Darcy

oh how you make me laugh.

Recently though, you've mastered pushing all my buttons and then some.

So, lately, I've loved you most when you're asleep, xo

Heading south

Enough is enough!  We're all tired of this season.  It's not that it's been one of those terribly bitter cold winters, or one where we've had a ton of snow, or freezing rain.  Please don't let me jinx this, because I can't even complain too much about the germs.  But all that being said, we've still had it!  We all need a break.  A winter getaway as our daughters so fondly call it. 

We're heading south!

We've decided to join my Mom and Bill in sunny Florida.  We'll be driving down... just shoot me now  That's two twelve hour days in the car with three kids...  I think we've lost our mind but it will be worth it.  We have no intention doing anything Disney this time around, just fun around the pool and playgrounds, enjoying the warm weather.  I'm even hoping for some good ole' humidity to clear out our boy's trach.  He's been so dry this winter we've had to rely on regular saline mist treatments and still deal with lots of plugs.  So here's to a 'no plug' vacation!!

So soon, soon, soon, we'll be in the sun, sun, sun!!  Can't wait!! :)

playdoh

A couple weekends ago, Darcy and I tried to make purple playdoh.  I say 'tried' because as much as we definitely made playdoh, it didn't really turn out very purple.  oh well it still ended up being hours of fun :)
If anyone knows how to get it really purple, I would love to know!

 

foto friday

Oh how I love you, xoxo

We have an appointment at the bank today to buy our RRSP's before the deadline for our 2010 taxes.  That meant that last night I spent the evening doing our taxes.  What I love about this program are the RRSP optimizing tools.  Basically it helps us figure out how to get RRSPs for free.  Or at least that's how I think of it.  Gotta love that!

Still think I could have used something stronger than tea....

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the Lord above,
This Special Child will need much love.
 
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
 
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.
 
So let's be careful where he's sent,
We want his life to be content.
Please Lord, find the parents who
Will do a special job for you.
 
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
 
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
 
 
by Edna Massionilla
December 1981
The Optomist- newsletter for PROUD
Parents Regional Outreach for Understanding Down's Inc.

getting out of the funk

Recently I had someone remind me that I was scheduled to return to work in May.  May 2011.  In other words, three months from now.  Thanks.  I had really been enjoying my ignorance on this fact up until then. 

Unfortunately last week it put me in a real funk.  I started feeling completely overwhelmed about... well... everything.  You name it and it was freaking me out.  It would be really nice if that kind of feeling kicked me into high gear and motivated me to tackle any of the things that were bothering me.  Instead, I do the opposite.  I putter about and accomplish nothing.  That leads to wallowing about all the things I haven't done, getting more upset by the minute that they aren't getting done while I simply think about them with contempt.  It takes great effort just to get the simplest things done and I don't even feel good about accomplishing them.  It's depressing and not something I'm proud of.

Today however, I had someone coming over to give me a bit of a break.  Knowing that I was feeling this huge panic about getting silly stuff done before returning to work, they offered to come and play with Caelan for an hour so I could accomplish something.  It was just the kick in the butt I needed.  I woke up this morning, determined.  It felt good.  During my hour I tackled the pile on top of the filing cabinet.  ugh.  To give you an idea of how bad it was most of the paperwork ended up being shredded, not filed, because it was already so old!!

Now I just have to keep the momentum going. So far so good.

why do we buy toys?

Family Day, Monday, February 21, 2011

Edit:  just found this in my drafts folder and am backdating the publishing... Feb. 2014

power outage

Power didn't come back on until sometime around midnight.  No big deal for us sleeping, although Darcy wasn't asleep before the power went out and of course how could she possibly fall asleep with no power!!!  I get it, no night light and that darn wind howling.  I snuggled in with her and promptly fell asleep in her bed, waking up sometime after the power came back on!

For Caelan, power outages are a much bigger deal.  Thankfully his feeding pump was still fully charged, since we usually plug it in over night to charge it.  Caelan's still on a continuous feed all night.  He gets three 250ml cans, starting around 9pm and running until close to 8am.  If the feed pump battery hadn't been charged it would have just meant more work by manually feeding him with syringes full of food, very slowly all night...

The even bigger problem is that we can't run the compressor for his humidity. 

Caelan has been great at coughing up his secretions, but this winter he's been much drier and getting a lot more plugs.  We've been using his humidity all night while he sleeps and also during his naps.  In addition, we've had to frequently give him saline mist masks to help loosen the secretions.

Yesterday, Caelan and I were out and about around town.  We had left the house shortly after eight in the morning to go to OCTC for speech language therapy.  After that we stopped by Mommy's work to see just how many new faces there were there... and let me tell you there were A LOT!!  I think I counted maybe a dozen people in distribution that I recognized! Ugh.  That's what happens when you're away for two and a half years.  Anyway, I digress...

We went to the bank, the grocery store and the pharmacy to pick up Caelan's milk.  We didn't get home until close to three and our opportunity for a nap had long since past.  All this to say my boy was getting pretty dry but seemed better after a few drops of saline.

We enjoyed a fun movie night with the girls, watching Narnia and didn't get to bed until around 9pm.  Caelan was very dry by then...  and then the power went out just before 9:30!!!  I spent the next half hour looking for and lighting candles (and trying to keep Darcy calm).

Our only option in this case is to try to get Caelan to keep his swedish nose on.  The swedish nose is a small contraption that is placed over his trach to create humidity.  He doesn't tolerate it during the day but apparently he has no issue with it while he's sleeping!  Thank goodness!!

Friday night

What an absolutely beautiful day!!  +11 degrees, the sun was shining, coats were left behind and spring was in the air.... unfortunately as I type this the temperature has dropped drastically and the wind is howling ferociously around the house.  I hate the wind.  It freaks me out.  I hate hearing it try to blow my house down... so I'm going to try and ignore it.

... and that's when the power went out.

comments

Ok.  This is my unabashed request for comments.  I want to know what you think!!  Your comments make me smile and encourage me to keep blogging.  I'll take the good, the bad and the ugly.  Bring it on!

PLEASE...

Now for those of you who say that you're technologically inept- and you know who you are!! - it's not complicated.  Just follow these simple steps.

At the bottom of each post, contained within the blue bar is this:

Posted by Tanya at 00:00 PM 0 comments 

Click on the word "comments" and start typing in the box provided.

You can't post your comment without completing the "Comment as" drop down box.  It's easiest if you've already logged into your google account, but if not, you can still select "Anonymous" and just sign your name at the end of your note so I know who you are!!

Now you're ready to click "Post Comment". 

The last step is one of those fancy security words that you have to retype and you're all done.

Thanking you in advance for all your wonderful comments!!!

Report card Wednesday

I'll start with Caelan.  He did great at occupational therapy.  He was in a much better mood than he was at our last appointment.  He was eager to try new things and worked on them until he got them.  I was happy too that he demonstrated some skills that I mentioned he'd been doing at home, like drawing in a circular motion and not just up and down.  He was happy and smiling exercise after exercise and really didn't want to go when our hour was up.  So he get's a A for being a Superstar!

The girls brought home their report cards yesterday and both of them made us very proud.  Three A's each and the rest B's.

I have to admit that I was more than a little surprised to read that "Darcy often assumes the leadership role..."  Really?  This is the girl that doesn't speak in social settings.  It also says that "Darcy exhibits great initiative and approaches new learning situations with confidence."  Way to go Darcy!!

Ryland was thrilled to read on her report card that one of her Next Steps was to "continue to read everyday".  Really?  Did they have to bother putting that in writing.  We can't keep her out of her books!?!?  I pointed out to her that under French Language it also said to "read daily in French to maintain and improve reading skills and to increase familiarity with and exposure to new words."  We'll have to start checking out French library books.  Bet that'll slow her down a little.

the end is in sight

Today was the much anticipated follow up appointment with Dr. V from ENT.  Based on what he said after the scope last week we weren't really sure what to expect but he started right into discussing our surgical options.  He really is an amazing Doctor.  He took an extraordinary amount of time explaining and re-explaining the surgeries for us and answering all of our questions.

One of my first questions for him was why he initially wanted to wait another year.  His answer surprised me.  Basically it was because it would give him a bit more room to work with during the surgery since Caelan would have grown that much more.  :)  Ok.  That makes sense, much better than simple procrastination!  I'm also glad I didn't put too much hope into the idea that it was because there was still a chance that Caelan's vocal cords might still come back.

The surgery is called "lateralization of the vocal cords" through a laryngotracheoplasty approach with a rib graft.  Yep, we got him to write it down for us!  The idea is that he'll pin the last third of Caelan's vocal cords open to allow him to breath on his own.  By trying to leave the first two thirds of his vocal cords together he should have some kind of voice and it will help reduce the risk of aspiration.  The vocal cords are held apart with the rib graft.  I also confirmed that post surgery there should be no need for humidity, c-pap or oxygen.

There are two different ways this surgery can be done.  The first is kind of a 'sprint' version.  Everything is done, including removal of the trach and suturing up the stoma.  Caelan would remain intubated for 7-10 days and be highly sedated to allow the cords to heal.  He would be in hospital for about two weeks.    Our major concern with this approach is the level of sedation that Caelan would require to keep him comfortable and prevent him from pulling out IV's and the intubation tube.  In all likelihood we would be watching our son detox and go through withdrawals again.  Never fun.

The other option is a little bit more relaxed, longer, more like a marathon.  In this version the tracheostomy would remain after the initial surgery.  In addition they would have to add a stent (a tiny tube to hold the vocal cords open and in the new position).  The stent isn't required in the first option because the intubation tube serves the same purpose.  Six weeks later he would return to hospital and there would be another surgery to remove the stent and the tracheostomy.  Our concern with this approach is that Caelan would have to have two surgeries; that's double the risk of infection and all else that can go wrong with going under anaesthesia. 

No easy decisions.  Fortunately we don't have to make one right now.  Dr. V suspects that we're probably looking at about a 6 month wait for booking operating room time.  He'd also like to make sure that he scopes again a few weeks before surgery to make sure there are no surprises.

The good news is that it looks like our son will be trach free before the end of the year.  I can't begin to describe the high that Damian and I are on today!!  We are so excited and dreaming big about vacations to the beach to play in the sand with our three munchkins.

Dinner conversation

Darcy:  So this is like we're eating head potatoes, right?

Ryland:  Aren't they called scalloped potatoes Mom?

Mom:  Yes, these are scalloped potatoes, and Darcy what are you talking about?

Darcy:  That's what I said scalp potatoes.

Mom:  No, not scalp, scalloped potatoes.

Darcy:  Exactly, same thing.

scope

In addition to the dental stuff we had Dr. V from ENT in there to do a bronchoscopy.  That's the scope that is done to check Caelan's airway and to determine if his vocal cords are moving.  The last time we attempted this, Caelan held his breath and we were unable to check the vocal cords.  It was suggested at that time that perhaps the next scope would have to be done under anaesthetic.  When Caelan's OR time was scheduled with dental I made sure to notify ENT and they were able to coordinate the scope for the same time.

Dr. V assured us that everything looks fine.  He had no concerns with Caelan's airway, but those vocal cords are still stuck together.  grrr.  This is what we expected but it was still disappointing.  What was surprising was that Dr. V said we'd check them again next year.  Huh?  I thought the vocal cords nerves, if they were going to come back, would fix themselves within a year.  We gave them an extra year and now he wants to give them another one??  Does that mean there's still hope?  Or are we simply procrastinating on the alternatives.  At our last appointment we briefly discussed a surgery where the vocal cords were pinned open and I thought we were on the same page looking at this spring as a possibility if the cords weren't moving in yesterday's scope.  We have an appointment with Dr. V next week to discuss the scope in more detail and determine how aggressive we want to be as far as possible surgery is concerned.

back in the waiting room

Yesterday we found ourselves back in that dreaded waiting room for parents at CHEO.  Thankfully it was not nearly as long or agonizing as some waits in the past. 

Caelan was having his teeth cleaned.  Forgive me if I have referred to this as surgery because it wasn't.  Just your basic x-rays and dental cleaning - ok well maybe the cleaning wasn't completely basic because those were some really yucky teeth.  However, because it took place in the operating room and under general anaesthetic, it's felt a lot like surgery to us.

We heard something while Caelan was in recovery that we don't get to hear very often.  Normal.  The dentist said Caelan's teeth look normal.  There is very little about our son that is described as normal.  To hear that he has all the teeth he's supposed to and that the x-rays look good was such a relief.  Everything went well with the cleaning and there are no major concerns.  Just keep brushing - or trying to at least!

This photo was taken last night after we tried to brush Caelan's teeth.  Look at those pearly whites!!  Obviously, Caelan still hates getting his teeth brushed.  He's a quick learner and as soon as we start singing the "brush your teeth" song or if he sees the toothbrush, his hands are over his mouth.  It's rare now that he cries full out with his mouth open, more often his lips are pressed tight together in a big pout!  It was so much easier to get in there and brush when he was screaming at us.

CHEO chart

This is Caelan's chart at CHEO.

We're just about done volume 10 and as impressive as that is it's not the part that has me excited. 

It's that this last volume has taken us the longest to finish. 

We've been working on it since April 2010 - that's almost an entire year!!!   I was so excited when I saw this.  It's absolutely fabulous, it means that Caelan's been healthy and we've been able to stay clear of there.  Obviously, we are there regularly for appointments and tests but the notes for those don't add up quite like extended overnight stays in hospital.  Yeah us!!

My Sister's Wedding

What a great day! The sun was shining and it wasn't too cold... as far as February weddings go, I don't think you could have asked for a better day. 

I didn't get nearly the photos I thought I would - not one of the bride and I, Tam and I, or all three of us!  Not even one of me with Ry and Darcy!!  Maybe that early morning affected me more than I thought because I can't believe I didn't get any of those.  The hair and makeup team showed up at my Mom's at 4:30 in the morning and Tam and I were first up.  It was rough but that's what you've got to do for a 10am wedding.  Thank goodness the professional photographer didn't show up until 7am!  Can't wait to see the shots he got!  Here are some of mine.


Lacing up her dress



Beautiful bride in the limo



just a trim!

I made my husband all teary eyed as I cut off my sons long locks. 

I was only brave enough to do the back.

That was traumatic enough.
Love how curly his hair is fresh out of the bath, xo.

January 30, 2011

crawling??

The pictures might make it look like he's crawling already but he isn't. 

He's faking it.  Imitating us.  Lifting his hands up and slapping them down. 

He does manage to move forward with a lot of effort.

Just staying on all fours is a lot of work for him since his hips are really loose.

He tends to flop a bit like Bambi on ice.

These pics were taken a week ago on January 28th.

snow day!

The first big snow storm of 2011 has hit and it hasn't stopped snowing all day!  The girls had no school since buses were cancelled and Damian was lucky enough again to have the snow fall on his day off!!  It's okay there was plenty of shovelling to do at home so he didn't feel like he missed anything at work.


Oh yah, and something on the snowblower broke, again.



Damian shovelled the snow so the girls have a small hill to slide down.

 

day at CHEO

Well it was a long day yesterday, as days spent at CHEO usually are.  I'm happy to say it was uneventful.  No surprises.  Thank goodness.

We started with the pre-assessment with anaesthesiology.  It actually went quite well.  Caelan cooperated during his blood pressure check and weigh in, which doesn't happen very often.  It may have had something to do with the pretty young nurse who had a Thomas the Tank Engine picture for him to colour :)  As I expected there are no concerns regarding Caelan's dental day 'surgery' next week.  When your child goes under anaesthetic there's always a worry but knowing it's just to have his teeth cleaned makes a huge difference. 

From there we quickly met my Dad at the front door.  He was kind enough to drop off a pair of Lois' shoes that I was hoping to borrow for the wedding.  Unfortunately, when I got home and tried them on they were too small.  Very disappointing, especially since it meant I had to go out shopping for some last night! 

We headed off to OCTC to see Julie for Caelan's occupational therapy.  Caelan must have already had enough because some exercises that he did easily last week were a battle of the wills this week.  Oh, we haven't seen avoidance tactics like these in ages!!  It was an interesting visit, but definitely not some of Caelan's 'finer' moments.  

Along the same subject, we received the report from the assessment done back in November.  I understand it's part of their job to analyse but I try not to.   It is always nice to review what goals Caelan has succeeded at and hear how well he's progressing.  The part that always reminds me that we've still got a ways to go is the part that I don't like so much.  At the time of the assessment Caelan was 25 months old and was "demonstrating the functional performance levels;  Fine Motor: 12-16 months, Visual Motor Integration: 18 months, Activities of Daily Living: 15-18 months, Perceptual/Conceptual skills: 14-20 Months, Play: 12-18 months."  The exciting part is that since this last assessment he's already learned so much more!!  He is a smart little boy. 

After OT we had two hours to kill before our appointment with Cardiology.  We had a quick bite to eat and then headed over to ENT just to confirm that Dr. V. had us in his schedule for the scope during Caelan's dental work.  He did.  Then we went up to Ophthalmology to follow up on rescheduling an appointment that had been cancelled two weeks ago.  I have to say that most of the staff at CHEO are fabulous.  They're friendly, understanding and just generally nice people, EXCEPT the receptionist in Ophthalmology.  She's AWFUL!  She's rude, disinterested, and unhelpful and acts like you're interrupting/bothering her.  I psych myself up for talking to her and try very hard to remain calm when in her presence.  It takes a lot of effort.  As for those of you that are optimists, it's not just that she's been like this once and I've hit her on a bad day.  She's like this every time we're there or in the adjoining clinic.  

After speaking with her I needed to breathe so Caelan and I walked the halls for a bit.  We visited all the old hallways that Damian and I would walk way back when.  Have to admit, still hits ya and can become overwhelming.  Not memories you like to revisit and I don't know what possessed me to do it then.  Maybe to remind me to be grateful for how far we've come. 

I gave up on trying to waste time and arrived in Cardiology an hour early for our appointment.  It was nice to see the waiting room empty.  I got Caelan out of his stroller and we were able to play for a bit.  We'd heard that you were now able to choose a movie to have during your exam... can't remember if it's the ECG or the EKG?! - it's the one where they do the ultrasound on your heart.  Anyway, we haven't been there in a year so this was our first time.  I was hopeful that this would mellow Caelan out enough to tolerate the exam.  Not so much.  He was extremely frustrated with the stickers on his chest and very much offended by the ultrasound... so much so we needed to change his diaper when all was said and done!!  The other exam with the gazillion stickers on his chest went better, but not by much.  He gets so upset when they start sticking those things on him and attempts to get them off as quickly as he can.  Surprisingly, when it was time for the nurse to weigh him and take his blood pressure he was calm again and that's usually enough to have him lose it.  Maybe we're over that stage.   Wouldn't that be nice?  Oh let me dream :)  At this point, the Cardiologist explained that these appointments are really just housekeeping.  Caelan's heart is all good.  phew.