First and a Half of Three

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. 

The Queen City

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!

Four Things

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.  

The Day Google Was Unhelpful

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::

Something New

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"

 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!

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

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.

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

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. )

Uncharted Territory

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

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

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

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

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

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

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

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

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

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

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