The Adventures of Kennedy

EMNS Middle School Sign Language Club Holiday Concert Performance

2011-12-22T00:36:00.003-04:00

Kennedy with her Sign Language Club, performing "Mary's Boy Child"...you'll notice she's the one to give a big bow, wave to the crowd and make a 'heart hand' to them. No shyness here...;)

For those of you not on facebook, here is the link to the youtube video:
http://youtu.be/6xlp2NO52R0

Enjoy!

Empty Stocking Fund 2011

2011-11-28T20:18:00.005-04:00

Here is a video of Kennedy singing with her choir on TV this past weekend - they sang, "Somewhere in My Memory" (from Home Alone). This telethon has run each year for the past 75 years in Saint John to raise money to help families give their kids a xmas when they might otherwise not have one. I was also on the telethon with choirs when I was her age - glad she is continuing the tradition. This is a video her dad took while we were there live. She's the first one on the bottom row on the right... Enjoy!
PS - it does zoom in after a bit so you can actually see her better!

Kennedy Channeling Sally Brown

2011-11-17T06:50:00.005-04:00

Thought I would share this video from last night's theatre class - the parents were invited back to see the little thespians perform monologues at the last class of 2011. I also thought I better try for at least one more post before the end of 2011 - it's been sparse this year! Not that we haven't been doing too much, I have just been doing too much, that's the problem.

Kennedy's monologue is a classic piece from The Great Pumpkin, where Sally rakes Linus over the coals for making her miss out on Halloween. Here is the text so you can follow along if your audio isn't the best:
Sally Brown: I was robbed! I spent the whole night waiting for the Great Pumpkin when I could have been out for tricks or treats! Halloween is over and I missed it! You blockhead! You kept me up all night waiting for the Great Pumpkin and all that came was a beagle! I didn't get a chance to go out for tricks or treats! And it was all your fault! I'll sue! What a fool I was. And could have had candy apples and gum! And cookies and money and all sorts of things! But no, I had to listen to you! You blockhead. What a fool I was. Trick or treats come only once a year. And I miss it by sitting in a pumpkin patch with a blockhead. You owe me restitution!

Kennedy is an Auntie again!

2011-05-15T09:29:00.004-03:00

Last Saturday at 2:59am, we welcomed little Seth into the world. Auntie Kennedy was very excited to see him on Friday and hold him for the first time.

Winter Carnival 2011

2011-03-07T19:48:00.005-04:00

To update my last post, Kennedy's appointment was canceled at cardiology because of her bad cold/fever. We will see them again in June hopefully. I will be sure to update everyone after that appointment is over.

Last week was Kennedy's Winter Carnival at her school and on Friday, which was also 80s Day, there was a Gong Show in the afternoon. Kennedy choreographed and practiced her heart out on this dance number - she didn't get a single gong! She brought down the house. Now to continue practicing for cheer competitions, her spring theater performance and of course, CHARGE Conference Idol 2011!

February is for Hearts...

2011-02-22T15:16:00.007-04:00

Well it's that time of year...or I guess I should now say, every-other-year. It's time for Kennedy's cardiology check-up tomorrow afternoon. She's done so well over the years that she has been reduced to being seen only once every other year, which is a great thing. She has been home from school today with a fever and cough so I'm hoping she is okay to make it and we aren't deferred, especially since she only sees them every other year now.

The routine begins: a letter arrives from the IWK Health Centre with instructions: "Kennedy will be seen on February 23rd, 2011 for a cardiology appointment. She will also have an ECHO before the appointment. Please arrange for an ECG at least two weeks before the appointment." She had her ECG a few weeks ago and tomorrow will be the ECHO and the general cardiology appointment with the IWK travelling clinic. I'm not anticipating anything major but history has taught me that I need to be prepared...

When she had her first open-heart surgery at 9 days old, we were in the shell-shocked stage still. Too stupefied to truly realize what was happening. I thought, though, that when that was over. One thing to check off the CHARGE syndrome list: we were done with heart issues except for regular check-ups. Sometime in late 2003 when she was five, however, during one of those regularly scheduled check-ups, I got ~~hit by a Mack truck~~ blindsided by the clinic doc who nonchalantly told me, "Yeah, so we're looking at another surgery in a few months for..." Needless to say, I don't remember much of the rest of that appointment. In fact, I remember driving to a nearby park and, after arriving, I couldn't remember driving there at all. My mind was just a numb blur of astonishment. I just kept thinking, "Another heart surgery? What? We were done with that part four years ago! That part was before choanal atresia surgeries, before hearing aids, glasses and eye patches, before gastric feeding tubes and Nissen fundoplications. This was just supposed to be an in/out/forget-about appointment." My mind was whirling but I did manage to get myself together enough to call a friend who lived near the park and carefully drive us over there so I could continue the murky journey back to coherence. Nobody had ever told us there might be a need for a second surgery so it really did throw my naïve brain for a loop.

The second heart surgery was definitely harder for us because Kennedy was so much more 'knowing' at that point. She fought tooth and nail going into the O.R. and even whacked me in the face because she was so upset. But, in true Kennedy fashion, she came through the surgery just like she always does and we got through it too - after a month away in Toronto for everything that needed to be done (cardiac cath, two-week wait, and surgery.) After that surgery, the surgeon did tell us there might be a possibility of her needing another surgery at some point in the future.

At her last checkup, I spoke to the IWK cardiologist about the possibility of another heart surgery and he told me that things looked really good and that it wasn't definitive that she would need one, which allayed my concerns somewhat. I had been operating under the assumption that it was just a matter of time. Nevertheless, each year, I wonder if I'll hear the news I don't want to hear, or if we will once again coast under the radar with a healthy check-up and go on with the status quo for another two years until the next appointment letter arrives. I don't dwell on the what-ifs because it just isn't productive in the day-to-day hustle and bustle of our lives but this particular every-other-year appointment does make me stop and consider the possibility of another what-if.

So, with all that being said, do me a favour and please keep a very special & precious heart in your thoughts tomorrow and hope we get to coast for another couple of years.

Ponto!

2011-02-13T12:23:00.004-04:00

Since Kennedy was six, she has had a BAHA Divino hearing aid implant. She has done fairly well with it, however, it has required many repairs to the tune of almost $600 each time. Seeing as it is getting to be almost seven years old, we began looking into replacing it last year. I was informed by Cochlear Canada that they will no longer be making the Divino and it will be hard to get parts for, etc. in the near future so it became a little more important for us to find something sooner rather than later.

So, we learned about their new BAHA, which was originally called the BP100, then the Baha 3 (the names are still interspersed at the website so I'm not really sure what it's supposed to be officially called now). We were happy to learn it would be programmable, instead of just boosting everything straight across, we would be able to customize it to her individualized hearing loss. There were also other improvements, such as GORTEX moisture protection, for example. We secured a BP 100 loaner for Kennedy to try last year and, unfortunately, we did not like it at all. Both the audiologist and myself had trouble getting it turned on - not a good sign when both an audiologist and a teacher for students who are deaf/hard of hearing find the turning on of a hearing instrument to be bizarre and inconsistent. Unlike the Divino, the BP100/Baha3 also did not have a volume dial, so Kennedy was unable to adjust her own volume, which she does quite frequently, depending on the situation. She did not hear better with the BP 100 or the Baha 3 (we tried both of these) but Cochear reports on their website that in their study, "patients showed better hearing in noise, using a Baha 3. The average improvement was equivalent to about 25% better performance than with their Divino listening with both ears." Another strike against the new BP100/Baha 3 was that the configuration of the three-pin electrical input designed for connecting external equipment was changed on the bottom of the BP100/Baha 3 to "Europin" design, which was different than the Divino. This meant that the accessory connector we paid more than $300 for with her Divino and that she uses daily, would also have to be replaced. Also, her receivers for her FM at school would have to be replaced. Difficulty with working the buttons to turn it on/off and operating the volume control meant less independence for Kennedy and more frustration for us; this coupled with the fact that we would have to replace other needed equipment led to the decision to hold off because we had heard that in November of 2010, there would be a new BAHA product available in Canada through Oticon.

In late December, we got a loaner Oticon Ponto and Kennedy has been doing great with it. We find she is hearing very well with it and her teacher for students who are deaf/hard of hearing reports that she notices Kennedy is not asking her to repeat herself at all since she got the Ponto. We have tweaked the settings a couple of times with her audiologist to get it just right. The audio connectors are the same as from the Divino, so she has been able to try it out with the computer/iPod as well and likes it. The number one reason we have been thrilled with the Ponto, though, is the level of independence Kennedy has been able to achieve with it. For the first time since she was six years old, Kennedy can put her own BAHA on herself! The design of how the Ponto fits onto the abutment is different than the Divino. Whereas you had to get a small rim into the inside of the abutment with the Divino, the part that goes onto the abutment on the Ponto is bigger, to fit 'around' the abutment. This was huge in terms of her independence. Not only could she put it on herself, all you have to do to turn the Ponto on is put the battery in and close the battery door! No pushing and holding buttons and waiting for beeps multiple times, just put the battery in and it's on. She is also able to operate the volume control very easily. She can put the accessory connector on and off herself so when she wakes up early and wants to listen to Justin Bieber on the computer or iPod, she can get the implant on, attach the connector and adjust her own volume. YAHOO! One last bonus in my opinion for the Ponto was its design. It's not square/boxy, but a nice, teardrop design. While it doesn't have the same colour options available that the Baha 3 does, the chroma beige colour fits in really nicely with K's blonde hair and I do like the shape of it quite a bit better.

So for us, the Ponto is the way we're going to go. We are looking into funding options at the moment so we can order one. I know a lot of people will do well with the new Baha 3, but it really was just not for us. When you're 13, you want optimum independence, so that's why we are going with the Ponto. It's nice to have a choice now - with behind the ear aids, there have always been multiple options, but with BAHA, there has been only one for a long time. Thank you Oticon! :)

A Well-Deserved Snow Day

2011-01-27T09:06:00.006-04:00

How fortuitous to wake up this morning, the morning of Kennedy’s 13th birthday, to learn it would be a snow day. This meant both she and I would be staying home together today. I think it is a well-deserved snow day and only fitting, given the events of her original ‘birth’ day – January 27, 1998.

We were living in Pennfield at the time. It was just a few short weeks after the horrific ice storm that crippled much of Ontario, Quebec and the Atlantic provinces. It was said that the ice storm of 1998 “directly affected more people than any other previous weather event in Canadian history.” Like that ice storm, another January event would forever profoundly change the course of our lives.

Knowing how quickly I had delivered my second child, Kyle (about 50 minutes start to finish), and knowing we lived about 45 minutes from the hospital, we had planned to come up to Saint John to stay with Graeme’s grandmother within a week of my due date. Kennedy, however, had other plans. She decided to make her entrance thirteen days early.

Graeme and I had settled in to bed on the night of the 26th, where we both slept soundly until about 4:15am, when I awoke with the need to use the washroom. Seeing the tell-tale pink when I was finished, I summoned Graeme with a, “You need to get up NOW!”. We prepared ourselves quickly and made our way, excitedly and apprehensively, to the car.

Believe it or not, we both remained as calm as the still dark night we were driving through on the way up to the city, despite the dwindling amount of minutes between my contractions. We made it to the hospital and my doctor was called. We were pleased he was able to make it before she was born. I believe his familiar and calm presence was one of the things that helped us through what was to come.

The labour was going very well. I was very calm, concentrating on my breathing with a musical, back and forth, conductor-like hand movement indicating the commencement and conclusion of each contraction. Graeme held my hand and comforted me throughout each one. The nurse remarked that he and I should give lessons. We all had a laugh about that. One oddity occurred that neither Graeme nor I thought much of but, I am sure, alerted knowing hospital staff that something may be not quite right. When my water broke, it kept coming. And coming. And coming. It was like Niagara Falls compared to what I’d experienced with my other two babies. (it turns out this condition, polyhydraminos, aka “lots ‘o’ water”, can be an indication that there are swallowing issues that have been present in utero ).

6:59am. The moment arrived. That moment that is simultaneously terrifying and exciting. It’s like the feeling you get as you inch up to the top of that first incline on a rollercoaster and prepare yourself for the crazy ride that will ensue once you’ve reached that apex. There’s no turning back now. And so, with very few pushes, our beautiful baby girl made her grand entrance into the arms of my family doctor. We held our breath and waited. Nothing. The only sounds in that small contrived-to-look-homey room were the scrambling noises of the nurse and my doctor as they whisked her over to a little table and began to work on her. To their credit, they were incredibly calm and reassuring, given the fact that the baby in front of them was cyanotic, her skin getting darker and darker before their eyes. “We just need to clear her nose out.” Then, “We’re going to take her down the hall to get her nose cleaned out”. That was the last thing I remembered hearing.

A half hour or so later, Graeme helped me up off the bed so I could get cleaned up. I was still laying there in the same position I’d been in since she was born. I was dressed and sitting up on the bed. We called a few people to give them the wonderful news, “It’s a girl!” “Yes, everything is fine, they are just cleaning her nose out. There was a lot of vernix. Yeah, you know, that white, thick gunk that’s all over babies when they’re born.” As the minutes passed, though, we looked at each other, still cautiously optimistic, still blissfully ignorant, but wondering what was really going on and when they’d bring her back to us.

We eventually were taken down to a room on the floor, out of the Labour and Delivery Unit. The minutes seemed to take forever as we waited for word, all the while listening to the ebb and flow of the busy floor: nurses bringing babies from the nursery to parents, babies crying, and parents caring for them.

We finally received news sometime around noon, or maybe it was a bit after that. The day from that point on becomes a little blurry for me to recollect. It seems their attempts to pass a catheter up her nostrils to clean out her nose were futile. She had a condition called ‘bilateral choanal atresia’. I remember spending much of the afternoon worrying and crying. Crying because I didn’t know what the future would hold for my beautiful daughter, crying because there was something wrong that I didn’t quite understand, crying because I’d given birth 6 or 7 hours ago and still hadn’t seen her and crying because I couldn’t even pronounce the name of the darn condition the doctor had told us.

Late in the afternoon, we finally got to go down to the neonatal intensive care unit to see her for the first time. There she was. A big, 7lb 14 oz baby, looking so huge in the little incubator next to all the preemies around her for whom the incubators were designed. She had a large black contraption in her mouth to keep it open so she could breathe from her mouth and was hooked up to what seemed like a zillion tubes and electrodes. Yet, despite all the hospital paraphernalia, she was our beautiful baby girl. I knew, in that moment when we first laid eyes on her, that our lives would be forever changed but I also knew that we would love her more than any words could ever express. We would go to the ends of Earth and back for her. No matter what was to come, we would get through it. And we did.

Fast forward to today: it is January 27th, 2011 and we have reached yet another amazing milestone. Kennedy is a teenager. She has survived 20 surgeries, hundreds of appointments and tests, hours and hours and hours of therapy and remains one of the happiest people I have met in my entire life. She is a cheerleader. She is an actor. She sings and dances. She gives speeches. She runs and jumps. She loves movies. She loves games. She loves the Wii. She loves Facebook and chatting with friends on the computer. She loves Justin Bieber and Glee. She loves her cell phone and her iPod. She has done so much more than we could have ever possibly dreamed on that very first day. She has an exuberance for life and energy that would lift the spirits of even the most cantankerous curmudgeon.

And so here we are. It is a snow day. I am a teacher and Kennedy is a student. We will be together all day today, which I feel is most deserving, considering the amount of time we spent apart on her very first day.

It is truly a gift to be her parents. She makes us happy every day.

We love you, Kennedy.
Happy 13th Birthday.

The Holiday Season

2010-12-26T12:29:00.005-04:00

To everyone reading this blog, no matter what you celebrate, I hope it was healthy, restful, relaxing and joyful. We had everyone here except for Taylor, who was with her mom in Nova Scotia but is thankfully coming to Moncton later this week so we will see her next weekend.

In other news, I am due to fly out tomorrow morning to Orlando for some meetings but from the look of the impending Nor'easter heading this way and having already received word from Air Canada to expect delays and cancellations, I'm not sure what will happen tomorrow. I'm only scheduled to be there until Thursday morning so a 1-2 delay will render the trip useless. I'm pretty sure they don't refund for situations like this either. On the bright side, my sister and her hubby and my niece Kendra are traveling home right now and should be here before the big bomb hits! Please be safe if you are traveling today or tomorrow - it's better to stay home and miss something and be safe!

The best gift of all was having all three of my babies under the same roof and the special times spent together to celebrate family. That's what the holidays are all about to me.
My babies & I on Dec. 24th

Brother Scott, Kyle, nephew Stephen, Ryan and Dad posing for a festive photo on Dec. 24th.

Kyle and I on Dec. 25th at mom's house for dinner

Can't Believe 2010 Is Almost Done!

2010-12-18T10:18:00.005-04:00

I cannot believe that 2010 is done in 2 weeks. It's been quite a year for our family with me (mom) having a huge tumour in my stomach removed along with a full hysterectomy in August (all benign thank goodness), working full time & doing university in the fall until Dec. 3, when I fell and broke my leg, thus thrusting us into the holiday season with mom basically immobile. Dad also has hurt his shoulder and back this year. The back healed up quite nicely but the shoulder is going to take more work.

Nevertheless, we shall prevail as we always do! Despite the icky things that have happened, it's still been a good year. Here are some highlights:
Kennedy
- Kennedy passed her Red Cross certification for babysitting in February
- She performed in the Interaction Children's Theatre Production of "Saint John History Mystery"
- She ended the year on a great note from Grade 6 in June winning an award at school for her positive attitude
- She participated in Cheerleading for the first time and did great at the competitions in the spring
- Began grade 7 in the fall and had an amazing first home report: 5 A+, 2 A, and 1 B - she tries so hard and we are so proud of her!
- Despite mom having to miss it because of injury, Kennedy enjoyed a fabulous time at a Justin Bieber concert in early December. (Dad wins "Dad of the Year" for taking her in amongst all those screaming girls!)
- After many years with the BAHA Divino, we are testing a new BAHA for Kennedy called the Ponto, made by Oticon. We are THRILLED to report that she can independently put this one on herself - really one of the LAST things left that she could not do independently. This was SO HUGE for her. We will probably be ordering this for her in the new year.

Taylor
- Taylor (our sweet granddaughter) turned two and had several celebrations in her honour.
- She is talking so well and just progressing along wonderfully.
- We love her immensely and although she has moved now with her mom Angela to Cape Breton, NS, she is home to Moncton, NB often so we can see her.
- She came to visit us numerous times this year at our home and at the trailer.
- We went down in October to visit her on Thanksgiving weekend (also her birthday). It's hard to believe she is two!

Ryan
- Ryan (big brother) landed a new job that he really enjoys at Loblaws.
- Still living in Moncton
- We've just recently learned that our second grandchild is on the way, thanks to Ryan and his girlfriend Felicia - and this time, it's a boy and he will be called Seth (a name I LOVE - yay!)

Kyle
- Kyle (big brother) landed a full time job at HMV that he enjoys.
- He and girlfriend Marie are doing well and quite serious after a year and a half.
- He and Marie are planning a trip to California...California, Ontario that is! This is Marie's hometown and they are going for a trip on the holiday break. Did you know there was a California in Ontario? I didn't, until I met Marie.

Graeme
- Graeme had a good year with the blueberries - a lot better this year than last year (which, in his words, was awful!)
- He has begun physiotherapy for what the physio has deemed a 'frozen' shoulder and after only a few sessions, he is showing progress so we are happy for that. It will take a lot more work to get it completely better, but at least he feels he is on the way (he hasn't been able to lift his left arm up past his chest since the spring).

Lisa
- Well it's been a year for surgery, injury and recovery as mentioned in the beginning but I've learned there's nothing I can do about it and I might as well try and enjoy the 'break' (pun sadly intended). I'm trying to get other work done for the CHARGE Syndrome Foundation and for university while off work and looking forward to getting back with my students in the new year.
- This year was also full of time 'away' as I had to go to Halifax for a month in July to begin my Master's degree (in Educational Psychology - Students who are Deaf or Hard of Hearing), then off to an undisclosed location immediately after that for a week to choose the site of the 2013 International CHARGE Syndrome Conference, and as of next week, I'm off to Orlando for an executive meeting at the 2011 site for the International CHARGE Syndrome Conference from the 27-30 of December. I'll be hopping along on crutches or in a wheelchair but will get it done!

I hope all of you who read the blog have a safe, healthy, and happy holiday season. Here is a little smattering of our 2010 in pictures...

October 2010

2010-10-24T06:20:00.004-03:00

Hope everyone is enjoying this lovely month of October. I've gone back to work now as of October 1st, along with my 2 grad school courses so of course, the blog is in its usual state of neglect. Kennedy is busy in grade 7 as cheerleading has begun. She is now at an overnight 'cheerathon' and I should be in bed; however, as luck would have it, I'm experiencing a bout of insomnia!

I wanted to share a few photos from our Thanksgiving weekend visit to see Taylor for her 2nd birthday. As you can see, Kennedy loves being an aunt. She read every one of Taylor's cards to her, it was very cute.

Kisses for Auntie!

Auntie reading Taylor her birthday cards

My two gorgeous girls...

Next Tuesday

2010-09-17T07:36:00.002-03:00

What are YOU doing next Tuesday night (September 21) at 9pm Atlantic?
I can tell you what we'll be doing:

Season Two begins - yay!
We haven't got Dad on board with the whole Glee addiction yet but maybe this season!

New School Year

2010-09-09T21:55:00.003-03:00

It's grade seven.
Grade SEVEN.
How did THAT happen?
She was just learning to walk yesterday, wasn't she?

Lots of changes this year so far - big steps (more for her father and I, I think, than Kennedy) - she is going on the regular school bus this year and going in the locker room to change for P.E. on her own to name a couple. The phase of wanting to be cool (which automatically makes her dad and I decidedly UNCOOL) has definitely blossomed over the summer and a little bit of that 'almost teen' attitude has also emerged. Most people would say that these things were things they weren't looking forward to; however, to me, it's wonderful. It's development. It's progress. It's awareness of social cues that happen at this age. So, I will take the eye-rolling, the "Mom, don't, my friends are looking", the emotions and everything else that comes along with adolescence. Why? Because when you start here:

You tend to appreciate every single development that occurs. You take nothing for granted. Not even a breath.

Kennedy - first day of grade seven, September 7th, 2010.

Life...

2010-08-16T08:04:00.013-03:00

Just catching up on life and popped over to the neglected blog to see my background has disappeared. I've installed this new one for now but we'll see how the readability is; I may have to change it.

Lots going on with us - I was away all of July in Halifax for university doing my Master's degree. Kennedy was away at Deaf camp in Halifax for one week of that; she also spent a week having fun with my sister in Antigonish, NS. My granddaughter Taylor is doing well, although they have now moved to Nova Scotia and I fear I'm not going to see her as much :(

Kennedy Update:
Kennedy has finished grade six since I last wrote - had a marvellous year with a school team who truly seems to 'get it' (can you hear the hallelujah chorus playing in the background???) She also performed at the Imperial Theatre with the InterAction Children's Theatre in "Saint John History Mystery". She played Mrs. Chubbs, a woman who was very angry at her husband for his poorly-designed building (in her opinion). It was a hoot to see her scream and yell at this poor 'husband' in their act. In June, she received a school spirit 'celebrate' award because of her cheerful attitude and ability to make everyone smile. She also won a similar award from her classroom teacher. This summer, when she wasn't off at Deaf Camp or at her Aunt's house, she spent a lot of time at our summer place on beautiful Belleisle Bay, either at Nana & Papa's trailer or with me, at our trailer when I would come home for the weekends. She is looking forward to seventh grade, trying out for the cheer team again and going back to Theatre classes of course. Most of all, though, she is excited to see JUSTIN BIEBER - we got tickets for a show in New Hampshire on Sept. 1st. She is over the moon and counting down the days faithfully.

Mom Update:
I'm going to have surgery on Thursday, Aug. 19th so I will be even more defunct at updating the blog. Unfortunately, August has been mostly me preparing for it, making sure Kennedy is ready for school, the house is all cleaned, etc. as I am not allowed to do anything for six weeks post-op. That should be fun - NOT!

I'm going to post some pictures of things that have happened since MAY - my last blog update...enjoy! You can click on any of the pictures to enlarge them!

Got the tickets - going to see Justin Bieber - Sept. 1st!!!

Kennedy - Cheer Pics 2010

Kennedy - Cheer 2010

Cheer Collage 2010

May 2010 - Kennedy before her performance at the Imperial Theatre

Visiting with one of her BFFs - MacKenzie, at an appointment in Halifax

June 2010 - Receiving her Celebrate award from her teacher, Mr. Graham

August 2010 - Hanging out with some cousins from Ontario at a Family Reunion

August 2010 - Heading out to a friend's birthday party

Bad Blogger

2010-05-08T21:33:00.006-03:00

Hey gang,
I guess with all the updating, etc. that happens so quickly on Facebook, I've been neglectful here on the blog. Kennedy is doing GREAT and so busy (thus the lack of time for bloggage). I guess that is a good thing, right?

She is going to be in the provincial competitions tomorrow for middle school cheerleading and is very excited about it. It's been her first year for cheer and she has really enjoyed it. There have been many practices and four big competitions. It's been really great for her and I must say, I have enjoyed going to watch the competitions. I have to say I am REALLY glad she isn't one of the "flyers" that goes up in the air, that would make me nauseous if I had to watch one of my kids up in the air like that.

In addition, she's getting ready for her big InterAction Children's Theatre show next week, called, "Saint John History Mystery" - which is timely seeing that our city is going to be celebrating its 225th birthday the week after with lots of events going on. She will also be participating in a huge group dance/singing at Harbour Station on May 18th as part of the Saint John 225 celebrations. Needless to say, the month of May belongs to Kennedy and her schedule. I couldn't be happier. Or more tired. :)

Here's a shot of Ms. K, along with the rest of her team, the Millidgeville North Stars! (she is fourth from left and the girl just before her is the same age as Kennedy - talk about height disparity!!) You can click on the picture to enlarge it.

Grade Six Speech

2010-02-17T18:17:00.002-04:00

Hi everyone it's Kennedy!! :D This is the video of me doing my speech for Grade six and its about IACT and I hope you all enjoy this video!!! :)

Lots of Love,
Kennedy Weir
xoxoxoxoxo

Things are going well...

2010-01-16T23:53:00.005-04:00

Just a shout out to you blog-readers to give you a quick update on life. The reason I haven't been keeping up (even worse than usual) is that I began a new full-time job in December as an itinerant teacher for students who are deaf or hard of hearing. It's busy, challenging, time-consuming and I absolutely love it. This is what I'd wanted to do all along so it's a thrill to finally be doing it!

Kennedy continues to thrive at middle school - she is joining everything! She made the cheerleading team, is on the "Celebrate" team at her school (they plan various events, etc around the school), she continues to do sign language club with her interpreter once a week, is in the school choir, which just began in January, is taking a four-week babysitting course through the Red Cross, and is back to theatre classes at Interaction Children's Theatre Company after the holiday break. She also just mentioned the other day she put her hand up when they asked who was interested in going skiing at the school (yikes!). She also got funding for a new "netbook" computer, which will be a great help to her at school for taking notes, working on projects, reports, etc. It travels to and from school so she can continue on work she started at school in the evenings, etc. It is very cute, bright blue and already adorned with a "Justin Bieber" desktop. That would also be another BIG interest in her life right now - as she says, she's got "the Bieber fever"...

So, you see my friends, even if I were NOT working my butt off at my new job, I'd still have little time for updating the blog (or anything else) because my daughter has a much fuller, exciting life than her father and I do and we are the designated chauffeurs for our busy gal.

We also find time in amongst Kennedy's busy social calendar to get up to Moncton to see our sweet granddaughter Taylor (we actually made it there earlier today!), who is growing up so fast it's scary!

Hope life is treating you all well!

Kennedy Directing Her School Sign Language Club Signing Rudolph

2009-12-17T17:36:00.003-04:00

Today was the holiday show at Kennedy's school. Each Monday, she and her interpreter run a noon hour sign language club. They had been practicing the song, "Rudolph the Red-Nosed Reindeer" and performed it today. It's a great video but since Kennedy is directing, we mostly just see the back of her! They did a fabulous show and I'm so proud of all of them. Way to go!

Kennedy Presenting Charge Syndrome To Her Classmates...

2009-11-20T12:26:00.003-04:00

Many of you have seen this on Facebook or through the Charge yahoogroup but I know some of you follow the blog only so I'm reposting this video that Kennedy did on Charge syndrome for her classmates. Some of the terms were changed/simplified and some things didn't go too far in depth - it was more of an "intro" for her classmates to help them understand Charge. This was orignally set up for a sign language club that Kennedy & her interpreter are running at the school, to introduce why Kennedy uses sign. Another teacher of the other grade 6 requested her to do it for her class and finally her own teacher had her do it for her homeroom class.

Kennedy Presenting CHARGE Syndrome from rykykk on Vimeo.

Health Tests - October 2009

2009-10-26T15:59:00.006-03:00

This post is to celebrate Kennedy's continuing great achievements in middle school. Her tenacity, great attitude, and willingness to try hard at school is just a testament to what an amazing person she is. There is, however, another reason why I'm writing. It is because of so-called professionals who are ignorant about CHARGE syndrome giving out bad information to families who have young babies or children with a recent diagnosis.

Twice this week, there were messages on the CHARGE listserv about bad information. The most recent was that a hearing specialist told a mother of a 13 month old girl that most people with CHARGE never talk and that they don't progress cognitively beyond the infant stage. As the parent of a child with CHARGE, I was so offended; I can only imagine what individuals with CHARGE think about comments like this. Those of you who know me can imagine my response to this: I was outraged!!! I gave the mom a lengthy response but I'm just so offended when "professionals" give out information like this to parents when, in fact, they really haven't done a modicum of research on the topic. I asked this parent to ask the hearing specialist where she got that information; I'd love to see the reaction on that.

This just really underscores the need for more public awareness about and more accurate information out there about CHARGE syndrome so no parent has to hear ridiculous prognoses like this. In that vein, I will post these 2 tests that Kennedy has taken in Health on the male reproductive system and on puberty changes between males & females. The first shows how she had to learn to accurately identify all parts of the male reproductive system; the second is deciphering which puberty changes occur in both females and males. She had to read and do these independently. I challenge most men to accurately label their own reproductive system and Kennedy worked very hard to study and did great, scoring A+ on both. Secondly, I will leave a link to our 2nd Annual Charge It for CHARGE campaign, which helps support the CHARGE Syndrome Foundation and its mandate to help families, assist research, and provide (correct) information to professionals about CHARGE. If you would consider making a donation to our family donation page, it would be greatly appreciated.

*Note: You can click on either of these photos to enlarge them.

Male Reproductive System Test (she also knows what each part does; that test is next Friday):

Puberty Changes: Male & Female (read and identify which occur in both):

Click here for our 'Charge It for CHARGE' Team Donation Page - Thank you for your consideration of this worthy cause.

Happy Early Halloween!

2009-10-06T19:04:00.001-03:00

Jib Jab is the best...ha ha ha...
Enjoy!

Try JibJab Sendables® eCards today!

First Test of Middle School

2009-09-18T16:03:00.007-03:00

Ahhh...if only everything could be spelling. (you can click the picture to enlarge it if you can't see it well)

This kid can spell like nobody's business.

Maybe it's genetic?

(Me, with very large hair, in grade 12, as part of the St. Vincent's High School winning spelling bee team...yikes)

New School Year

2009-09-17T09:01:00.004-03:00

Well Ms. K is settled into her new school and doing fabulous. She loves being in middle school, going to the cafeteria to buy french fries, changing rooms for classes, is excited about upcoming first dance and esp. loves her new teacher, her first "boy" teacher.

Her team at school really wants to understand what's going on with K - they had me in to do a little CHARGE 101 presentation yesterday and had lots of good questions. As I told them, I'd offered to do this multiple times in the past and they were the first school to take me up on it, so that's a great start. All signs are pointing to positive so far. Of course there have been some kinks we've had to work out, but these are minor in the grander scheme of things and if these things are the biggest issues we need to deal with this year, then it's going to be a great year.

I just feel that because I was able to go in and do a proper session on CHARGE, its complexity and how that relates to Kennedy, complete with pictures and explanations, that they will 'get it' better than others who've worked with her before for a long time. When I say 'get it', it's not just in terms of her possible limitations but with the fact of how hard she does work to be where she's at and in terms of everything going on in her little body 'behind the scenes' that you don't see/think about because she does compensate so well.

I am really happy and hopeful that the open communication, questions, problem-solving, and overall quest for understanding & working together to facilitate K's success at school, continues.

Alice in Wonderland - Pics and Video

2009-08-24T05:24:00.005-03:00

I'm not sure how many of you readers of the blog are not also Facebook friends but just in case, I'm going to post the video here of "Alice in Wonderland", in which Kennedy played the Queen of Hearts (as well as part of 'the black hole' and the Jabberwocky gang in other scenes...but the Q. was her main part). It's about 44 minutes long; if you're looking for K's main scene specifically, skip to about the 25 minute mark. If you have time, though, to watch it all, it's pretty darn cute. (I know, I'm biased.)

If you are a Facebook friend, I apologize for the redundancy but I can't help how cute, wonderful and talented these kids are!!

Pictures I took at the show can be found here:
http://www.facebook.com/album.php?aid=149270&id=587985427&l=3778778a89

Alice in Wonderland - IACT August 22, 2009 from Lisa on Vimeo.

Theatre Festival This Weekend

2009-08-21T09:10:00.003-03:00

Well after three weeks of theatre camp, Kennedy's theatre company summer camp group is ready to perform its rendition of "Alice in Wonderland" - a Cirque de Soleil-inspired "whimsical" rendition, as one of Kennedy's camp leaders, Sarah Butler, put it on a radio interview the other day. I saw a sneak peak last night as the group performed a teaser show at the Public Library for the closing ceremonies of the Summer Reading Program and am very excited to see the whole thing tomorrow at 1pm at the big tent at Long Wharf. She is in several scenes doing a variety of parts but her main part is the Queen of Hearts and she has a fair little chunk of lines that she knows very well. I am so proud of her and she certainly is the Queen of MY heart for sure. The show is actually part of a bunch of activities which will take place over the next three days for the Children's Theatre Festival being held here in the city.

This theatre company, InterAction Children's Theatre Company (IACT), has just been the best thing for Kennedy. She absolutely loves it there and can't wait to go every single time to practice. I think it really does help build on her confidence and is just such a great way for her to express herself. Seeing her deliver her line emphatically last night at the preview show on bended knee, with arms spread out wide, "Come to my arms my beamish boy!" was one of the cutest things I've seen her do. I can't wait to see more when she does her Queen of Hearts scene tomorrow. I'll try to get some video so I can post it here.

She told me yesterday after seeing herself in the newspaper in a picture with the rest of the gang for the Alice show that it was the best day of her life. I think that pretty much sums up how much she loves it. She's done a year of Musical Theatre classes but now wants to take the Acting I class, which focuses more on the acting aspect. I couldn't be happier, it is money well spent - if you live in the Saint John area and have a child, I highly recommend you click the link above and check out this company - they all have so much fun (kids AND staff); the people who work there and the performances they get out of these kids are just phenomenal.

Kennedy's Performance

2009-07-29T00:19:00.002-03:00

For folks who aren't on Facebook, here is Kennedy singing at the first ever Conference Idol last Friday night (07/24/09). As I mentioned in the video description on Facebook, she only got 1/2 way through and folks started clapping thinking it was over but she was okay with it and it was still super cute.

9th International CHARGE Syndrome Conference

2009-07-28T08:44:00.003-03:00

We are back after an amazing conference in Bloomindale, IL. It'll take a couple of days to really process and digest all that went on at the conference: new friendships made, old friends reconnected, information learned, joyous events and people celebrated. It really was a great conference of firsts as Brownie Shott, our conference chairperson, pointed out in her address to the group: online registration, conference idol, professional day, and more. It was so exciting and really an honour to be a part of it, both in the planning & execution of it as well as to be there with my family, taking part in it all.

Today I'm uploading pictures and splicing video clips (and doing a gargantuan amount of laundry) but I will put my thoughts down a little more in depth very soon. For now, here are some of my photos I uploaded this morning:
http://www.facebook.com/album.php?aid=142098&id=587985427&l=d8fe284026...Enjoy!

I have some more pics, but am saving some for the CHARGE conference edition newsletter, especially of the awards presented, etc. If any of you have photos, stories, quotes about the conference, etc, you'd like to submit, please send them to me. The more the merrier! Click here for my email: Email Lisa.

July Update

2009-07-17T07:49:00.003-03:00

As usual, it's been a while since I've updated the blog. Here's what's been going on in our lives:

*In late June/early July, I spent two weeks at Perkins School for the Blind (Deafblind Proram) doing a teaching internship. It was amazing and I met a lot of super cool kids, a lot of whom had CHARGE. While I was there, Kennedy went with Nana & Papa to their trailer for two weeks. She had a lot of fun swimming, throwing rocks at the beach and, of course, shopping.

*We've been spending a lot of time doing stuff together since I got home because I missed her like MAD...watching movies (last night we watched Ghostbusters - too fun), shopping, and most of all preparing for the big CHARGE Syndrome Conference in Chicago next week. She is super-excited, especially about Conference Idol, taking place Friday night. She is going to sing "The Climb" by Miley Cyrus. She wanted highlights in her hair for the big performance so we did that this week and she also picked out a new dress & shoes to wear. I'm happy to report that Dad & big brother Kyle will also be coming and that Kyle has volunteered to work in childcare both days of the conference.

*Tonight, Kennedy & I, along with my good friend Jill, are heading down to Maine to our pal Courtney's trailer to have a girly camp-out this weekend. I know, kind of crazy right before conference but it'll be a lot of fun and I will still have Monday to get ready.

*After I arrived home from Perkins, Kennedy & I went to visit my beautiful granddaughter and Kennedy's sweet niece, Taylor. She is getting so big, four teeth now, standing and walking holding onto things, eating a bunch of different foods and just becoming a real big girl. I forgot my camera so was only able to grab a picture or two with my Blackberry. Here are the girls:

More to come with better pictures after conference. Hope your summer is going well and everyone is healthy. Please keep Cheyenne in your thoughts next week as she is having surgery.

Eyes/Corneas/Colobomas/TV

2009-06-14T08:48:00.011-03:00

Sorry about the length of time between posting, folks. Between me graduating from University and starting a full time music teaching job, getting Kyle ready to graduate high school and Kennedy to transition meetings for going to her new, humungous middle school, things have been busy. I'll post more about these events soon. I want to talk eyes today.

Since the last post, Kennedy had a visit to the IWK Children's hospital for ophthamology. They said she is doing fabulous, her corneas look wonderful (surprisingly, they said, with her facial palsy and one not closing all the way for all these years), they gave her a new prescription (minor changes) and took some WICKED pictures of her optic disc, showing her two colobomas (these are the areas in white in the pictures below where there is incomplete tissue development). I am going to post the picture here but also on her main web site as I think it really speaks to the resiliency and ability to compensate that our children display. To think there's that much missing and she manages to see and do as well as she should with not only the vision issues but everything else going on in her little body - well I think it's just unbelievable. Yeah, I know. I'm biased.
Here is a picture of those colobomas (you can click on it to enlarge as well)

During the time we were down there, we had an opportunity to have a visit with dear friends Jeanie & MacKenzie. As some of you know, Kennedy & MacKenzie have been friends since they were babies. MacKenzie was named as this year's Champion Child for the IWK Children's Hospital for the Children's Miracle Network Telethons that take place last week of May/first week of June. She has been quite the little celebrity, on TV, going on trips in Canada & the US, doing various interviews and attending other functions. We are so proud of her and happy to see CHARGE syndrome awareness increasing because of this amazing little girl.

So they had a visit at the hospital as MacKenzie had an appointment the same day, but they also had to go to the TV station for Mac to do an interview. Kennedy was SO excited, asking a million questions, etc. MacKenzie had done enough of this in the past little while that she was as cool as a cucumber. Kennedy was asking, "Do we say 'Action!'?" and telling everyone she was an actress. It was really cute. The director gave her a 'director's' chair to sit in and told her that she would get to say, "Action!" when it was time and he counted down to her. She was just tickled.

After the interview the host of Breakfast Television, Jayson Baxter, took us all around for a tour of the newsroom set for CTV Live at Five and the news at 6, and introduced us to a bunch of folks we see on TV every night. Kennedy thought it was great (so did I to be honest!). I just want to say that the folks at CTV were generous and kind, giving up their precious busy work time to do a little something special for the girls. As we were leaving, Jayson grabbed a camera operator outside and said, "Kennedy, we're going to get you on TV" and taped a short spot with her telling everyone her name, where she was from, and to watch the IWK telethon. It meant the world to her and she was so excited to see herself on TV the next morning.

Here are a couple of pictures from our visits with MacKenzie and from the TV station visit:

Kennedy and MacKenzie - at the IWK, the first place we ever met...

Kennedy & MacKenzie with Jayson Baxter from BT (super nice guy!):

Kennedy & MacKenzie with Steve Murphy, long-time host of the Evening News at 6 (and native Saint Johner):

Kennedy & MacKenzie with Liz Rigney, who works on CTV's Live at Five:

Surgery #20

2009-05-11T17:12:00.007-03:00

Well, after a couple of weeks' wait, we made our way to Toronto on the 3rd of May so Kennedy could undergo surgery May 4th early in the morning. We arrived around noon on the third and our good friend Amrit picked us up. We spent the afternoon at his house - talking & visiting while Kennedy played with his son, Aman. It was a really nice time. In the evening, our other good friends Phil & Margaret drove into the city to visit with us at the hotel. After a long day of travel and visiting with friends, we hit the hay early as we had to be at the hospital at 6am.

Around 8am, they took Kennedy into the O.R. - I accompanied her inside until she was 'out'. About 2 hours later, the doctor came out to tell us that things were done. It didn't go optimally because he was hoping to be able to fix the original abutment that got kicked in the schoolyard. Unfortunately, when he tried to straighten it out, the whole thing fell right out of her skull. He warned us that the gap that was left looked like, "the grand canyon". He said it was extremely rare for him to see something get hit that hard to be knocked out of someone's skull after having been there for three years. This was upsetting to us to imagine the trauma that her head took from that kick to dislodge it so completely. So, he ended up having to bring the spare screw up that was implanted in 2005, put a new abutment on it, make a skin graft to cover the big hole and insert a new back-up screw. It was quite a bit more involved than we'd hoped. The good thing is that Kennedy bounced back in her usual super-girl fashion.

She has a large foam pad and a healing cap on until Wednesday of this week but overall, she is in good spirits and able to hear somewhat with her softband hearing aid on until we can use the new abutment.

We actually took her the next day to the Ontario Science Center as we had the whole day before flying out at 8:20pm and she was feeling well enough. She had a great time. I have posted all the pictures on Facebook, but for those of you who don't have it, here are the public links to our Toronto albums:

Toronto Album 1
Toronto Album 2

Thank you to EVERYONE who kept us in their thoughts. It certainly was not the best outcome and it's upsetting it had to happen at all but at least she's doing okay and hopefully there will be no further complications from the added work that needed to be done to her head.

Schoolyard Accident - Take Two

2009-04-19T09:14:00.003-03:00

Well, it's spring so time for another installment of phone-call-from-school-because-Kennedy's-hurt-on-the-playground. Except, this time, it's much worse than last year's broken arm incident.

This past Wednesday morning about 11am, I had just picked my father up after his surgery at the hospital to take him home. We were on the way to his house when my cell rang - it was the school. Kennedy had an accident outside and her hearing aid got knocked off; they were still trying to locate it. I thought to myself, "Well they better find it, the darn thing costs thousands of dollars." They said she was fine but asked if I could come over. I asked Dad if he was up to it and he was, so we turned around and headed back to K's school.

When I got there, they reported they had found her aid, which had landed inside her coat. I was relieved for an instant, until I pulled up her hair that covered the area where her implant goes. The titanium screw that is affixed to her skull to hold her hearing aid implant on was driven back out of its normal place and dislodged halfway from her skull. It was a bloody mess. I had to sit down, not from the blood, but from the immediate sinking sensation that I knew she was going to have to have surgery to fix this. I'm just so glad she was in good spirits (thank goodness for high pain thresholds). She asked if she could put her BAHA back on and I signed/said, "No, we need to call the doctor first to see if it's okay." Then, the floodgates opened, "I DON'T WANT ANOTHER SURGERY MAMA!" she gasped in between sobs. My heart was breaking for her. I don't blame her a bit; after 19 surgeries, she deserves the right to be upset at the prospect of another.

We did eventually get her calmed down, got home, cleaned the area well and called the surgeon in Toronto who'd implanted her BAHA back in '06. He called back and said to keep it covered and the earliest we could get in was May 4th for the O.R. We also have to put her on an antibiotic for ten days because of the risk of infection and keep it covered, especially at school. We dug out her old softband (headband that the BAHA can snap onto, usually worn prior to BAHA implant surgery). Her BAHA started 'buzzing', however, so we had to send it away and wait for a loaner to arrive. So no hearing at all for the weekend until the loaner arrives on Monday.

Now, Graeme and I are planning on an unexpected trip to Toronto on May 3-6 now for surgery to have it fixed and the area on her head closed. For those of you who don't know the geography - Toronto is 18 hours away from us, so we need to fly, etc. It's very stressful figuring all of this out, with it being an unexpected trip to Toronto and worrying about infection between now and then, etc. I know I am biased but I would not think it was good judgment to have three other kids spinning her on a swing (doing a 'twisty') with about 200 kids running around. Someone's foot came up and hit her in the head (obviously pretty hard to dislodge a titanium screw/abutment from its place that's been there for 3 years). I know accidents can happen but I think sometimes Kennedy is overestimated in terms of safety and she shouldn't be; between last year's broken arm and now this much more serious injury, I think it's time to go in for a little chat about safety, etc with the school. Just one more thing to do.

Anyway, we are plugging along and Kennedy is doing very well, she is much less worried than we are...

Almost April

2009-03-29T09:26:00.008-03:00

Time for another long-overdue update, I can't believe it's been so long since I've written. It seems like I get (or make) time to do this about once every 3-4 weeks, I'm not a very good blogger. Things are going well around here - Kennedy is getting toward the end of grade five now and getting psyched for middle school. The biggest issue right now is what school she's going to be attending. The one she is slated to attend is up on the chopping block to be closed but the government has not made a decision yet. Apparently we're supposed to know by next week. I don't really have a strong opinion either way. The one she will attend if the original closes is closer in proximity to our home, but will be HUGE in terms of student population; the other is in an area of the city that is really rough and known for drug busts, etc. The school, staff, etc, is good, it's just the periphery that is worrisome. We shall see and whatever happens, Kennedy will adjust and do well, just like she always does. I always worry more than is necessary, but I'm getting better.

March has been fairly uneventful - she's had lots of school work and projects to do so that's kept her busy. This Friday she has two big projects due: one on floods and a 'Wanted' poster for a character in a book. She has been working hard on those. I have been supply teaching a lot and also got a second interview for a teaching position at a private school so I've been preparing for that this week.

In March, Kennedy also went to the endocrinologist, who found she was happy with her growth in terms of height (that had been a concern). She still is around the 5th percentile for height but has remained on her own curve and her growth velocity per year is fine. Other issues we are watching for now involve puberty; we had a blood test done to look at some things so hopefully all will be moving along in that area when her body is ready.

Last night we had a family date to go see Monsters vs. Aliens, which was very cute. Kennedy actually let me dry her hair with a diffuser to really bring out its natural curl. Since it happens so infrequently, I captured the look with my camera. Here are a few shots - I love her curly hair! She is wearing her favourite shirt in these photos - it's her grade five graduation shirt from her school. They have a tradition of having everyone sign their name and putting it on the back of a t-shirt in the year of graduation, with the school crest on front. Cute keepsake!

Front view: my little girl is growing up.

Back view: I love these curls!

Side view: Little button nose :)

Typical pose: I wish Kennedy would open her mouth and smile more for pictures but she has it in her head now to keep her mouth closed. It's still adorable, but I miss her open-mouth smiles. At least she lets me take pictures, I remember my boys did NOT like getting their pictures taken at this age!

Another March Break has Come and Gone

2009-03-08T09:16:00.003-03:00

Random musings on March Break '09...

Well today is the last day of March Break. Kennedy had a fabulous week - the first weekend of March Break we had Taylor home all to ourselves for the weekend for the first time without her Mom & Dad. I had a ball being the doting Nan and Kennedy loved helping out with everything as the ever-loving Auntie. She helped me give her baths, feed her, hold her, change her bottom, play with her. It is so beautiful to see the two of them together. I am so proud of how responsible she is becoming.

On Monday, she began to go to theatre camp. She asked to go for the whole week so we signed her up and she went on her own each day. There were different themes for the days, such as 'Broadway Bound' and 'High School Musical'. She came home so happy and excited every day. It was not as fun for me as we usually have the whole week together and didn't this year but she's growing up, expanding her interests and I think it's great she wants to do other things.

We did catch a movie together on Tuesday night: Jonas Brothers 3D. It was a lot of fun; those boys have a LOT of energy. Kennedy loved it! Friday night, after theatre camp was done for the week, we had a girly spa & movie night, complete with a full massage, bubble bath, manicure, and movie. Oh yes, we also had fun playing 'Guitar Hero: World Tour' together. Graeme actually joined in for that. Kennedy's score beat ours almost everytime, no matter if she was on drums or guitar. She loves that game so much and is so cute to watch. She is her mother's daughter - loves the 80s music - we often hear, 'Eye of the Tiger' and 'Beat It' pounding away down there.

Yesterday (Saturday) was a cooking day, she wanted to make cheesecake so we spent the afternoon doing that. In the morning,though, we had to go out and do a few errands, one of which included going to Home Depot to pick up a small light switch. I wish I'd had my video camera because Kennedy began giving us a guided tour of Home Depot. She would walk us over to the kitchens and say, "This is the cupboard, these are some lovely drawers," etc...and would open them and point just like she was little Miss Saleslady. It was so adorable.

On another somewhat related topic, something she is doing a LOT of lately is asking us, "What will I do if I work here when I am older?" She does this at almost every new place we go; she has a real curiousity about working and having a job. She is very excited about this. We spend a lot of time talking to her about different responsibilities of different positions. She thinks she might like to work at the hospital where people register - you give them your Medicare card, they enter your info in the computer and then tell you which way you need to go to get to your desired destination. I think she'd be great at this (or whatever she sets her mind to). She certainly knows her way around the hospital and is excellent on the computer. Time will tell, I just want her to be happy in her life no matter what she does.

Last note about March Break '09 - K got a cheque for Xmas this year that had been sitting on a shelf in our kitchen for going on three months and we decided we better get it cashed. So Kennedy opened her very first bank account yesterday, learned all about getting an account, how much she could take out in one day, got her new bank card, selected her own PIN for the account, asked questions of the bank manager who set up the account, etc. It was happy and sad at the same time - happy to see her taking in the information, getting more independent, but sad because my baby is growing up!

Back to school tomorrow - I'm not scheduled to work tomorrow yet so that's a good thing as Kennedy's big brother, Kyle, is coming home from his high school trip to France at about 1:00am. She is excited to see him as am I - can't wait to go pick him up tonight, Kennedy will have to wait until the morning to see him, though as she does need to wake up for school!

Hope all of my readers had a great break or will have a great break if you haven't yet had it!

Auntie Pictures

2009-02-23T10:13:00.003-04:00

It's been a while since my last update but we've pretty much spent most of the winter DIGGING out from the snow. It's the worst winter I can recall in my lifetime. We have 7 foot snowbanks in our driveway and there's a ton more falling today, at least a couple more feet. Yikes!

On a sunnier, brighter, happier, more joyous note, Miss Taylor, my granddaughter and Kennedy's sweet niece, was here for the past weekend and I got a couple of really cute pictures of she & Kennedy as well as she & her Gramp. I thought I'd break up the February blahs (and my long hiatus from posting) by sharing a couple of these pictures.

Sunday morning pajama girls:

Gramp & his girls:

Kennedy As Miley Cyrus

2009-02-01T11:11:00.000-04:00

As many of you know, Kennedy got her beloved Disney Sing It for the Wii for Xmas. As promised, here is an early video of her belting out "Start All Over" by Miley Cyrus.

Random January Pics

2009-01-31T10:37:00.003-04:00

Here are a few shots of Kennedy in January at her family birthday party, with great grandparents, with her beautiful niece (and my lovely granddaughter!) Taylor, with her cousins, and outside playing in the snow. Did I mention we have gotten a TON of snow this January? There is also a sweet one of her with her dad, who, after almost 13 years of us being together, shaved off his moustache much to my delight. There is a photo near the end of her with her new blonde-highlighted, straightened Hannah Montana hair, which was her last birthday request. What a diva...

If these photos do not start, or say, 'no such photos found' hit the 'F5' button at the top of your keyboard to refresh the screen and remember, it's not us, it's Flickr! ha ha...

Kennedy is almost 11!

2009-01-18T10:20:00.003-04:00

Kennedy had her 'friend' birthday party early this year - last night to be exact. The reason we did it was because she wanted a movie party and there were no real 'kid' movies coming out on her birthday weekend so the girls all went to see 'Hotel for Dogs' last night instead. They had a great time and Kennedy was so excited because we straightened her hair and I let her wear make-up. They had a great time and two of the girls, Jenna & Marysa, came back over to our place after for a sleepover. We let Kennedy have her present from us then - a new cell phone. She went CRAZY...it seems crazy at 11 to have a cell but it seems to be all the rage and we look at it as another social tool. She was texting up a storm last night! Here are some pictures from last night's festivities...

We are planning a 'family' birthday get-together for next Saturday, which is closer to her actual birthday, the 27th. Should be lots of fun...oh and we do have a video of her singing from her Disney Sing It! game for the Wii, I just have to convert & upload it!

A Christmas Story!

2008-12-24T08:47:00.011-04:00

Hey everybody! Its Kennedy! Today I read a Christmas story. I hope you enjoy the video!

Thank you and MERRY CHRISTMAS!

Love, Kennedy
xoxox
(Mom here) The name of the story is, "What Santa Can't Do" and it is written by Douglas Wood and illustrated by Doug Cushman.
Here is the video and the words are below so you can follow along - enjoy!

There are lots of things that regular people can do, but Santa can't. He can find every house in every town in every country. But sometimes he can't find his pipe or his slippers.

He can remember everybody on his list. But he can't quite remember what Mrs. Claus said to get at the grocery store. Santa can never buy enough reindeer biscuits. He can't drive a car. (That would hurt the reindeer's feelings.) And he can't fly in airplanes. (That would really hurt their feelings!)

He can't shave. No one would know him. And he can't wear a suit and tie to work. Well, maybe a red suit. Santa can't quite touch his toes. Or do as many sit-ups as he used to. Santa can't wear Bermuda shorts and a T-shirt. Or sandals.

Santa can't do his best work without elves. And he can't wait to try out the new toys! Santa just can't help smiling. And he can't seem to smile without his eyes twinkling. He can't stand having an empty lap. Santa can't chuckle. Or giggle. Or snicker. He can only "Ho! Ho! Ho!"

He can't pack a regular suitcase. Santa can't sleep at night. At least, not on Christmas Eve! He can't leave for work without a kiss. And a present for someone special. He can't come into a house the normal way. He doesn't know how doorknobs work. Santa doesn't relly like fires in fireplaces. ("Ouch!") He just can't seem to walk past a plateful of cookies. Or a glass of milk. And he can't leave a single gift in his bag, even the tiniest one.

There are lots of things Santa can't do. Lots of ways he's different. But in one way he's just like you and me. He can't wait for Christmas!
------------------------------
HAPPY HOLIDAYS TO EVERYONE FROM THE WEIR FAMILY!

Kennedy Xmas Concert '08

2008-12-18T23:20:00.004-04:00

Just a couple of shots of K in her Xmas show - her class sang "Jingle Bells" (all four verses - did you know there were four???) and played recorder on the chorus. We were so proud of her and how well she did with the recorder. I was excited to help her learn as I'd played the saxophone for many years and the recorder is very similar so I hauled out my old recorder and worked with her; we had many "Jingle Bells" duets here at the house before the show! Unfortunately I had only my Digital SLR camera with me without video capabilities so I didn't get any video. Maybe Santa will bring me a digital video camera! ha ha...:)

Singing Shot:

Recorder shot with her class:

Recorder shot close up:

Learning the Piano!

2008-12-11T17:51:00.002-04:00

We decided to move the piano out to a more central location so I could practice a little more (I've been subbing music and expect to be doing more so I need to brush up!) and also because Kennedy is showing some interest in learning. Today I taught her C, D, and E and she learned her first little song. Naturally, the first thing she wanted to do was make a video for the blog. Here's my little Liberace-in-training:

What do YOU want for Xmas?

2008-12-01T16:41:00.003-04:00

Hey everybody, it's Kennedy! Today I made a video about what I want for Christmas. I want you to tell me what you want for Christmas! I hope you enjoy the Video! Thank you!

Love, Kennedy

Charge It for CHARGE

2008-11-16T21:16:00.003-04:00

I know most of you may have heard of this already via email or on my Facebook page, but I wanted to ask that if any of you are considering any type of donation to a charitable cause this year, I would urge you to support the CHARGE Syndrome Foundation. I'm not big on 'blegging', but this is cause near and dear to my heart as they have been a great source of support to my family over the past ten years.

The Foundation has a new campaign going on called, "Charge It for CHARGE" and people can donate, or set up their own fundraiser page to become a fundraiser themselves. I have set up a "Charge It for CHARGE with the Weir Family" page at this address:
Click here to Charge It for CHARGE with the Weir Family. You can make a donation right there, or use the buttons on the left side of the screen to join in the fun and become a fundraiser yourself!

Thank you in advance for considering a donation to the CHARGE Syndrome Foundation!

Sincerely,
Graeme, Lisa & Kennedy Weir

A Fitting Story for Remembrance Day

2008-11-11T18:59:00.006-04:00

Kennedy wanted to read a story to my class at school because they had asked her to read more to them after I showed them her poems the other day. She chose, I Am Canada by Heather Patterson. I thought it was fitting that she chose this book because today is Remembrance Day and we would not have this wonderful country the way it is without those who risked and sacrificed their lives to fight for it.

Poetry Reading by Kennedy

2008-11-05T20:49:00.004-04:00

Tonight is a "diva" night for sure. Kennedy spotted a new poetry book I won recently and decided that her blog audience would like not one, but two poems read to them. I will post the text below the video so you can follow along.

The Wind by Marie Louise Allen
The Wind, O the wind, it is made out of air
That always is rushing to get somewhere.
It comes in a hurry
And goes in a flurry --
It pushes so hard that it makes us all scurry!
It whirls and it twirls
And it tugs at my curls;
It puffs and it blows, and away there it goes!
But why must it hurry? Not anyone knows.

River Winding by Charlotte Zolotow
Rain falling, what things do you grow?
Snow melting, where do you go?
Wind blowing, what trees do you know?
River winding, where do you flow?

Halloween's Been Over For Five Days, What Do You Mean You Aren't Ready for Xmas Yet?

2008-11-05T19:24:00.004-04:00

Kennedy decided today that she was good and ready to compose her annual letter to good ol' St. Nick. Here she is doing her favourite activity of late, making videos of herself:

Another New Food!

2008-11-02T12:12:00.006-04:00

Every Saturday night growing up, we had homemade beans for supper. This was a longstanding tradition in my parents' house and they still do it even though all the kids have moved out. It's odd to go into my parents' house on a Saturday and not smell homemade beans cooking. Yesterday, Graeme & Kennedy went to have dinner with my Mom & Dad because I was out having dinner with a couple of my friends. Kennedy decided she wanted to try beans and promptly devoured two bowls! She wanted to make a video to tell you about it:

Happy Halloween!

2008-10-31T17:34:00.004-03:00

Kennedy has a message for everyone today about what happened at school:

HAPPY HALLOWEEN from the 'Elegant Witch'

First Banana/Video Night

2008-10-25T21:49:00.004-03:00

Kennedy has felt like working on her actress skills tonight and wanted me to shoot another video of her eating bananas that were not pureed for the VERY FIRST TIME! We are so proud of how well she is eating. After eating with a tube for nine years, she has come so far in the one year she has been eating. Here you go for your viewing pleasure:

WELCOME!

2008-10-25T20:11:00.002-03:00

Kennedy's new 'Welcome' video - October 25, 2008
Kennedy wanted to make a new welcome video - it'll live on the side bar at the top but I thought I'd post it a little bigger in a post so people could get a look at all her cuteness!

Kennedy is an Auntie!

2008-10-18T22:02:00.004-03:00

Last weekend (Thanksgiving weekend no less!), Kennedy became an Auntie! My son Ryan and his girlfriend Angela gave birth to a BEAUTIFUL, healthy baby girl on October 10th. Kennedy hadn't been sure about this whole 'Auntie' business and quite frankly, wanted to be a 'sister' to the new baby but when she saw her little niece for the first time, she was fine with it!

I am pleased to present Miss Taylor Kennedy Nolan (yep, they gave her Auntie's name for a middle name)...born on October 10, 2008 at 9:42pm, weighing in at 7lbs 1oz and 20 inches long. I am a proud Nan and Kennedy is a proud Auntie. Here are some pictures:

Taylor with her Mommy (Angela) and Daddy (Ryan) - 10-10-08

Auntie Kennedy feeds Taylor while Nan happily snuggles her

Taylor, one day old

Taylor with her Daddy and Auntie Kennedy

Wordle

2008-09-20T22:15:00.004-03:00

I found this over at the blog of Miss Alice and couldn't resist doing one for Kennedy's blog...here is the result (you can click to make it big):

What a nifty little application!

September School Work

2008-09-16T18:33:00.002-03:00

Kennedy had to write a story about her summer vacation. I thought some of you might get a kick out of it:

My Summer Vacation
I had a great summer! I went to Theatre Camp, Deaf Camp, and I got a haircut.

I went to Theatre Camp to do singing, dancing, and acting. We are doing the play called Peter Pan. I am an actress now. It is at the Interaction Children's Theatre.

I went to Deaf Camp on August 3rd. It is in Fredericton. We played games, swimming, and crafts. I had fun at Deaf Camp!

I got a haircut at Wal-Mart. My hair got straightened. I got blonde hair. Marysa and Jenna came with me. I also got bangs. I love my haircut!

I had a wonderful summer! My best part was going to Theatre Camp, Deaf Camp, and my haircut. I hope I will be a good student in Grade five.

She also had to write sentences with conjunctions. For some reason, when she is told to write sentences, she independently does these long, rich, detailed sentences. When she is writing a story (as above), she uses more short, choppy sentences. That's something we need to work on but she'll get there. I had to have a good laugh at number 1. You can click the picture to make it bigger if you can't read it.

Blog Neglect - Brief Update

2008-09-15T18:16:00.005-03:00

Hey gang, I know I've been woefully negligent in posting here but with Kennedy & Kyle back to school plus me doing my full-time internship and two university courses, there isn't much time for blogging. On a good note, grade five is going pretty well for Kennedy so far. Her writing has improved so much, she is adding so much more detail to her sentences, using conjunctions, etc. Mommy is very proud.

She has decided that she doesn't want to go back to Guides this year. I'm a little disappointed but I respect the fact she doesn't want to and I won't force her. She's still bowling in the league every Sunday and going to theatre classes beginning in October on Thursday nights. She goes around telling everyone, "I'm an actress now." It's so cute.

Hope all of Kennedy's readers are having a great September/back-to-school time!!!
Here is the little Missy on the first day of school - what a diva with her Hannah Montana hair and outfit on, blowing her kiss to Mommy!

Boing!

2008-08-17T20:01:00.003-03:00

This is probably one of the best investments we've made - Kennedy's trampoline. I know they sometimes have a bad rap but if used properly with the safety netting and supervision and following the rules, I think they're great. Plus, they are great exercise (trust me, I've been on it and your heart rate definitely goes up after a few jumps!). She'd been asking for one since last year when she tried it up at my cousin Sherri's house at our family's annual 'Estrofest' - Graeme named it the Estrofest because it's a three-day thing each August where the females from my mom's side of the family all gather up in northern New Brunswick at my cousin Sherri's place. We are actually heading up there tomorrow morning for Estrofest so we'll be away from the computer for a bit.

Anyway, Sherri had a trampoline, she tried it and loved it and has been asking for one since so when they went on sale, we bought her one and she's been jumping ever since. She goes out in the morning in her jammies and gets in and sometimes (like the video below), she does it in the evening with her jammies on. She is actually pretending she's hosting a show during this jumping segment, thus the "Hi, this is Kennedy Weir and welcome to my house" and what not throughout the jumping. She loves the whole butt-feet jump combo; it's her favourite so far...

Another Smashing Performance!

2008-08-16T21:39:00.003-03:00

Well my little princess did fabulous again tonight, along with the 40 something other children who make up the group who performed at Summer Jam 2008. She was in five songs tonight, had a line of her own, which I missed on video and a singing line of her own (which I caught on video!), and many dance steps to learn in five short days. She rocked it out... She is really looking forward to going to Theatre classes beginning in the fall; Mommy couldn't be happier about that. Watching her up there on stage is sheer and utter joy! This is a song from Anne of Green Gables called, "Summer" - Kennedy has a short solo near the end of this clip, at about 3:16...

Tonight is the Big Show

2008-08-16T09:51:00.003-03:00

Well, after a week of crazy rehearsals, including one 9 1/2 hr day, Kennedy will be performing with her group tonight in the 'Summer Theatre Jam' at the Imperial Theatre tonight. I am so excited for her; I would've loved to have had the opportunity to perform at the Imperial Theatre (it's really an amazing place that was restored after my music career was finished!), and here is my dolly doing her SECOND show there. She had also danced there a couple of years back.

We are having a relaxing morning as she has a two hour practice this afternoon followed by the show this evening. I am so excited for her. I will be posting pics (if they let me take any...it's pretty strict there) of the show and if not, some pictures from after the show.

Home from Deaf Camp and Back to Theatre Camp

2008-08-12T21:34:00.005-03:00

She made out great at Deaf Camp - she was dirty but happy when I picked her up on Saturday morning. I was informed that she & her group won the talent show, she & another girl, Taylor, sang "If We Were A Movie" by Hannah Montana while the other girls in the cabin backed them up with home made instruments, they were a big hit and won the whole thing.

This week, she's back at Theatre Camp for 'Production Week' - where all the other themed camps (Broadway Bound, Disney, etc...) get together and come up with one big show of them all. I can't wait - it's this coming Saturday!

Here she is with her cabin mates:

Here is the little missy singng her heart out at the talent show...I don't know where she got that pink hat, but it's so Kennedy...

Sprucing Things Up Around Here

2008-08-07T16:21:00.005-03:00

I finally caved and upgraded to the new Blogger - I had always chosen to go with the Classic templates because I had more control over the html and could tweak it the way I want. I'm still tweaking with this new version but it's not as annoying as I thought it'd be and let's face it, it IS prettier. What do you think? Like the new template? I thought it was really cute and the best thing? It's FREE...always a selling point with me.

I am so not surprised that I am working on Kennedy stuff when I have a gazillion other things to do. Only 41 hours to go until I pick her up. Roughly. I'm not counting or anything. Really, I'm not. :)

Okay onto other work now. I've already written a report this morning, washed all the bedding and worked on another web page that I needed to get done. Maybe I'll keep the Kennedy slideshow running on the side.

She's Off!

2008-08-05T10:13:00.003-03:00

Well, I dropped the little miss off at Deaf Camp on Sunday. She was so excited for the past few months and on the way up, but she decided she wanted mama to stay when I was getting ready to leave. Uh oh...
The woman I hired to be her helper is fantastic though, and got her mind changed again; they were laughing and looking at Hannah Montana magazines as I drove off. It's Tuesday and I haven't heard anything so I'm assuming she's settled in and having a ball. I hope.

As for me on the other hand, I can't stop thinking about her; I even woke up in the night last night for a couple hours wondering how she was making out. Is she warm enough? Did she have enough to eat today? Did they remember to remind her about sunscreen and bugspray? Is she dry? (it's been raining like a bugger here since I drove her up) What a mess I've been. I know she's going to be fine but I can't stop myself from these incessant thoughts. There are more than fifty staff for 48 or 49 campers AND I hired someone to give her an extra hand specifically. So why can't I calm down? I'd love to know...maybe it'll get easier as the week goes on.

I was online watching her little videos the FIRST NIGHT she was gone. I thought I'd get all this work done and get all caught up on my sleep, etc. Yeah, not so much. Sure, I've left Kennedy lots of times before, even up to eight or nine days but it was always with my mom...this is different. She will need to be a lot more independent and I have always been a worrier that other people won't "do it like mom does" - which is ridiculous because she does fine at school, other day camps, etc, where I am not there. I think it's the whole camp, sleeping away overnight, all personal care, etc that I'm stressing about. I really am going to try and keep busy this week and relax a bit as well but it is HARD!

Following the Leader

2008-07-27T10:02:00.002-03:00

This is from the Peter Pan movie, the song is "Following the Leader." This will be the last one from the show. There was another video clip of Kennedy delivering her lines but the audio didn't pick them up as she was standing further away...:( She did great though, we were all very proud.

I've Got No Strings

2008-07-27T09:54:00.001-03:00

Another video from the show - this one is 'I've Got No Strings' from the Pinocchio movie. Kennedy is on the far right.

Disney On Stage!

2008-07-26T14:12:00.002-03:00

Kennedy had a great time at Theatre Camp, at the end of the two week camp, they performed a "Disney On Stage" production with different song/dance numbers from the different movies over the years. Here she is in the finale, "We're All In This Together" from High School Musical, which I think was everyone's favourite!

Summer Fun

2008-07-10T16:20:00.003-03:00

Kennedy is having fun with Jenna & Marysa here - they go off to the playground themselves or up to the store for an ice cream. Also, on Wednesday nights for the next eight weeks, we'll be having a sleepover with them as I have a photography course so Marysa will watch Kennedy & Jenna while I'm out, then the three of them will have a sleepover. Kennedy is pretty excited about that.

Not too much other than that is new around here - Kennedy made out great at Nana & Papa's while I was on my trip to Europe, next week is the beginning of her two-week "Disney on Stage" theatre camp so we'll be busy this weekend getting ready for that. Hope everyone is having a fabulous summer!

Last Day of Grade Four

2008-06-20T08:14:00.005-03:00

I can't believe the year is over. Kennedy got her home report yesterday and passed all her subjects, spelling and Social Studies were her two highest marks. I'm just thrilled she is doing the regular curriculum with some modifications and keeping up. We are so proud of her. The next time I see my little beauty in about three hours, she will be a grade fiver! Where has the time gone?

She looked so cute this morning, wearing her little Old Navy dress to school, that I had to snap a couple of pictures. She is getting to be such a big girl and that hair! She agreed this morning to a 'trim' - she has a major long hair obsession that I don't think is going anywhere anytime soon.

We have a busy summer planned, she is going to two weeks of theatre camp, one week of deaf camp, and one week of Nana & Papa camp while I am in Europe for my March of the Living Trip. We are also having her two friends Marysa & Jenna for four weeks this summer so she is excited to have two 'sisters' for part of the summer. Between all of that and me finishing up two more university courses, things won't slow down a whole lot but that's okay, I'm sure we will have lots of fun.

To close, I'll leave you with another one of the photos this morning, up closer and in colour:

Fun Weekend At APSEA

2008-06-01T14:34:00.004-03:00

As always, Ms. Kennedy loved going down to APSEA with all her friends for the annual "Family Weekend" - she still had a blast and made out fine signing despite having only one hand/arm to do things with. More later, but for now here she is with some of her buds, mostly at bed time (the rest of the time, you couldn't slow them down long enough for a photo!), making silly faces, reading Jonas Brothers or Hannah Montana books, doing silly poses and of course, the "toothbrush shot":

Recess Adventure for Kennedy

2008-05-29T14:03:00.002-03:00

I got a phone call around 10:15 this morning, wondering if I could come to school. Apparently, Kennedy was playing a game of 'chase' with the other kids on the playground at recess and she took a fall. She was crying when I got there so I knew it was something, she usually has a pretty high pain tolerance. I took her to the hospital and lo and behold, she broke her arm (humerus - bone between elbow & shoulder).

They don't cast it up that far, so she has to wear one of those slings that keeps your arm sucked right in to her body for four weeks. And yes, of course, it's her right arm, the one she writes, eats, and does everything else with.

I guess I have to feel a little happy that she was playing 'chase' and that this was a hospital visit not brought on by anything CHARGE-related, just regular ol' kid-playing stuff. I still feel bad for her though. Here she is, slightly later with her new sling on:

World, Meet Molly

2008-05-10T21:46:00.004-03:00

Last Saturday, our cat of 12 years, Loki, died. He became very sick and by the end of the day we discovered he was in congestive heart failure and was drowning in his own fluids so he had to be put down. All this week, Kennedy kept saying, "man, I miss Loki, I want him back right now!" Today, we decided to bite the bullet and get her a new kitten. We found her at the pet store and Kennedy has dubbed her Molly. I had to get a kitten because I'm not a real cat lover so the only way I'm comfortable with a cat is to have had it pretty much from birth.

Here are a couple of shots from today, we noticed the dirt in her ears and had a good cleaning session thanks to a couple of these pictures!

Here she is on the couch in Kyle's room:

Wonder if we'll sleep tonight?

Has It Really Been A Year?

2008-05-09T09:02:00.003-03:00

Kennedy's bowling banquet took place last weekend - she had a great time with all her friends and was especially excited to take home three trophies. We are very proud of her but even more happy to see her experiencing the feeling of being part of a team. Her team won first place in the roll-offs. Here is the team photo in front of the giant trophy that their names will go on, with each of them holding their individual trophy for that:

And here she is, at home (pigtails removed!) at the end of the day on the deck with her three beloved trophies. I'm pretty sure no trophies were ever hugged more than these were!

May Days - An Update

2008-05-02T16:54:00.004-03:00

Things are still pretty much in hectic mode around here - we are having a lot of days off for teachers' professional development days so we've had some nice at-home time together. Kennedy is super excited about her upcoming summer plans, which include a two-week Disney-themed theater camp with a full stage production at the end, and a week away (without mom for the first time) at deaf camp.

Last night along with her choir, she performed in the Music Festival and did a great job. This weekend she has a birthday party and a bowling banquet to attend. This kid has more of a social life than I do.

I am having a bit of a "girl night" tonight - one of my pals and I from university are having dinner out then going to see a movie (it's Patrick Dempsey, it can't be anything but good!)

I am also getting ready to begin spring courses on Monday and am thinking about the extra reading I have to do to prepare for my trip to Germany & Poland at the end of June (it's a Holocaust learning tour for teachers - it's going to be very intense).

So, that's pretty much what's going on with us right now, we are still waiting to hear back from the School District about this French program they are implementing in the fall, there is supposed to be a meeting coming up very soon. Wish us luck!

Must-See Movie on Sunday Night!

2008-04-18T13:08:00.004-03:00

This Sunday night at 9pm ET/ 10pm AST on CBS, a movie called "Sweet Nothing in My Ear" will be airing. The beautiful and talented Marlee Matlin stars alongside Jeff Daniels with newcomer Noah Valencia playing their son, Adam.

Here is a news release about the movie:

In CBS' new movie, two warm people are divided by a mutual love.

The wife (Marlee Matlin) is deaf; the husband (Jeff Daniels) is not. Now one issue -- whether to give their deaf son a cochlear implant -- splits them.

"Sweet Nothing in My Ear" has surprises for the audience and for the actors. "I had no idea about the pride in the deaf culture," Daniels said.

That's a key factor. "Some may see deafness as a disability," Matlin wrote in an e-mail interview, "but it is a spirit and a sense of community that has been around for over 200 years."

That pride propels the conflict, Daniels said. "(Her) opinion is, 'We're deaf; we're not disabled.' ... My argument is that we should not limit him, when there is this technology that might allow him to hear."

This is a frequent debate. Proponents say the implants can restore partial sound to some people who were born hearing; critics say this can separate them from their deaf family and schoolmates.

"I've seen my share of scripts, mostly poorly researched, featuring cochlear implant storylines," Matlin said. "This was the first one that looked at the issue intelligently, accurately."

The director is Joseph Sargent, 82. "He loves making movies," Daniels said.

In his 1985 "Love is Never Silent," Phyllis Frelich and Ed Waterstreet, both deaf, played parents of a hearing woman. They're back now, as grandparents encased in the struggle.

That was one of the attractions, Matlin said. It "featured several roles for actors who are deaf or hard of hearing."

Noah Valencia was 9, with no acting experience, when he was cast as the son.

"That kid is a wonderful actor (and) he was so prepared ... He was a pro," Daniels said.

Daniels had his own preparation. When the role came up, he said, his agent implied the actor knew sign language. When he got the part, "I ordered this 20-hour series of (signing) tapes and crammed," Daniels said.

Photo Credit

Bloody Wednesday

2008-04-09T23:53:00.002-03:00

Today Kennedy's BAHA site was really "angry" when I cleaned it this morning. We do the same routine every day but for some reason it just gets really icky and sore sometimes. Tonight it began bleeding a LOT (most I've ever seen) - her hair was matted and everything. It was a sin! She had to miss Girl Guides (which she loves) and go the whole evening without her BAHA on, and she LOVES her hearing aid, but I had to let it dry out some and try and get it healed. Hopefully tomorrow is a better day as she has a big pizza party with the Sea Dogs (our local Major Junior League hockey team).

On a good note, I am finished classes until the first of May...just need to study for those exams next week!

Testing...

2008-04-09T00:19:00.001-03:00

My new email subscription option...
Ignore this post :)

Test-time

2008-04-08T22:31:00.004-03:00

Lately, K seems to have had quite a few tests and another big one coming up Thursday on the Interior Plains region of Canada. She has to know information about the climate, natural resources, plants, animals and the geography of the region. She recently had one on the Canadian Shield and she got 27/30. We were so proud. She also got 47/50 on a big spelling test and 12/15 on her grammar test for quotation marks. She is working so hard lately and I just wanted to share all the great news about how well she was doing!

Now, it's test time for mama - 3 exams next week...It's almost over, it's almost over, it's almost over...

This is Ms. KK and Ms. MacKenzie together shopping for 'fabulous' clothes at Old Navy on a recent trip. A girl's gotta have a break once in a while from all this school work, what's more fun than shopping???

Fighting for Choice

2008-04-06T19:45:00.006-03:00

We have a war going on right now in our education system here in NB, if you want to read all the details about it, check this blog out.

Here is a condensed version: the NB government is trying to save money by cutting the Early French Immersion program here and forcing ALL students in grade five into this new, "Intensive French" program. Kennedy goes into grade five in the fall and now I have lost the choice for her to continue to be educated in English. There are no French interpreters or itinerant teachers for students who are deaf/hard of hearing, etc...this is a nightmare. The intensive French has them in French instruction 75% of the day for FIVE months!

This is inappropriate for Kennedy and even MORE so because she will not even have access to the information even if it WERE appropriate. I've had many others come to me and tell me they feel the same way and nobody in the government, at the school district, or at the school can tell me
a) how this could possibly benefit her
or
b) how they plan on accommodating for her unique learning challenges.

They are opening themselves up for quite a bit of legal trouble in my opinion (in addition to the fact that so many people are outraged by this decision that they will be lucky to see the light of day in the next election).

I wish things could be boring - just for a little while.

So, if you're wondering where I've been lately, I've been fighting the government over this regressive decision that will adversely affect Kennedy and others as well. A government removing choice from its citizens in a democratic system - kinda sounds a little backward to me...

More Sleepover Pictures and a Letter to the Easter Bunny

2008-03-10T20:08:00.003-03:00

Here are a few more photos of the sleepover queen and her court - Jenna and MacKenzie in a few shots, then Mac & Kennedy in the last ones shopping, and singing Kareoke and just being generally silly. Also included in this set is K's letter to the Easter Bunny. She just popped upstairs and said, "I want to write a letter to the Easter Bunny." Who am I to argue? She also wanted to know where he lived so I told her "Easter Island." Sounds like a good answer to me!
(as ever, hit F5 if Flickr is being a pain and the refresh should bring the photos up)

Pink Lady/Sleepover Madness

2008-03-06T13:22:00.005-04:00

Well it's March Break Madness around here this week, where mom tries to get all of her school work done and the kids want to be run around here, there, and everywhere! Kennedy went for a sleepover at her friend Emma's house this past Tuesday night, where Emma's mom helped Kennedy get into the latest fashion trend with all the little girls around here: PINK HAIR. Yep, pink hair streaks in the front of the hair are all the rage lately, so of course Ms. Kennedy had to get in on it, too. I knew Emma's mom had the dye so I told her to go for it.
Here's some picture evidence:
Kennedy's Pink Hair - Side View

Front View:

Now she is dying for me to straighten it with a flat iron so she can see what it will look like straight. What a kid.

The one night sleepover at Emma's turned into two nights, as they live quite a way away from us and a nasty freezing rain storm took hold yesterday and we weren't able to go and get her. That meant a Wednesday night sleepover at OUR house with her other friend, Jenna, had to be postponed. Her mom & I decided on Friday night, which was okay because our dear friends Jeanie & MacKenzie from Nova Scotia had called on Wednesday morning to tell me that they weren't going to be able to make their previously scheduled trip this weekend.

Then, Jeanie called me on Wednesday night after I made the plans with Jenna's mom to tell me that they could in fact now make it and would be arriving the same time as Jenna on Friday night and staying until Monday. Soooooo, Friday night is going to be girls' night at my house with Jeanie, MacKenzie, Jenna, Kennedy, and myself. Graeme better run and hide from all those girls... (actually he is taking off to go four-wheeling with the boys on Saturday so he'll be able to escape for a little while at least!)

Oh yeah, did I mention my sister and her three kids are coming from Nova Scotia this weekend as well to visit and it's my sister's birthday and she wants us all to go out and celebrate??? I'll fit it all in somehow. I guess I better get off the computer and start studying for my two midterms next week, it doesn't look like I'm getting much studying done this weekend!

January - February '08

2008-02-19T07:54:00.011-04:00

I know, I've been neglecting this blog. Once university starts, extracurricular hobbies/activities (including blogging) seem to cease with the onslaught of reading/assignments/midterms/projects/etc.

Kennedy had quite a birthday celebration: a bowling party with friends, a sleepover with another friend, and a family party. It was quite a weekend for celebrating the big 10!

In early February, we traveled to the IWK for some appointments - she had dentistry (had her first cleaning of her life and did great!) and she also had ophthamology. She LOVES playing "eye-games" and this time was no different. She did a great job and they actually decreased her eyeglass prescription slightly. While in Halifax, it just happened to be the ONLY week that the big Hannah Montana 3D Movie was playing. It was only playing for that week and in two places in all of Canada: HALIFAX, and North York, Ontario. So we got some tickets online and our dear friends MacKenzie & Jeanie drove up and met us in Halifax to take in the show. It was pretty exciting!

In other news, and speaking of "Hannah Montana," Ms. Kennedy went and auditioned for her school Talent Show on her own and made it! She will be performing Hannah's song, "Best of Both Worlds" next week. Needless to say, we are all becoming quite well-acquainted with the lyrics for that song here around the house as she rehearses ceaselessly!

Here are a few January-February '08 pictures (you can click them to make them bigger if you want to see them better).

Bowling Birthday Party:
With Jenna & Marysa at the party

With Rachel at the party

Kennedy EATING her birthday cake

The Whole Gang, Post-Bowling

Here she is doing science experiments with Emma at the sleepover portion of the party weekend:

This would be at the family party, "posing" in front of her presents (and just a "teensy" bit excited to start opening them!)

Finally...what party weekend would be complete without a Hannah Montana WIG?

More pictures to come when I'm not rushing to get showered and to class on time!

On Celebrating

2008-01-24T17:10:00.000-04:00

Posting this early because I know I won't have time with all her parties/sleep over this weekend...
If you had asked me 10 years ago today what I thought life might be like at this point, it's likely that my response may have been somewhat dismal. I remember sitting in the hospital bed crying after the doctor gave us the news that our beautiful, much-longed-for-and-loved-beyond-measure-before-she-even-arrived daughter had "bilateral choanal atresia." I was so upset that she wasn't healthy. I was so upset because I didn't know if she would make it through that very day. I was so upset because I couldn't even pronounce the darn name of the condition that she had. What kind of mother can't even pronounce the name of her daughter's condition for crying out loud?

After three and a half months in hospital, we came home with the definitive diagnosis of CHARGE syndrome and life with Kennedy outside the hospital began. In those last ten years, she has endured nineteen surgeries, being poked and prodded by so many strange people, having her wee little chest cracked open twice, having so many parts of her tender young body sliced and sewn up again, having to do hour after hour of therapy with so many people. She worked so hard to learn to breathe, talk, hear, see, sit up, stand, walk, and eat with so many systems of her body not working optimally. She had to work so hard to do the things that just come naturally to other children.

This was her reality.

This was her life.

She could've been the grouchiest, crankiest, most horrible child ever and she would've been completely justified in being so. She went through all of this, however, and she thrived. She grew strong, she was happy, she was full of her own little personality, and she gave all of us so much joy. She has gone through more in ten years than most of us will ever go through in a lifetime, and through it all, she radiated, and continues to radiate, this beautiful light of happiness. We should all be so lucky to have a little 'Kennedy' in us.

When I think back to those early days, when I think about all that she has accomplished in spite of what I would consider amazingly unfair odds, when I am sadly reminded of the realities of CHARGE as I was this past week, when another sweet ray of light who was 22 years old with CHARGE passed away unexpectedly, I realize the monumental importance of celebrating this beautiful life. It reminds me that it should not be just on her actual day of birth that I celebrate her, but each and every day that I awaken to the sound of those precious footsteps bounding up the stairs.

I hope the tradition of jumping in bed with Mom and Dad never gets old. I hope the snuggling and the kisses and the squeezy hugs never get tired.

I hope I never forget how lucky I am to have been able to learn so much from this little person and how lucky I am for each day with her.

I love you, Kennedy. Happy 10th birthday, baby girl.

Love,
Mom

The Big Ten and Other News

2008-01-13T11:00:00.001-04:00

A little unrelated picture - my favourite of New Year's Eve - Kennedy sitting on my brother Scott's knee. She does love to act silly with Uncle Scott! By the way, she had NO problem staying up until 1am on New Year's Eve...I think she could've outlasted us all if we'd tested her.

Now...on to more important issues: birthdays. Kennedy is quite excited about her upcoming celebration, and it's a big one - DOUBLE DIGITS! On January 27th, this little amazing dynamo will be TEN. It is hard to believe... She is quite involved with the planning of her party this year: we have reviewed the guest list, decided on the venue, talked about what to get for the guests, the invitations, and discussed the always-important-but-more-so-this-year, cake. We are going to see if any of the local bakeries make a Hannah Montana cake...let's hope so because Mom isn't quite that creative in the cake decorating department :).

In other news, eating is still going great - pancakes have pulled ahead of French Toast as her favourite breakfast food as of late. We are trying something new tomorrow - first she must eat at least 1/2 cup pureed fruit before pancakes, otherwise this kid is going to turn INTO a pancake! Toast is the new afterschool snack du jour - and now we have expanded our horizons to include jelly, peanut butter, or cheese whiz for a topping.

Stay tuned for the latest in Kennedy's Eating Adventures...

Pancakes, French Toast, and Toast with Crust!

2008-01-08T22:20:00.000-04:00

All in the span of the past three days - Kennedy has eaten (and done very well!) with these three new foods. It's so exciting to see her eating different things and expanding her "gustatory horizons". This will make breakfast so much nicer for her; we can add lots of different fruit to the pancakes, she will get some egg/protein with her French toast and how about just regular ol' toast? She ate two pieces of regular toast today and her second piece with crust and all! Homemade apple and strawberry jelly from Nana B's farmstand on top, too.

Never a prouder mother was there today as I watched my blond curly-mopped angel scarf down that toast complete with crust. Oh and table syrup such as Aunt Jemima for the pancakes and French toast? Not a chance - she wants "this one, mama" - pointing and referring to pure maple syrup. A true Canadian kid...nothing but the best when it comes to maple syrup!

On another interesting food note, we are trying to move her to mashed foods for supper and some different things also for lunch. I had a meeting tonight so Daddy got her supper ready. Dad reports to me on the way home from my meeting that she did great with her mashed potatoes (a favourite of hers) and with the mashed carrots; however, when it came to the tuna steak Dad cooked for her and then just mashed up instead of pureeing it, Kennedy was not interested and had a good question for her father... "Dad, are you trying to choke me?"

I love this kid.

Today toast with crust, tomorrow the WORLD!
(or, maybe some ravioli)

Aftermath...

2007-12-28T00:14:00.000-04:00

That's right. Aftermath. The Fat Man comes and leaves this house in a hurricane and it's up to "SUPERMOM" to put it all back together, clean it up, and find places for it all. It's all okay though, it was worth it to see the faces of my family light up with glee at their surprises. Graeme got the biggest surprise of all - his parents bought him a brand new 2007 Chevy Cobalt! It was quite a shock to everyone, most of all him! I couldn't be happier for him, he is the BEST and deserves it. He is a wonderful husband, father, and son. I could not be happier unless I'd bought it myself for him.

Kennedy had a wonderful day filled with High School Musical and Hannah Montana - she was thrilled right down to the core. The boys were a bit more subdued but what do you expect of an 18 and 16 year old that early in the morning??? We enjoyed a beautiful dinner (if I do say so myself...) - I actually searched out and prepared several "Martha Stewart" recipes for the stuffing, a side dish, and the turkey - all were delish! It was a very special present for all of us to have Kennedy join us and dine with us at the table for our holiday meal together.

So now it's back to the cleaning, re-organizing, etc. I hope everyone who reads this blog had a very merry whatever-it-is-you-celebrate and some wonderful, peaceful, healthy, restful time with family & friends.

Yay for Hannah Montana movies!

Yay for new cars!

Shortbread Cookies

2007-12-21T21:33:00.000-04:00

I spent the day doing a lot of holiday baking - when Kennedy came home afterschool, she wanted to play outside in the snow for awhile. When she came in, she noticed the rolled out dough and shortbread cookies cooling on wire racks. She asked if she could have one and proceeded to gobble TWO down (with a bit of frosting on them). The next question was, "can I have that frosting in a bowl, mama?" - that's my girl, complete with sweet tooth! It was pretty special seeing her eat her very first holiday cookies! She was very concerned about which ones we should leave out for Santa. I told her we would save him a couple of the big ones. She is so excited and things are a lot of fun around here right about now.

December Pictures

2007-12-18T19:01:00.000-04:00

Kennedy sang in the Holiday Musical at her school today. It was called "Once on a Housetop" - a great multi-cultural, multi-traditional celebration. Her song was part of the "Santa" portion of the show; he was stuck in the chimney. The song was "A Big Red Fella" - the video is getting transferred onto DVD so I can get it up online. In the meantime, here she is singing:

And here she is, post-show, posing in front of the tree:

And the other day, shoveling snow with Dad (we are doing that a LOT lately - lots of snow already!):

Letter to Santa 2007

2007-12-08T11:47:00.000-04:00

This was an independent effort on the part of Ms. Kennedy. I was proud that she thanked him for last year's gift and asked about the "artic" and Mrs. Claus.
I'm guessing Santa will be able to find couple Hannah Montana movies for her.

Pictures from our trip to Nova Scotia

2007-12-03T14:09:00.000-04:00

All this studying is keeping me away from the blog lately; here, finally, are the pictures from our trip last month to Nova Scotia, where we spent a few days with dear friends Jeanie & MacKenzie and then went into the hospital for Kennedy to have her g-tube taken out and stoma closed. There are photos from their swim at the White Point Beach Resort, at Jeanie's House, and at the IWK. As always, remember if Flickr! is being naughty and says "no such photos found!", hit F5 on your keyboard to refresh the screen and that should set everything right.

22 More Sleeps!

2007-12-03T13:32:00.000-04:00

The Holiday Madness has begun! Kennedy woke up Saturday morning bouncing off the walls to open her advent calendar. There's nothing like brightly coloured Santa & Reindeer waving in your face and the whiff of cheap chocolate to lull you not-so-gingerly out of your slumber. Seriously, though - the holidays are just too much fun when you are dealing with the energy dynamo that is my Kennedy. We put the decorations up this past Saturday & Sunday and though it's no winter wonderland by any means, Kennedy loves it all. She was just about busting with excitement as each of the large plastic totes were brought down from the attic by Daddy. It really is all about reliving things through your children's eyes. It's a lot of fun, even when I'm not 100% in the mood, with the impending doom of six cumulative exams hanging over my head.

This morning, another usual December tradition started...when Kennedy comes upstairs around 6:30am, ALL of the lights must be turned on: the little tree by the front door, the ceramic "North Pole" that sits on the coffee table, all of the little village houses on the mantle and even the candy canes and star in the big picture window. They stay on until Miss K is on her bus off to school. I don't know anyone who loves it all more than Kennedy, which always serves to get me in the mood, too.

Bounced Back and Singing On TV

2007-11-24T17:32:00.001-04:00

Kennedy's surgery to close her button/stoma went very well. She was sore for a few days after (to be expected) but is doing great. Today was our city's annual "Empty Stocking Fund" - an all day televised type of fundraiser where local children/choirs go on and sing and people call in with pledges to provide holiday gifts for less fortunate families. It's now in its 71st year I believe. She had some tears prior to going on stage because Mommy forgot her lip gloss (bad mother, bad mother...). She did come around and sang well with her choir, though. Here is a photo taken after the performance:

Surgery Monday

2007-11-16T12:15:00.000-04:00

Well, we are off to Liverpool to visit with Jeanie & MacKenzie for the weekend and then to the IWK on Monday for Kennedy's big surgery - G-Tube CLOSURE!!! I'm so excited for her; she's been counting down the days "only 3 days left with my button, mama!" It's so cute. So wish us luck and to all our American readers, hope you have a great Thanksgiving next week!

Cookie Monster

2007-11-07T20:34:00.000-04:00

Today is a VERY exciting day in our house. Ms. Kennedy ate a cookie for the first time in her LIFE. Not only did she eat "one," she proceeded to then eat two more of these large, molasses, jam-in-the-middle-on-top type of cookies. I am so incredibly proud of how far she's come, I could just cry. It's amazing how a cookie can make someone THIS happy.

This is her first cookie after school today - it took her almost 55 minutes to chew, swallow and finish the whole thing.

This is her third cookie, tonight after Girl Guides, this one she finished in less than 20 minutes - quite an improvement!

Who knows what will be next on this adventure - peanut butter sandwiches? cream-filled donuts? chocolate cake? The possibilities are endless. This is all so exciting and comes one day after I get the call from the children's hospital that she has an O.R. date of November 19th to have her gastrostomy closed.

These little things are just so amazingly huge. It really is all about perspective.

Girl Guides of Canada Profile

2007-10-31T18:25:00.000-03:00

Kennedy has been featured on the Girl Guides of Canada web site, if you would like to see her profile, you can see it at http://www.girlguides.ca/media/new_site/docs/guiding_profile6.pdf.

Halloween 2007

2007-10-31T18:12:00.001-03:00

Tonight Kennedy decided to be a kitty-cat for Trick-or-Treating, I got into the spirit and donned a jester costume to hand out treats while Dad took her out to get some goodies.

This past week, she has been to FOUR Halloween parties, to one of which she wore the kitty costume; the other three parties she wore her Ariel costume she got in January in Disney World (the poses are all her idea...she's a diva!):

Hope everyone has a safe, healthy, happy Halloween!

Grammar Queen

2007-10-16T23:00:00.001-03:00

My little princess got 38/40 on her big Grammar test today and I am so proud of her! She had to differentiate common/proper nouns, give the meaning of a noun, do plurals, and find nouns in a list. I am doing the happy proud mommy dance tonight :) She seems to do quite well with literacy/reading/language arts type subjects, so I'm very happy about that. She is loving school this year and I am loving her school this year. Yay for teachers that "get it!"

After Nine Years...

2007-10-03T11:22:00.000-03:00

This is a beautiful thing:

I had been all excited at the prospect of uploading videos straight through Blogger but it didn't work - back to Google Video I guess!

More of Kennedy's School Work

2007-10-03T11:11:00.000-03:00

School is going well, Kennedy appears to be doing really well so far in grade four. She knows what she is doing with her homework, I'm not feeling like I'm re-teaching anything this year. It is a practice time for concepts she has already learned at school. She has also gotten a couple of great marks so far: 12/13 on a Social Studies Test about the Canadian provinces and territories and 8/10 on this paragraph about food. I had a good laugh on this one because she isn't allowed to eat downstairs (and she always asks) and she listed it as her favourite place to eat!!!

My favorite breakfast is cereal. My favorite lunch is pudding. Cake is my favorite dinner. My favorite place to eat is downstairs. I know how to cook supper. I want to learn to cook some eggs too. My mom and dad can cook supper.

Yep, cake & pudding for two of her favourite meals - that's my girl!

New Babysitter

2007-09-21T23:06:00.000-03:00

Kennedy had a new babysitter tonight and she had a GREAT time with her. This lovely young lady, Marysa, bowls with Kennedy in the next age bracket up. Kennedy bowls with her younger sister and absolutely adores both sisters. Since this was her first time, Marysa came on her own to get herself used to everything. Next time, I think her little sister will be coming too. Kennedy is in seventh heaven!

When I got home, Marysa told me Kennedy kept hugging her and telling her, "you're my best friend!" all night, which was I think, indicative of a very successful night. I must say that this young lady put more effort into babysitting than just about everyone else who has ever watched her. She brought a big bag of things to do with Kennedy, games, books, Webkinz pets, and some other stuff. I have no doubt that Kennedy had a ball and by the time I got home, she was in her bed, all tucked in and snoring away. I am so happy we've been able to find a regular babysitter I can call if I want to go out some evening. It's a bonus that this young lady is just about the nicest girl you've ever met.

Lucky us! Lucky Kennedy!

Kennedy's First Night of Guides

2007-09-19T21:57:00.000-03:00

Kennedy went to her first official Girl Guide Meeting tonight. They did some games and introductions last week when she was getting registered, but this was the first, "uniform-on-no-moms-and-dads" meeting. She did great, met a few friends she knew from school and came out smiling and gave me a big hug. They chose "patrols" tonight and Kennedy wanted so badly to be in the "Red Rose" Patrol - guess what? She was chosen to be in the Red Rose Patrol. She loves the little Rose badge, ever since she saw it in her Guide Handbook.

Here she is in the front yard, just before we left this evening:

Peanut Butter Babe

2007-09-14T19:23:00.000-03:00

As we continue our adventures in life with oral eating, we discover new and wonderful foods we love. The latest craze d'Kennedy is definitely PEANUT BUTTER. She is seriously obsessed with it, and after eating her other food, eats a generous "mound" of the stuff. She would eat it constantly if I let her; she asks for it ALL the time. I've recently made the decision to relocate the peanut butter to a higher shelf where she cannot see it because I'm just not so sure how much I trust the little curly-haired imp.

I wonder if it's okay to feed your kids peanut butter EVERYDAY? I hope it is, it's protein, right? It can't be THAT bad.

On another semi-related food/eating/tube note, I changed her button earlier this week and it promptly fell out in the middle of the night (faulty balloon). At 1:15am, Graeme & I were awakened by, "Something's happening!" - poor Kennedy was holding her gaping stoma in a sleepy stupor wondering what was going on! We took her to the hospital because we had no other spare buttons and ran into her pediatrician, who said we could just let it grow over. It was a bit sooner than I'd planned, but I thought, "what the heck, it fell out anyway". Usually a stoma will begin to close almost immediately (emphasis on "usually"). Kennedy did fine until the next morning after breakfast, just as she arrived at school, the ol' breakfast started pouring out, then lunch, etc...finally we put another button in her stomach. It looks like it will have to be surgically closed when we're ready.

Kennedy's First Spelling Homework

2007-09-10T19:39:00.000-03:00

This was Kennedy's first day of having spelling homework. I removed her new "Spelling Connections 4" text book from her bag and proceeded to gaze down the list of words. She had to make a sentence for each word; here is the list (you can click on the photo to enlarge them to read them easier):

As you can see, although she attends a secular public school, "God" was one of the words in her list. Now I will share with you some of her own original sentences, without any help whatsoever, including the one with "God".

The Craze Dayz Are Here Again

2007-09-08T13:11:00.000-03:00

Yep the hectic nature of all the "Back-To-School" has had me in a whirlwind this past week. That, coupled with the fact that I almost severed my pinky last weekend (trying to cook and get ahead, cleaning up and stupidly pushed the garbage down not noticing the serrated edge can on top!), has left me little time to post anything.

K is doing great in grade four - she has her old kindergarten teacher who we love so yay for that! The new Teacher's Assistant is doing well, K has been eating fairly well at school (what she doesn't finish at lunch usually ends up as after school snack but that is a-okay with me). Still managing well without the Ritalin as well. Hopefully as my finger gets better, I will be able to update more often.

Here she is on her first day of grade four, complete in her "cool" High School Musical outfit, giving me a sassy pose...

Tomorrow Is The Big Day

2007-09-03T09:54:00.000-03:00

Grade four begins for Kennedy tomorrow; we have learned that Kennedy will be having the teacher she had in Kindergarten, who we loved very much and who "got it". We are looking forward to a very positive grade four! Fingers crossed.

Unfortunately I start on Thursday and I say unfortunately because I've had an accident yesterday where I almost lost the end of my pinky finger on my right hand (of course). So, typing and other work with my right hand is limited and slow - hopefully I can keep up with the profs and with Kennedy.

Here's to a great school year for all the kiddos and especially our friends with CHARGE, may they all have teachers and administrators who "get it"...