered my imaginary garden and served meals at my virtual restaurant.

But then, one day, I had to turn it off. But by then, it had become so deeply ingrained in our culture and our daily lives that leaving suddenly left a void that was not easily filled. But I also felt a sense of freedom that I never realized I lacked.

However, in the end, I relented to the incessant pressure and rejoined. I missed finding out the nitty-gritty details of the lives of my sister-in-laws. I wanted to enter contests that you must have a Facebook account to be enterable. I needed to know when playgroup as cancelled. We have lived an uneasy coexistence for several months again.

But then two things happened.

Firstly, I realized that the majority of my status updates came not from friends and family, but from businesses. Products, newsletters, media outlets, etc. The information I was consuming was not about the personal details, but about mass consumption. That bothered me, because the whole point of me rejoining Facebook was to have personal connections that were getting hard to maintain any other way. I was obviously deluding myself.

The second one, however, I must credit Dan Meisner, the CBC Radio tech columnist. His idea was not new, and it was something I think I had intuitively concluded on my own, but he expressed it very succinctly in an interview.

We are users of Facebook as much as we're the product that Facebook sells to it's advertisers.

I'll say it again. We are the commodity that Facebook sells.

That idea startled me. I know we often trade data in exchange for benefits. Things like Airmiles, PC Points, Aeroplan, all use your data to develop marketing strategies. In exchange, you get free stuff. I admit, I love PC Points. I get free chequing and have cashed in literally hundreds upon hundreds of dollars of free groceries.

If I was truly concerned about my privacy, I wouldn't participate in those types of merchant-reward programs. I would pay everything is cash instead of using credit or debit. But I don't. I accept the trade.

But somehow Facebook is different.

Facebook is slick. You like a page? Click on the "like" button. It follows you around as you browse and live your online life, even if you're signed out. I have seen examples of this, and it disturbed me.

Yes, I like it!

Unlike something like, say, Airmiles, where you have to actively submit your information by handing over your Airmiles card, Facebook collects data on you without you even knowing. And I know they're not the only game in town that does it, but they are very, very good at it.

Everyone is so excited about Social Media and how powerful it is. It helped power the Arab Spring, and is a driving force behind the Occupy movement. But at the end of the day, it's just something else to be consumed, and to consume us.

I don't really know how to finish this post. I feel like I have this valuable insight, but not sure how to use it. I find myself on Facebook less and less since coming to these realizations, but can't seem to sever myself completely. It has me thinking, however, about my privacy and my consumption habits, and wondering whether or not I will be consumed.

I am reminded of the story of Lot, when he is fleeing from Sodom and Gomorrah. The angels tell him: "Get up, take your wife and your two daughters who are here, or else you will be consumed in the punishment of the city." (Gen 19:15) Perhaps there is a lesson there. He did flee with this family, and avoided being consumed in the punishment, but his story did not end happily. His wife, disobeying the angel's command, turns to salt. His daughters conceive children fathered by Lot, who went on to found new nations who were the enemies of Israel, and the enemies of God who were ultimately destroyed.

I shudder at what the implications of our consumption may be.

Poser

2011-08-18T23:51:00.000-05:00

I recently rejoined Facebook.

Why? At the time, it seemed like a good idea. I've discovered, however, that it's easily as annoying as reality TV. I guess it sort of is reality TV. People put their lives out on display via status updates and photo albums for the world to see.

One thing I've noticed is many people with their Facebook persona have "the pose" for their avatar. I'm sure you've seen which one I'm referring to. It's the one obviously taken at arm's length, at about forehead height, pointing downwards. It makes their forehead look really big, and their cheeks and chins impossibly skinny.

What's up with that?

I mean, not everyone has that picture as their profile pic. Lots of people use pictures of their kids. Some use very nice pictures of themselves. Others, like me, tend to use photos of random objects (that reminds me, time to update my photo...).

The picture, however, is a reflection of who we portray ourselves to be to the outside world. It's like Facebook is this huge social experiment where we are trying on different identities with our friends and associates.

I wonder what identity is shown in "the pose"? Who are they, or rather, who are they trying to be? I know the "me" on Facebook is only a small part of who I am, a pithy and cleverly-edited version of myself. ::smiles:: The "random objects" of my avatar are actually elements of my life that are precious to me: the statue from our trip to Regina; a flower from our first camping trip as a family; the stick garden Rachael and I planted as the long winter slowly melted into spring.

In our larger life, who are trying to be? I wonder if who I portray myself as to others is in fact who I am. Sometimes I wonder if that person is simply who I would rather be.

So back to "the pose". Who are they trying to be? Should I be concerned that probably 50% of my "friends" on Facebook are all trying to be the same person? I worry about the judgments I make about my friends and family by their profile pictures and their status updates. What does it say about us a society where we all take pictures of ourselves that make us look slightly like space aliens with sunken cheeks and pointy chins?

Do we even know for ourselves?

He Will Henceforth Be Known As "Baby Go"

2011-08-02T23:17:00.001-05:00

We have a son!

Not that this is new news, he is 2.5 months old already, but I just haven't seem to have to time to complete a post (although I've started several).

Anyway, we have a gorgeous son we named Joseph. Rachael calls him Baby Go, or sometimes Baby Goo. Abby just calls him "Baby".

Tis all for now!

My Fault!

2011-04-30T10:57:00.000-05:00

My mea culpas as I watch my poor neighbour trying to scrape a thick layer of ice/freezing rain from his truck so he can go to work (and he works for the electric utility, so we want him to go to work today! Our power has been flickering a bit this morning!).

You know how it's the end of April? The last day of April, to be precise? As in tomorrow, 'tis the month of May?

Yeah, this snowstorm in my fault. I tempted fate. I planted a few onion sets out in the garden with Rachael, and actually considered washing the kids' snowsuits and putting them away for the season. So sorry.

Have I mentioned that we're currently in flood stage right now? Yeah.... because we need more precipitation....

In case you're curious, here's our forecast:

A POWERFUL LATE-SEASON STORM SYSTEM OVER NORTH DAKOTA IS BRINGING A
RETURN TO WINTER WEATHER FOR MUCH OF SOUTHERN AND CENTRAL MANITOBA
TODAY. AS OF 10:00 AM CDT RADAR AND SURFACE OBSERVATIONS INDICATED
THAT SNOW IS FALLING WEST OF A LINE FROM FISHER BRANCH TO BRANDON TO
VIRDEN TO MINOT. EMBEDDED WITHIN THE TRANSITION BETWEEN RAIN AND
SNOW IS AN AREA OF FREEZING RAIN. FARTHER EAST ACROSS THE WARNING
AREA, PRECIPITATION IS FALLING IN THE FORM OF RAIN BUT WILL CHANGE
OVER TO SNOW LATER TODAY AS TEMPERATURES DROP BELOW FREEZING WITH
STRONG NORTH WINDS.

SNOW WILL CONTINUE UNTIL THIS EVENING BEFORE TAPERING OFF FROM THE
WEST. GENERAL SNOWFALL AMOUNTS OF 10 TO 20 CM ARE EXPECTED
THROUGHOUT THE WARNING AREA BY SUNDAY MORNING, WITH HIGHER AMOUNTS OF
30 TO 50 CM POSSIBLE OVER THE HIGHER ELEVATIONS OF WESTERN MANITOBA.
IN ADDITION, THE STRONG NORTHERLY WINDS, WHICH HAVE GUSTED AT TIMES
AS AS HIGH AS 90 KM/H, ARE RESULTING IN NEAR-ZERO VISIBILITY IN SNOW
AND BLOWING SNOW, PRIMARILY IN WEST-CENTRAL MANITOBA. HIGHWAY TRAVEL
HAS BECOME DIFFICULT OVER MUCH OF THE REGION AND RESIDENTS SHOULD BE
PREPARED TO ADJUST TRAVEL PLANS ACCORDINGLY. THE COMBINATION OF
HEAVY SNOW AND STRONG WINDS MAY ALSO CAUSE POWER OUTAGES.

(for those of you who don't speak metric, that translates into 10 cm = 4 inches, 20 cm = 8 inches, 50 cm = 20 inches, 90 km/h = about 55 mph)

Again, mea culpa.

The Unending Penance

2011-04-21T23:44:00.000-05:00

Today is Holy Thursday.

This day, the first day of the Triduum, is the most powerful day of the liturgical year for me. There is something very powerful about watching the ritual washing of the feet, and the smell of the incense. The loving and reverent way the Eucharist is wrapped in the cope and then proceeds to the altar of repose. The way Mass abruptly ends without dismissal, and the way the tabernacle is left open, showing physical evidence of Christ's departure from us.

It was a Holy Thursday eight years ago I knew my place was in the Catholic Church, and I never regretted my return.

In the quiet moments of adoration this evening, I was reminded of my unending penance. Years ago, during Reconcilation (Confession), my penance was simple: I was do thank God every day for something. The confessor placed no limits on how many times I needed to do this. All these years later, I continue to do my penance every day, and will probably continue to do it until the day I draw my last breath.

My unending penance. I don't even recall what specifically my sins were that I confessed that day, only that it was the first confession I had made in nearly 20 years. And how much that penance has changed my life.

I contemplated, looking around at the interior of the sanctuary, how connected we are, as Catholics, to the past. The continuity is startling to me at times. I am reminded by something said by the then-Monseigneur Fulton Sheen in a video of the Tridentine Mass: nothing in the Church is thrown away. Everything is build upon, preserved.

It struck me very much during the singing of the Pange Lingua during the procession: here we are, centuries upon centuries later, singing the same words, the same tune, that our Catholic forbearers sang (it was penned by St. Thomas Aquinas from the 13th century). Many of the words we speak (the Kyrie, for example) date from the day of the early Church. Even our creed in some form or another dates from at least the 4th century. Gazing around the church, you can see the symbols and the elements that have remained with us for 2000 years... Even with the advent of Vatican II during the 1960's, the Catholicity of the Church is still very much intact.

We are taught that the Church is eternal and unending, at least until the return of Christ. There is a continuity with who we are and where we came from that I find is often lacking in our modern society.

What does this have to do with my unending penance? Nothing, I suppose, on a very practical level. It's the just the idea, I suppose, of that eternalness that they both have. Both the continuity of the Church and my unending penance brings me much peace and reminds me of Christ's own faithfulness to us.

PANGE lingua gloriosi
Corporis mysterium,
Sanguinisque pretiosi,
quem in mundi pretium
fructus ventris generosi
Rex effudit Gentium.

Lucy

2011-02-09T19:24:00.000-06:00

Nearly 12 years ago to the day, I suddenly lost my grandfather, Prosper. Today, his sister Lucy has joined him in Heaven.

Most of you have never met my Aunty Lucy. Most of you haven't even heard of my Aunty Lucy. But when I was a kid, I figured everyone needed (and had!) an Aunty Lucy.

I always remember her living in an apartment down the street from my grandparents. I loved visiting her: she exuded a sort of vibrance that was appealing to me. Her closeness and affection for her brother was evident to me even at a young age, and it was one of the most ready examples of sibling relationships that I had growing up.

She was someone who made me laugh and smile. Although I haven't seen much of her in recent years, I will miss that vibrancy that she brought to our lives and to our family. I will always hold the memories I have of her close to my heart.

Say hi to Grandpa for me...

Negligent

2011-01-21T16:32:00.000-06:00

Yeah, I know, it's been awhile.

I will catch you up, I promise! And yes, Ethan is doing fabulous! He finally got out of the hospital shortly before Christmas after a number of struggles and setbacks. He continues to have struggles and difficulties, but makes gains daily and we are most pleased with how his recovery is going!

My small family is doing well, Rachael turned 2 in October, and is rapidly growing from a baby into a little girl. Plus she's finally sleeping through the night (mostly)! Hooray!

Abby is coming down the home stretch for preschool. Kindergarten in the fall! And talking! Her vocabulary has increased significantly in the past month or so, adding "book", "socks", "Pa" (grandpa), and "peh-shaz" (pizza) this past week alone!

And a new baby come May!

Yep, we're now a whole 23 weeks into this relatively problem-free pregnancy, and things are going smoothly. He (and I say "he" to distinguish between the baby and my girls, but I really don't know the gender of the baby) has been making his presence known the past few weeks, and Daddy has even been able to feel the baby move at 20 or so weeks, even with an anterior placenta (meaning it's in the front of the uterus, "in the way" so to speak... the same I was with Rachael!). So, strong baby and quite uncooperative with the sonographer! LOL.

Okay, two very bored girls vying for my attention (the weather's been atrocious and cold since about November), so I'll catch up soon!

Awakenings

2010-10-26T20:32:00.000-05:00

I'm pleased to report that Ethan has finally opened his eyes as of yesterday! ::high five::

He seems aware and is attempting to interact with people, and is fully off the ventilator and doing well. He continues to have some seizures, but I think if we come out of this with epilepsy as the "new normal" we can all cope with that.

To everyone who has offered the family support, prayers, and good thoughts, I thank you. I know Ethan and my sister-in-law appreciate it immensely.

God Bless.

Interlude

2010-10-21T23:19:00.000-05:00

Hi. Yes, I haven't posted for awhile. I know I have things 2 and 3 to talk about. We have been interrupted by our nephew, Ethan, getting sick. I mean sick-sick, really sick.

Two weeks ago today, four-year-old Ethan (who's only four days younger than my precious Abby) complained to his mom that he wasn't feeling well. By Saturday he was having seizures, and was diagnosed with meningitis. By Tuesday it had progressed into encephalitis and he was going into status epilepticus. By Wednesday (a week ago yesterday), he was in a medically-induced coma trying to save his brain. He still hasn't woken up. He was on so many strong medications that it was affecting his kidney function. Then they suspected that maybe it was vasculitis, but the sugar-cube piece of brain they removed to do the biopsy says it isn't. Now they suspect it's just a common cold or maybe the flu gone really, really bad.

Don't you feel like I just described an episode of House?

Anyway, he's still in the PICU at the hospital, and mom (my sister-in-law, a single mom at that) is struggling to cope along with caring for the three other children. Michael's family's been awesome, and everyone has helped including caring for the siblings, and taking turns sitting at Ethan's bedside so Mom can spend time with her other children.

Ethan is slowly getting better, but we're all waiting for him to wake up and no one knows what his long-term prognosis is. They've cut back some of the medications, so his kidneys are doing better, and he's weaning off the ventilator, which is excellent.

And we keep waiting for him to wake up...

First and a Half of Three

2010-09-25T13:21:00.000-05:00

Okay, I guess yesterday's post really should have been "First of Four". Sorry.

My "first and a half" thing? The GFCF diet stuff.

It's hard. Some days, really hard. The elimination of soy and eggs make it especially rigorous to adhere to the diet. Many favourite foods are off limits, and she doesn't understand why.

We questioned if maybe soy and eggs have been the problem the entire time, and maybe we didn't need to be on the GFCF diet. So we broke it. For a week. We had a wheat-bread, yogurt-eating lollapalooza.

The first day was okay. She looked at me quite disbelievingly when I offered her yogurt. She proceeded to devour the entire container.

The second day was not too bad. Maybe slightly more obsessive than usual, but nothing to write home about. She had trouble settling to sleep that night, and was up a bit earlier than normal.

By the third day, the sleep problems were become more marked.

By the end of the week, she was only sleeping 5-6 hours a night (and not all at once, she would start jumping on our bed at 3 a.m.), down from her 11-12 hours a night that she now normally sleeps, unmedicated.

We have established the need for the GFCF diet.

First of Three

2010-09-24T20:24:00.002-05:00

No, not a post about the Borg. Although that might be cool if I did a post on the Borg sometime.

I have lots of stuff to catch up on... once I actually post everything that's happened, you'll see why it took me so long to post it!

Instead of creating one, long post, however, I will break it up into several smaller posts. More easily digested that way. Like chewing your food vs. gulping it down whole.

The big news? We pulled Abby out of ABA. Finito. Kaput. Le fin.

After a disastrous teleconference with St. Amant regarding nursery school [at which I felt like the acting in-charge-person was essentially daring me to quit the program], we quit the program. Right then and there.

Effective when? Immediately.

Would I like help creating an exit strategy? No thanks, I already have one.

Would you like to have a debrief? Not really.

Would you care to elaborate on your issues with the program so we can help other families? If you haven't ascertained what my "issues" are by now, I'm sorry I can't help you.

So.... what now?

We moved from having a "comprehensive" (and I use the term laughingly and sarcastically) therapy program to having a hodge-podge of services for Abby.

It's fun, actually. We get to go to playgroup.

Heck, we get to leave the house, that in itself is a novelty and has helped my depression immensely. But I digress...

I get to expose her a variety of novel situations and social settings. Most days she does great. Some days not so great. That's okay.

We do home-schoolish things every day, working on different school-readiness skills. Rachael does them with us too, and is loving it.

We get to sleep in when we need to, and take a "day off" when we're not feeling so well.

We go to the park, and sing songs while on the swings, and play games and practice eye contact.

We go to nursery school two afternoons a week, and she has a ECE helper with her. Yeah!

We're seeing the occupational therapist every other week, the speech therapist every other week, and the Floortime worker once a week.

Lots to do, lots to keep track of, and I'm the least stressed about "therapy" than I have been in a year.

Awesome, eh?

Welcome to our "new and improved life"! You know, where we actually have a life.

Apparently, I'm "It"...

2010-08-19T00:36:00.002-05:00

Q: When is telephone tag no fun?
A: When you're the only person playing it.

Yes, they have not called me to tell me what the H*ll is going on. Well, that's not entirely true. One of several people I left messages with called me back at the end of the day (naturally), when I wasn't home (of course!), and said that I should call so-and-so tomorrow.

A so-and-so who's already not calling me back.

::lots of nonsensical cursing and swearing, à la Fred Flintstone::

That is all. I've pretty much had a Cr*ptacular day, and now I'm going to bed hoping tomorrow is just slightly less Cr*ptacular.

Addendum: Okay, so I went looking on YouTube trying to find a video of Freddie-Boy doing his fake-swearing thing, and found this instead. Now that I've picked my dropped jaw off the floor, I wanted to share it with you all. ::smiles:: I watched it twice, and I'm not sure if I'm more shocked by the product placement, or the fact that the boys are hiding behind the house so they don't have to watch the girls work while they goof off.

The ABA Saga

2010-08-17T15:13:00.001-05:00

Ready for the ABA story? No? Too bad. You're going to hear it anyway. I have a serious need to rant. It's my blog and I'll rant if I want to. :P

Remember back in November when when we lost a tutor? And then Abby started having seizures again? And after that, we got two new tutors, only to have Abby come down with her mystery illness?

When the dust finally settled, and we tried to get back into the routine, Abby was unimpressed. I haven't talked about it on the blog because I didn't think I could without publicly trashing the program.

I am now going to publicly trash the program. But just a little.

After such a long interval without regular ABA, we thrust her back into the program full-tilt expecting her to basically pick up where she left off.

Wrong-O.

Let me preface this by saying there are serious organizational deficiencies in the ABA program. Several. Many. I could go on for pages about the problems we've had, from staffing changes without prior notification (I sometimes get schedules in the mail with new, random people on it), to serious security/privacy breeches, and.... oh, I'll stop there before I get too riled up.

Abby was unhappy with her "new" tutors. She screamed. She fought. Eventually, she just shut down. They would show up at the house, and her eyes would just glaze over and she'd leave for Paris or something. She would be unresponsive. Her frustration and unhappiness spilled over into downtime.

It was disheartening, and I have been on the verge of withdrawing her from the program countless times. (I would go to bed ranting, "That's it! We're done! I'm calling them tomorrow and telling them where to stick it!", only to wake up in the morning and try it one more day.) I would literally cuddle with her at night and cry because I felt so bad about her unhappiness.

After numerous lengthy discussions with our consultant (who is trying her hardest, bless her soul) and the family coordinator (who has since quit, hope it wasn't anything I said!), we changed strategies. I still feel that the tutors we had were not a good fit for our family, which is ironic because they rejected numerous candidates for positions in the FOUR MONTHS!!! it took them to find the staff. But I was willing to try changing strategies to "enhance the reinforcement value of the tutors to encourage participation".

Whatever.

I told them that I would make a decision about staying in the program during summer shut-down (the last two week in July leading up to the long-weekend in August), which has long since past. I am still on the fence. Things are going better, but they're not doing any actual work. They're still "enhancing the reinforcement value of the tutors" by playing with her six hours a day for the past month or so.

Whatever.

But things were starting to work out. Abby was happier. I thought maybe it was a sign that I should keep Abby in the program. I randomly took out a book about Autism from the library, and it said that ABA was about learning to learn. I would live with that. I wanted Abby to learn to learn.

So when a phone call came last week telling me that our morning tutor was quitting and Friday 20 August would be her last day, I was taken a little aback. "Geez God," I said to Him, "Don't send me any mixed signals or anything". But I realized that maybe this was an opportunity.

One of my issues with our current tutors is Nursery School. I had elected to send Abby to Nursery School two mornings a week to help with her socialization (because I'm not entirely convinced spending 6+ hours a day with an adult tutor in my house is going to help her learn to interact with her peers), and a tutor goes with her.

Normally in the jurisdiction where I live, I can apply to the Daycare office to get funding for the school to hire an extra ECE (Early Childhood Educator) to help Abby in the integrated classroom setting. However, the "service delivery model" for ABA is that an ABA tutor goes with the child and is their helper during school hours.

In theory, it's a great idea. I mean, she gets a helper either way, right?

Right?

Wrong.

There's a big, big, BIG difference between an ABA tutor who has education in the ABA way of thinking vs. an experienced, specially-trained ECE. Did I mention there's a BIG difference? I found that the tutors were lacking the prerequisite skills to successfully help Abby navigate the classroom. The feedback I got from the school director deepened my concerns. The director and I hatched a plan at the end of the school year in June to get an ECE in place for Abby for the fall.

Okay, I wrote that and realized that it sounded like we had this diabolical scheme or something. It's nothing like that. We just wanted to do everything in our power to get the appropriate staff in place for Abby for September. Just so we're clear on that point, okay?

Anyway, with one tutor quitting, I saw the opportunity. Maybe God is listening after all. I proposed to the program that we shuffle the schedules around so that I had a part-time tutor in the morning only, and I could send Abby to school two afternoons a week, which coincided with when the ECE was available. I told the ABA program that I wasn't holding my breath that a replacement tutor would be hired in the near future seeing how the last one took four months, and I wanted to fill in the gaps the best I could with what was available to me (those were my exact words, BTW).

I had already asked the Daycare office about funding, and was told that the ABA program had to basically give their blessings to my plan before they would consider my request for funding (to prevent double-dipping from the provincial pot, I understand and I'm okay with it).

I spent several days last week trying to wring an answer from ABA. Finally on Friday afternoon the big mucky-muck calls and tells me that they will consider my proposal and get back to me on Tuesday after the Big Meeting (which is today as I write this) to let me know.

Yesterday (Monday, the day before the Big Meeting) at the end of the day (because important business should only be conducted at the end of the day where no one else is left in the office), they call me to advise me that they are sending a tutor from one of the other homes in our area to my house tomorrow (which is today) for some training.

Oh?

Her house is going to Kindergarten next month, so they're transitioning over to the School-Aged program. So they're sending her to my house.

Oh?

And an important detail regarding said tutor-from-the-other-house popped into my head. She's six months pregnant. Which means she'll be gone on her maternity leave for a year in, say, three months?

Damn.

Funny the big mucky-muck didn't mention anything about this Friday afternoon when I talked to her.

Hmm....

Feeling like there was something more afoot, I told the poor girl in Scheduling that I would not authorize any additional staff in my home until someone called me and explained what was happening. In detail. Thank-you.

She harrumphed and said she would see what she could do.

Guess what? Something more was afoot.

This morning, bright and early, I get a call from a middle-level mucky-muck (I guess that would just make her a mucky. Or would that be a muck?) apologizing for the lack of communication. I probably would have felt more gracious about it if it was the first time, not the fourth time, there's been a "lack of communication" regarding staff changes.

But don't worry, I was polite. Barely.

Apparently when they notified me about the morning tutor leaving, they failed to also notify me that the afternoon tutor has also tendered her resignation. Whose last day, incidently, is also this upcoming Friday.

::head desk::

I agreed to the pregnant tutor coming on board as a stop-gap solution to the having absolutely no staff as of Monday problem.

I wish I had an ending to this post. Right now, it's almost 3:15, and I have yet to hear the results of the Big Meeting from this morning. I need to make a decision this week. Go or stay? Stay or go? The idea of life after ABA is a little scary. We've been in the program for almost two years, roughly half of Abby's short life.

In part, my reluctance to leave the program is due to my own inadequacies. I have a track record of leaving things undone. Starting projects and never finishing. Ask my mother.

In recent months, I have asked myself: "Why do I want to leave the ABA program? Am I going to let Abby cut and run every time things get tough? Am I giving up or moving on?".

In other words, I'm worried that if I give up too easily, I risk transferring my own pattern of unfinished business to my children. But maybe we've stuck around way too long because of my own fears about having yet another unfinished business.

::long, mournful sigh::

And yet, with yet another staff change, while it will cause stress, it may turn things around for us. It might just be the change we're looking for.

::another long, mournful sigh::

Anyone Missing a Garden Gnome?

2010-07-27T23:25:00.001-05:00

I love it when news stories make me laugh out loud.

(the comments are almost as funny as the news piece itself!)

The Queen City

2010-07-26T16:01:00.019-05:00

The best part of your vacation is the coming home part. - My Dad

Canola field near Broadview, Saskatchewan, with storm clouds in the distance

Our trip was, to put it mildly, an astounding success. I kid you not.

We spent a luxurious five nights in our camper at a campground just outside the city limits of the beautiful city of Regina, Saskatchewan, AKA the Queen City (In case you were wondering, the word regina is latin for queen). Yes, we went to Saskatchewan for our holidays.

Quit laughing. We like it there. We went to Moose Jaw for our Honeymoon.

Really, you can stop laughing now. I happen to like Saskatchewan.

Okay, those of you who don't live in Canada may be confused at this point. Saskatchewan is often the brunt of jokes. It can be very, very flat and treeless at times (although that's really a relatively small part of the province. It's unfortunately the part you see if you're driving through on the Trans-Canada on your way to someplace better). It's epitomized by the lyrics to the popular Canadian sitcom, Corner Gas (which just happens to be about Saskatchewan)... "You can tell me that your dog ran away, then you tell me that it takes three days...".

Saskatchewan... hard to spell, easy to draw...

The kids did very well. Abby exceeded our expectations. She ate and slept well. She used public restrooms (we had lots of issues with that until very recently). She tried new things, and was generally a very happy kid. She was very ready to come home by the time we left. LOL.

Regina is a beautiful city. It's hard to believe that it is, in a sense, totally artificial, with all the trees and such.

Confused?

Where Regina was built is a semi-arid, treeless, flat... expanse. It's almost a desert. There was nothing there 150 years ago except a trickle of a creek that has since been dammed and built up into the beautiful Wascana Lake and adjoining park. Every tree is planted. Every hill is sculpted. Every blade of grass is meticulously watered to keep it from dying.

It's natural beauty is entirely man-made. Cool, eh?

Here are the highlights of our trip:

Our chalet

Our camper. We bought it earlier this year from the parents of a good friend of mine. While not huge, we thought it was quite spacious and luxurious compared to tenting. Then we saw some of the RV's and 5th Wheels at the campground. I'm pretty sure some of them had more square footage (and a bigger bathroom) than the little house Michael was living in when we met all those years ago.

The whole camper thing worked out well. Not only is it a fraction of what a hotel costs (we basically camped five nights for the cost of one night in a nice hotel), you also get to bring your kitchen with you. Makes the GFCF thing infinitely easier.

Legislative building

The Legislative grounds. My brain still thinks of it as the Palais legislatif from my days in French Immersion/Francophone University. Besides I think the French sounds for sophisticated. It was quite lovely. We didn't go inside but enjoyed the grounds instead. It's on the shores of Wascana Lake.

That's a statue of Her Majesty Queen Elizabeth II on her favourite horse. The statue was erected for the horse's birthday or something. I didn't get to read the plaque very well... it has the words favourite, horse, birthday and statue on it. I had to piece the rest together myself. *shrugs* Nice statue though.

The kids. Just because they're so gosh darn cute. :)

The lake is really very lovely. It was started in the 1800's, and was drained and islands were created using only hand labour in the 1930's as a make-work project. The lake was drained again recently (2003 I think) for what they dubbed "the Big Dig", where they deepened the lake and created another island or two (they used machines this time). All in all, a piece of paradise in the middle of the city.

Isn't that an awesome picture?

It was challenging taking pictures this trip. Abby loves having her picture taken. Rachael hated it, and I often had to ambush her. Weird.

Anyway, we stopped and ate a snack in a picnic area.

Eating

Abby stuffing an entire piece of... something... in her mouth.

Come on Mom, I'm done, let's go.

Let's gooooo.... we're boooooored....


Rachael patrolling the bathroom perimeter while Daddy and Abby used the potty.

Totem pole. Obviously.

There was this awesome totem pole there. Why there was a West-Coast totem pole in the middle of Saskatchewan I'm not sure. The plaque said something about a gift. Maybe it was for the Queen's horse's birthday? (As you see, I wasn't real big about reading the plaques this time out.)

Daddy and his girls


Same shot, except with Mommy.

Relaxing on the wormy-thing, enjoying the ride

On the other side of the lake, they had this great playground that we actually visited several times. They had this giant wormy thing that bounced. It's hard to explain. The kids liked it.

Michael riding the big wormy thing

They also had spinny things. Abby discovered she likes to spin, or rather, be spun. There was the big, slow one:


Brave Daddy with the girls on the big spinner

But then there was a smaller, faster spinner.

Abby going for a ride

Abby LOVED the blue spinner. We encountered several other playgrounds in Regina that had something similar, and she's want to spin on the them until she was literally green. We felt ill just watching her. We were never too sure if the look on her face was joy or terror, but every time we stopped the spinner and asked if she wanted more, she would enthusiastically sign, "more".

Walking back to the van

We spent a lot of time exploring the city and finding playgrounds to entertain the kids. One had a big hill, which even though where we live is relatively hilly, there's few actual hills to play on.

Rachael on her hill-climbing expedition

Crawling down the hill is fun!

Daddy after the rolling-down-the-hill demonstration

One place we stopped also had a big puddle, and a big map of Canada painted on the black-top!

Who needs rubber boots?

Rachael doing her Godzilla thing on Newfoundland and Laborador

We also visited Government House, the home of the lieutenant governor. It was very pretty, with beautiful landscaping and nice flowers. The interior is a museum (and offices, but that part's not open to the public) and they have an "educational playroom" in the basement.

The kids were less than impressed. It was our last day there. Their favourite part of Government House was the elevator ride.

Cue elevator music

But I did take a picture of the plaque, fulling intending to read it later...

We also attended Mass at the Holy Rosary Cathedral. It was very tall.

I didn't take any pictures of the interior because, well, frankly it wasn't very interesting. It was obviously renovated sometime in the 1970's or 1980's in the "Spirit of Vatican II", not that there's anything wrong with that. There just was this terrible discordance between the gorgeous neo-classical, gothic-esque exterior and the bland, biege and boring interior. *sigh* Perhaps I've been spoiled since our local parish (of approximately the same vintage and architecture) has had a serious restoration in recent years.

Well, that's the big highlights that I have pictures for. Of course, we did tons more, and I will discuss them in another post. For now, supper is waiting and a cranky toddler needs her Mommy.

Thanks for reading this super long post!

Vacation

2010-07-18T17:27:00.000-05:00

Hi! Sorry it's been forever... life has been busy. As I'm writing this, we're sitting in our camper in lovely Regina, Saskatchewan on a little holiday!

In our furthest sojourn from home, our kids are doing great and adapting well to new and novel situations. So don't worry, we're taking pictures and will share our journey with you all when we get home!

Four Things

2010-06-21T13:40:00.000-05:00

Okay, so here's the "other stuff".

1. We got Abby's allergy testing back. In addition to her pork, blueberry, sesame and sweet potato allergies, and in addition to her casein (for sure) and gluten (suspected, although we're still in the "trial" phase) intolerances, we have discovered that she's also allergic to soy and eggs. That has seriously narrowed our food choices... yet again.

All the poor kid wants is a glass of chocolate soy milk, real toast with butter and McDonald's french fries. All of which are off limits.

2. We tried the Neti Pot. She was okay with it for about the first ten seconds until she caught on to what I was doing. Then she wasn't so okay with it.

It seems to have helped, however. We'll keep at 'er for a few days, twice a day, and see what happens.

3. I forgot to give her her afternoon dose of anti-seizure meds yesterday. Ooops. She seemed to be fine, however. Actually, better than fine. She was feeling happy and smiling in the evening. Connection?

Michael and I have discussed cutting back on her meds. We're undecided what to do. We don't think it was the meds that mysteriously made her stop having seizures back in April and we're wondering how much the meds are affecting her physically and mentally.

I guess what I would really like is to talk to the neurologist about it, and not her lacky-nurse-clinicians who automatically say "no" to everything I propose. *snorts* Good luck getting Dr. B on the phone, however. And Dr. E, the pediatrician is away on holidays.

4. Canning season has begun! I procured a mess of rhubarb from the first outdoor Farmer's Market of the season, and proceeded to can rhubarb marmalade and rhubarb syrup.

The marmalade was ridiculously easy and insanely delicious. We've already eaten a jar. The syrup is delicious mixed with soda water or carbonated spring water for a refreshing "home made", old-fashioned soda. Kinda sweet and kinda tart. Or add a bit to your iced tea!

Okay, I lied. There's five things.

5. Still undecided as to the fate of ABA. Abby is obviously unhappy, and the tutors are frustrated. The consultant, bless her soul, is trying her best to resolve this, but deep down I have suspicions that it may be unresolvable at this point. We've got three weeks until my self-appointed deadline to stay in or get out of the program.

There's a lot more to this story, and I will post it down the road when I know how the story ends.

Stupid Rain

2010-06-20T19:41:00.000-05:00

The title, methinks, says it all.

We've gone... what, a whole 48 hours without rain? And now it's raining. Again. And not a little bit of rain. Buckets. Boatloads.

We had six inches of rain last month. We've had close to four inches already this month. Some places within an hour's drive have had double that. Our ten inches is about double what we normally get for all of May and June, and there's still ten days left in June!

Abby's not feeling great. She looks like she has another sinus infection, and seems to be in pain. Motrin helps, but doesn't resolve the issue. She's taken to napping during the day again.

We bought a Neti Pot to try to flush stuff out, but we keep chickening out doing it (I want Michael to try it out on himself first, but so far he hasn't). With the black eye she's sporting due to a collision at school last week, she looks like a prize fighter.

Rachael is covered in huge mosquito welts. And I mean welts. I forgotten how much little kids swell up from them. There's just a couple million mosquitoes here. We never found the buggers that bad since moving here four and a half years ago. The soil here is quite sandy compared to Capital City (which is world-famous for it's mire and gumbo), and tends to have less standing water. However, eventually even the sand gets saturated and... voila! standing water and mosquito breeding grounds.

I have lots of other stuff to say and share, but I will make another post to do it (later).

And to all the papas out there.... Happy Daddy's Day!

When Pictures Speak A Hundred Thousand Words

2010-06-03T23:03:00.000-05:00

Click here.

Rain, Rain, Go Away!

2010-06-03T16:24:00.002-05:00

I want to plant my garden today!

I love gardening. It's very satisfying to plant something and watch it grow.

And then to eat it. Yum!

We're running a little behind schedule this year due to the weather. It's been.... uncooperative. My rental garden plot wasn't ready until the May long weekend , and the weather has been pretty terrible since then. The few nice days we've had got taken up by delivering flyers, or mowing the lawn, or doing one of the other million things that needed to get done. Right. Now.

And now it's raining. Again. Because we needed more rain after the three inches we got less than a week ago.

::rolls eyes and sighs::

Back to the garden. I had a community garden plot last year, and it was great. Except it got vandalized. Repeatedly. Someone kept pulling out all my carrots and tossing them around. And it wasn't an animal unless it wears a size 9 Nike running shoe.

I had a nice little garden at the old house (see photo above!), I got about 60 lbs of tomatoes off it it last year! But alas, no garden in the yard this year. It's full of gorgeous perennials and trees, but I haven't found the "right" spot for a garden. Yet. Give me time.

So this year, we rented a 1000 square foot plot along the Low Road at a nice little garden market organic farm that gives renters first dibs on the raspberries (my hands are trembling, I can hardly wait!).

Plus, we got a full share CSA again this year.

And did I mention the new house has two beautiful apple trees?

I'm going to up to my eyeballs in canning and preserving come August!

That is, assuming it stops raining....

Picture Perfect

2010-06-02T00:02:00.000-05:00

(I can't take credit for all of them. The first eight my mom took with her awesome new Canon Powershot camera).

(My new pet monkey)

(Concentrating on colouring)

(Time for tea!)

(Getting ready to cruise the 'hood)

(Girls sporting new 'dos courtesy of our respite worker!)

TMI???

2010-06-01T23:31:00.001-05:00

Click here to read the funniest news story of the day.

(Adrienne, this one is right out of the V&C files, methinks...)

Even Grandpa Would Be Proud.... (I Think?)

2010-06-01T14:16:00.001-05:00

Abby recently discovered ketchup.

And I'm not talking about a little squirt of ketchup on a hamburger. I'm talking puddles and pools of ketchup for just about everything (although I do draw the line at having ketchup with cereal, no matter how much she begs). Now, we really do see this as a good thing... she's trying new foods she otherwise wouldn't eat just because she can dip it in ketchup.

We keep telling her that Grandpa (and Nana) would be proud. My father is a know ketchup user. One of my clearest memories as a child is him piling gravy and horseradish and ketchup on his roast beef at Sunday dinner. Or sour cream and fried onions and ketchup on his perogies. Or... well, you get my drift. He always ate every lick too.

So anyway...

::ahem::

Abby's latest ketchup taste sensation?

Mmmmm.... wait for it....

Deeeeeelicous red grapes dipped in ketchup.

Yum!

(She had three helpings.)

The Day Google Was Unhelpful

2010-05-29T16:39:00.000-05:00

My search request?

gf quick buns (meaning, gluten-free quick buns)

My results?

SIR MIX-A-LOT LYRICS - Baby Got Back
So your girlfriend rolls a Honda, playin' workout tapes by Fonda But Fonda ain't got a motor in the back ... Unless you've got buns, hun. You can do side bends or sit-ups, ... And I pull up quick to retrieve it. So Cosmo says you're fat ...
www.azlyrics.com/lyrics/sirmixalot/babygotback.html

Not quite what I had in mind....

::sigh::

Procrastinating, Impetigo, The Best Part and Pandemonium

2010-05-29T00:36:00.001-05:00

Okay, so I've been ignoring the blog. I just checked my Google Reader and cringed that I have 558 posts to read from the various blogs I follow. Ha ha ha ha ha ha ha ha ha.... That's what I get for procrastinating.

Abby is doing better. The identity of her mystery illness was never discovered, but she seems to be mostly over it now. We've gone from sleeping 16 hours days to barely sleeping 8 or 9 a lot of nights.

::sigh::

But she's happy, giggly, skips through the house, puts her feet in my face and demands I place the "stinky feet" game (she gleefully chants "key-key, key-key" over and over again). Apparently, 8 or 9 hours seems to be enough sleep for now. I just can do without the 5 a.m. wake ups.

The mystery rash? Impetigo. Her sister caught it too.

Oh! And I didn't even tell you the best part!!!!!

As mysteriously as her seizures started in December, they quit on April 23. None since then. Nothing. Nada.

So now I'm very convinced that this whole winter and spring of seizures-sinusinfections-liverishsymptoms-malaise-sleepingsickness is all related. To what, I haven't a clue, but I guess I won't dwell on it too much as long as she gets better.

That's all I gots energy for. Gotta get to bed before the 5 a.m. wake up call. We tuckered the kids out at the Y tonight, so maybe they'll let us sleep in tomorrow. (It was awesome. Fourty-five minutes in the pool followed by another 45 minutes of utter pandemonium in the gym with screaming children, tricycles, a giant pirate-ship bouncer and kid-sized shopping carts filled with basketballs. Oh, did I mention the pirate-ship bouncer?)

Okay Jen, This One's For You

2010-05-03T00:15:00.000-05:00

Bah, it's getting late, so you can go read her thingy here. And here's my questions (okay, technically they're Jen's questions and my answers, but you get my drift, right?):

If you could go anywhere for a vacation, money no object, where would you go and why? Who would you take with you?
My husband and I would either go the East Coast during the Fall to see the pretty leaves. Or "do" Europe. Just because we've said we both want to do that.

What has been your biggest challenge as an adult?
::snorts::
Other than having to behave like a grownup?

What are you currently reading? What led you to that book?
I am currently reading Healing Our Autistic Children: A Medical Plan for Restoring Your Child's Health. I borrowed it from my Mom. She said it was good. She was right.

What is one thing you will never ever ever eat? Why?
Snails. Because I don't like them alive and outdoors, never mind dead and on my plate.

It is Sunday morning, 10:00 AM. What are you doing?
Well, it's actually 12:07 a.m. Monday morning, but at 10 a.m. I was corralling my children into their coats so we could go home from Mass.

Which is more important to you? A tidy home or a clean home? Is there a difference to you?
Yes, a tidy home everything may be put away, but your socks will still turn black walking around on the bare floors. I would love clean, but I'll settle for tidy.

If you were given a full-ride scholarship to the post-secondary institution of your choice, where would you go? What courses would you take?
I would go to school in Ontario to become a midwife.

Would you rather go to an action movie or a girly movie?
I don't know. I would just want it to be a Star Trek one.

If/when you start to grow grey hair, will you wear it with pride or dye it into submission?
Seeing how I started greying when I was 20 (thanks Mom, by the way), I usually dye it. I admit, however, that I have gotten rather lazy in that department as of late, and have two boxes of hair dye sitting under my bathroom sink doing nothing the past couple of months.

Dogs or cats?
We have a cat, but my kids think anything with four legs and fur are dogs (including horses, apparently).

Okay now, I'm going to bed. Night-night!

Oh, and On a Happier Note...

2010-05-02T23:55:00.000-05:00

We have officially gone 10 days with no seizure!!!! With a reduction in anti-seizure meds yet!

Abby is slowly getting better. I'm convinced the nutritional supplements are helping. However, she now has a weird rash on her leg that Dr. E says is allergy, but my own research suggests may be her body trying to detox.

After much hemming and hawing, it's been (un)officially decided that Abby has does have something weird going on with her liver, unrelated to her VPA, not showing up on her ALTs, not causing jaundice, but obviously effecting her systemically. We were sent home from the doctor's office with instructions to "keep doing whatever it is you're doing, as it seems to be working".

::sigh::

Question and Answer

2010-05-02T23:48:00.001-05:00

When your child has a "condition", especially idiopathic ones, you inevitably look inward for causes. You can't help it.

Did I eat the wrong things when I was pregnant?

Too much fish? Not enough fish?

Did I breathe in too much second-hand smoke?

Too much time in the sun?

Did I sleep on my left side like I was supposed to? Or was it my right?

Was something wrong at birth and I just didn't see it?

Should I have let you get that vaccine?

Is our water no good? Is it poisoning you?

Should I have fed you the barley cereal before the wheat one?

Am I letting you sit too close to the T. V.?

In short, I keep asking myself: Did I do this to you?

I have often wondered that. Did I break her? I've come to believe, after these few long years, that Abby's epilepsy is a symptom of something larger that's been damaged inside her. I also firmly believe that there are environmental and genetic components to her difficulties.

Recently, I've also began understanding the Autism as part of the same damage, something malfunctioning that is causing these symptoms to bubble to the surface. In my mind, they must be linked, as part of the same parcel.

I have often wondered, in these years, if my taking Celexa during my first trimester of pregnancy had any role. At the time, I was tapering off my dose slowly when I discovered I was pregnant, as I had been taking it earlier that same year to treat a depressive episode. My physician at the time agreed that I should continue tapering the drug, as there was no significant risks known for continuing the take the medication in my first trimester. At the time, it was also thought that Celexa raised the risk of birth defects and it was recommended that it should be stopped before the start of the third trimester. I was done with Celexa by my 12th week of pregnancy.

That thought, that me taking the Celexa during early pregnancy could have played a role in her "condition", has secretly haunted me. It's why I refused medication when I was pregnant with Rachael even though I was suffering panic attacks. It's also why I've refused to take medications for a chronic, low-level depression that has continued to plague me since her birth. Not only do these medications cross the blood-placental barrier, it infiltrates the plasma in the breastmilk.

No one could tell me whether or not I broke one child. No one could force me to break another.

I was reading something totally unrelated today, and I found myself today wondering if anyone else asked that same question about antidepressants. Did anyone else feel the same way? So I asked Dr. Google.

Click here for an answer.

Frustration

2010-04-28T13:12:00.001-05:00

We thought she was getting better for a few days, but then she's gotten worse again. She slept 13 hours last night, work up at 10 this morning, but has been asleep again since 11:15 (it's now almost 1:15). She picked at her breakfast. I'm going to weigh her again when she wakes up, as I suspect she's lost more weight.

Keep us in your prayers.

The Mother of Invention...

2010-04-25T23:43:00.000-05:00

....truly is some lady named necessity.

Check out this very cool invention.

Ten Things

2010-04-23T22:56:00.000-05:00

I recently finished this book, Ten Things Every Child with Autism Wishes You Knew. I had ordered it from Amazon awhile back, but only got around to reading it this past week. Wow. I think I will be reading it again in the near future.

If you have struggled to understand your kid on the spectrum, this book is for you. Even if you haven't, this book is for you. If you don't even have a kid on the spectrum, but think you might meet one someday, this book is for you.

Ms. Notbohm draws on her own experience as a parent of a child on the spectrum to show you some fundamental truths about your own child. Some of them you probably intuitively knew. I found many I probably should have known but didn't. But instead of making you feel guilty about your own misunderstandings, she uplifts you and inspires you to do even better by your child.

This is truly a book that makes you feel happy and secure as a parent again, and teaches you to regard your child in a whole light. It's so brilliant, it's almost blinding.

Two Things

2010-04-23T15:33:00.000-05:00

Thing One:

Abby is (I hope) finally on the mend. After much reading, compiling information and yet another doctor's appointment, it was finally (unofficially, of course) concluded that Abby may have a systemic candida overgrowth, possibly from the five courses of antibiotics she had in the space of six months (three of which were heavy-duty trying to clear a sinus infection that wouldn't die).

I had already suspected a couple of weeks ago that she was probably suffering from malnutrition for a variety of reasons (something the doctor pooh-poohed initially), but giving her a good-quality multivitamin and some almond milk every day has seemed to help. We also started probiotic drops today too. Of course, this is all very par for the course if your child is being treated by a DAN! doctor, but most mainstream medical practitioners won't really give these issues the time of day. Good old doc, bless his soul, was unhappy to admit it certainly was a possibility and was better than any theory he had about her mysterious illness.

Anyway, this only strengthens my resolve to carry on with our plans to pursue treatment using a naturopath to help improve her overall health status. Not that I'm expecting her epilepsy or Autism to be magically "cured", but I'm hoping to identify her unique health needs not normally treated by the mainstream medical community. My goal remains improving her overall health and quality of life.

Oh, and did I mention she quit having as many seizures within a couple of days of her starting the vitamins? Even after neurology had us reduce her nitrazepam down to a lower dose in case that was causing all the sleepiness?

And we're 48 hours without a seizure and counting?

Thing Two:

Ummm... I forgot. I'll let you know if I remember.

Differential Diagnosis

2010-04-18T00:15:00.001-05:00

I haven't talked about this much, mostly because I dismissed it as nothing at the beginning, and have been continually reassured by medical personnel that it probably is nothing. I've been at the doctors at least 4 times about this, most recently two days ago.

But the more I read, and the more I think, the more I'm certain that something else is afoot. I feel like I need to call in Dr. House and his team.

However, he's a fictional character, and besides, I don't think I could afford him anyway and Medicare probably won't cover it. I've asked Dr. Google several times, but so far he's been indecisive. So I want your opinion and ideas!

Differential diagnosis, people!

The parts you probably know: Abby started having seizures again in the middle of December, and has had multiple dosage increases on her anti-epileptic medications since then. They have only been partially effective, reducing her seizure numbers from 3-6 daily to about 2-3 daily (and having odd days where there appear to be zero). Her current medications include 700 mg of valproic acid per day (split into three doses), and 4 mg of nitrazepam twice a day (daily total of 8 mg). I've been pushing for a change in drugs, but so far no one is listening because they refuse to do anything as long as she's not feeling well.

So now the "not feeling well" part. For nearly two months, she's been lethargic, sleepy, pale, irritable, not eating well, pooping weird, and generally amiss.

Lethargic: a puddle on the couch. She wants to cuddle and watch Raffi instead of going outside to play. Refuses to stand up at times. A normally active child, she's been reduced to the speed of a basset hound.

Sleepy: sleeps 12 hours at night, then proceeds to sleep another 2-3 hours during the day. She gave up napping a year ago at Christmas. Her norm, without the clonidine, is about 9-10 hours, but we're still having to give the clonidine otherwise she wakes up multiple times with night terrors. Often, she'll just be sitting there, falling asleep with her eyes rolling back in her head. Refuses to do ABA work, and wants to lay down in my bed. Is frequently crawling into our bed at night these days anyway too.

Pale: She looks like death warmed-over. Actually, that would be an improvement. She's death sitting at room temperature getting cold.

Irritable: see sleepy. Refuses to do ABA, which she normally loves. Refuses to get off the couch to come eat. Complains often, cries for no apparent reasons. Easily distressed.

Not eating well: rearranges food on her plate most meals. Anything she does eat tends to be carb-heavy, although she's having a good run on green grapes the past few days. Also is drinking very little the past few days.

The pooping thing: Stool has been a pale yellow colour. It reminds me a little of oddly-coloured clay. It's disgusting.

Have I mentioned this has been going on for two months??? I mean, she has good days and bad days, and will occasionally have a string of two or three good days, but really, it's been two frigging months!!!!

So, ideas?

Many of these symptoms indicate liver failure, which is a definite possibility with the valproic acid, especially the fatigue and yellow stools. Her last few ALTs, however, have come back normal (last one was drawn March 25), and when palpitated her liver feels normal. She did, however, scream like a banshee when her bladder got palpitated, so Dr. E felt that she probably had a bladder infection (which the urine sample seems to be a little vague about, but he's still pretty sure), and we did a course of antibiotics. Which we're now done, and she doesn't scream when you touch her lower tummy anymore, but she sure isn't any better with anything else.

I keep getting told that she has a virus and just needs time to get over it. Exactly how much time am I supposed to give this?

Oh, and have I mentioned that "they" won't do anything about her seizures until she's "feeling better"? Because that might be why she's having seizures, because viral infections lowers seizure resistance in many people.

But what if her return of the seizures is a symptom of whatever the larger problem is???

I don't think it's the medication, because we've had a couple of changes in this time frame, and it doesn't seem to make it better OR worse. Besides, Dr. E was impressed that she wasn't stoned, especially with the dosage of nitrazepam.

A friend has suggested to me maybe a blood sugar issue is happening, something like hypoglycemia, which does fit her family history. I'm wondering about thyroid, and I'm wondering when the last TSH level was done. Thyroid issues would also be more-or-less consistent with her family history. Her metabolic workups have always been clear, and I'm doubtful that an inborn metabolism thing would magically show up at this point in the game.

I'm doubtful it's the change in her diet to the GFCF, as this problem predates it, and I was actually hoping that it would maybe resolve whatever the problem is. I've started giving her multivitamins wondering if it's maybe a malnutrition issue due to her self-restricting on foods. I'm not sure if the really bad self-restricting predates this thing, or if they happened together.

Help!!!

Something New

2010-04-16T23:42:00.000-05:00

After my last ramble about chreese, I got to thinking (dangerous pastime, I know). I think one of the things I miss the most about Facebook was the Living Social's Visual Bookshelf application. It allowed you to keep track of what you read, and to create reviews and rate them.

I have been known, on occasion, to create reviews on Amazon's website (usually if I really hate a book), although I've been kinda pissy that the .ca website won't let me create a review, but the .com one will (even though I've ordered from both).

(Note to my American friends: I'm very jealous of your amazon.com. It rocks. amazon.ca sucks in comparison. And tons of stuff on .com won't ship to Canada.)

I do read a lot, both on Autism-related topics and faith-related topics. And I looooove a good, or even mediocre, Star Trek novel (I read those like many women read Harlequin Romances). So why not tell you about what I'm reading? Wouldn't that be fun? Huh? Huh?

*smiles*

So here we go. We'll call this new feature "the book review". Catchy, non?

*drum roll please*

Okay, so I finished this one a while ago, and lent it to my friend Jen who is working her way through the CF part with her daughter.

The book it totally awesome. It was actually one of the last ones I read on the topic, but I wished it had been among the first. I might have started this whole GFCF thing a lot sooner if I had. She spells the who-what-when-where and whys of the diet in clear English, and has some great tips and ideas for adjusting to the diet, traveling and vacationing, reading labels, and just generally getting your head around it.

I strongly recommend it to anyone considering the GFCF diet for their child. The other book that I would recommend as a "first read" is The Kid-Friendly ADHD & Autism Cookbook, Updated and Revised: The Ultimate Guide to the Gluten-Free, Casein-Free Diet. It was instrumental for convincing me that we should also try eliminating soy on a trial basis.

So that wraps up our first segment of "book review". Thanks for stopping in!

The Awesomeness Known as "Chreese"

2010-04-16T14:07:00.000-05:00

Recently, I purchased a couple of packages of Road's End Organics GF "Chreese" to try.

We have, so far, been amazed with this product!

(If I was still on Facebook, I would be talking about it there, but seeing how I'm now Facebookless, you get to hear all about it. Lucky you.)

It's incredibly hard to find here in Canada, as no one seems to want to ship it, but I recently discovered this great little boutique that carries all kinds of GF stuff that comes up from the US. (On a side note, there's another great shop I've recently discovered that carries tons of GF stuff., Sadly, both are 2+ hours away from my house. Happily, we're "in town" often enough that we can make the trip once in awhile.)

We tried it first as a mac n' cheese sort of thing, and made baked mac n' cheese a la Nana with a tin of homemade tomatoes mixed in. It was delish.

The true test was today, when I whipped up a batch and proceeded to make Abby a grilled chreese sandwich!

She was pretty excited, and looked at me with some disbelief when I told her to go ahead and eat it (it's even orange-coloured like american-style slices!) I was surprised how well it worked (the prepared chreese has a consistency similar to Cheez Whiz). I ate one too. The rest of the package of chreese is sitting in my fridge, waiting for the next sandwich.

Yum!

Credit Where Credit is Due

2010-04-08T15:16:00.000-05:00

With Autism, you often wonder just how much they're absorbing, retaining, and remembering as you go about your day. It sometimes feels like they're sooooo not paying attention, but then little things happen that make you realize you don't give them nearly enough credit.

At the local health-food store today, I was intently studying the gluten-free snacks, looking for goodies to fill Abby's treat box used for rewards during ABA. Rachael was at home with a sitter (Abby and I had been at a doctor's appointment), and Abby was milling around nearby, examining the boxes of gluten-free pasta. She wanders a little further, but I can still see her out of the corner of my eye.

Suddenly, she's gone. I peer over the display case, and can't see her. I start walking, looking down each individual aisle, and can't find her. I call her name. No response (no surprise). I glance at the door. No one has come and gone for several minutes, and the people here know us and wouldn't let Abby leave with a stranger.

Would they?

It's not that big of the store. Where the heck is she? My heart starts to pound as panic slowly starts seeping in.

And then I spot her.

She had gone, unassisted, and helped herself to a carton of her favourite brand of chocolate soy milk (which she has been crying for, but can no longer have). She then proceeded to the till, and was waiting, patiently, for Mommy to come pay for it.

I think we got the we-must-pay-for-things-before-we-leave-the-store thing down pat. Now we have to work on the please-don't-wander-away-from-Mommy part.

He Is Risen!

2010-04-04T16:27:00.002-05:00

Good Friday

2010-04-02T20:03:00.003-05:00

World Autism Awareness Day

2010-03-31T23:02:00.004-05:00

Well, I missed Epilepsy Awareness Day... it was March 29. I usually had Facebook remind me of such things. *sigh* Well, to make up for it, I want to remind everyone that April 2 is World Autism Awareness Day (WAAD). You can read the press release here.

Also attached to the original email I received, there was a part coming from the Canadian Senate regarding Bill C-504, for the establishment of a National Autism Strategy. I've copied the text below for your perusal.

World Autism Awareness Day

Monday, March 29, 2010

SENATORS' STATEMENTS

Hon. Jim Munson: Honourable senators, April 2 is World Autism Awareness Day, a day recognized by 192 members of the United Nations. First, I invite you to join us tomorrow in the Commonwealth Room, room 238-S in Centre Block, and meet people working on behalf of autistic people, a group called the Canadian Autism Spectrum Disorders Alliance. By bringing these leaders together with parliamentarians, we want to raise awareness and create links between decision-makers and the people working hard every day on behalf of people with autism.

Later this week, I will move and speak on second reading of Bill S-211, an Act respecting World Autism Awareness Day. This bill has twice been given support by the Senate, in particular the warm support of Senator Keon and Senator Oliver, but has not become law yet because of two prorogations.

The bill includes in its preamble two short points. First, it states that Canada has no national strategy or autism and, second, it reminds us that Canada is a signatory of the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities.

These elements of the bill are important to the stakeholders honourable senators will meet tomorrow. These elements are fundamental to improving the lives of people with autism in this country.

Without a national strategy, efforts to address this disorder will remain ad hoc and disparate. Without recognizing the rights of people with autism, we fail to show them respect.

As I have already said in this chamber, recognizing April 2 as World Autism Awareness Day will not cure autism. It will not guarantee treatments for the children who need them and who wait a long time for them. It will not provide financial assistance to the families who band together to pay for these treatments themselves.

However, by making Bill S-211 law, we express compassion, care and respect. We say to people with autism that we will take action and we want to include them. This action shows what Canadian values are. House of Commons

Tuesday, March 30, 2010

Routine Proceedings

National Strategy for Autism Spectrum Disorder Act

Mr. Glenn Thibeault (Sudbury, NDP) moved for leave to introduce Bill C-504, An Act respecting the establishment of a National Strategy for Autism Spectrum Disorder.

He said: Mr. Speaker, I would like to thank the House for giving consent to move this bill forward.

I am pleased to rise in the House to introduce a bill that would provide relief to thousands of Canadians across the country who have loved ones living with autism.

If passed, Bill C-504, An Act respecting the establishment of a National Strategy for Autism Spectrum Disorder, would establish national standards for the treatment and delivery of autism-related services, study the possibility of transferring federal funds to assist provincial governments in providing treatments, establish a medical surveillance program monitored by the Public Health Agency of Canada, and estimate the amount of funding required for health research into treatments and service delivery for autism.

If passed, this bill would bring relief to thousands of Canadian families who have loved ones living with autism.

An Awesome Article

2010-03-31T12:55:00.002-05:00

Another IS parent, Ken, has posted this link to a great, great article about Epilepsy. I encourage you to read it. The article starts about a 1/3 of the way down the first page.

A Little Seizure Video THE SEQUEL

2010-03-30T15:12:00.004-05:00

Clever title, eh?

Another short video with Abby having a seizure, filmed yesterday at supper. And while we're on the topic of videos, you might want to go check out this one about radical brain surgery. It's yummy (and don't get queasy like I did when they show the big brain probe thingy).

Puppet Gods

2010-03-30T15:04:00.003-05:00

We did the "divide and conquer" thing again on Sunday: we got up late, I really wanted to go to 9 a.m. Mass, and there was no way we'd all be ready in time. Besides, the kids were cranky and I didn't want to sit through the extra-long Palm Sunday Mass with them. So I went to 9 a.m., and Michael walks out the door as I walk in to make the 10:30 (generally calling questions and instructions to each other while one walks down the driveway).

As we head into Holy Week, and coming up to the Triduum (my very favourite time of year), often the homilies are about the Death of Christ and the Redemption of Sin, for obvious reasons. Sunday's homily was no exception.

Father talked about the Triumphant Entry into Jerusalem, but how they turned on Him demanding His crucifixion only a few days later. What changed? I've heard this explanation before, that they were expecting their Messiah to deliver them from their enemies, the Romans. When it became clear that it was not the case, well... I'm sure you know how this story ends.

But something Father said has stuck with me, and I admit has troubled me. He said that people often treat God like their own personal puppet God (his words, not mine), expecting them to deliver them from their problems. In fact, Christ came to deliver us from our sin.

At first, I nodded my head. It made sense. I mean, I understood it with my brain. We can't rely on God to fix our own personal problems: He has equipped us to do that more or less ourselves. I have know people over the course of my life that have sat back and expected God to fix their lives, and then blamed Him when nothing happened.

And I mean, there is nothing saying we can't pray for wisdom as to how to solve our problems, on making the right choices, or praying that we receive a little ~~divine testicular fortitude~~ courage to do the right thing.

Absolutely. I wholly agree with this homily. God doesn't fix our problems, He fixed our sin. Case closed.

But then my heart whispered: What about your children?

And so I said to my heart: What was that? Speak up, please.

And then my heart reminded me of all the times I spent on my knees, praying for Abby to be healed. Knowing that it probably wouldn't happen, but also believing that miracles can and do happen. I remembered my anguished cry when I started bleeding in my first trimester with Rachael: "Please God, let me at least meet my child." How many breathless prayers have I whispered for my children, my spouse, my parents, my friends and my community?

Sometimes God does fix our problems. We usually call them miracles. Pretty sure that's the definition of a miracle. Or at least, we'll call it Divine Intervention and consider the matter settled. Either way, I don't expect Him to just... poof... fix something, especially if it's a mess I have skillfully created myself. But I don't think that asking Him to fix my "problem" is in itself... well, a problem.

Is it?

A Little Seizure Video

2010-03-27T19:54:00.003-05:00

Many people have asked what Abby's seizures now look like. We've been trying to video-capture one, unsuccessfully I might add, for months now to show the neurologist. We finally captured one today!

The lighting is not great, so you can't see her eyes darting around. For those of you who know the "real-life Abby", you know it's not like her to sit still for so long!

We haven't seen a difference yet with the increase of nitrazepam (I've refused to consent to more VPA increases as we've seen pretty much bupkis for results thus far). I'm hoping for a med change sometime in the very near future.

Anyway, grab some popcorn and enjoy (and please just ignore the fact that I almost drop the camera about half way through the video)!

A Journey Of A Thousand Pieces of Toast Begins With A Single Crumb

2010-03-26T08:56:00.007-05:00

First of all, a big pat on the back to my friend Jen who has put her daughter on a CF diet. You can read about her reasons and the beginning of her journey here and here. I was quite amazed at the difference in her when I saw them a couple of days ago... even after she accidently had some milk the day before at the breakfast table!

Our journey into GFCFSF-land has been progressing. What's GFCFSF? Gluten-Free, Casein-Free and Soy-Free. Abby has been CF since forever, and happily drank soy milk as a substitute. We've dabbled in the GF, and are finally feeling confident and certain enough about ourselves to fully do it for her. I've elected to go SF too because of the growing controversy about the safety of soy consumption. There's also a growing body of documentation that suggests that the similarity between the gluten protein, the casein protein and the soy protein causes cross-reactivity in sensitive people.

Some really good articles about the implementation of the GFCF (and SF) diet can be found here and here.

I suspect Abby is one of these aforementioned gluten-casein-soy people: we already have trialed (and challenged) the casein part of the diet, and we do see a difference in her ability to sit, concentrate and focus. We also know that she is sensitive to the gluten protein, as she has demonstrated that she can't eat wheat pasta, and hasn't had any for a long time (she wakes up screaming with a stomach ache in the middle of the night when she has durum wheat, which is a high-protein variety of wheat).

She loves anything dairy and pastas and bread. The dairy we were using soy-based products, but have recently switched her to Vance's DariFree, which I can't say enough good things about (DariFree is available in Canada through Medallion Milk). We've moved her to rice pasta, and she enjoys it and does well with it. Bread is another matter.

Who knew children with Autism are creatures of habit? She eats two slices of toast at 10:30 a.m. for snack. Every. Single. Day. And you know what? GF toast is... different... from "regular" toast.

We're not a fan of it, yet. We'll work on that.

When Both Ends Are the Short End of the Stick

2010-03-18T12:07:00.006-05:00

There was a time, in a galaxy far, far away, when I felt like I was hovering over Rachael waiting for something to go wrong (Jen, I think the term is "Helicopter Mother", LOL). I think it's a side effect of having a neurologically abnormal child as your firstborn: you expect the next one to be the same.

At some point, however, I decided that Rachael was A-okay, and quit worrying. I think it was around the time she turned a year old. And seriously, I worry about nothing with her, and figure everything these days is just "normal".

Fast forward to now...

The kids have been sick for 3 or 4 weeks. And I mean sick. And not good sick, I mean sick-sick, fully-sick, like that rapper guy...

http://www.youtube.com/watch?v=sxQwJ_bJUXA

(I'll let you link to the video, it has some... what I don't consider totally appropriate family viewing content, but it's quite, quite entertaining)

(but I digress...)

Abby has napped virtually every day the past three weeks (she gave up naps over a year ago), has been miserable, runny nose, fevers, the whole shbang. After a week or two of that, I finally took her to the walk-in clinic, figuring she had a sinus infection again (she's had two others already this winter). The doctor agreed and prescribed antibiotics. They haven't helped.

Rachael has completed not one but two courses of increasingly stronger antibiotics trying to clear an ear infection. Plus the cough, the restlessness, the cough, the runny nose.

Finally I threw in the towel and made an appointment with Dr. E, the pediatrician. He gave both girls a good look-over, hemmed and hawed, wrote some stuff down, and said, "Okay, now we talk."

My experience has been this can't be good.

Abby has a cold (duh), but most likely also has the flu and/or RSV, and just needs time. I can live with that, and suspected as much. She's sick-sick, but will get better all on her own.

Rachael, on the other hand....

*sigh*

Her ear infection is still not gone, and needs another 2-3 weeks of antibiotics to try and clear it up. Yuck.

She probably has RSV too. Double yuck.

"Oh, and I'm writing her a script for an inhaler, because I think she has asthma."

Whaaaaa????

Then, a little light went on....

That's what that wheezing (which I decided was nothing to worry about when Rachael magically became "normal" to me at a year old) has been all about!

For months!

Boy, do I feel like a crappy mom!

(I am suddenly reminded of a Monty Python Video*)

2010-02-27T22:20:00.002-06:00

Not dead yet. Just busy with sick Rachael, ramping up ABA again and doing silly things like sleeping. I've started several posts and never finished them (hopefully this one will get completed!).

I guess that's all. I'll have time for deep thoughts... someday....

* I think it was The Search for the Holy Grail, when the guy calls out, "bring out your dead!"

.... I looked it up... and it is The Search for the Holy Grail....

1-800-GYPSIES

2010-02-10T14:58:00.003-06:00

It's one of those (weeks) days.

You know the one.

The one where you wonder if you're a bad parent for actually considering locking your firstborn in a closet (I promise it would be a big closet!)?

The one where you seriously consider following through on your threat to sell them to the gypsies.

You know, the one where it's too cold to play outside, the baby won't (can't) nap, and you didn't have nearly enough sleep last night? And you'll get no relief tonight because your husband has a KofC meeting after supper? Your only saving grace is that you're having leftovers for supper, so you don't have to cook and dishes are minimal?

Where your prayer candle is lit not for Haiti, but for your own children and your sanity?

Where you don't even get to finish counting to ten when you need to intervene... again... ?

(... where did I put that phone number for the gypsies...?)

Victory is Ours!

2010-02-04T15:35:00.003-06:00

Success!!!

After many months of waiting, we will finally have a full complement of ABA staff!! Hooray!

AND....

::gasp:: you mean there's more????

Why yes, young grasshopper, there is more!

We got a call today from a speech language pathologist! Who has an opening! Who now has Abby as part of her case load!!

And that's not even the best part!

::eyes wide open:: it's not?

No, the best part is....

She comes to the house!

I don't have to shlep kiddo down to the hospital for Speech! Plus, no finding child care for Rachael!

::happy dance::

The Great Cottage Cheese Incident

2010-01-19T21:54:00.005-06:00

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.

Randomings and the Epilepsy Rant

2010-01-15T13:56:00.007-06:00

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.

2009-12-20T21:35:00.006-06:00

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

2009-12-18T13:51:00.018-06:00

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

2009-12-17T13:28:00.007-06:00

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

2009-12-14T23:06:00.006-06:00

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.

Moved

2009-11-30T21:29:00.002-06:00

Well, we made it. We're here! All is well.

The girls were great the first night at the new house, but by the second night Abby realized that this was our house, and was none too pleased. Michael suggested that maybe she thought this was Grandma and Grandpa's new house, as they were here all week helping us, and it was only after they left to go home that the awful truth was realized!

Heh. Oops. Poor kid.

She did better today though, a nice, long, hot bath before bed helped. Both kids were in bed, asleep, before 9 p.m., a rare treat in our home.

So you'll excuse me if I don't check in for a bit. I have about 200 boxes vying for my attention, I still can't locate a few key items in my kitchen (although Michael finally found my toothbrush. Whew!), and we're about to experience our first major snowfall for the year, about a month later than normal (but in perfect timing after our move!).

See you soon!

Excitement

2009-11-27T12:59:00.000-06:00

One more sleep until moving day!! Eeeeep!

And Now For Our Feature Presentation....

2009-11-22T19:17:00.002-06:00

Not to be outdone by Jen's latest performance video, I happily present Mommy and Rachael singing a duet!

The Countdown Is On!!

2009-11-21T15:55:00.003-06:00

Only two more sleeps until we get the keys!!

I'm feverishly packing, and running out of places to stack boxes. The first order of business when we get the keys will be move a load of boxes.

We're enjoying incredible weather here, and hopefully it will hold until after the move. On November 20th, Rachael was picking me a dandelion bouquet at the park. We're normally under a foot of snow. We're wearing spring jackets instead of snowsuits.
Okay, back to packing. We're going to the parade tonight, not that we care about Santa. That's for another post. :)

The Best Things In Life Are (More Or Less) Free *

2009-11-09T20:05:00.002-06:00

As we hemmed and hawed about the upcoming move, one of our considerations was affordability. I was worried that we wouldn't have money to buy our children nice toys, books, games, etc.

I eventually came to the conclusion that my children's favorite toy is Mommy, and their favourite books are at the library.

I feel that today reinforced my opinion. What did my kids do today?

Abby wanted to play ring around the rosy with Mommy. Again and again and again....

Rachael played for the better part of an hour with: a 500ml jam jar with two-piece lid, a toothbrush, a spork, and a bubble wand.

Oh, and they fought over the Brown Bear Brown Bear What Did You See book from the library.

See? Nothing to worry about.... :)

*or can be purchased inexpensively at your local dollar store.

The Waiting Game

2009-11-07T13:19:00.004-06:00

I don't often complain about waiting lists.

In Canada, with socialized medicine, we often have waiting lists. You wait to see your doctor. You wait for a specialist. You wait for your tests. Heavens, sometimes you wait weeks or months to start chemo or radiation treatments.

We've experienced very little waiting. Generally, what Abby needs she gets in very short order. I guess that's one of the benefits of having an acutely ill child so early in life.

But now, really for the first time in Abby's life, we're playing the waiting game.

Two important transitions happened this week. Yesterday was one of Abby's ABA tutors last day. We were heartbroken that she was leaving (Honey, if you're reading this, don't feel bad... we understand. Really. We knew it wasn't forever.), as Abby loves her "girls". I would smile when I heard them playing a favorite game of "touch the ceiling", or when they sang funny and familiar songs together. Therapy time was very much fun time.

We had several weeks warning that she was leaving, but it still feels like that in the blink of an eye, she was gone.

So we wait. For a replacement. Which none suitable has yet been located. Abby still has her other "girl" in the mornings, another young woman who she (and we!) love dearly. But it's just not the same.

And now, we also discover this week that our time with the speech language pathologist has been cut short. We knew our time was ending soon, as her belly grew rounder and bigger and her due date drew near. But she's had problems with the pregnancy, and she's been told to quit working. Now.

So in the blink of an eye, literally, she was gone.

So we wait. For a replacement. Which none suitable has yet been located. Abby is at the top of the priority list for the next opening with a SLP, but we might be waiting awhile. As in, we might be waiting a year until our regular SLP is back from maternity leave.

I have, in my past, struggled with things like anxiety. As most people who have had to deal with that monster-in-the-shadows will tell you, the hardest thing to deal with is the anticipation. The not knowing. Simply, the waiting is what gets to you.

::drums fingers on desk, waiting::

Bah, Humbug!

2009-10-31T13:39:00.007-05:00

I know, I know; it's an expression we generally reserve for Christmas, but for me, it applies to Halloween.

Bah, Humbug!

For as long as I can remember, I hated Halloween. I hated the dressing up, I hated the going to people's houses begging for candy, I hate the candy apples and the witches and the goopy insides of pumpkins...

What a delightful child I must have been. ::rolls eyes::

I still hate Halloween. I don't think Abby is particularly fond of it either, as she protests whenever I try to put a costume on her, or paint her face, or put thingys in her hair. Last year she was a very, very unhappy elephant.

I've also have some reservations about fitting Halloween into my faith. I officially don't know where I stand. But then I read this great blog entry from one of my very favorite Christian artists, and I feel a little better if I allow my kids to participate, even just a little bit.

At least I feel justified for going out and buying candy. :)

Abby, Halloween 2008

The Strength of Our Feet

2009-10-25T15:36:00.006-05:00

I woke up this morning feeling absolutely horrid.

That, in itself is nothing new. Since Abby started nursery school last month, we've become the House of the Damned, going from one illness to the next. I understand the whole "you need to stay home when you're sick so you don't spread it to everyone else" courtesy, but we're to the point that if we did that, we are never, ever leaving this house until Spring. A quick check confirmed no one has fevers (because that does merit staying out of public), and off to Mass we go.

Naturally, we were late for Mass, so we sat at the very, very, very back of the church. The building is over 100 years old, so while the acoustics are not terrible thanks to modern wonder of amplification, they're not great. I'm struggling to hear the priest over the noise of my less-than-happy-to-be-there-this-morning children. Plus, I'm still figuring out his very-thick African accent.*

The priest raises his hands in prayer, and prays for the strength of our feet. I'm sure I had a weird look on my face until I realized he was praying for the strength of our faith, and not our feet.

I giggled inwardly to myself at my silly mistake, but stopped suddenly at a revelation. Sometimes it is about the strength of our feet. Not necessarily our physical feet, but about our ability to keep going, keep taking the next step, and to keep putting on foot in front of another, so to speak.

My husband and I have had moments in our life together when the only thing we have is the strength of our feet. During the December when Abby was diagnosed with Infantile Spasms. During the long, dark days of January when Abby was in the depths of the ACTH. When she relapsed and ended up in the hospital again. When we got her diagnosis of Autism. Even the days early in my pregnancy with Rachael when I started bleeding, and I thought that I was going to lose her.

Even my friends, there are a few in mind that have had a less-than-stellar year. Yet they keep putting one foot in front of another, and keep going. The strength of their feet is the only thing that keeps them going from one moment to the next.

It's our ability to keep going, to keep putting one foot in front of another, that sees us though. It's something we need to do no matter what path God has set us on.

I think I will pray for both the strength of my faith and the strength of my feet.

* Growing up, I had a teacher who was from Africa. I loved listening to him speak, the gentle lilt of his voice, and the way certain words rolled off his tongue. The catch was, of course, that we were all speaking French. As a result, I have never met a French-speaking African native that I can't understand. However, according to my brain, English is a whole other ballgame. I seem to have to re-learn the intricacies of their unique pronunciations with each new person I meet.

Aw Man, Now I Got To Think Of A Title Too?

2009-10-24T21:22:00.010-05:00

Well, hello there! It's been awhile.

Lots has happened. We sold our house. We're almost done buying another one. I have 30 days until we move, and I've packed one, lonely box.

Rachael started walking. Sort of.

Rachael turned one!

Abby has unleashed her inner Picasso (man, can that kid pump out the art!), and has discovered stickers.

We're losing an ABA tutor effective November 6 (which the tutor herself informed me of a good 10 days ago. St. Amant has yet to phone me and tell me I'm losing a tutor. I'm a little annoyed at them).

We're totally on the gluten-free bandwagon now. Abby and I are both feeling a lot better.

We have four more sessions with the speech language pathologist before she goes on maternity leave. They still haven't hired a replacement.

Mmmm.... let's see.... what else?

How about some pictures?

I guess that's it. With so much going on, I currently don't have time to be thoughtful or to ruminate on my innermost thoughts. Which is probably a good thing.

(Okay, so I'm lying a little bit there. Much of my thoughts as of late has been occupied by a little boy named Trevor a.k.a. seizure boy [is he still seizure boy if he stops having seizures?]. He was also affected by Infantile Spasms, and recently had more or less half his brain removed in an attempt to stop the hundreds of daily seizures he was having. You should go read move about him by clicking here.

I didn't really want to mention it because it's made me dark and moody and made me think a lot about IS, which is something I've thought very little of the past while. It's a deep, dark place where I'm still mad at God and I don't enjoy visiting. It's a place where you question your faith.

So then why the hell am I talking about it, you ask. Good question. I don't know. )

Kick Butt... Run!!!

2009-09-12T22:24:00.004-05:00

Photo courtesy of my sister-in-law. These are some of Abby and Rachael's cousins wearing the "team uniform".

Today was an awesome day!! It was the Kick Butt Run Day to raise money for colorectal cancer.
Our team raised over $1000, and as a whole the event surpassed it's $25,000 goal! Now, I call that a success!

"Have no fear... check your rear!"

We decided as a group, all of Michael's siblings, spouses, children, and dad to do the run/walk this year because their mom died of colorectal cancer over 20 years ago. I have to commend everyone on the walk for their enthusiasm and spunk... and we'll see you all next year!

Seizures and H1N1

2009-09-04T16:21:00.003-05:00

Click here to read a bit more. I will post more if I find out.

Now, How Awesome Is That???

2009-08-31T22:40:00.003-05:00

I'm the mommy of a covergirl!!

Promises

2009-08-26T10:49:00.003-05:00

I spent many years in Diaspora before coming home to the Church. In those years adrift, a single phrase from Mass remained in my head (and in my heart), and ultimately led me home.

"Lord, I am not worthy to receive you, but only say the word and I shall be healed."

It was that promise of healing that drew me back. Even alone in the wilderness, I knew that He had that power.

For a long time, I focused on the not worthy part. I understood that I was imperfect, and as such not able to fully be with Him. I wept in sorrow and repentence. But recently, it's the promise of healing that draws me. It's that promise that fills me with hope, not only for myself, but for my small, hurting family.

God may not heal my child, but He can help heal my heart.

Glory be to God.

Oh! That Smile!!

2009-08-22T22:42:00.003-05:00

Now, could she be smiling any bigger? Maybe only if the swing was higher...

Her sister's smile pretty cute too.... :)

History

2009-08-22T21:22:00.007-05:00

Browsing some old files, and I came across a letter I had written several years ago to get some funding for Abby. Anyway, I thought I would share an excerpt as it deals with the early history of her IS. The date on the letter was June 2007, which puts us about 7 months after the initial diagnosis, and two months prior to relapse. It's also a full year before our diagnosis of Autism.

(sorry for all the messed up fonts. they were being uncooperative, and i'm too tired to spend any more time fighting with it)

____________________________________________________________

Abigail was delivered by uninduced vaginal birth at 38+ weeks on May 7, 2006 at the the local hospital. There were no complications arising from her birth. We were discharged from the hospital on May 9, 2006.

On May 14, 2006, Abigail suffered from a seizure. We only realized that it was a seizure until after it had passed. It has never been determined whether or not that seizure is related to the seizures she subsequently suffered, or if it was febrile in nature. When we attended a well-baby checkup the following day, no action was taken other than to observe whether or not she ever has another seizure.

Abigail developed normally until December 12, 2006, when she had another seizure. She lost consciousness after the seizure, and I rushed her to the ER. The pediatrician that examined her asked a series of questions, including whether or not Abigail recently received any vaccinations. I told him that Abigail had received her 6-month vaccinations a month late, and had gotten them only 6 days earlier. I also mentioned that she hadn’t been herself the past week or so, and I was starting to suspect a food allergy as the reason for her behavioural changes.

The pediatrician mentioned that the seizure that I described (jackknifing forward at the waist, then reaching far backwards in a startle position) sounded like infantile spasms, and recommended we follow up with our regular physician the next day and have an EEG performed. We went home, confused and frightened.

The next day was quiet, although Abigail still seemed “off”. We received a call from the neurophysiology department at the the local hospital to schedule an EEG for the following afternoon. I also called the doctor’s office and explained what happened. They scheduled us for an appointment to see Dr. G, the GP that we were taking Abby to, the following morning.

On December 14, shortly after waking up for the day, Abigail had another seizure. Like the seizure two days prior, she manifested the peculiar motion of coming forward at the waist, and then moving backwards like a startle reflex. I called the doctor’s office, who advised me to still bring her in for the 11 a.m. appointment, but to bring her to the ER if she had another seizure in the meanwhile.

I arrived at the doctor’s office approximately 10:45 for our appointment. While waiting to see Dr. G, Abigail experienced another seizure. Up to this point, I had been alone with her for other seizures. Not knowing what to do, I called for help. The nurses frantically came to my aid and whisked us away into a treatment room, and brought Dr. G to us. While the nurses had seen what happened, Dr. G was too late.

She called up the patient record, and read over the ER’s report. She went and got Dr. E, the pediatrician who was practicing in the same office as her. He also read the report, and asked a few questions. He instructed us to go to the EEG appointment at 1 p.m., and then come back to see him; he would call over to the hospital and get the results of the EEG. He explained that infantile spasms displayed a specific pattern on the EEG that should be easy to identify (hypsarrithmia).

I went home in tears. I had begun reading on the Internet the night before about infantile spasms, and realized that I my worst dream was unfolding before my eyes. My husband came home from work at noon and accompanied Abigail and me to the hospital, where the EEG was completed. When we were finished, we went back across the street to Dr. E’s office to wait the results.

Finally, Dr. E was able to get a hold of the results from the EEG, and informed us that they were able to confirm that she has infantile spasms. He also talked to us about the probable course of treatment (ACTH) and the grim prognosis that these children normally have. He told us that he was waiting for a call back from pediatric neurology at the Children’s Hospital, and that he would call us at home once he heard back from them.

We went home and began packing. Dr. E called at around 8 p.m., and told us that we needed to be a Children’s for 10 a.m. the next morning so Abigail could be admitted for some additional testing and treatment. We left home at 7 a.m. the next morning, and Abigail was admitted to ward CH5 in Children’s that morning, under the care of Dr. B, pediatric neurologist.

Abigail experienced a number of seizures that day, and quickly began deteriorating. Between the Friday that we were admitted, and the Sunday two days later, Abigail experienced somewhere around 200 separate seizure episodes of varying severity and duration. Also in that space of time, she lost approximately a month of development, forgetting how to sit and feed herself, among other skills.

Abigail was subjected to a number of tests during her admission to Children’s, including a MRI and some metabolic screening. All test results came back as normal, except her EEG, which displayed the classical hypsarrithmia of the condition. She was eventually classified as having idiopathic infantile spasms.

Abigail began responding to the ACTH, and the frequency and severity of her seizures rapidly declined. We were discharged on December 22, with a follow-up appointment with Dr. B in Capital City on December 28. We remained in Capital City over the Christmas holiday, and December 26 was Abigail’s first “seizure free” day.

I had learned how to administer Abigail’s ACTH injections while in Children’s, and a home care nurse came by once a day between discharge and New Year’s to supervise me and to monitor Abigail’s blood pressure. We finally came home on Tuesday, January 2, 2007 with $3000 worth of ACTH (about 2 weeks worth), some injection supplies, and a great deal of uncertainty about what our daughter’s future would be.

It was my responsibility to administer Abigail’s medications every day. Initially, Abigail received 23 IU of ACTH by injection, in addition to 200 mg of pyridoxine orally once a day. A repeat EEG on January 10 showed much improvement. As previously mentioned, Abigail’s first “seizure free” day was December 26. However, on January 12, Abigail experienced a breakthrough seizure, and her dosage of ACTH was increased to 48 IU on January 13. Her dosage was again revised to 56 IU on January 14.

The increased dosage worked as intended, but the side effects from the medications intensified. I was required to bring Abigail down to the pediatric ward at the local hospital three times a week starting January 5 to have her blood pressure checked. In addition, she would also have blood drawn twice a week for analysis. Common side effects of the ACTH are hypertension as well as abnormal blood chemistry.

Also as a side effect, as is typical of most steroids, is Abigail experienced a significant increase in appetite. She gained approximately 20% of her body weight during the course of ACTH.

When the dosage of ACTH was increased, Abigail’s blood pressure skyrocketed to 149/98 (target blood pressure for her age is 90/60). As a result, she started a course of hydrochlorothiazide (HCTZ), administered twice a day, on January 18 in an attempt to control the hypertension.

On January 24, as a result of the HCTZ, Abigail’s potassium crashed to dangerously low levels. Abigail began potassium chloride supplements (KCL) three times a day.

Slowly, Abigail began to stabilize. The seizures adequately suppressed, I was instructed to begin weaning Abigail from the ACTH on January 27, with a dosage of 28 IU. The dosage was revised again to 14 IU on February 3, and again to 5 IU once a day on February 10. We attended a follow-up appointment with Dr. B on February 12. We also saw Dr. K, a pediatric nephrologist, regarding Abigail’s continued hypertension. We received revised tapering schedules for the medications, and instructions to follow up with them in May.

We were happy. January had been an excruciatingly difficult month; the ACTH made Abigail cranky and tired, but she refused to sleep. She gained weight at such a rapid pace that she was uncomfortable and her mobility was impaired by her size. She didn’t play, she wasn’t interested in engaging anyone around her. She ate at an astonishing rate, often consuming more food that either my husband or I in a single sitting. I was still nursing her, and I could barely keep up with demand while drinking five litres of water a day. She refused bottles. The hypertension gave her frequent headaches, and she would just sit on the floor and cry for hours on end every day.

For the first time in quite some time, we saw the light at the end of the tunnel.

However, on February 13, my husband and I both saw what we thought was a “staring spell”. In addition to the very obvious spasm-type seizure, Abigail also experienced the less common absence-type seizure, generally referred to as a staring spell. I called neurology on February 14, and they instructed us to bring her into Children’s for admission and diagnostic testing to evaluate whether or not the seizures were resuming.

Abigail was admitted to Children’s ward CH5 on February 15. They edged up her ACTH dosage from 5 IU to 8 IU, and ordered a repeat EEG. They wanted to perform a spinal tap so they could do an analysis of her cerebral-spinal fluid, but wanted to make sure it was absolutely.

Much to our relief, her EEG came back almost completely normal. There was no trace of the hypsarrithmia, although there was a slowing of the spike wave pattern in her left cerebral cortex. They are unsure what this represents, although there is suggestion that this could be representative of damage done by the seizures. After several days of observation with no additional indications of seizure activity, they instructed us to complete the weaning process from the ACTH. We were discharged on February 19 and sent home.

We began a course of hydrocortisone on February 19, as part of the weaning protocol. The ACTH and pyridoxine finished on February 24, and the hydrocortisone continued until April 1. We had a follow-up appointment with Dr. B on March 28, and were instructed to discontinue the HCTZ on April 3. Abigail has not required any medications since that time.

As previously mentioned, Abigail was developing at more or less a normal rate prior to the onset of her seizures in December. At 7 months of age, she was not rolling very much (although she could do it) and could sit very well on her own. She had superior fine motor control, and would regularly insist of feeding herself finger foods. She smiled and babbled happily, and seemed in every way a normal infant.

Between December 12 and December 17, she lost approximately a month of development. Regression is a common feature of infantile spasms; however the fact that she was developmentally normal up to that point bodes well for her long-term prognosis. It was well into the New Year, several weeks after the seizures were reasonably controlled, that she regained those skills.

During the course of ACTH, most of Abigail’s development halted, especially after the dosage was increased. The side effects of the drug are cumulative, meaning she got progressively worse the longer she remained on the medication, even if her dosage did not change. She lost approximately two months of development during the course of the ACTH, simply because she did not progress.

At her examination by Dr. B on March 28, in addition to an examination by Dr. E at 1 year of age, Abigail was still not exhibiting some of the reflexes normally developed by 10 months of age. Also, at her examination on March 28 (age 10 months), Dr. B assessed her as being developmentally at 7-8 months of age. Abigail only began rolling in earnest at the age of 10 ½ months, and began crawling at 12 ½. While she is not yet walking independently, she will walk with assistance and will “cruise” around furniture at this time.

Also at her examination by Dr. B on March 28, it was indicated that Abigail has an asymmetrical posture to the right. This was confirmed by Dr. E at Abigail’s one-year checkup. This is evident even to me, as a layman, when Abigail crawls or walks; she tends to lead with her right foot and/or arm, and the left drags very subtly behind her. It is very obvious when she’s wearing one-piece clothing, such as a sleeper or overalls, as her left leg gets caught up inside the garment because it does not clear the floor.

At this time, Abigail is forming non-specific words (Dada, etc), but we don’t think they’re being directed to anyone in particular (not discriminatory). She seems to be lacking some social and language skills that children of similar age often have, such as following one-step commands (“Give it to me”), even with use of gestures, waving good-bye, or responding to her name. She appears to hear well, and will be startled by loud or unexpected noises, will investigate unusual noises, and will smile at some “favorite” noises, such as the ringing of a bell.

We took Abigail to see Dr. E (pediatrician) on May 10 for her 1-year well-baby checkup, as well as to evaluate whether or not she should receive her 1-year immunizations. As previously mentioned, Abigail’s initial seizure on December 12 came just 6 days after her 6-month vaccination. While no conclusive studies have been completed on the subject, there is anecdotal evidence in the medical literature that vaccinations may act as a trigger for infantile spasms in children who are predisposed to the condition. When Abigail was initially diagnosed, there was a great deal of interest in the fact that she had recently received immunizations. There was also a great deal of interest in the fact that we had observed some behavioural changes in her in the days and weeks leading up to the seizure.

At the time of her 1-year checkup, we indicated to Dr. E that we had observed some of the same behaviours in the past week (i.e. aggressiveness, biting, general malaise). He determined at that time that we should be conservative and delay administration of her vaccinations on the worry that she may be experiencing subclinical seizures that the vaccinations may further aggravate. We were instructed to keep her under close observation and booked a follow-up appointment on August 7, 2007.

Dr. E also indicated that there is ongoing concern about subclinal seizure activity due to Abigail’s asymmetrical posture, although if that remains stable or improves it is likely due to damage caused by the seizures and treatment. We were instructed to continue observation and report any changes.

We had a follow-up appointment with Dr. K (nephrology) regarding Abigail’s hypertension on June 11. Abigail’s blood pressure has returned to normal, and it has been determined she had transient hypertension due to the ACTH and her file there has been closed.

The Whole Beef Enchilada

2009-08-15T13:30:00.004-05:00

Who knew security comes at the price of a freezer full of meat?

Our beef order came yesterday! My nose and tongue were again happy as I browned some ground beef to make Crockpot Pasta Fagioli Soup for supper. After ordering this organic beef last fall and eating it through the winter, it was a rude awakening in March when we ran out and I had to buy yucky conventionally-produced beef. Needless to say, I ordered more this year. About twice as much. Hopefully we'll make it to next August this time.

I'm also anxiously waiting for my chickens to arrive, from the same people I get my CSA basket from. And I've been dutifully blanching, freezing and canning the summer bounty to eat later in the winter.

Now, let's be clear. I have never been hungry a day in my life; there was always food on the table. Good food, now that I think about it. But there's still security in knowing I have food to see my family through for weeks, months, an entire season even, on hand. Maybe that's part of human nature, the need to save during the feast for times of famine. Until very recently, our survival depended on it.

But there's also something liberating about it. It's like using cloth diapers: I am not dependant on running to the grocery store when something runs out. In the case of diapers, I just run a load of laundry. For food, there's always something to eat in the house. I might be beans that require soaking and cooking, mixed with whatever else I find on hand, but we will always eat.

I have felt that need for self-sufficiency for a long time, but it has recently been intensified by the book Animal, Vegetable, Miracle by Barbara Kingsolver. I have to thank Not Jenny for lending it to me. Michael and I have oft thought about our dream of a home in the country, with big gardens for me to putter around in, much like the gardens my grandparents had growing up. As a child, I didn't realize other families actually bought their vegetables; I naturallly assumed everyone's grandparents had a giant bin of potatoes in the cold storage, and a fridge full of carrots you could just help yourself to. Didn't everyone have a freezer just for frozen peas, corn and beans? And those little trays of "flying saucers" cooked in tomato sauce? I think I was well into my teens before I ate a store-bought jar of jam.

I think of how rich we were then. Not necessarily in money, but in food and memories and security. That aspect of growing up is one of the most intense in my memory, and it's something I strongly desire for my children. We worried if moving out to an acreage/farm would be difficult for Abby. We spent a weekend at my uncle's place out in the country for a family reunion: he has about 100 acres, a good 2 acres or so of yard. Abby was perfectly content to just be outside, without fences and boundries (I actually had to fight with her to come for meals). Our largest obstacle right now (other than money) is the desire to be in the city for ABA and other preschool services.

We'll just keep praying about it. :)

Revelation

2009-07-30T20:55:00.003-05:00

I figured it out.

Not that average three-year-olds aren't exhausting in their own right, but a three-year-old with Autism AND Epilepsy has just plain old... [insert your own word to describe just how tired I am. I'm too tired to get a thesaurus to look one up].

I figured it out while I was making beds. I do some of my best thinking while making beds. It's the constant vigilance that makes you feel like you've gone off the deep end.

You don't ever, ever let your guard down, or you end up with things like the poopy potty incident (which I care not to discuss), or children being crushed by dressers, or you're stuck figuring out why the in-out mechanism on your DVD player doesn't work.

You can't leave her alone in her bedroom because she stands on the one inch wide headboard to look out the second-story window, and she needs reminding every 15 seconds to get down. You can't unload a dishwasher without her opencloseopencloseopencloseopenclosing the darn thing (or a cupboard, or the fridge, or a closet for that matter). You cannot for an instant let her out of the confines of the fenced back yard lest she run out into the street, heading for the park, and may or may not obey the command to stop. You can't just let her play at the park, watching from a distance, because she'll grab the cute little 2-year-old girl by the scruff of the neck and try to hurt her.

By the end of the day, you're exhausted. So much effort goes into what ABA refers to as "shaping" her behaviour, prompting her for appropriate responses and modeling them. And prompting. And modeling. And reminding.

Before you know it, it's 8 p.m. and you've just reminded her for the 25th time that day to stop banging her head on the plate glass window in the living room (and try redirecting her somewhere else without resorting to Raffi, again), your house is a mess because you can't keep up with both her and the toys/dishes/laundry/animal hair through the day, and the baby accidently took a nap at 7 p.m. when you weren't paying attention so now she's up until 11 o'clock, easy.

But then you finally get down time, of some sort, where you're not hovering over that blonde, curly-headed mop trying to "shape" appropriate behaviour and generally try to keep her from hurting herself, others and your property.

The vigilence has seen us through another day.

You finally crash at about midnight, with two loads of laundry still unfolded but at least the dishes got done, and you get a good, solid two hours until Abby starts screaming in a night terror and takes over an hour to come down and settle back to sleep, just in time for the baby demanding to be fed.

So the vigilence, then, really doesn't get to sleep either, now does it?

There's constant medications/supplements (at last count, we use eight medication syrings a day, plus one pill), two-hour waits at the doctor's office with your phobic child for a two minute appointment for a medication refill because he won't write a script for more than a couple months at a time. There's the constant reordering of medication because the compounding only has a two-week shelf life (and the dose is not available in pill form).

Does it sound like I'm complaining? I guess I probably am. But hey, it's my blog, and I'll whine if I want to.

I guess what I'm trying to say is that it's that constant vigilence, the never being able to let down your guard, that I find so trying. I am thankful everyday to God in Heaven that I'm not needing to keep vigil over the seizures, and the vigilence required for the medication regime is an acceptable price for that.

But the behaviours that never seem to change. The having to repeat, repeat, repeat, and feel like I'm getting no where with my child. It's depressing. It's discouraging. It's exhausting.

It would be nice to let my guard down a little bit.

The Price of Admission

2009-07-29T14:07:00.005-05:00

A friend of mine (okay, I admit, a more virtual friend than a real-live friend, even though we live in the same city!) got her diagnosis today. Her son has Aspergers. I want to do the happy dance, because it's been a long, hard road for them struggling to get help for their now four-year-old son.

A diagnosis is a funny thing when you have a children who's different: in a sense, it is a small victory.

You have a name.

You have something to Google.

You have confirmation that you are not crazy, you are not a bad parent, and that this is not a figment of your imagination.

And most importantly, you have a piece of paper that lets you access services to better your, your child's and your family's life.

It's also the price of admission to a very prestigious club. The Mommies Club.

First I belonged to the IS Mommies Club. Then I joined the ASD Mommies Club.

The members are great. I love the people in these clubs. I especially love the kids that bought our admission to the club.

I wanted to say that as far as clubs go, they suck. But deep in my heart, I know that's not true. However, the price of admission is steep. I would rather be in the I'm-the-parent-of-a-delightfully-average-child club. You know, the worse-thing-I-have-to-worry-about-is-... well, I don't really know what parents of average children worry about. But the dues seem somehow more manageable.

But there are great perks to this club. You get to know some very interesting people. Granted, many of them are medical professionals, but interesting nonetheless.

And you learn! You get a great education about a wide range of topics, including anti-seizure medications, EEG's, seizure management, first aid, child development, and language acquisition. You learn compassion, creativity and perserverence in a unique and powerful way. You learn to use your voice and your words and your actions to advocate for your child, your cause and your family. But you learn, even more importantly, how to find the joy and peace in the still and quiet, and to relish the good moments however fleeting they sometimes seem to be.

In short, it makes you a Super Parent. You have to be. There's no doing it half-way, half-assed or half otherwise when you're in the club.

And best part of all? You discover that

you.

are.

not.

alone.

That alone is worth the price of admission.

Kamping With Kiddies 101

2009-07-01T23:36:00.002-05:00

We survived. I can't believe we took the girls camping, survived and actually enjoyed it.

We told ourselves that things didn't need to be perfect, and that this little excursion was a learning experience on everyone's part. While Michael and I used to camp a lot before we had kids, we have never (successfully) attempted to do so since Abby was born.

A lot of stuff we did were firsts for Rachael, such as going to the beach, but she had tons of fun. We really pushed Abby out of her comfort zone the past couple of days, but in the end she did great. The walks to the park, the beach and the Raffi CD's on her own personal discman helped a lot. We even had pretty good nights, even after the raccoons visited us at 2 a.m. and the howling coyotes at 3.

We took away some valuable lessons from this experience:

1. Wear slip on shoes. Laces, tent zippers and trying to carry a squirmy baby is not a good combination.

2. Don't try to apply sunscreen to your own back. You will miss large swaths of tender, white flesh. Which is now red and incredibly painful.

3. The baby is actually pretty happy being bungee-corded to a camp chair. Go figure.

4. The baby that will eat nothing will eat large fistfuls of sand. Go figure.

5. Three-year-olds have no qualms about eating a potato chip that has been ground into the dirt. Several times over.

6. Bring lots and lots of bug spray.

7. It's pretty funny when you see a dog riding around the campground in a bike trailer that's nicer than the one you put your human children in.

8. Don't go for long walks in the forest with the baby, no flashlight, no whistle and no map at dusk.

9. Don't. Freak. Out. It's. Only. A. Spider.

10. Did I mention that slip-on shoes are of vital importance?

I dutifully took pictures and will post them tomorrow or the day after after I've had some sleep in my own comfy bed.

Cheering Section

2009-06-24T13:51:00.008-05:00

We love cheering in this house.

We need to be careful, however. Too enthusiastic of a cheer and it scares Abby and she starts to cry. :O Too little, and it loses it's effect.

Some little things to cheer about:

I was packing for us to come home from Capital City the other day. Abby came up to me, looked me square in the eye, and asked: "Car?".

I smiled. "Yes honey," I replied. "We will be going for a car ride."

"Car?" she asked again.

"Soon," I said. "I need to finish packing, then we're going to go for a car ride home."

" 'K," was the reply as she runs off to play.

A couple of days later, and I hear Abby and her tutor playing in the next room. I can tell from the interaction that they are putting pieces into the "Elmo and Abby" book.

Image courtesy of http://www.softplayforkids.com/ProductInfo.aspx?productid=2406

"No, no," says the tutor. "Broccoli doesn't go there. The backpack goes there."

There is a short pause, and the tutor begins to laugh. "Oh Abby," she says, "you're so smart!"

Turns out she was trying to cram a piece of toy broccoli into the space where the backpack piece fits because there was a picture of a piece of broccoli in Cookie Monster's backpack!

Yeah! 2D to 3D matching, and we're not even at that program yet! She's such a smart cookie. :D

Baby Goes Bonk

2009-06-22T22:47:00.005-05:00

A cute thing to share...

Abby, for probably a year now, gives "kisses" by gently (or not-so-gently) bonking foreheads with you. It's incredibly cute. Just be careful that she doesn't mash your nose.

Baby Rachael, in all her innocence, has been "kissed" by her big sister like that from the day she was born. So guess what?

Rachael bonks!

Grief

2009-06-19T19:30:00.010-05:00

(Okay, now just for the record, I really have tried to make a post. I have three separate, unfinished posts sitting in drafts. I am currently hiding in my parents' basement while my husband takes our darling, beautiful children for a walk. Cross our fingers that we get this one done.)

In today's episode, we're talking about grief.

I was at a funeral today. My husband's grandfather died suddenly on Sunday, and he was buried today, on Friday. It was sudden, but admittedly not wholly unexpected. It appears that he died alone, which is something that I always feared for him. I can only pray that he could see the choirs of angels surrounding him as he passed.

It's been very interesting observing the family. I had never been the "outsider" watching grief. Not that I wasn't very fond of the man, but he was my husband's grandfather, and I didn't really know him that well. My emotional attachment wasn't the same. I felt very conscious about that. My grief was less about Grandpa, and more for the family; I have lost three of my grandparents and I understand that loss.

So here I've been, floating is this somewhat detached state of grief-for-the-family, when very suddenly my own grief for things is forced back into my consciousness.

A man, whose face I didn't remember, but whose thick, Scottish burl stirred something deep in my memory, shook my hand and told me that he remembered me.

Remembered me? He's a nurse, he explained. He smiled gently. Your grandfather, he explained. I'm a nurse on the Palliative Care Ward. I remember you and your family, what was it, three? four years ago?

Five, I tell him. He died five years ago.

Acht, he says. How time passes quickly.

Suddenly, my own grief for my grandfather bubbled to the surface. I could suddenly see the room on the ward, warm and comfortable but still smelling of hospital. I could close my eyes and sense that last moment of his life, and I could taste the fear and panic of the moment as it swept over me. I could remember my father saying, "This is it," and calling for my brothers in the next room. It wasn't like in the movies: he didn't just slump over, peacefully, and die. It was agonizing seconds as his breathing stopped and started, ragged and painful, only to stop and start again. My father kept telling him it was okay to let go.

And then it was done.

Those few moments haunted me for months, even years, but time and distance had helped me move past it. I rarely gave it thought anymore. But a few words from a gentle stranger flooded them back into my consciousness.

Awhile later, I come across a lovely lady in deep conversation with my husband. She smiles sweetly as I sit down next to her. They are talking about our daughter, Abigail, and Autism.

What kinds of things, she asks, did you see that made you think Autism?

I started to explain Abby's history, the seizures, and she smiles and said she had been getting the emails (from whom I don't know). As we talk, I realize that she has two adopted children (now adults) with Autism.

I learned many things from her in the twenty minutes that we talked. I hope to share her wisdom with you some day, but it was plentiful and I am running out of words.

But we talked about grief. I learn that she is a woman of great faith, but even she felt tested by God with the challenges imposed by her children. And she told me she grieved for her children, herself, her family. I realized that I am still grieving too.

When Abby was first diagnosed with Infantile Spasms, I felt like my world ended. I looked at the television and newspapers with distrust and betrayal: here was happening the most important thing in the history of the world, they they weren't reporting on it! And I grieved. When they told me I would likely have a child with disabilities, I grieved. Every injection I gave, I grieved. When her development slowed, and started showing signs of Autism, I grieved.

I didn't realize that I am still grieving. The child I dreamed about when I was carrying her doesn't exist, she never did. And although I would never give her up, and I love her even more fiercely and deeply as I did that non-existent child, I still grieve.

My new friend tells me that it's like grieving for a lost relative, and you never truly stop grieving for your child. It moves to the back of your consciousness, out of your everyday thoughts and feelings, but it's still there. It will sometimes resurface, much like the grief for my grandfather surfaced today. And then you pray some more, and you move on.

Empowerment

2009-05-28T23:44:00.004-05:00

I've been neglectful again. Sorry mom.

Life has been interesting. There's been much to think about, much to consider. More things to do than hours in the day!

1. We thought about moving. We actually looked at a couple of open houses. The thought of significantly increasing our mortgage literally made me physically ill. We're staying put for now, and we'll just have to have "less stuff" so we'll fit into our current space better. .

2. We took a long, hard look at our finances and our priorities. I've been thinking a lot about food banks, not because we need one, but because so many people do. Poverty really is a blight in our society. I've vowed to give more to the poor on a regular basis.

3. I'm trying to figure out how to intergrate the ideas of voluntary simplicity into our lives. I'll get back to you on that one.

4. I've actually gone 15 whole days without using my clothesdryer. But I'm running out of towels, and my family complains if those get dried on the clothesline...

5. I've been an active member trying to get a local food cooperative off the ground, and it's finally starting to come to fruition. It's exciting to be part of a project like this at the ground level.

6. Abby has learned a number of new words, and is doing wonderfully. We're starting to realize how much she's actually observing and understanding in her environment. Like when you wake up in the morning, and it's quarter to four, and your hear a knock at your door (and she actually starts knocking)...

7. My garden is in. I actually have two plots, one in my yard, and I snagged a vacant community garden plot at the last minute. Now we pray for rain.

So why is this post called "Empowerment"? Because all of these items are empowering on one level or another. They're something that makes me feel good about who I am, where I fit into this community, this world and this life. It's the realization that we make an impact. The knowledge that my child is improving and growing and learning and that we've made the right decision putting her in ABA. Knowing we can do things to help the environment. Seeing the potential of our own situation.

And now, as my brain slowly turns to mush, I'm going to bed. :)

A Jarring Situation

2009-04-24T08:36:00.003-05:00

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*

2009-04-23T22:43:00.008-05:00

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

2009-04-20T23:02:00.004-05:00

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

2009-04-18T23:20:00.009-05:00

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?

2009-04-03T23:55:00.002-05:00

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

2009-04-02T15:50:00.005-05:00

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.

Oh! The Places You'll Go!

2009-03-25T00:47:00.010-05:00

God has been taking me on an interesting journey.

The centralness of my Catholic faith fills up and the wanes from the centre of my life periodically... we're in the "filling up" phase right now. It's Lent, and I've been thinking an awful lot about sin. I'm not sure if it's in a good way or a bad way. Is there a good way to think about sin?

Without divulging my secrets here, I'm gaining insight into why we have Reconciliation. To those who don't know, it's the "new" name for Confession. But Confession wasn't sufficient as far as names and labels go; there's more to it than just reciting a litany of the darkness of your soul. Reconciliation can be life-altering. I know of at least one instance in my own life where it has been. And I think that I'm approaching that point again, when that need to reconcile what I was with what I'm meant to be is coming to a head.

I realize today that God provides a path for us to follow. I have prayed for days, weeks, to reconnect with my daughter, from whom I feel increasingly distant as she spends the bulk of her day with her tutors. By the end of her "work" day, I'm busy with supper and dishes, and then bed. I don't get "quality" time with her. What does God do? He sends snow!! Unexpectedly, our afternoon tutor cancels due to weather today, and I'm left thinking, "What do I do with this child of mine this afternoon?" Amazingly, her baby sister napped, and we got time together. She helped me unload the dishwasher. We made cookies. We sat around and ate cookies. We looked at books. We roughhoused and played. It was a wonderful experience that suddenly helped me connect with my child again (and allowed me to see how much she's grown up the past weeks and months!!!) I feel like I can resume being her mother.

I have other paths to follow. I get the sense that God has laid a road for me to follow in the coming months, and I want to be obedient and travel it. I'm hoping it will lead me to where I think it's going, but I'm okay if it takes me somewhere else too. I finally feel like my life has direction again after years of being adrift. There's a role for me and my family in this larger community, and my greatest desire is to fill it.

However, instead of going it alone like Dr. Seuss predicted, I'm going by the grace of God and the help of my friends and family.

It's gonna be an awesome ride.

Developmentally Appropriate

2009-03-12T14:02:00.003-05:00

After last entry's wallow in self-pity, I wanted to focus on something positive. :)

We had our first fight over a toy last night. I was overjoyed! Why? It was normal. It was a glorious, normal sibling behaviour! Success came as a screaming, hair-pulling, push and shove rumble over the toy piano.

I'm amazed at how far Abby has come in recent months. When we started ABA in November 2008, she often tantrumed, didn't point, hardly vocalized, didn't really wave hi or bye, didn't know how to colour a picture or paint, and rarely made eye contact. Now, thanks to the hard work from her "team", there are rarely tantrums, she points and asks, "up" (OMG!), waves hi and bye with gusto (and even makes eye contact while doing it!), loves colouring and painting, and trying soooo very hard to speak (she actually says 6 words)!

And now, to do something as socially aware and as developmentally appropriate as fight with her sister over a toy... let me tell you, my heart is aflutter with joy. I'm even really excited that I've bought her puzzles rated for ages 3+... I can't remember the last time I bought her a toy that's actually for her age group (instead of for infants).

Now, someone please remind me of this moment in six months when I'm complaining about how they're always fighting over toys....

Tangible Creativeness

2009-03-08T14:51:00.008-05:00

I've been neglectful of this thing recently... I'm apparently no better keeping up a blog than writing in my diary as a child. I never kept a diary on a daily basis, but I did keep journals. I would write in them sporadically as the mood would strike me, often after swooning over the boy I liked, or having a fight with my mother. Someone once gave me one of those dairies that locked, and had the dates all pre-entered so you could write every day. I did try writing every day, stuff like, "Today I ate an orange." The sporadic journal was much more interesting.

Now days, my life generally keeps me away from writing. I think about what I want to write, but then someone has a poopy diaper, or supper needs to be made, or laundry needs to be folded. I never seem to get a chance to sit down and do the things I want. Such is the life of a grown-up, I suppose.

I didn't keep the journals, but I kept a lot of the "creative writing" stuff that ended up in it. My goal was to someday publish it (I was foolish enough to think that I could some day be a published writer!). I even had a name picked out for the collection: The Better Half of Works, Undone. And I would lead it off with this piece:

Instinctive Writings

Word of mouth
Bird of flight
I see the shadows
I believe in light
No falling down
No place to run
The hunt is on
To find the sun
Darkness fell
The light protrudes
I can’t decided
Know not to do!
I cannot see
Seem to breathe
Falling shallow
Set me free
Purple wars
Welcome doors
Open sores
Pages torn
Instinctive writings
Word of mouth
No use fighting
I’m falling down

Dryness reigns
Terror parched
Life begins
The soldier marched
Seeing blind
Holding on
Blackness choking
Life's own song
Autumn rising
Summer sets
Winter looming
No springtime yet
Instinctive writings
Word of mouth
No use fighting
I’m falling down

I used to possess this creative energy that allowed me to write and compose music and paint and draw... of course, I was horribly, horribly depressed and would occasionally contemplate suicide, but that's besides the point. I would never desire going back to that state of psychological illness, but I do miss the creativeness that flowed from it. And while I have creativeness that flows from me in other ways (the songs I make up for my children, the meals I cook, the projects I undertake around my home), I often feel that they don't have the same tangibleness about them.

Of course, in return for giving up that aspect of my creativeness, I have my life, and for that I'm thankful. And my husband and I have created a wonderful, beautiful life together and two gorgeous children. Why I didn't think of those things as tangible until just now is beyond me...

Perfection

2009-02-10T15:46:00.005-06:00

We finally seem to have gotten over our little epidemic that invaded our home... in the space of ten days, we had 4 colds/flus, 2 cases of pink eye, 2 chest infections and strep. Other than a few residual coughs, we're mostly mended.

I was watching Rachael nurse today, and I got to thinking about how perfect she is. Rosy cheeks, perfectly formed little lips, adorable hair that stands on end, and the endearing blue eyes. She grasps and holds my hand while nursing, giving herself reassurance and I suppose reassuring me in the process. I've been agonizing whether or not to bring Rachael to the doctor's for her 4-month check-up. So far, the doctor seems to be okay with me not giving her vaccinations, but I wonder when that will change.

I know the vaccines didn't cause Abby's epilepsy and autism. I don't even know for sure if the influenced the way her conditions unfolded, although deep down inside my heart I think they probably did. I can see how different my children are from one another, and how unaverage Abby was from the very first days of her life. Really, there's no logical justification to not vaccinate Rachael.

But I look at her, and she seems so perfect just the way she is. I'm scared to mess with perfection.

When Abby was born, my mom was always saying how perfect she was. I agreed. On that terrible day when she was 7 months old, I joked that she was still perfect, and that we were just taking her in for "warranty work". That was the day we drove to the Children's Hospital two hours away to start her first course of ACTH.

As the months and years pass, I struggled with the idea that my child was less-than-perfect. Was I somehow betraying her with the idea that she was somehow defective? Would the seed of that idea alter the way I treated her, raised her, and loved her?

Now, two years later, I've come to an uncertain peace within myself. I've come to realize that my child may not be the normal picture of perfect, but to me she still is perfection. I love her just as fiercely, just as intensely, and just as deeply as I did the day before our lives changed. She is still my pretty perfect baby.

And now I watch my new, perfect little daughter, as she sucks eagerly at my breast. I know that, she too, is perfect, just like her sister.

I think I'll hold off taking her for her checkup.