OCTC Preschool

We received some disappointing news today. 

The director from OCTC Preschool called to ask if we were still interested in Caelan attending preschool in the New Year.

Yes, yes, yes!  I was so excited, thinking this is the call we’ve been waiting for.

Unfortunately, this will require longer to set up since - believe it or not - Caelan is their first trached child who will require nursing assistance while there.  They’ll have to apply for the additional funding. 

Really?!?!?

We were hoping to get him into the winter session starting in January but now it looks like it will be September 2011 at the earliest.

I was so hopeful that this would happen for January.  I think it would be a wonderful environment for Caelan to experience so many different things.  It would give him the opportunity to learn so much. 

I’m not giving up.  I’ve decided to call CCAC and enquire about a nurse accompanying him to preschool for the winter session until OCTC is able to get the funding.  Keeping my fingers crossed that because it’s for a set period of time they’ll be accommodating… not that they’ve ever been before.

Finally starting to feel better!

I know that I’ve been neglectful in my writing the past week or so and I have to admit that I’m finding it harder to get back in the groove than I thought I would.  This will probably be all over the place since I’m still not 100% and can’t seem to focus my thoughts.

Life’s been pretty boring, which is actually a good thing, just not necessarily when you’re looking for stuff to write about.  Although, when you have a son like Caelan you learn to really appreciate boring.  Boring is wonderful.  Boring is staying out of CHEO.  Plus, boring is extra special when you look at how busy December is going to be!

I’m feeling a little overwhelmed. 

I’ve got lots I’d like to get done in preparation for the crazy month of December.  Every weekend is full of fun things to do and Caelan seems to have lots of appointments coming up too.  This week isn’t too bad with only two appointments on Wednesday.  I’m hoping I can get some meals in the freezer for those crazy hectic nights next month.

The great news (NOT!) is that the van has a suspected broken brake line so I may not even get to Wednesday’s appointment.  It’s also keeping me home and out of the shops!  As a result, today was pretty productive.   I did some re-organizing of furniture and toys in hopes of making room for the Christmas tree I’d like to already have up!  Cleaning and cooking, that’s what’s in store for this week.  Not sure how exciting that is but I’m kinda looking forward to it… how sick is that?

25th!

One month until Christmas!

I had a plan this year... unfortunately this cold (now officially diagnosed as asthmatic bronchitis and being treated with a puffer and antibiotics) got in the way of my plan and I haven't been successfully crossing things off my list like I'd hoped.  Oh well.  What are you going to do?  My Christmas shopping isn't in too bad of shape, but I was hoping to prepare some freezer meals and do some heavy duty cleaning before putting up all the Christmas decorations this weekend.

As for Caelan's appointments, we canceled them all again this week.  We have sign language rescheduled for Saturday morning but I have a feeling I'll be canceling that too!  :(

Luckily, Caelan is showing nothing more than some minor cold symptoms.  His secretions are pretty sticky but he's still handling them pretty well.  He's really dry.  I think that has more to do with the change in temperature and having the furnace on again, at least I really hope so! We'll keep an eye on it.  He's been getting a couple saline mist treatments to help him out overnight.  Keeping my fingers crossed that I do better at NOT sharing germs than Darcy!

the cold that never ends....

It's still hanging on, this blasted cold.  It seems to be a strong two week cold as even Darcy is still coughing!!

Last week we missed five appointments because we were sick.  Most of our appointments these days are therapy related and there are very few CHEO appointments.  Unfortunately, last week we had an appointment with nephrology to check Caelan's blood pressure, including urine sample and blood work.  Hoping this will be an easy enough appointment to rebook since we weren't actually scheduled to see the doctor, just get all the tests done.  More follow up required though, since they haven't called me back.  Our other 'real' appointment was with genetics, one I can honestly say I don't mind rescheduling.  Going to genetics is a bit of an emotional beating because the doctor basically goes over Caelan with a fine tooth comb and points out everything that's wrong or different.  Makes me a bit of a grizzly mom.

This week we've got two therapy appointments scheduled for Wednesday and I hope we are able to keep them!  Sign language from last week has been rescheduled for this Saturday too. 

It's weird because when you've got all these appointments you wish only for a peaceful week with no appointments.  A week where you're calendar is open to plan whatever you like, relax, sit back and just enjoy or more likely to get caught up on laundry and housework.  However, being stuck home with a miserable cold is simply not the same thing.  Very little gets done and it feels like whatever does takes everything out of you!

Mom's shower

It's quite a process to have a shower when I'm home alone with Caelan.  Very different from when I was home with the girls.  I remember when they were babies I'd have them playing on the bathroom floor while I showered.  Once they were mobile, I remember showering while they napped with the monitor in the bathroom with me. 

With Caelan I don't dare shower while he naps.  All my showers are taken with Caelan closed in the bathroom with me.  I tend not to lollygag about like I might want to and sort of rush through things as quickly as I can.  There are a number of other things that need to be done for my showers with Caelan that I don't remember doing with the girls.  Here's a peak at my mental checklist;

1. Bring in Caelan's basket of toys, his suction machine and his emergency kit.  I try to schedule my showers around Caelan's feed because when you include the IV pole with the feeding pump it gets pretty crowded in there.
2. Make sure the toilet seat/cover is down or you're apt to find toys floating in there.
3. Make sure the garbage can is raised to higher ground, typically on top of the toilet.  If not, it's contents will be dumped within seconds of you getting in the shower.
4. Make sure the toilet bowl brush hasn't been left in the bathroom. If it is, it must be moved to higher ground. 
5. Double check that nothing is within reach under the cupbard that shouldn't be.  Everything within reach will be spread out all over the floor before I'm out of the shower.
6. Unless you've decided to wash your clothes in the shower with you, don't leave them on the floor in the bathroom.
7. Very important to move the toilet paper roll to higher ground.  Here's what happened the last time I forgot this step.




September 23, 2010

Caelan's now getting to an age where it's just not as cool to play in the bathroom while Mommy's having a shower.  I try to rotate the toys in his basket so there's something different to play with, keeping in mind that they sometimes (ok-often) end up in the shower with me!  I also really have to make sure that the door is closed tight since he's getting good at pulling it open if it's not latched.  He's made a couple of escapes but always comes back to play peak a boo around the door way if I'm talking to him.  Once he escapes, my shower is over, the water is turned off so I can still hear him in the bedroom.  I now make sure the bedroom door is closed tightly as well just so he can't get too far away. 

I wonder if one day I'll miss these times where I have to have a one way conversation throughout my entire shower, playing peak a boo around the curtain and dodging toy missiles that are being launched at me.   I certainly didn't miss it this morning! With Damian home I was able to indulge in a long hot uninterrupted shower that felt completely decadent!

paranoid

just a little bit.

We're all ok though.

Well, sick and miserable, but ok.

scary

Today Caelan brought the terrible twos to a whole new level and scared the daylights out of me.  It's not a day I want to repeat EVER again.

This morning Caelan was sitting on the floor enjoying a cartoon while I talked on the phone with Damian's mom, directly behind him.  We were home alone.  He coughed and seemed to have difficulty and as I reached around to check him my hand brushed against his trach... that he was HOLDING IT IN HIS HAND!

I promptly hung up on Gramma and did my best to get the trach back in.  It wasn't easy and I certainly felt like it was taking too much time.  My mind was spinning out of control on me and I could start to feel the panic rising as time passed and I was still unsuccessful.  As Caelan colour faded more and more I realized I was running out of time, I grabbed a smaller sized trach and got it in.  He was unconscious and not a colour you ever want to see grace your child's face.  I took a big breath and waited for Caelan to do the same.  It was horrible, and that's the understatement of the century.  He was taking too long for me and I grabbed the ambu bag to help him out.  Once he was breathing, I took another big breath and started to shake as I realized just how scary this had been... and how much scarier it could have been.  A lot of 'what if's" started to overwhelm me and I still had to get the ties to hold his trach in place.  We use velcro ties and it was pretty tricky one handed.  By the time his ties were in place I was a mess.

Ask me how long this all took and I'd say it felt like hours, years, a lifetime.  (I'm sure it took years off my life and added a handful of grey hairs!)  My heart still aches and I feel a little like jello, it was quite the adrenaline rush.  In reality, I think it was more like minutes, but they were the longest minutes of my life.

I've said before that I don't know how I could trust our boy to anyone else's care.  How could I ever forgive them if something went wrong?  Today made me think that I don't think I could ever forgive myself either.  How do people do this?  I thought I was so prepared for an emergency like this.  I now know that regularly scheduled monthly trach changes are no comparison for an emergency situation.

Life is precious. 

I've been holding on extra tight to my boy today.

I've never been more thankful.

sick

Caelan, Damian and I all have miserable colds.
Thanks Darcy.
At least she knows how to share. xo

sucker

We still have a ton of halloween treats left and on Friday night I let the girls choose from the buckets (that's right, still plural!!)  It's only fair that Caelan gets a treat too, especially since he impressed us with his carrot stick during dinner.  Of course I didn't get any pictures of that though!  He was putting it in his mouth and definitely working his teeth over it as little bits were missing.  We all get pretty excited when Caelan decides to put things in his mouth.  It's defintely something that has to be on his terms though.  There's no rushing him or even making suggestions  - it's just HIS way. 

Anyway, when he chose the sucker, I figured it would be a good opportunity to try and get a little tongue action out of him.  I still haven't been able to get him to copy me and stick his tongue out, although he will pretend to lick his toy ice cream cone.  Put a real ice cream cone in front of him and it's a most definite no-go.  As Caelan was obviously out to impress, I got the girls to each choose suckers and show him what to do.  No arguments there!  He pretty much had it all figured out anyway...

Look at that tongue... LOVE IT!!

 
We already know that we're going to be spending some time in the dental clinic at CHEO, so I'm not sure this was a great idea, but it was so worth it... look at the proud sticky boy below!

Way to go Caelan!

Note: Not to worry, he didn't eat the whole thing or anything, just some good licks!

a boy and his potato

A while ago Caelan dug into our ten pound bag of potatoes and pulled out his new favourite thing.  I love this!  I think it's hillarious that everytime we're in the kitchen he finds his potato and scoots around with it.  It's not unusual for me to turn around in the kitchen and stumble over this:


 Or to open a drawer and see this:


note the other treasures he's hidden in here

Or find this:

Look at the love...

and the kisses!

He's even willing to share the love and will offer you his potato to kiss!  (Actually, I think he's pretending to eat it as he even smacks his lips.  So, having said that, I guess he's offering you a bite.)  At the end of the day when I ask Caelan to put his potato away, it always goes in the same cupboard and it's not the one where he found the potato initially.

Makes me wonder why we have a living room full of toys when I think he's spent more time playing with this potato than any one of those toys!  Ok I may be exaggerating slightly :)

Makes me smile everytime I see him with his potato...

Watch out, we're on the road!

Caelan and I have recently taken to the roads.  We've started out small, with 20 minute drives into Casselman and Embrun.  We can do these by sticking to some back roads and staying off the major highways.  We have yet to tackle the drive into CHEO, but at least there's a light at the end of the tunnel. 

This is a really big step for us and just shows how much our little man has improved.  A year ago, this day seemed like it would never come.  With the trach and all Caelan's reflux someone always had to be prepared to suction at any time.  This meant that we've been coordinating drivers (mostly grandparents) for all Caelan's appointments.  The prospect of being able to take him to appointments alone and not having to impose on others for drives is something for me to look forward to.  It will give us a little more independence.  Not that I’m complaining, everyone has been fabulous with helping out for appointments and totally willing to do more than a little shopping with us J especially with Christmas coming.

Caelan actually requires very little suctioning throughout the day now.  He’s gotten really strong at coughing up his own secretions from the trach to clear his airway.  There’s still a period in the morning where things are pretty sticky but we manage and generally we’re not up and out of the house that quickly!

I have driven with Caelan and the girls on a bit longer route, about 30 minutes.  Not that the girls are able to suction yet, it’s just the reassurance that there are another set of eyes on him.  Like today, the four of us were in the van and Caelan decided to unplug his mic-key extension.  This results in his milk being pumped into the air and his stomach contents emptying out all over the seat.  Caelan thinks this is great fun – or at least a great way to get some attention!  Unfortunately, the pump does not alarm off for this.  Had I been driving on my own I would never have known he had done this unless I happened to get sprayed by a drop of milk flying through the air.  With the girls in the van with me I was told right away and was able to pull over and put things back together.  For the record, this doesn’t hurt Caelan, he’s only undoing two pieces of plastic and giving away some food… well that and making a lovely sticky mess!  Easy enough solution though, I can plan our solo trips around his feeding schedule. 

Pretty exciting stuff for us.   All those local playgroups better watch out!!

train

Here's my reward for getting Caelan out of naptime and letting him watch a liitle of Thomas the Tank Engine.  He's signing 'train' unprompted!

To nap or not to nap... that is the question

Don't you hate when your two year old doesn't think they need a nap anymore but you still do?
Not only do I value that time to myself, but he really does need it!  If he doesn't nap he'll be miserable while I'm trying to get supper ready and on the table (although that shouldn't be an issue tonight since it's all in the slow cooker) and then into that crazy realm of overtired afterwards.  You know, the one where they seek out trouble at every turn.  It's at those times that I catch him breaking records at emptying Darcy or Ryland's book shelves or tossing their clothes into a full bathtub or cleaning out a laundry basket full of clean folded clothes.  Often on these nights he's in bed and asleep before 8 o'clock and then sleeps until almost 8 o'clock the following morning.   

For that reason, Darcy and I have spent the past 20 minutes hiding quietly in the kitchen while Caelan vocalizes his objections to this torture, a.k.a. naptime.  (Yes, Darcy is home sick from school again today... coughing up a storm and doing her best to infect her little brother and I.)  Caelan still has his bedroom set up in the middle of the living room.  Primarily, because he requires 24/7 supervision and this is the most convenient and comfortable spot for all concerned.  We have no desire on our nights up with him to spend it in an 8X8 room with no television or computer, and let's face it, the boy's got lots of stuff!!  Don't think our nurses would appreciate that much either.  It still works, although I admit to day dreaming about what this room will look like when he does get moved to his own room.

Have I mentioned that Caelan makes real noises now?  I think I have.  It started as a kind of quacking sound but he's developed it into quite the holler... not sure what else to call it.  Honestly, I really believe it's a lot of talking back.  Anyway, that's what he's been doing for the past 30 minutes... hollering at us. 

He's also boucing in the crib.  Not sitting, mind you.  For some unknown reason he never sits himself up in his crib.  Not sure why.  Guess he just knows that's the place to sleep... and yet, there he is hollering and bouncing!  He's lifting his legs up and letting them drop with all the force he can manage.  Oh and all the stuffies have been thrown out too.  No friends allowed in bed at this "non-nap" time.

So, how long do I let this little charade go on?

45 minutes and counting... and now the gagging begins.  Lovely!  Can't really ignore that...

Guess that's it for today!

germs

Blech! 
Darcy's got a terrible cough and cold.
The rest of us are trying our best to fight it off.
I was really hoping I could keep the bugs out of here a little bit longer this season.
No such luck.

time change weekend

Hope everyone remembered to change their clocks back and enjoy an extra hours rest! 

It occured to me on Friday that perhaps I should call our nursing agency regarding the time change.  We are allocated 8 hours a night, or 56 hours a week in overnight nursing, or sometimes it's referred to as a 10pm to 6am night shift.  I was banking on this last description to grant us an extra hours sleep on Saturday night.  I was doubtful that it would happen but figured it wouldn't hurt to ask!

I called our nusing agency who said they would have to check with CCAC (Community Care Access Centre).  They're the agency that determines what hours we're allowed.  They're also the ones who won't let us carry our extra hours from one week to the next, so I wasn't thinking too positively.

When the nursing agency called back they told me to sit down because the extra hour was approved!!!  I couldn't believe it. We laughed, since neither of us thought it would happen.  It was explained that our normal contact wasn't there and it was someone else who approved it at after 4pm on Friday night.  Now I know what time to call with requests!!

Everyone seems to be adjusting to the time change well.  The girls are both cranky and a bit miserable but I think they're both fighting something.  We've implemented a reward chart/checklist for Darcy that seems to be helping out with all the arguments over daily requirements, which is fabulous!  I'm loving it and can only hope that it lasts.  She's working on getting back all her stuffed puppies that she lost for not listening and misbehaving.  It's a huge motivator for Darcy so I think we'll be good for a while.  Unfortunately, no sooner do we start getting improvement in Darcy, that Ryland decides she needs some attention and starts pushing buttons.  ugh.  Despite all that, the girls both brought home progress reports from school today that make me one very proud mama.

shopping, ultrasound, and wedding work

Yesterday Damian, Caelan and I went to a great big toy sale at Lansdowne.  I can easily say that we're done ALL of our shopping for the kids for Christmas and wow, does that ever feel good!  There were tons of people there with us on the opening day of this wharehouse sale and we kept running into people that we hadn't seen in ages.  Unfortunately, it's a difficult place to stop and have a chat to catch up as your getting pushed and jostled around by a  gazillion people trying to get a jump on their Christmas shopping!  And of course most of us had brought young children in strollers making the aisles even more crowded.  Oh, and then there were the seasoned parents who'd brought wagons to to haul their loot in!  It was really crazy but fun too!

Afterwards, Caelan had an appointment for an ultrasound to check the condition of his kidney, bladder, and urinary reflux.  In my experience, ultrasounds are completely painless.  Apparently for Caelan they are the most excruciating experience in the world.  Oh, that boy was mad!!  He did not appreciate being held in place and having the goo spread on him by the technician who was making all kinds of silly noises trying to distract him while he lost his mind.  Silly, silly boy.  Thankfully, it was a seasoned technician who did a fabulously quick and thorough job and Caelan recovered quickly.

We had a few other errands to run before heading home to get the girls off the bus.  We also had company - well, if you can call them that! My sister Heidi, and long time friend-chosen sister Tammy came over last night.  After dinner, Heidi put us to work making thank you cards for her wedding and bridal showers.  We had quite the assembly line going on, complete with trimming, stamping, glittering, and embossing!!  (or blow drying as we called it lol! J)    It was lots of fun and great to spend time with them.  All in all, I think we made about 100 cards. Job well done!  It was late when we finished, actually early morning since there was lots of gabbing, so the ladies spent the night.  Good old fashioned sleepover!

treats

We are all happily enjoying the loot the girls raked in on Halloween.  I was surprised when Caelan was interested in the tiny packages of yumminess.  Although it really shouldn't suprise me because lately he has been insisting on having his own dish at meals with his own portion of whatever we're eating.  This THRILLS me!  It's a messy thing but it's great to see him moving the food around on his plate with his fork, spoon and hands, and even pretending to eat.  It's so exciting to see him explore and experiment with all these different foods.  There's really no tasting involved but I'm happy to see that he knows what he's supposed to do with food!
The other day, while Damian and I enjoyed an after lunch treat, Caelan was trying to open a bag of  m&m peanuts.  I helped him out a bit.  This picture is the result of Caelan pretending to eat an m&m... Now aren't m&m's supposed to melt in your mouth not in your hands??  So maybe he is tasting things more than I think he is... what an exciting thought.

opthamology

We had a visit with Caelan's opthamologist yesterday.  We arrived for our 2:15 appointment on time and got back to the van at 5:10pm.  It was a very long and frustrating appointment spent mostly in the waiting room. 
First we saw a resident doctor and student who tried to check Caelan's eyes.  He wasn't very cooperative.  It was determined that because it's been so long since his last appointment he should get drops so they could have a better look.  Back to the waiting room.

We were called in by the nurse to apply the drops.  There are two set of drops.  The first ones went in easily enough but the second ones not so much.  Caelan is such a smart boy and he learns quick.  He knew what was coming the minute I tried to lower him back down.  He's also a very strong boy, apparently even his eyelids are pretty strong!  It takes half an hour for the drops to take effect so back to the waiting room.

Next another resident tries to take a look at Caelan's eyes after the drops have enlarged the pupils.  After several attempts it seems Caelan is going to make this difficult and perhaps we should just leave it for the Doctor.  It's apparent that Caelan is not going to let us look in his eyes willingly and the resident doesn't want to get Caelan so upset that the Doctor is unable to have a look.  Best just to leave it to her.  Kind of a one shot deal.  Back to the waiting room.

Finally we see the Opthamologist.  No fooling around now, Mr. Caelan.  After playing nice for a bit the Doctor had Mommy hold Caelan's arms up over his head, pinning his head in place so she could have a look.  Even at that Caelan bucked and squirmed and almost falling off my lap while she had to force his eyelids opento have a look.  Not so much fun.

Now what did she see?  Well, in his good eye she was able to see some pigment, which is REALLY good.  It means he CAN see!  (Okay, I know that WE already knew that!!!)  Unfortunately, she wasn't able to see any in his poor eye but that may have had more to do with the uncooperative situation than anything else.  Now how much or how well he can see is yet to be determined.  We have to wait for Caelan to be able to tell us that.  For now, the good eye is considered 'functional'.  The other eye probably not. 

When asked how patching was going I advised her that it simply wasn't anymore because he just rips the patch off and I'm having a really hard time distracting him enough to keep it on longer than a few minutes.  I was afraid I might get a long lecture but she understood.  She explained that she feels there is probably so little vision in the poor eye, if any, that he already has developed a dependance on the good eye.  Makes sense.  She wanted to know if I felt that we had tried to strengthen the poor eye and if we were ready to say enough was enough.  This was hard.  I asked if there was an alternative to the patching and she explained that we could try and blur the vision in the good eye to try again to force the poor eye to work.  This would be done with glasses and one blurry lens.  I get the feeling that the poor eye is really bad, cover Caelan's good eye and he looses it.  I'm not sure I want to do that anymore.  She agreed whole heartedly. 

When I think back I remember that it was us that asked about the patching in the first place.  It was us that asked if there was anythign we could do to strengthen that poor eye, if there was any vision in it.  That's when she told us about the patches.  I'd like to think that she did this not really convinced that we were going to get results, but more to ensure that we knew we had tried everything we could.  Does that make sense.  That might make some families angry, feeling they'd been given false hope but I don't feel like that at all.

Anyway, it was decided that we need to change our focus from trying to strengthen the poor eye to protecting the good eye.  Little boys are 3 times more likely to injure their eyes than little girls.  Great!  So... Caelan will be getting protective eye wear.  There was another little boy in the waiting room who actually had a pair on.  Their a durable plastic frame and almost look like toy glasses.  They'll be filled with unprescribed lenses, just glass for now.  It's an opportunity to not only protect the eye but also get him used to wearing the glasses he'll in all likelihood need once he can tell us so.

Should be interesting... wonder how many times Caelan can take glasses off in... umm... a minute?

Snow on October 31st

What a surprise to wake up to on halloween morning!  It was a pretty significant snow fall.  I don't remember another time when we've built a snowman in the morning and then carved pumpkins in the afternoon.  Yesterday, when Caelan and I went out for a walk, I saw what I thought was a brilliant way to commemorate this unique day- someone had built a snowman and used their jack-o-lantern as the head!  I've never seen one of those before and I'd be happy if I never did again.  I prefer a more mild temperature halloween, one where snow suits aren't part of the costume.

Darcy and Damian building a snowman, Caelan's the little blob on the left.

Darcy ended up making our snowman family.  She's sitting in Daddy's wheelbarrow and if you look closely you might see Mommy's Elmo phone wedged in under her chin!

It's almost all gone now...

Caelan enjoying some pumpkin...

wonder what's in here??

stir, stir, stir

now for a better look

Caelan exploring with his tongue

hmmm, not so sure at first

this is pretty fun goop!

my occupational therapist would be so proud!

I don't know what happened?!?

it's all gone now!

great hat!

now it's time for a bath and some major clean up!