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Sunday, December 20, 2009

We finally finished our creche!!





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

Friday, December 18, 2009

The One That Carolyn Originally Published Without A Title

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

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









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


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

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




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

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


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

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

(maybe I really should give her an Ativan)


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



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

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

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


Thursday, December 17, 2009

An Update


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


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


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

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




video

Monday, December 14, 2009

And the Greatest of These Is Fear


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

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

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

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

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

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

Why is God mad at me?

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

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

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

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

And then I saw it.

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

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

Monday, November 30, 2009

Moved

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!

Friday, November 27, 2009

Excitement

One more sleep until moving day!! Eeeeep!

Sunday, November 22, 2009

And Now For Our Feature Presentation....

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


video

Saturday, November 21, 2009

The Countdown Is On!!

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. :)

Monday, November 9, 2009

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

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.

Saturday, November 7, 2009

The Waiting Game


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::

Saturday, October 31, 2009

Bah, Humbug!

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

Sunday, October 25, 2009

The Strength of Our Feet

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.

Saturday, October 24, 2009

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. )

Saturday, September 12, 2009

Kick Butt... Run!!!

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!

Friday, September 4, 2009

Seizures and H1N1

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

Monday, August 31, 2009

Now, How Awesome Is That???


I'm the mommy of a covergirl!!

Wednesday, August 26, 2009

Promises

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.

Promises

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.

Saturday, August 22, 2009

Oh! That Smile!!

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

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

History

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.



Saturday, August 15, 2009

The Whole Beef Enchilada

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. :)

Thursday, July 30, 2009

Revelation

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.

Wednesday, July 29, 2009

The Price of Admission

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.

Wednesday, July 1, 2009

Kamping With Kiddies 101

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.

Wednesday, June 24, 2009

Cheering Section

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

Monday, June 22, 2009

Baby Goes Bonk

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!



Friday, June 19, 2009

Grief

(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.

Thursday, May 28, 2009

Empowerment

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. :)

Friday, April 24, 2009

A Jarring Situation

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

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

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

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

*makes low growly noise*

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

Thursday, April 23, 2009

O Sleep, O Gentle Sleep*







Good news. I'm not nuts.

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

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

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

*does a little dance of joy*

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






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

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

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

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

Monday, April 20, 2009

Tracing the Fine Line

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

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

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

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

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

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

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

Saturday, April 18, 2009

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.

Friday, April 3, 2009

How Much Is That Doggie On The Television?

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

Then I realized there was a dog TV.

Yes, Abby, that is a puppy. :)

Thursday, April 2, 2009

Acquisition

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

It really is a marvelous thing.

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

"Abby, what do you want?"

"Up!"

"Abby, what do you want?"

"Bubbles!" (pronounced buh-boo)

"Abby, are you hungry?"

"Ah!" (affirmative)

"Abby, clean up that mess!"

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

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

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

It was hard not to cry.

Wednesday, March 25, 2009

Oh! The Places You'll Go!

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.