Finally, an Update!

Wow, here we are nearing the end of January and the blog has really suffered! The hectic holidays finally gave way to the slower pace of January and then, unfortunately, that's when everything went wrong. By the second week of January I had the flu and strep throat and had used up every last sick day from work. Kasia stayed with my parents for 3 days to ensure she stayed healthy while I recovered. We thought she was fine until a just-in-case throat swab at her doctor's appointment revealed she had strep throat as well. Looking back, I guess it explained why she wasn't eating, wasn't sleeping well and was having an increase in seizure-y type stuff when she went to sleep! Duh..... you'd think I would understand this stuff by now.....

Anyways, she recovered and proved to be a much tougher little soldier than her mother. After a day or two of antibiotics she was eating, sleeping and back to normal. Which cannot be said for me. One eye infection, two kinds of antibiotics, a loss of 5 pounds (not complaining) and one bizarre case of antibiotic related arthritis later, and I'm still not back to normal. I think they've started a pool at work on what I'll be afflicted with next.

Other than all that, everything is going pretty well. Kasia is continuing to improve in so many ways. She's starting to run, to pretend play, sit on her potty and repeat every word she hears. We're even hearing more and more words put together these days, which is what we've really been working hard at. She has become such a little girl and is so much fun to be around - I can always rely on her goofy grin and crazy antics to brighten my day. Honestly, the child cannot put clothes on without modelling them in some form or fashion. Exhibit A:

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!