Friday, December 31, 2010

Christmas Day in pictures

Traditional 'first thing in the morning' picture on Christmas morning. 
We always sit on Mom and Dad's bed to open our stockings.

Caelan enjoying his new tractor.
He was spinning in circles waiting for Daddy to open the packaging!

Ry modeling a new hat.

Darcy raced through her opening so fast it was hard to get
a picture of her opening a gift!  Here she is with all her loot!

The aftermath...


It must have been a fun and busy day because
I don't have any other pictures until dinner!

Wednesday, December 29, 2010

a little holiday weight gain

Master Caelan is joining many this holiday season and adding on a few extra pounds!!

We had a visit from the dietician last night and Caelan continues to have some record breaking weight gain.  Over the past 11 days Caelan has gained an average of 36 grams a day.  Doesn't sound like much, does it? How about when you're told that the average weight gain for a 1-3 year old is between 4-10 grams a day!  I remember when we were keeping our fingers crossed that Caelan would gain those 4 grams and often coming up short!! We're presuming that he's going through a growth spurt and that his weight gain will slow down soon.  In the mean time we have another appointment next week to keep an eye on this.  He's currently between the 25th to 50th percentile for weight for his age and only the 5th to 10th percentile for his height.  Based on his weight, the 1250mls (5 cans) of formula/day that he's being fed is just under his requirements!

I don't know about the rest of you, but I'm pretty happy that I don't have someone keeping such a watchful eye on my eating habits and weight gain over the holidays!!

Tuesday, December 28, 2010


It's been a very busy few days full of fun times with family, lots of great food and of course presents!!  We were all very lucky again this year to be completely spoiled.
It all started on Christmas Eve at Damian's parent’s house, followed up with Santa's arrival at home on Christmas morning.  We hosted Christmas dinner for my Mom and Bill and Damian's parents.  On Boxing Day it was off to my Dad and Lois' for day three of Christmas!  I'll try and get some of the pics from the last few days up soon.  We've just been so busy playing trains and trucks, opening Barbies and Pet Shops from all their excessive packaging, and of course eating all that Christmas baking!!
Yesterday, Damian had to return to work, but the kids and I enjoyed an extremely lazy pajama play day. I did start trying to find the floor through the toys and am wondering where all this stuff is going to go!?
Throughout all of this we had no nursing on Christmas Eve and as much as the adrenaline keeps you going all day, by eight o'clock when things started to quiet down we were both watching the clock, completely exhausted.  Surprisingly, we had nursing on Christmas Day night, which was fabulous.  Unfortunately, she really wasn't feeling 100% and ended up calling in sick on Boxing Day so we had another no-nurse night.  I know that she really wasn't feeling well last night but she toughed it out knowing how much two nights in a row without nursing over the holidays would really suck!

Saturday, December 25, 2010

Merry Christmas!

From our home to yours, we wish you a very Merry Christmas! 
Hope everyone enjoys today surrounded by family and friends.

Thursday, December 23, 2010

Santa pics 2010!

We tried Caelan on Ry's lap first but that was still too close to Santa, so he got his own special gift wrapped seat.

Wednesday, December 22, 2010

Mom:  Darcy did you take my pink body spray perfume?

Darcy:   No

small pause...

Mom:  Darcy, if you were going to take my pink body spray perfume, where would you put it?

Darcy:  In my craft drawer.  hmmm... so, yah, I took it.

Mom:  (sigh) Thought so.

Tuesday, December 21, 2010

Christmas Concert

I was able to get all the wrapping done this morning and make it to the girls' Christmas Concert at school this afternoon.  The girls were fabulous and it was nice to see lots of familiar faces on stage.  Unfortunately, none of the pictures I took turned out at all... Here's the proof :(

Darcy's French class performed a folk dance 'La queue du loup'.  Darcy's the one in the center, smiling, wearing the striped top and jeans.  Here she is later in the dance, with a boy... apparently his name is Caleb.  To me it looked like she was going to whip him off the stage... she said HE was pulling her!  Another out of focus action shot.

For her English class they sang a Candy Cane song to the tune of Lollipop which was very cute.

Ryland's class, along with a Grade 6 class, sang the finale songs; Glory Alléluia and Joyeux Noël.  It was a huge group on stage and impossible for me to get them all.

Ry's back row, green tee with white sweater
Very proud of both my girls. 

Should also mention that Caelan had a blast playing with his nurse all day today and had no issues with Mommy being in the house but not with him.  When I left to go to the Christmas Concert he blew me a kiss and I got a simple wave goodbye.  No objection at all, which is a good thing, really.  He was pretty happy when I got home though and came scooting over to the door in fast speed to give me a big hug.  Knowing you were missed is kind of a nice feeling.

Monday, December 20, 2010

things are different this year

It's not nearly as easy as it was last year to wrap Christmas gifts with Caelan awake.  Oh, did we ever have fun trying though!  Caelan was especially helpful with the tape...  I gave up after a while.   To think, I didn't want to have any wrapping left to do this week!
Luckily, or maybe not, we won't have a nurse again this year on Christmas Eve so I've scheduled some respite time for tomorrow and hopefully I will be able to get all the wrapping done without assistance from Caelan.  I'm also looking forward to attending the girls' Christmas Concert at school in the afternoon.
Other than the wrapping we're feeling pretty organized for Christmas.  The girls are getting excited and counting down the days.  It's weird this year with the girls in school right up to and including the 23rd.  Not sure I'm a big fan.  I kind of like having them home to decorate sugar cookies and build gingerbread houses, watch Christmas specials and go skating or tobogganing.  I guess we can do all of those things just as easily after Christmas.  On the plus side maybe they won't have that same crazy hyper anticipation that they usually would before Christmas... but what's Christmas without all the build up?!

Friday, December 17, 2010


So while I was folding this:
I turned around to see this:

I missed his real cheeky grin because I was trying so hard not to pee my pants!

flashback friday

Last weekend we had our annual Christmas party with the Cubaynes.  Best friends, great conversation, lots of laughs and fabulous food!  Cubaynes stayed over and we were able to get this picture of all the kids in their jammies in the morning.

2010: Caelan, Lucas, Darcy, Ella and Ryland
Tam and I were talking about how long it had been since we had a picture of the kids under the tree.  I didn't think it had been that long but when I went back through the photos I realized it had been since 2006!! 
2006:  Lucas, Ryland and Darcy
Lots of changes in four years!

Thursday, December 16, 2010

urology and genetics

This morning we headed into CHEO for an appointment with Urology.  What a fabulous, quick and painless visit.  There was no examination, just the Doctor and Resident looking over Caelan's recent ultrasound.  Everything looked great - Hooray!  No UTI's since summer of 2009 so the prophylactic antibiotic that Caelan takes every day seems to be doing its job.  We're not going to make any changes as long as things are going well.  There was talk of perhaps having to repeat the STING procedure Caelan had done in April or the possibility of getting him off the antibiotic but we're going to wait a while longer and just see how he does.

From there we went to my fave place (said with LOTS of sarcasm), genetics. Actually I shouldn't complain because it wasn't nearly as insulting as I remember it being.  Maybe it’s because we'd been through the entire head to toe exercise last year, the one where they dissect everything about our son.  Caelan handled it all pretty well, well everything except measuring his head circumference.  He had to throw a fit over that one... oh well, and he's never very happy when they measure his length either.  He has some serious issues with a measuring tape!!  Pictures were taken of his facial palsy, his typically CHARGE ear, his square palms and hockey stick crease on the palm of his hand. Here are his 'stats' at 26 months old:
  • Head Circumference:  48.5cm
  • Weight: 12.33 kg (about 27 lbs.)
  • Height:  83.5cm
The Doctor was really happy with all the progress that Caelan's making.  She was thrilled with the "one good ear-one good eye" thing, since she was the one that gave us all the doom and gloom back in the NICU about deaf-blindness common in CHARGE and the resulting learning challenges.  I remember her spreading her arms to explain that at one end of the spectrum or on one hand, children with CHARGE were able to attend university and have a career.  While on the other hand or other end of the spectrum children with CHARGE were never able to live independently.  Then she advised us that because of the colobomas in each of his eyes his vision didn't look promising and because of some missing pieces in his inner ear that didn't show up on the MRI, his hearing didn't look promising... so she told us to prepare ourselves for him being at this (shaking the low- never living independently hand) end of the spectrum.

Now I know this wasn't news that she had pleasure delivering two years ago, but I gotta tell you it still felt really good to be able to go in today and show her everything Caelan is able to do!!  AND he's just getting started!!!

The best news is that our follow up appointment with genetics is in TWO years!!   Imagine all the showing off Caelan will be doing at that appointment!!!


Apparently this is a square palm.  Can you see the crease that looks like a hockey stick? 
The hook ends between his index and middle finger.
 And just for fun, because fingers goes with toes...

Wednesday, December 15, 2010

today marked

10 days until Christmas!!  ho ho ho!


My silly boy!  Yesterday, he flipped this small end table over and had some of his toys in it.  He thought it was hillarious and would show me over and over again. Today, he managed to get himself in it and that was funny too until he tried to get out.  His attempts at scootching his way off the table were unsuccessful since his bottom was stuck and he either didn't know or wasn't strong enough to lift it up over the ledge.  He was getting frustrated but still smiling as he scootched the table across the living room towards me!  Gosh, this boy makes me laugh! 

Tuesday, December 14, 2010

dental clinic

Today was Caelan's first trip to the dentist!  I meant to bring the camera with us to capture some pictures of the occasion but with the chaos that ensued after waking up to all that snow I forgot.  Our drive into CHEO took four times longer than usual and we were just over an hour late for our appointment.  What a way to start the day!

I’m happy to say that Caelan handled his first trip to the dentist much better than I thought he would.  Now, don’t get me wrong, he didn’t sit still with his mouth wide open all smiles for the dentist and in complete cooperation.  Far, FAR, from it… but he didn’t hold his breath to the point of passing out which is what really impressed me.
It really was a quick examination to basically confirm that all of Caelan’s baby teeth are in and that there is major tartar build up.  It is apparent that Caelan would never tolerate a routine dental visit with the amount of cleanup work that needs to be done.  Therefore, O.R. time has been booked for February 1st, when Caelan will go under general anaesthetic to have x-rays of his teeth done, a good cleaning and anything else that they find that needs fixed, repaired.  After that we will have regular, frequent visits that will hopefully keep the tartar build up to a minimum and appointments short enough that Caelan will be able to tolerate it.
In the meantime, we have to brush his teeth.  Regardless of how much he fights or holds his breath.  Our plan of attack is to choose a song.  We’ve had great success with this method when changing Caelan’s trach ties.  Every night, we always sing “Wheels on the bus”.  By creating a routine, Caelan knows what to expect, he knows how long it’s going to last and maybe most importantly, that there is an end.  We’re hoping that in time Caelan will learn that brushing his teeth is not negotiable and not something to fear. 
Any suggestions for a song??
Oh and after that we went to pick up Caelan’s new glasses and they’d ordered the wrong colour!?!?  Three week wait! L

Monday, December 13, 2010

They're here!!

I ordered the girls dresses for Auntie Toad's wedding on line and saved a bundle, but I have to admit I was a little nervous when I went to pick the box up at the post office...  I thought it was a bit small for everything I had ordered.

Darcy was a little more excited than what I captured here!

It was all in there though!  This box contained a flower girl dress for each girl, bolero jacket for Darcy, gloves for Ryland and two pair of tights. Couldn't believe it and what a relief, it all fits!!  I guess the girls aren't as big as I think they are, or their dresses aren't anyway! You won't be seeing any sneak peaks on here though... you'll have to wait until the wedding in February to see pictures of the girls wearing them!

I went to pick up the box on Saturday morning before Auntie Toad's Bridal Shower, so we opened it after everyone had left.  It was pretty exciting and I was happy that we got to open them all together.  Special times!

Friday, December 10, 2010

Foto Friday

Look Ma, no hands!

what a week!

This week has been a bit hectic...

We had Blind Low Vision Therapy on Monday, which went really well and Caelan is still enjoying his bouncy horse thingy!

Tuesday we made the drive into CHEO for a Nephrology blood pressure check.  Caelan refused to cooperate.  Apparently having your blood pressure taken is extremely painful or insulting because Caelan goes nutso.  The nurses and I were singing and blowing bubbles, doing everything we could to try and distract him or make him happy enough to get a decent reading but despite all our efforts it never happened.  Very frustrating when you know this is something that really doesn't hurt at all!  The blood pressure reading they were able to get was so bad that the nurses didn't even document in his chart, knowing that it was ridiculous and innacurate.  We'll try again in January.

From there we walked over to the Eye Institute in the General Hospital to order Caelan's protective glasses. I don't know how we're going to convince him that these are a good thing to wear.  Even just trying them on for brief periods in the store he was whipping them off faster than you'd think possible!  Luckily, the ones that we've ordered have a band around the back to try and keep them on, although it didn't slow him down much in the store!  They weren't supposed to be ready until next week but we got the call yesterday that they're ready to be picked up. 

Wednesday we were finally back at OCTC for occupational therapy.  It's been a month since we were there because of my cold and unfortunately while we were there it became very clear that Caelan is starting a cold.  He did pretty good but you could tell he wasn't feeling the best.  The coordinator for the preschool was in to do an assessment and will periodically pop in to his appointments between now and September when hopefully he'll be attending the preschool.    She was a great lady and I'm really happy we got to meet her.  We were given a tour of the preschool and explained how the program works.  Caelan would be attending about three days a week in a morning or afternoon program.  I'm still so disappointed that he's unable to attend in January. The spots are all full now :(

From there we rushed home for our ASL lesson.  It's a little scary because the curriculum that we follow has fifteen lessons or chapters in it and we're already on lesson thirteen.  How can that be?  Am I supposed to be fluent in just a few more lessons... because I'm so NOT!!  It's just practice, practice, practice.  We have to do a better job of integrating it into all our conversations not just when speaking directly to Caelan.  It's a lot to think about when your still learning.

Yesterday, we had a visit from our dietician.  It's been over three months since we last saw him and Caelan lost weight!!!!  Grrrr... so disappointing.  He was up in the 50% for his age, and he's dropped to the 25%.  It's weird though because he didn't really lose that much weight, only a few ounces so I don't really get it.   To look at him, he certainly doesn't look like he's fading away!   However, the dietician would like to increase Caelan's feed from 1000ml/day to 1250ml/day.  We're trying to figure out how to do this and will be playing a bit with his feeds over the next couple days.  Our first option is to run 750ml continuously overnight at a slower rate, and continue with his two regular feeds of 250ml during the day.  Should be interesting.  It's quite the increase and I'm not sure how well Caelan's tummy will tolerate it.  The dietician will be back next week to see how it's going.

In our spare time we've been trying to finish up Christmas shopping, cooking and baking in preparation for a crazy weekend ahead.  We're hosting a Bridal Shower and a Christmas Party, attending Ryland's Dance Recital and a Birthday Party!!! 

Tis' the Season!!

Thursday, December 9, 2010

Proud of my girl

Look at what Ry brought home from school from the Legion on Tuesday

Dear Ryland;
As a winner in this years Remembrance Day Poster, Essay and Poem contest you are invited to attend a group photo session and receive your prize.  This will take place in....
Congratulations and hope to see you there.

Hooray Ryland!!  so proud of you, xoxo

Tuesday, December 7, 2010

boing, boing, boing!

Doesn't this look like FUN?!?!  We had a visit from our Blind Low Vision Therapist on Monday and she brought this along.  Caelan thought it was pretty cool so she left it here for him to bounce on over the holidays!

He definitely knows what he's supposed to do and is getting better at the whole bouncing thing.  We were all so impressed that he knew instinctively to hold onto the ears.  Sure helps that he's got two big sisters bouncing around the living room singing "boing, boing, boing!"

Monday, December 6, 2010

Before I forget, I just wanted to let everyone know that we changed Caelan's trach back to the normal size this weekend without any issues.

Sunday, December 5, 2010

O Christmas Tree!

It was a work in progress for a couple days.  Caelan and I put the tree up on Thursday night.  On Friday I got the lights on before the girls got home from school and then the kids and I put on the decorations in the evening.  All that's left is for Damian to put the 'topper' on!

Friday, December 3, 2010

I'm loving this quote

“But we live through the fine days without noticing them; only when we fall on evil ones do we wish to have back the former. With sour faces we let a thousand bright and pleasant hours slip by unenjoyed and afterwards vainly sigh for their return when times are trying and depressing. Instead of this, we should cherish every present moment that is bearable, even the most ordinary, which with such indifference we now let slip by, and even with impatience push on.”

Arthur Schopenhauer

Thursday, December 2, 2010

Christmas Picture 2010

FIRST - Check out how much Caelan has changed in the past year!!  I can't believe it, especially when I see this picture beside the one of the five of us taken last November!!

I didn't want to post the Christmas picture of the kids until our Christmas cards were mailed and possibly received by most.  The picture was taken on November 12th.  oh, what a day!

Ryland did fabulously and tried really hard to help out. If anything, she was over enthusiastic.  Go figure, my little drama queen.

Darcy wasn't feeling the greatest and was in the middle of the horrible cough and cold that still plagues our home.  She had difficulty remaining focused and looking at the camera, therefore, many really good pictures of the other two had to be discarded because you could only see the top or side profile of Darcy's head!

Caelan... oh, my Caelan.  Couldn't - Wouldn't sit still to save his life!  If we tried to get the girls to gently hold him in place he lost it, big time.  He thought sitting at the back of the studio against the screen was the place to be and wanted the girls back there with him.

We were lucky enough to have arrived early with nobody else scheduled ahead of us.  They took us right away.  After I don't know how many pictures were taken (LOTS!) we were shuffled out to take our pick of the shots taken.  OK.  Getting a good picture of three less than cooperative children is IMPOSSIBLE!!

I couldn’t choose any of them.  I refused.  Luckily there was still time before the next appointment and we were given another chance.  Back in we went.

It didn’t really go that much better.  This shot was by far the best one.  I know, hard to believe, eh?  Caelan was scooting all over the place.  We emphasized to the girls that they just had to look at the camera and keep smiling and hopefully Caelan would scoot into the frame with a smile, and voila!  That’s what we’ve got.  Caelan is probably scooting by about two feet in front of where the girls were sitting. 

So, to all of you who’ve enquired, and the rest of you that have wondered, no this picture isn’t photoshop’d.  Heck, I’d like to think that if it were it would have turned out better!!

Wednesday, December 1, 2010

how'd that happen?

How can it be December already??  Where does the time go??

Instead of looking at what I have left to do I should be proud of all that I've accomplished in preparation for this holiday season.
  • Christmas cards are in the mail
  • majority of presents are bought
  • two homemade gifts are finished
  • the pantry is stocked for baking
  • three homemade meals are in the freezer
  • space has been made for the Christmas tree
hmmm... I'm not sure that makes me feel better.  True to my nature I can't help but think of all that's left to do; the shopping, the wrapping, the crafting, the baking, the cooking, the decorating, the visiting and the partying...  I'm excited but can't help but feel a bit anxious too.