December - where have you gone?

It's been a BUSY month! Besides the usual assortment of appointments, we've had a few birthdays, three christmas parties, Kasia's 6-month oncology tests, a meeting with our geneticist regarding her plans to feature her in an upcoming international genetics conference and a meeting with our social worker to discuss options for kindergarten next year. Add to this the rush of christmas shopping, decorating the house, holiday baking and a seemingly endless amount of snow and I'm ready for a vacation.

Here are some of the highlights, in pictures:



998 candies in the "Guess How Many?" jar I made for my office party - and I counted every last one of them. The closest guess was only one off at 999!



Like mother, like daughter. The icing is the best part!




Trying to live up to my own mother's mad baking skills. Have a looooong way to go.





Saying hello to Santa at the NOFCC Children's christmas party (with Nonna).





It's all good news at Kasia's 6-month check-up at the Cancer Centre.

Winter Wonderland?

It seems like a lot of us are feeling a bit down lately. I know I always start to feel kind of grouchy when winter rears it's ugly head. You'd think that living in Northern Ontario for the last 30-ish years would have left me prepared for winter's arrival, and yet it hasn't. I am still appalled at the appearance of all those fluffy white snowflakes and curse their interference in my daily activities.



Winter is scraping ice off of a windshield at -30 degrees and letting the car run for 15 minutes before going anywhere. It's hats, mittens, boots and scarves. Frozen fingers, red cheeks, slippery streets, shovelling, snow blowing and 4-wheel drive.







But....winter is also snowmen, icicles, sleigh rides and snowballs. It's sledding, skating and nightime walks with fluffy white snowflakes flying all around and Jack Frost nipping at your nose. It's Santa Claus, decorations, lights and Christmas trees. Hot chocolate, sugar cookies, candy canes and chestnuts roasting on an open fire.

According to the song, it's the "most wonderful time of the year"!

I know.....who am I trying to convince?!?

I Like Myself!

by Karen Beaumont

I ordered this book through Scholastic at Kasia's nursery school and picked it up today. What a pleasant surprise! I liked it so much, I'm giving it an official recommendation!

It's an adorable little story that teaches children about self-acceptance and truly liking themselves for who they are. We could all use a little more of that.....

If it Wasn't for Bad Luck........

Kasia had dental surgery scheduled on Monday to fix teeth that were ravaged by constant reflux & vomiting for the first 18 months of her life. Since there were so many, we had to travel to Sick Kids in Toronto to have it done. November is such an iffy time of year to travel to Toronto and old man winter definitely must have heard that we were coming!

We got there in one piece and checked into our hotel room, which was beautiful with a breathtaking view of Lake Ontario. But I guess the stress of the day coupled with the anticipated stress of the next day (coupled with remorse that I had paid $17 for a room service Caesar salad) were enough to keep both Dino & I up most of the night.

Monday started out perfectly. We met with the dentist doing Kasia's surgery and were immediately put at ease. He was friendly, experienced and assured us that the surgery would be over quickly and with very little pain for Kasia. We then met the anesthesiologist who was also really great. She even asked what Kasia's favourite tv show was (Backyardigans) and promised to sing it to her as she was going to sleep.


As we waited in the OR waiting room, Kasia fell in love with this car. Not too obvious, is it?





















We were all having so much fun until it was time for Kasia to go. When the nurse came to take her, I once again felt that heart wrenching feeling of not wanting to let her go. As I got my last glimpse before they went through the doors to the OR - of her little hand reaching back out towards us - all I wanted was to have her back in my arms.


In the days leading up to the surgery, I had started to worry. What if something went wrong? What if I gave her over for dental surgery and something went horribly wrong? As we headed over to the surgical waiting room, my stomach started to churn.



But right on schedule, her dentist came to find us and told us that everything had gone wonderfully. We would be able to see Kasia just as soon as she was settled in recovery.



And then we waited. And waited. And waited. An hour had gone by and we were still waiting. It was deja vu from Kasia's last surgery - watching parents come and go, willing with all of our might that the volunteer would finally call our names and bring us to see Kasia. And then I looked up and saw two anesthesiologists walking towards us with faces that said it all. Their words got through to me in disjointed spurts as I tried to understand what was happening.




"Something happened on the way to recovery.....stopped breathing....

.......not sure why .......... her brain ...............

.......................breathing tube ................."



Terror. Absolute terror is the only way to describe how I felt. I thought that at any moment, they would finish their story and say something like, "We did all we could." But eventually, they assured us that she was okay but that they were going to admit her for observation.


I couldn't wait to see her. Finally, after another half an hour, I did. She was curled up on a bed, hooked up to monitors, with puffy little eyes, blood on her mouth and some odd scratches on either side of her neck. (I found out later that those scratches were from the nails of the anesthesiologist frantically trying to open up her airway to get the breathing tube in.) She was still so sleepy, but I called her name and she opened her eyes a wee bit for a second. All I wanted was to know that she was really okay. That came a while later - when I sat her up, she looked at me through those puffy little eyes, reached out her arms and in barely a whisper mumbled, "Hold you".

By the time she got to her room, she was almost back to her old self. A little worse for wear, but nothing we couldn't manage. The nurses showered her with stickers and little presents and she revelled in the attention.







By the next day, without an iv to tie her down, she was running all over and getting into trouble like usual.






Boredom brings about strange games like "push-the-laundry-cart", which we did for close to 45 minutes while we waited to be discharged! What fun!





The doctors recommended that she have a sleep study done in the future to test her breathing patterns while asleep and we'll always have to worry about sedation from now on, but thankfully we were in one of the best children's hospitals in the world when it happened. One thing is certain - we'll never entrust her to any other hospital.

We Have LOTS of Words!

As I wrote about in a previous post, Kasia was referred to the assistive communication clinic this past June. I met with them in September and was supposed to be working on compiling a list of words to include in a communication book for her to use. They gave me a deadline of December 6th to return the paperwork and word list.

So since September, I've picked up and put down the paperwork numerous times. Selecting words is not as easy as I thought it would be. Should I include "dog" if she says "dog"? That question started coming up more and more in recent weeks as Kasia began to say more and more words.

Last week I decided that since Kasia would be seeing her geneticist in early December (and they always ask so many questions and want so many details), I would try to compile a list of words she says on a regular basis, so I could accurately report to her on how Kasia was doing with speech. Needles to say, I was pretty surprised!


And then my thoughts turned back to that manilla evelope from the assistive communication clinic that had been sitting on my desk for months. I felt so badly that I hadn't completed my assignment so I decided that I needed some help and called her speech therapist for advice. (She hasn't seen Kasia since late June.) During the course of our conversation I mentioned that Kasia is now using between 125 - 140 words on a regular basis and there was complete and utter silence on the other end of the line.

"Hello?" I said.

The therapist was so shocked by what I had said, that she couldn't speak! When she finally got her composure back she agreed that it might be a good idea to put the communication book on hold for the time being until she has a chance to re-assess her. She also added that I had "made her weekend".

I can't tell you how good it felt. I'm so proud of my little bee.




(Graduation from Jr. Path preschool - June 2008)

The Answer?

Could this be the answer we've been looking for?






It's a low volume nutritional supplement in a 1.5 oz liquid cup. The kicker? It contains 330 calories and 7 grams of protein per cup!! When you have a child that eats like a bird and is measuring below even the smallest of the small kids on the growth charts, this kind of discovery gets you pretty excited!



The only drawback....it's not available in Canada, but I did manage to finally get my hands on some thanks to some helpful American relatives. (If you're reading this: thank you, thank you, thank you!)



So I gave Kasia her first sample tonight. I mixed half of one cup (about 165 calories) with her regular amount of Resource Just for Kids (4 ounces at about 160 calories) and suddenly, the child has literally doubled the amount of calories ingested in her before-bedtime milk. Holy cow! If this doesn't help to put some meat on her bones, I don't know what will!

Happy Halloween

Here's the Bee, dressed as..... a bee!



The day didn't exactly start out great (we had a huge throwing up incident in the truck on the way to nursery school this morning), but it's turned out to be a pretty happy Halloween after all.



This was the first year we actually took Kasia trick or treating and boy.....she LOVED it! After the first couple of houses, she really started to get into it - she'd wait at the door but as soon as it would open, she'd burst inside and yell "Candy!"

Three Years!

This past Friday, October 17th was exactly three years since Kasia's surgery to remove her liver tumour. In the days that followed, we waited anxiously for any news about what the tumour was, why it was there, and if it was malignant or not. And five days later we finally received the news we hadn't wanted to hear. Cancer. It's hard to explain how we felt when we got that news. We were sort of numb actually, and it didn't really sink in until much later.

Then came the decision about whether or not Kasia should have chemotherapy. Luckily, we had an incredible doctor who really looked carefully at all of the information and took everything into account before finally giving us his opinion that we could be safe to say no to chemo. We put all of our trust in him, and to the surprise of many other oncology doctors then and now, his opinion was right on the money.


Kasia has now been cancer-free for 3 years! At our last visit to Sick Kids, her new doctor (unfortunately, her original doctor is now working at a children's hospital in Ireland) informed us that with the type of cancer Kasia had, after 3 years, they pretty much consider it gone - likely never to return. Hearing that news made my heart feel as though it would burst right out of my chest.

This past week Dino & I have talked a lot about those days and our memories.


Reliving the moment of tucking a little pink teddy bear rattle under Kasia's arm, kissing her head over and over, walking her crib to the doors of the operating room and then having to do the impossible....let her go.

And how we then waited with so many other parents in the surgical waiting room and watched the room slowly empty out, hour by hour, until we were almost the last ones left waiting.

Remembering how we slept on a tiny cot together for days and then in a waiting room with 25 strangers for the 3 nights we had no room.

Meeting more doctors in one day that I've met in my lifetime.

How we ate Burger King for breakfast, lunch, and dinner.

Dino walking into the critical care unit carrying a big helium Disney Princess balloon and tying it to Kasia's crib. We still have it.

The day that instead of just shaking his hand, Kasia's doctor gave Dino a big hug because it seemed like he needed one.

How my mom and sister-in-law surprised us by walking into Kasia's hospital room one day - after having driven for 4 and a half hours to get there - carrying boxes and bags of supplies for us...cookies, fruit, bread, peanut butter, crackers, juice, clean clothes, pillows and anything else they could cram in. And even though it was my mom, it remains hands down the nicest thing that anyone has ever done for me.

When I look back to that time 3 years ago, I never could have imagined how well things would turn out. And as we near her official 3 year check up, I hesitate to let myself believe it actually could be over. As a friend of mine who lost his daughter to cancer four years ago said, "Having had a child with cancer, even when they're in remission, I think all of us live in a constant state of fear, waiting for the other shoe to drop."

True. But today we celebrate - and even though Thanksgiving was last week (at least it was here in Canada), this week is always the one that has us reflect on how thankful we really are.

Twisty Towel

Finally found a use for that twisty hair towel thing! Who knew it could cause such big smiles!

Physician, Heal Thyself!

Yesterday I had an appointment with the family doctor - the very one from who's care I removed Kasia when she was about 18 months old due to his overt lack of faith in her. There had been comments right from the beginning like, "You can always try again", "It'll be interesting to see if she'll walk", and my personal favourite, after we commented on how we were keeping our hopes up that she would be okay, "Oh no.... not likely. Chromosomes affect every cell in the body, so.... no... she probably won't be okay."

Huh. How much can a person take? So I quietly went about finding her a new doctor. Not so easy in a city suffering a huge doctor shortage, with thousands of people without a family doctor. Through a recommendation from Kasia's pediatrician, I was able to get her another family doctor, a really nice one, but unfortunately after just 6 months, she went on maternity leave and closed her practice indefinitely.

In the meantime, the original family doctor became aware that I had pulled her from his care during a conversation with my father in law, who bluntly explained to him that I hadn't liked it very much when he insinuated that Kasia would not walk. He denied any such remark and seemed very surprised and hurt that his comments had been so terribly misunderstood.

Whatever.

Unfortunately, I have had to keep this man as my family physician. Until I can secure another doctor for myself, I am not stupid enough to throw myself out there at the mercy of walk in clinics as just another nameless face with no medical history file with which to refer.

Which brings me to yesterday. Of course I made Dino come with me to my appointment. (He actually made me promise him that I wouldn't be rude!) It was actually okay.... for a while. But just when I was starting to think I had horribly misjudged the poor man, he made a remark that blew my mind. At one point he asked how our daughter was doing and how old she was now. Although I can't remember his exact words and I won't even try to paraphrase, the gist of his response was halfway between surprise and congratulations to us that she had made it to three & a half years old.

Oddly enough, both Dino & I just let it go and only talked about it later after we had left the office. I was actually glad that he had been there to hear it, so there was no doubt in his mind about what had been said.

The thing I'm most surprised about: I'm not angry. What I do feel is disappointment. Really deep disappointment that he wrote my daughter off from day one and still believes that it's only a matter of time before her bad chromosomes which have "affected every cell in her body", finally cause her little flame to flicker out.

I guess he doesn't realize..... she's a firecracker.

Genetics

There was a mysterious message on my answering machine yesterday from our genetic counsellor. Firstly, Kasia's geneticist wants a follow up with her in December and then this: a tantalizing little tidbit.... "we also have a new technique we'd like to try with Kasia, and we'll need you to come in sometime next week to sign some papers, etc."

My mind was swirling! New technique? What could that mean? For a moment my heart raced and I allowed myself to wonder if this new technique could somehow be a "cure". I abruptly stopped myself from prancing any further into that fantastical dreamworld and instead picked up the phone to return the call.


So the new technique isn't a miraculous cure. It's a new test that can look more closely at Kasia's chromosomes - more specifically at the deleted section, and pinpoint exactly how much genetic material is missing and maybe even which genes are located within that missing section. And of course, the same goes for the duplicated section. What's hiding in there?









Great. Science is amazing, but what does this mean for us? Does it mean we'll now get even more bad news? Like maybe she's missing the gene that stops everyone from turning a lovely shade of magenta when they reach the age of five? Or maybe the gene that would've allowed her to speak fluent Dutch one day has gone astray. I guess what I'm saying is, how much do I really want to know? Will her kidneys become diseased and shut down by the time she reaches 15? Or is she more susceptible to certain cancers because of her genes? Granted, that's all good information to know, but....

So I started wondering about their motivations. What would really encourage them to do a $1,500 out of country blood test on a child who already has a diagnosis? And then I recalled our last visit with the geneticist.... and her voicing a desire to write an article about Kasia for a medical journal. Kasia's genetic profile and expression of the syndrome have been different enough that her geneticist thought an article was warranted. And though I'm sure they've started writing it, I haven't yet agreed to this article, but I'll just bet that some in-depth chromosome mapping would make it all the more juicy and worthy of publishing.


What to do?

Nursery School - Week 1

"Every artist was first an amateur." (Ralph Waldo Emerson)

Kasia loved her first day of nursery school! And although it was her first time painting, she seemed to be a natural and took her artwork very seriously!

Healing

From reading some other blogs, I happened upon the TherExtras, where Barbara is running a blog carnival on the topic of Healing. I thought it was a really good idea.... to write on a topic that would make me confront my feelings and reflect on how far I've come.


[Those of you that know me well, know that one of my great loves is poetry. I write it in times of happiness and in times of sorrow. It helps me to sort out my feelings and gives me an outlet to pour out my emotions, so it comes as no real surprise that I chose to put down my thoughts on Healing in the form of a poem.

Those of you that didn't know, now know what a huge nerd I am. The secret was bound to escape sooner or later. On the bright side, I think we should all breath a collective sigh of relief that I chose to express my feelings through poetry and not interpretive dance.]

A couple of things I have to say first: Being the parent of a child with special needs, has not made me a saint or a hero or a perfect mother. Following Kasia's diagnosis, I had a lot of anger towards everything and everyone....including her. I can't tell you that I embraced my situation from day one and went right back to living a normal, happy life. I absolutely didn't. It's taken a god awful long time to get here, but it's been worth it. Kasia has taken me places I never would have imagined, and together we've seen miracles. Because of her, I've met so many special people. How could I now consider myself anything but the luckiest mother in the world?




Restoration of a Soul

Healing is a thing that I found very hard to do.
The early days were fraught with deep despair and anger too.
Sadness had me in it's grip and would not let me go,
And Anger & Resentment were a constant nagging foe.


Such questions swirled around my brain like What? and Who? and Why?
Home Come? would often follow and What If? would be nearby.
But answers never came and so my questions lingered there,
And hung around and clung to me like smoke curls in the air.


Those days I found it difficult to live inside my skin,
And wanted nothing more than for a towel to throw in.
I looked upon my daughter as the cause of all my pain,
Envisioning the things in life she never would attain.


Like holding up her head, or reaching out to grab a ball,
Smiling, rolling, sitting up, or learning how to crawl.
These things seemed so unlikely for a child with such mistakes,
On genes with missing data lost forever in their breaks.


But slowly came acceptance for this child that I had made,
Beautiful and strong and with development delayed.
Haunting eyes and silky wisps of golden coloured hair,
A lack of muscle tone but personality to spare.


Then joy replaced the sadness when I looked upon her face,
And tiny gains were cause for celebration, not disgrace.
This child of mine, so special, such a wonder to behold,
The greatest gift, to walk with her and watch her life unfold.


Accepting her for who she is has helped to heal my heart,
And letting others in to help has also done it's part.
The best advice I ever got: to take it day by day,
Indeed, the road's been long with many twists along the way.


From shock, denial, anger, grief, and overwhelming hurt,
Each step was necessary on this path towards rebirth.
So now I've come to realize how much I've truly grown,
Become the kind of woman not afraid to stand alone,
And say "This is my child!" and with her standing at my side,
Be filled with nothing less than endless love and patent pride.



Kara

Sick Day

As expected, I couldn't really escape getting sick with whatever Kasia has. And let's be honest, escape is pretty much futile after getting a snotty hand thrust into your mouth 2 or 3 times.

So today we spent a sick day together. The day started out normally enough with Kasia in her pj's. But then the pj top got dirty, cold little feet needed socks, and someone insisted on the rather odd idea of wearing an alpine inspired wool jumper on top of it all.

This was the result: (and check out the laid back model-like pose!)




In Kasia's defence, I have to give her credit for some excellent colour matching! It's a well known fact that to effectively mix patterns (in this case: stripes, hearts, diamonds and bears) you must ensure that they all contain the same colours. A+ Kasia!

Murphy's Law

Whatever can go wrong, will go wrong. At the worst possible time, in the worst possible way.

Yup. That about sums it up!

Back in June, Kasia had an appointment with dental at Sick Kids. (It came as no surprise to us to hear she had some cavities, after all, the poor kid had reflux for the first 18 months of her life and threw up at least four times a day.) Due to her age and the amount of dental work needed, it was determined she would need to be anesthetized for the dental surgery. Operating time being as precious and scarce as it is, her surgery was booked for September 24th - three months away. Our only job, to keep Kasia healthy for the 4 weeks prior to surgery, otherwise it would be cancelled.

So I did all I could. Kept her out of preschool for the month of September; limited her exposure to other children; gave strict instructions to family and friends that hugs were okay but kisses were not; and became a hand washing fanatic. I came as close to putting her in a bubble as I could. And it worked. Since June, she hasn't had so much as a sniffle.

So here we are, the weekend before her surgery...... and what happens? She gets sick. And not just sick, but about as sick as I've ever seen her. It started with some watery eyes and sneezing, and quickly progressed to a raging two day fever that I could barely keep under control, shaking, vomiting, lots of crying and the coup de grace..... a seizure. The first one in 7 months.

It means that tomorrow I have to call and cancel her surgery. Depending on when it's rescheduled, I'll have to decide whether or not to start her in the nursery school program before then. It also means the dosage of her seizure medication isn't working anymore, which makes me worry that with all these recent dosage increases, maybe one day it'll just stop working altogether.

Seven months without a seizure and I guess I forgot just how horrible they are.

She's doing fine now - a lot better actually. In fact, good enough to help Mommy in the kitchen with dinner and here's the evidence to prove it:

Did You Know?

September is Childhood Cancer Awareness Month in Ontario?

All across the province, POGO, the Pediatric Oncology Group of Ontario has been celebrating with special events and activities. We, being a much smaller centre than some of the other Southern Ontario cities, planned a smaller event, but it was still a great success!

The pediatric unit at the Northeastern Ontario Regional Cancer Centre hosted it's first open house today in celebration of it's 10th anniversary and we took the opportunity to celebrate Childhood Cancer Awareness Month along with them.

We had a mayoral proclamation, information booths and displays, clown and face painting for the children, a great cake that I didn't manage to get a picture of, and an opportunity for the public to tour the pediatric unit and meet it's wonderful staff.

Here are some pictures of Kasia having fun with the clown:

Having a child diagnosed with cancer was devastating. But meeting other parents and children who have fought so hard against it, getting to know the incredible people who treat our children and come to truly care about them, and becoming a board member for a local parent group that fundraises for these families has been one of the most inspiring and important experiences of my life.

A Kasia Update

Summer flew by at lightening speed. It seems like only a few days ago that Kasia was graduating from her nursery school program. Wow...that was in June! That also brings to mind one of her last days of nursery school and a conversation I had with her speech therapist. The gist of the conversation was the suggestion that Kasia be referred to the assistive communication program. This is the program where children are provided with communication books that contain pictures and/or symbols that they can point to in order to communicate. Sometimes, they even receive talking books - where they press on pictures or words and the book speaks for them.





Last year I would've gone to a dark place at the mere thought of Kasia being referred to assistive communication, but apparently I've grown! I'm trying to see these additional therapies as simply that..... additional therapies that can only help Kasia. It doesn't mean I've given up on her talking - in fact, it's exactly the opposite!



Back to the converstion with her speech therapist in June.....

One of the things she asked of me was to make a list of all the words Kasia could say. I struggled to come up 10. And truthfully, most of the words on the list were cheaters like:

ha (hat)
pa (pants)
ba (mom)
tow(towel)
shur (shirt)

You get the point.

Well, in less than 3 months time, how things have changed! Now we hear hat, pants, shirt, coat, car, cat, hi, bye, dad, bird, bed, towel, plate, pen, paper, open, up, good, bad, hot, cold and I can't even believe it, but words like counter, happy, awesome and water! I'm still "Ba" right now, but that's okay!


So to all those who speculated, and inferred and suggested that she would never talk, well I guess that they can now just go and

eat their own words!

A Rude Awakening

Friday morning as I hurriedly left the house on my way to work, I opened the door to my truck and stared for a moment, puzzled at what I was seeing. Papers, napkins and tissues strewn all over the front seats, the glove box and center console wide open. The scene reminded me of my driveway a week earlier, when a bear had ripped open our garbage and scattered it all over the yard. This however, was not the work of a bear - though I'll admit, it was my first frantic thought, and I actually gave the backseat a quick once over before slamming the door and running back in the house! Rational thought was obviously not at work if I seriously considered the possibility of discovering a bear hiding in the backseat.


So after regaining my senses and realizing that a real live person had broken into my truck and not a 500 pound bear, I was brave enough to go back out and check it out.


Lucky for me, but not so lucky for the would-be thief, I've got nothing even remotely valuable in my truck. I really hope he enjoyed rifling through the used tissues, napkins and antibacterial handwipes that I had been too lazy to empty from my cup holder last week. For some reason, he thought maybe I had some gold bullion tucked away underneath all of that. And though he expected to find some valuable treasure in the centre console underneath the cache of fast food napkins, alas, all he found was an empty lip gloss box, a hair elastic and a dried up tube of vanilla scented antibacterial hand gel. He even pulled apart the owner's manual, apparently looking for dollar bills tucked away between the pages! Boy, did he pick the wrong vehicle, because that glove box didn't even contain a nice consolation prize like a pen!


In all seriousness though, I just can't believe the nerve! To come into our yard and ransack my truck parked right next to our main entrance! It's unsettling. Even though I'm sure it was a couple of young punks, it's still had me on my guard all weekend. It's made me think twice before opening the door at night, and before getting out of my truck when I get home after dark. (Right Kar', don't lie to the nice people....most nights you're in bed before dark.)

Anyways, I guess it's taught me a lesson. I used to lock my vehicle each and every time I got out of it, and for some reason I got out of the habit. (I blame Dino...but I digress.) Society has certainly changed from the one I knew as a kid - where we never locked our doors at night and felt safe in our own homes and neighbourhoods. Where kids could stay out and play til way after dark in the summertime and all their parents had to do was yell their name out the front door and they'd come running.

I wonder.... is it still like that anywhere in the world?

Look Out Son...I Think She's Gonna Blow!

A few months ago I embarked on a mission - a mission to get my child into a day care or nursery school program and have her needs attended to while she's there. Unfortunately, it's turning into Mission Impossible.


Last month I took half a day off of work to meet with our worker from Agency #1. This meeting was to talk about Kasia, her issues and what her specific needs would be in a daycare setting. Also, this meeting was apparently necessary to have her referred to Agency #2, the umbrella agency that provides help and services to children with special needs. And in turn, this referral was required in order to have an assistant provided for Kasia while in her nursery school.



So all was well. We had the meeting and got referred. I chose the nursery school, met with the teacher and was anxiously awaiting Kasia's start date.



Yesterday I decided to call the teacher to find out if they had been able to find and hire an assistant for Kasia. To make a long story short: No. They've not yet been approved by Agency #2 for the funding to do so. When they get approved, then they'll post the job advertisement and start interviewing. (But she's supposed to start in 3 weeks!)


And here's the BEST part!! If they don't get the funding for an assistant, then I or another caregiver will have to accompany Kasia to the nursery school each day and remain the entire time she is there. WHAT??!?? So the deal is, I pay $120/month for two half days per week AND I get to miss work to be there as her unpaid assistant?? That's the most ridiculous thing I've ever heard!



Oddly enough, yesterday I got a letter in the mail from Agency #2 regarding Kasia's referral. Part of it said this:


"The next step would be to meet with you to gather pertinent information about your child."


That's right.... another meeting. A meeting to give the same "pertinent information" that I gave a month ago to our worker from Agency #1. More time off work!



Part of me wants to call this person and ask if I can't just provide the "pertinent information" over the phone, but then I wonder if it would affect the application for funding. Asking for something in person is always much more effective.



This all just makes me crazy! Why do we have two separate agencies that do basically the same things? And why don't they communicate?!? As a parent of a special needs child, I feel like at times, in order to get the services my child requires, I have to endure some pretty absurd things. Retelling the story of Kasia's birth & subsequent genetic diagnosis to no less than 25 doctors, residents, and fellows at Sick Kids is a prime example. It seemed like every time Dino & I would have 2 minutes to breath, someone in a white coat would show up in our room and ask us to tell our story "from the beginning." This feels like the same thing. I don't know if they realize it, but re-living the memories and giving out the details isn't easy. In fact, some days, it's pretty hard on the ol' spirit.

Angry tirade over.

Random Weekend Musings

As fast as this weekend was to arrive, it seems to be over even quicker. It was a quiet weekend for us, filled with the usual grocery shopping and house cleaning, so if time flies when you're having fun, I've got no explanation as to why this particular weekend flew so fast!


Fall is definately in the air now, with cool, crisp mornings and nights that have you reaching to pull the blanket up around your shoulders. It's my favourite time of year. Back to school, shopping for new clothes, the colours of autumn, piles of leaves and the smell of pumpkin pie. Okay, maybe I'm rushing things a bit.....

So maybe all these thoughts of fall put me in the perfect mood to grab Kasia and take her fall clothes shopping. Well, that and the fact that the kid grew like a bad weed and suddenly all of last year's pants are hitting her around the shin. I just can't believe how much she's grown in the last few months! (And for the record, those are pj's - and mismatched ones at that!)







So another task that we got to this weekend was putting up the wall decal in Kasia's room. Thank you Dino for helping me with that job! He's so meticulous, so careful and so focused on every last detail. He even insisted on using a level for crying out loud!

I think it turned out great and so does Kasia. When we lie in bed at night, I say to her, "What's that over there Kasia?" to which she replies, "Bewrds!"

Bless the Children!

No, it's not a mini Mother Theresa - it's goofy Kasia wearing my shirt, which she put on all by herself! Way to go Kashie!


There's just one problem..... her head is in the arm hole.

Extreme Makeover, Bedroom Edition

It's been such a long time coming, and it's still not completely done, but here are a few pictures of Kasia's bedroom makeover to this point.

Kasia helping to get Daddy motivated to paint by drumming out a tune on the paint cans:

Ahh...freshly painted and the chandelier that I bought over a year ago is finally installed. And no arguments about the paint colour this time!

Loves her new bed! (Now if she would only sleep in it.....ALONE!!)

Picking out her own clothes already......

"S" is for School

Yesterday we visited the nursery school Kasia will be attending 2 half days/week in the fall for a look around and to meet her new teacher. What a great place! Small, bright and full of lots of fun things. However, by the time we left, the room looked like a cyclone had hit it. Kasia investigated everything - most of which she left strewn all over the place. Her favourite discovery: the Kasia sized counter & sink with taps that she could both reach and turn on. And right next to that, the automatic paper towel dispenser which was no less than utterly awe inspiring. She must have gotten at least 20 paper towels from that dispenser in under 5 minutes - the smile on her face bigger than I had ever seen it. I do believe that their water bill and paper towel budget will "mysteriously" shoot through the roof in the fall.

Kasia also got to choose an animal picture which will be on her locker, at her place for circle time, and on her name card. With a whole table full of animal pictures laid out in front of her, she picked a pretty butterfly - but not before some tense moments where it looked like she was going to pick the worm. Well the worm was pink, but still......

I'm excited for her to start, but nervous too. This will be her first time integrated into a class of "typical" kids. I wonder how she'll manage with them. Will they talk to her? Will they be mean to her? Make fun of her? Will they ask lots of questions and want to know why she doesn't talk, why she's so small and why she has her own assistant? Will their parents ask those same questions? And on the other hand, maybe it'll be really great. The other kids might fall in love with her and she might just flourish by being around them. Whatever the case, I know I can't hold her tightly in my arms and protect her forever, but as I'm learning, letting go is far from easy.

Potty!

Yesterday, while visiting with a friend I hadn't seen in a while, the conversation turned to potty training. Kasia had just gotten up from her nap and my girlfriend asked if I was going to put her on the potty. I gave her "the look". The look that said, "You're kidding right?"


Potty training, to me, is like one of the great mysteries of the universe. I've always had it in my mind that it would just sort of happen. Do I realize that's crazy? Of course I do. Don't get me wrong, I've made some feable attempts at putting Kasia on the potty but never with any success, so I figured she just wasn't ready. Her preschool teacher also used to sit her on the potty each day. Again, without success. I chalked this up to what I had originally been told and read about Kasia's genetic condition as it related to her development - that she probably wouldn't potty train until much much later - some reports even suggested it wasn't at all possible. Why oh why haven't I learned by now??

So this morning, filled with a new determination to crack this potty mystery, I asked Kasia if she'd like to sit on her potty. The fact that she didn't run from me like a wild jackrabbit was encouragment enough, so we tried. She sat, I sang, and water poured from the tap to help her along. And it happened! Glory be, the child peed! I couldn't believe it! There was lots of clapping and praising and both Kasia and I were pretty darn pleased with ourselves.

Obviously one pee doesn't a potty-trained-toddler make, but it's a start!

Today, is a good day!

What's In a Name?

When we decided on Kasia's name, I knew that confusion would follow. When they learned of her name, family & friends were puzzled...."Kasia? What's that?" Many asked if I had "made it up", which I found hilarious!! No, I assured them all, it is an actual name.... well, sort of.

It went like this:

I was having an awfully difficult time picking a name for our baby. Had she been a boy, Kasia's name would have been Giancarlo, named after Dino's father. (Whew!) Since she was a girl, I got to choose her name. Katherine was always a possibility, but what I really liked was Kate. I struggled.... could I name my daughter just Kate?? Didn't Jane Pauley name one girl out of her 9 sets of twins Kate? I couldn't do it. I saw into the future and heard those would be name lengtheners calling her Katherine and Katie and Kathy. Noooooooo!!! (Not to insult anyone, but we all have those certain names from our past that we would never consider naming our own children.)

So while talking to a friend one day, she mentioned a girl she knew. A girl named Kasia. My heart skipped a beat and I stopped her in mid-sentence to quiz her about the name and she explained....Kasia is the pet form of Katarzyna in Polish. Katarzyna in English is Katherine. Whoa. I decided right then and there and told no one.

After Kasia was born there were quite a few grumbles over her name and strange looks all around. With time though, I think it's grown on everyone and Kasia has certainly grown into her name. She is definately a Kasia, not a Katherine, Katie or Kate.

But as predicted, confusion has followed. Here are some of the crazy pronunciations we've heard along the way:

Most popular: Ka-see-ah (like the Casio watch but with an a)

Weirdest: Kay-zee-ah (embarrasing when it's yelled out into a waiting room full of people)

Funniest: Ka-zha (a la Zsa Zsa Gabor!)

My personal favourite: Ka-sigh-ah (rhymes with Messiah)

The actual pronunciation: Kasha!

We Have Words

Not so long ago, a "professional" told me that "If it happened" it would be "a very very very long time before Kasia would talk" and not to hold my breath. Allow me to present Exhibit A.

Of course, saying words is not technially "talking", but everyone has to start somewhere! Right now I'd say she's got about 15-20 words that she uses on a daily basis and her pronunciation of those words is only getting better and better. Here's just one of them:

Seizures

We recently noticed the return of some"funny stuff" happening as Kasia was falling asleep for naps and at bedtime. Eyes that blinked oddly, hands and feet that seemed to bounce and twitch a bit too rhythmically and great big startling jumps. The kind everyone has now and again just as they fall off to sleep - it's called a clonic jerk. But Kasia wouldn't have just one, she'd have 5 or 6 before settling off into a deep sleep.


All these things I had seen before... before we had put her on anti-seizure meds. So to see these things happening again scares the hell out of me. I'm terrified that it's all starting again and she'll have another big seizure - the kind where 2 ambulances and a firetruck show up at the house and take her away. The kind where I'm leaning over her, stroking her face and telling her that she's okay while at the same time trying to calculate how long the seizure has been going on and making sure she's still breathing. The kind that has me holding my own breath until she opens her eyes and looks at me with recognition in hers. They're horrible, scary, hateful things and I never want her to have one again.

It's been about 6 months since she's had a big one. It was the day after Valentine's Day. I woke up shortly after 5:00 am with Kasia sitting up in bed next to me looking very......odd. She stretched out her arms towards me with a look of terror mixed with uncertainty of who I was. I held her in my lap, yelling for Dino but he had already left for work. The next thing I knew her little body started to shake, I laid her down on the bed and there began the longest seizure she has ever had. There were two calls to 911, the second one frantically asking why the ambulance was taking so long. When it finally arrived, unbelievably, it methodically backed into my driveway and the EMT's sauntered up the walkway like they were there to deliver Girl Guide cookies. I threw open the door with Kasia limp in my arms and screamed at them to get their asses in the house. It was 5:34 am and she was still in the seizure. My heart was beating out of my chest and I wanted to grab the EMT and shake him! Do something!! Finally he picked her up and carried her out to the ambulance, in her pj's - barely wrapped in a blanket and this is when I really went ballistic.

I walked out of the door into the frigid February morning and saw my tiny 3 year old, barely concious, strangely propped up onto the gurney with the seatbelt somehow fastened around her waist and her little feet bare and exposed to the freezing cold. I tried to jump in with her, as I always had in the past, but was forced to enter from the side door and sit in the seat directly behind the gurney. I couldn't even see her and was going out of my mind yelling at the idiotic EMT "Is it over? Are you sure it's over?!?!" They forced me to sit in that seat for the entire ride to the hospital and all I could see was her little hand dangling down. EMT #2, apparently the trainee, started to ask me background information about Kasia and I refused to even acknowledge his presence. EMT #1 then stepped in and asked "what my problem was". I told him this: "You sat me back here in a place where I can't even see my daughter. I don't know if she's okay, I can't see her face, I don't even know if she's stopped seizing. I've always sat on the gurney with her, holding her in my arms - I've never been forced to sit back here like I'm not even a part of this. And I'm really pissed off right now. I'm pissed off at YOU especially because I don't think you have a clue about what the hell you're doing. She's my daughter and you're treating me like I don't matter. So stop asking me questions because I'm done with you. I'll talk to the people at the hospital."

The nurse in the ER later told me that there was no way he could have known if the seizure was truly over - based on Kasia's condition when she arrived, the nurses couldn't even tell.

So, she's been on Keppra ever since, though the days when she was having seizures on a regular basis has obviously left its mark on me. Through all of this I've come to realize something - I am the parent, I know best, and I have every right to demand that my child is taken care of properly. I'm not afraid anymore to speak my mind. None of us should be.

A few days ago we increased her dosage of Keppra and have our fingers crossed that it's all that's needed to remedy the situation. Apparently she's still on a very low dose, so if needed, there's still lots of room to increase it some more. So far, it seems to be working. Only one big jump last night as she was falling off to sleep and no twitchy eyes or limbs.

I hope it lasts.

10 Things That Made Me Smile Today

10. My lilies!

9. Dino made dinner. Had he done the dishes as well, he would've made it higher up on the list.

8. Our hydrangea tree - though lopsided, is starting to bloom!

7. Got my wedding rings cleaned and they're sparkling like brand new!

6. I realized it's Friday tomorrow already!

5. Seeing this.....

4. Kasia's bedroom makeover has begun! The room is taped, patched and ready for paint tomorrow!

3. It's Dairy Queen Miracle Treat Day! All proceeds from every Blizzard go to the Hospital for Sick Children. (As if I need an excuse to eat ice cream....) Did you know they have a Pumpkin Pie Blizzard???

2. Today my mom gave Kasia a blanket that she crocheted years ago and stored away. As luck would have it, it matches Kasia's new bedroom colour scheme perfectly and will make an excellent blanket for a cozy afternoon nap.

1. The number one thing that made me smile:

Kasia is FINALLY 20 pounds!!!

When I saw those numbers on the scale today at her doctor's appointment, I almost cried. Instead we shouted hooray and did a little dance. (Why doesn't anyone cheer when I gain weight?) The picture is of her and my mom.

Picking Paint & The Unspeakable Apple Incident

We recently moved Kasia out of her nursery into her big girl bedroom. We changed the old nursery into our office and it looks great! Sadly, the same cannot be said for her big girl bedroom which (because of a very long delay in her new furniture arriving) now only consists of a double mattress in the corner of the room, a plastic bin as a makeshift dresser, a small table & chair set, and a play kitchen - all surrounded by horribly drab taupe coloured paint.

I've finally managed to convince Dino to paint citing that I cannot have my daughter sleeping in a room the colour of burlap. Convincing him to paint is about as easy as parting the red sea a) because he really hates painting and b) because of what's now known as "the unspeakable apple incident". (Why then don't I just do it myself? I once cut a ceiling in with an eyeshadow brush. Enough said?)

Before Kasia was born - we didn't know if she was going to be a girl or a boy - so we decided to go with a gender neutral nursery. For me, a good idea of a neutral colour was green. But it was not just any green I chose. It was apple green. I spent hours and days and weeks deciding on just the right colour, went out and bought the paint and anxiously awaited for Dino to paint the room. Well, when I got home from work one day he was sitting outside covered in some sort of glowing material - it looked like a glow stick had exploded all over him. He gruffly told me to go check out the nursery.

I walked into the room and was instantly blinded.

The lovely soft apple green I thought I had chosen, when painted on four walls of a small room had become a horrific shade of glowing nuclear waste green (picture Homer at the beginning of the Simpsons). Not only was it too bright for the human eye to safely look at, but the room seemed to hum as well! It was more than a little disturbing and Dino was furious with me.

Needless to say, no one in their right mind would put a baby into a room like that and poor Dino ended up repainting - but not before he made me suffer for 2 or 3 days by telling me that under no circumstances would he repaint. When my whining and crying finally got too much to bear and he ultimately gave in, I sheepishly chose a very non-threatening colour of vanilla and made myself scarce!

Three long years later and I'm finally allowed to pick paint colours again! The ban has been lifted! So for the last week and a half I've had 7 paint chips tacked to the wall and am determined to not screw it up this time. After agonizing over Forget Me Not, Salty Tear, Bird Egg Blue, Vintage Map, etc, etc. I've decided on China Blue. Final answer. I've bought the paint and now we wait. I wonder what will the outcome be???

.....as long as it's healthy

I've just got to rant about this:

I was talking to a woman today about her daughter who is currently expecting her second baby. When I asked if she was going to find out the baby's sex, she replied:

"Oh no, it doesn't matter if it's a boy or a girl.....as long as it's healthy."

I snapped. I know we've all heard that saying, and most of us have probably used it ourselves, but I HATE IT!!!!

As I explained to this poor, unsuspecting woman, saying that to ME was like saying to a mother of a green-eyed child, "Oh no, it doesn't matter if it's a boy or a girl....as long as it doesn't have green eyes."

Unfortunately, I explained, some of us don't get healthy babies, but we still love them. We still cherish them and we still wouldn't trade them for anything. Sure, nobody actually wants to have a baby that's not perfectly healthy, but if you do, you do. You can say "as long as" as many times as you want, and it won't make it any different.

I find that little quip that seems to roll off of everyone's tongue to be SO offensive. Sometimes I find myself wondering if I'm not just a bit too oversensitive these days - it is entirely possible.

And like today, I often find myself trying to educate the masses one by one on what not to say. I actually had to tell someone recently: "Don't ever use the "r" word around me again. If you're mad and need to call someone a bad name, I'll be happy to provide you with a lengthy list of swear words I've just now called you in my own head."

Sometimes unleashing on the unsuspecting can turn around even the worst day!

Goodbye Highchair

It's a slow news day folks, so what better time to celebrate our newest achievement - saying goodbye to our most hated of remaining baby items: the highchair. (Even though, she does look darn cute in that picture...)

That big, space wasting monstrosity that I wish someone had told me I would never really need. With it's wheels that never really locked and never really rolled properly either; and it's tray that Kasia learned how to snap off and toss aside - the more food on it, the better; to it's plush and puffy padding that trapped cheerios, crumbs, bits of cheese and anything else unlucky enough to get sucked into it's dark abyss. Ah Graco Contempo.....my nemesis.....my foe.....the bane of my existance. I will not miss you.

Enter the new kid. The booster. Small, portable, totally hard surfaced and completely hygenic! The best part....she loves it! Grins like the Cheshire cat every time we put her in it.

Way to go Kashi...you're a big kid now!

Different

As I "get out there" more and more these days with Kasia, it becomes exceedingly obvious how much easier it is to be around people that are like us. Those of us who's kids have "something more". "Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close." - Lori Borgman (I'll post her entire article at some point)

Yesterday we spent the day with some family we haven't seen in quite a while. Unfortunately for them, none of their kids or grandkids have "something more". I had actually enjoyed a fairly nice day and during the last part of dinner I was telling a story of how on a recent shopping trip I had noticed a young boy coyly peeking out from behind the aisles at Kasia in her stroller. Later on, and behind us at the register, he tapped his mom on the leg and drew her attention to Kasia. "Oh!, she said, "What a pretty little girl! Did you say hi?" He immediately clung to her leg like a baby monkey and played shy.

At this point in the story I commented on how I find that most boys of that age group (5-7 years old) are very shy and even scared of Kasia because she's so........

And that's when someone jumped in and said, "so different".

I'm sure that it would've hurt less had someone just plunged a steak knife right into my heart, because what I was actually going to say was "so small". I find the boys are scared of her because she's so small and so fearless...she'll just walk right up to them and get in their faces. Different wasn't really a word that belonged in that story at all.

But instead of making a big scene and getting all beligerant and crazy, I deflated, quickly finished eating and made a hasty exit. Luckily Kasia was miserably cranky and gave me a good excuse to hit the door.

Having thought about it last night, I know that the comment wasn't meant to be hurtful, but at the same time it made it clear to me that that is how they see Kasia. Different.

I see my daughter as a miracle - sent to me on a mission to make me a better human being. Most days I feel like I don't deserve a child as wonderful as she is, but that part of her job is to make me worthy of being her mother. So I guess she is different than other kids - too bad for those other parents who will never know what they're missing.

A Tale of Two Sippies

Today Kasia had a visit from her new buddy Bennett. They had a great time playing together and Kasia was more than happy to share all of her toys. However, it would seem that Kasia subscribes to the "what's mine is yours and what's yours is mine" philosophy and forced her beliefs on Bennett when it came to his sippy cup.


"Oh Bennett...we're friends you & I.....you wouldn't mind if I took just a small sip would you??"







"Mwah ha ha!!! Success is mine!! Water always tastes better from someone else's cup!"








But in the end, Bennett realized that two could play at that game....