Background:
After having listened to me complain long enough, my husband removed some of our kitchen cupboards to open up the space. Unfortunately, this happened in a brief moment of "less chaos" last fall and the project has yet to be completed. The bulk head is still there awaiting our decision to add pot lights or remove it all together.
At each end of our kitchen table are drawers built into the table. Caelan sits at the head of our table and used to love pulling that drawer out, filling it with treasures, slamming it closed. The possibilities were endless... Until he broke the track and now the drawer sits under our china cabinet.
All this to say...
Caelan rarely lets an opportunity pass to let me know that "Daddy broke it." He signs Daddy - broken - and points at the cupboards.
I agree with him everytime, telling him that yes, he's right, Daddy broke that.
I wait.
Then with the biggest grin ever he tells me that he broke the drawer.
I agree with him about this too.
This little conversation never gets old. I love it.
It even makes the unfinished project,
staring at me in the kitchen every day,
seem like not such a bad thing...
Tuesday, January 31, 2012
Socks!
Our boy goes from needing his socks on now...
to having his socks off in a matter of minutes of getting in the car!
For the record it's not just his socks in the car... it's his hat, mitts, boots and socks!
(Oh, and I love that he's sitting criss cross applesauce in his carseat!)
Damian says that every morning when they get to preschool he has to re-dress him before bringing him in and then it's the same when he brings him home. Initially he'd put his socks and boots back on before bringing him in the house, but soon realized it was quite pointless because before he got his coat off the socks and boots were off again... Good news is Caelan knows where to put his boots away. Not so lucky about the socks. We find those all over the house!
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He thought it was pretty funny when I asked him where his socks went!
Apparently, the cold doesn't mean much to this boy...
because more often than not, lately, socks are off!
Thursday, January 26, 2012
Wednesday, January 25, 2012
Tuesday, January 24, 2012
ice cream
When my boy thinks that we might be having ice cream for dessert he's quick to join in with his sisters pleas.
We bought the mini ice cream cones just for him.
Usually, he'll give it one little lick before using it to paint the table.
But I'm happy with that.
Because some days he'll take two licks.
And one day he'll take three.
It's all on his terms and in time he'll realize just how great this tasting/eating/food thing is.
Monday, January 23, 2012
anatomy lesson
People are capable of making lots of sounds because of a small thing called our larynx or voice box. The larynx sits at the top of our trachea or windpipe. If you were looking down at your larynx you'd see a sort of triangular opening. It would be wider in the front and that's where your epiglottis is. The epiglottis is kind of like a flap that guards the opening of the larynx. It closes the opening when we swallow food or drink and prevents choking. On the sides of the opening are the vocal cords or sometimes they're called vocal folds. The vocal cords are what produce sound when they vibrate together. They are also a sort of back up to the epiglottis. At the back of the opening are two arytenoids (cartilage).
In Caelan those vocal cords were stuck together for the longest time. It was only this past September that he underwent surgery to have them permanently pinned open. During this surgery they made a point of not completely spreading the cords, but instead tried to keep about a third of the cords still close enough together to maintain a voice. When that didn't seem to be enough of an airway for him they went back in and lasered off some of the arytenoid on one side. Then at the end of November they put his trache back in. The tracheotomy sits directly below the larynx in the trachea.
Prior to getting his tracheotomy back, with his vocal cords pinned open this is what Caelan's larynx looked like:
Looks like a decent airway, doesn't it?
Anyway, that's not where I was going with this... What I wanted to explain is that Caelan is at a much greater risk for aspiration in his current situation than he was with his previous tracheotomy.
Caelan had a feeding study done a long time ago, at which time they concluded that he did have a good swallow. This meant that his epiglottis worked and when he swallowed it protected his airway. Variations of this feeding study was done in a less scientific way several times over the years. For example, anytime we fed Caelan anything orally we were always watching closely for traces of it coming out his trache. We attempted something similar after he got his trache back by putting a drop of blue food colouring in his mouth it instantly, INSTANTLY, came out his trache. This is less than good. I don't doubt that Caelan still has a good swallow, but unfortunately he probably has more secretions and saliva than he knows what to do with. Not all of it is getting swallowed in a timely manner, resulting in some of it sliding down, past those pinned open vocal cords and into his trachea.
This also helps explain why Caelan seem so much 'juicier' this time around. He's become the boy who can go through half a dozen shirts in a day as he soaks through them regularly. Probably more. Within minutes of a clean shirt it's all wet at the collar. Needless to say, he's doing pretty good at clearing his trache on his own and we need to suction him less and less.
In Caelan those vocal cords were stuck together for the longest time. It was only this past September that he underwent surgery to have them permanently pinned open. During this surgery they made a point of not completely spreading the cords, but instead tried to keep about a third of the cords still close enough together to maintain a voice. When that didn't seem to be enough of an airway for him they went back in and lasered off some of the arytenoid on one side. Then at the end of November they put his trache back in. The tracheotomy sits directly below the larynx in the trachea.
Prior to getting his tracheotomy back, with his vocal cords pinned open this is what Caelan's larynx looked like:
Looks like a decent airway, doesn't it?
Anyway, that's not where I was going with this... What I wanted to explain is that Caelan is at a much greater risk for aspiration in his current situation than he was with his previous tracheotomy.
Caelan had a feeding study done a long time ago, at which time they concluded that he did have a good swallow. This meant that his epiglottis worked and when he swallowed it protected his airway. Variations of this feeding study was done in a less scientific way several times over the years. For example, anytime we fed Caelan anything orally we were always watching closely for traces of it coming out his trache. We attempted something similar after he got his trache back by putting a drop of blue food colouring in his mouth it instantly, INSTANTLY, came out his trache. This is less than good. I don't doubt that Caelan still has a good swallow, but unfortunately he probably has more secretions and saliva than he knows what to do with. Not all of it is getting swallowed in a timely manner, resulting in some of it sliding down, past those pinned open vocal cords and into his trachea.
This also helps explain why Caelan seem so much 'juicier' this time around. He's become the boy who can go through half a dozen shirts in a day as he soaks through them regularly. Probably more. Within minutes of a clean shirt it's all wet at the collar. Needless to say, he's doing pretty good at clearing his trache on his own and we need to suction him less and less.
Sunday, January 22, 2012
Sunday
Look at these two!
Caelan was up by 6:30, Darcy before 7am...
Don't they know that Sundays are for sleeping in!!
Tomorrow morning we'll be dragging them out of bed
kicking and screaming...
okay maybe not kicking and screaming but there will definitely be moaning and groaning.
I know, I know... before too long they'll be teenagers and I'll be telling them they're wasting their days sleeping in!
Saturday, January 21, 2012
building blocks
Today we had fun playing blocks...
and then I even impressed myself!!
It's not easy to balance four building blocks on your head,
especially when you're trying to keep them there for a photo!
Caelan wanted to balance blocks on his head too...
but he had some help!
Thursday, January 19, 2012
another lesson learned
I always believed that our week nights were too hectic and just too crazy, for having anyone over. By the time I got home from work, got through homework, dinner and baths it felt like there really wasn't any evening left for entertaining. These past two weeks have brought me a new appreciation for weeknight company.
One third of the CHEO TRIO is attending an intensive five week program at this ability camp a few hours from home. During this time his Mom and Dad are alternating their time there with him on a weekly basis while the other one returns home to work. Well, these awesome people live only minutes away from us and I can only imagine how long and lonely those nights at home could be when you're used to some crazy busy chaos. I'm not saying they're not taking full advantage of the restful evenings and full nights sleep this opportunity brings, but I felt it was our duty to ensure they ate at least one proper dinner during their week at home!
I've realized that the girls homework is given on a weekly basis more often than not so they have ample time to work around one night when we have plans. That's the whole reason why the teachers send it home that way because they understand that most children have extra-curricular activities on school nights.
In addition, Damian's home, or as he was called today, my sous-chef. He's able to get a lot of prep work done if we're making a meal that requires it.
Lastly, it's not like it's a party night. Everyone has to get up early the next day so nobody is looking for a late night.
It's been fabulous! Nothing fancy, just a nice evening with friends. I've loved both our evenings so far and am looking forward to our next one this week. In fact, our whole family has loved it! So, thanks guys, xo.
One third of the CHEO TRIO is attending an intensive five week program at this ability camp a few hours from home. During this time his Mom and Dad are alternating their time there with him on a weekly basis while the other one returns home to work. Well, these awesome people live only minutes away from us and I can only imagine how long and lonely those nights at home could be when you're used to some crazy busy chaos. I'm not saying they're not taking full advantage of the restful evenings and full nights sleep this opportunity brings, but I felt it was our duty to ensure they ate at least one proper dinner during their week at home!
I've realized that the girls homework is given on a weekly basis more often than not so they have ample time to work around one night when we have plans. That's the whole reason why the teachers send it home that way because they understand that most children have extra-curricular activities on school nights.
In addition, Damian's home, or as he was called today, my sous-chef. He's able to get a lot of prep work done if we're making a meal that requires it.
Lastly, it's not like it's a party night. Everyone has to get up early the next day so nobody is looking for a late night.
It's been fabulous! Nothing fancy, just a nice evening with friends. I've loved both our evenings so far and am looking forward to our next one this week. In fact, our whole family has loved it! So, thanks guys, xo.
Wednesday, January 18, 2012
Tuesday, January 17, 2012
Winter Wonderland
Today was our third winter storm warning of 2012, second if you consider that the first one lasted two days. The girls were doing a happy dance this morning when the school buses were cancelled for the second snow day of the year. Personally, I like to see the white stuff falling but I hate to hear the dreaded freezing rain that seems to always come along with it lately. Today after work I managed to convince (there may have been some bribery involved) my family to come for a walk with me. It wasn't more than half an hour as the wind was biting and the snow falling wasn't the light and fluffy kind, but I managed to snag a few pics none the less...
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| Do we have to? |
 |
| I can't go on!! |
 |
| This is fun!! |
 |
| Are you kidding me? |
 |
| Our snow angels... |
Darcy says...
I want a pet rabbit...
I want to name him Dust.
Garsh she makes me laugh! Did you get it??
I want to name him Dust.
Garsh she makes me laugh! Did you get it??
Monday, January 16, 2012
straws
I keep trying... but I've got nothing.
Not a thing.
blah blah blah... hmmmm
Weekend was good. Highly unproductive and extremely lazy, but that was good. Or sort of.
I've read The Hunger Games trilogy. I'm trying to decide if it's appropriate reading for Ryland (10 years old). Not sure yet. If you've read them please feel free to weigh in.
I'm all wishy washy.
We had our double date on Saturday night. Night out on the town without any kidlets. It was a lovely grown up dinner with great friends.
Ryland is signed up for curling... Apparently showing some good technique for her first lesson. Damian went out and bought her slider and griper (?) today.
Spent tonight tidying up Darcy's room... it was very overdue. Actually I should clarify, I didn't tidy. I sat and directed while she did the tidying up.
Ok I'm grasping at straws people...
Not a thing.
blah blah blah... hmmmm
Weekend was good. Highly unproductive and extremely lazy, but that was good. Or sort of.
I've read The Hunger Games trilogy. I'm trying to decide if it's appropriate reading for Ryland (10 years old). Not sure yet. If you've read them please feel free to weigh in.
I'm all wishy washy.
We had our double date on Saturday night. Night out on the town without any kidlets. It was a lovely grown up dinner with great friends.
Ryland is signed up for curling... Apparently showing some good technique for her first lesson. Damian went out and bought her slider and griper (?) today.
Spent tonight tidying up Darcy's room... it was very overdue. Actually I should clarify, I didn't tidy. I sat and directed while she did the tidying up.
Ok I'm grasping at straws people...
Friday, January 13, 2012
Thursday, January 12, 2012
back to preschool
Damian brought Caelan into preschool on Tuesday for a visit.
We weren't sure how he'd react so it was decided that they'd only go for a few hours in the morning and Damian would stay there with him.
We have to keep in mind that even though we're used to Caelan with a tracheotomy this is all new for preschool.
Well, Caelan couldn't get rid of Damian fast enough.
Damian was still helping him get his coat off and he was waving bye.
All his friends were excited to have him back too! Not that any of the pics reflect that but I'm not sure if I'm allowed to post pics of his friends... I'll need to look into that! You'll have to take my word for it that he's not the only one there!!
Oh yah, and Wednesday he went for a full day and then today was a snow day!!
We weren't sure how he'd react so it was decided that they'd only go for a few hours in the morning and Damian would stay there with him.
We have to keep in mind that even though we're used to Caelan with a tracheotomy this is all new for preschool.
Well, Caelan couldn't get rid of Damian fast enough.
Damian was still helping him get his coat off and he was waving bye.
All his friends were excited to have him back too! Not that any of the pics reflect that but I'm not sure if I'm allowed to post pics of his friends... I'll need to look into that! You'll have to take my word for it that he's not the only one there!!
Oh yah, and Wednesday he went for a full day and then today was a snow day!!
Wednesday, January 11, 2012
methadone
check!
all done!
finito!
another one off the list!
only one more to go...
we start weaning clonidine tomorrow...
all done!
finito!
another one off the list!
only one more to go...
we start weaning clonidine tomorrow...
Tuesday, January 10, 2012
Good news
Caelan had an appointment with nepherology today and it was very encouraging.
All Caelan's numbers are looking good, better than the last couple times. The Doctor has decided to hold off on starting that new medication because she's satisfied with the decrease of protein in his urine that was previously a concern.
This is such a huge relief. Caelan's kidney issues are pretty low on the radar. I wouldn't want to say that we ignore or forget about it because it most certainly is a real concern. It just happens to be one that gets regular monitoring without the "in your face" aspect that some of his other issues have.
The main concern with Caelan's kidney only functioning at an okay level is whether it will be able to keep up during periods of rapid growth. We're just about through the first of these, from birth to the toddler years. As a result our visits to nepherology have been reduced from every 3 months to every 6 or 9 months. Probably 6 months for the next check up only because of everything he's been through recently and if that's all clear then every 9 months after that!! ... Until he hits puberty... at which time I'm sure we'll have a bucket load of concerns!!
All Caelan's numbers are looking good, better than the last couple times. The Doctor has decided to hold off on starting that new medication because she's satisfied with the decrease of protein in his urine that was previously a concern.
This is such a huge relief. Caelan's kidney issues are pretty low on the radar. I wouldn't want to say that we ignore or forget about it because it most certainly is a real concern. It just happens to be one that gets regular monitoring without the "in your face" aspect that some of his other issues have.
The main concern with Caelan's kidney only functioning at an okay level is whether it will be able to keep up during periods of rapid growth. We're just about through the first of these, from birth to the toddler years. As a result our visits to nepherology have been reduced from every 3 months to every 6 or 9 months. Probably 6 months for the next check up only because of everything he's been through recently and if that's all clear then every 9 months after that!! ... Until he hits puberty... at which time I'm sure we'll have a bucket load of concerns!!
Monday, January 9, 2012
happy happy joy joy
The girls headed back to school today.
Caelan missed his sisters... Daddy not so much. I was told that it didn't take Damian long to do his happy dance this morning.
Everyone seemed to have a really good day. I was expecting tonight to be difficult with a couple of very tired girls but everthing went smoothly. Phew!
I returned to the gym today (huge pat on the back!) It's been a very, very long time!! It felt good and more importantly it made me happyto cross it off my list!
Caelan missed his sisters... Daddy not so much. I was told that it didn't take Damian long to do his happy dance this morning.
Everyone seemed to have a really good day. I was expecting tonight to be difficult with a couple of very tired girls but everthing went smoothly. Phew!
I returned to the gym today (huge pat on the back!) It's been a very, very long time!! It felt good and more importantly it made me happy
Thursday, January 5, 2012
appointments
It may be a new year, but some things never change. Caelan had a couple appointments at CHEO yesterday. Yep, already back into that routine. Apparently his most recent stay was still too fresh in his memory because he was in no mood to be in that building yesterday.
At his ENT follow up Caelan was miserable. I had hoped that Damian would be able to do the first ‘new’ trache change while there, but with Caelan refusing to even remove his winter coat that didn’t happen. Guess we’ll be doing that this weekend… maybe. I’m a little nervous about it because it’ll be the first one we’ve had to do with the new tracheotomy and the larger sized trache. The principal is still the same so we shouldn’t have any trouble. It’s just scary when it doesn’t go smoothly.
No concerns during the visit and a bronchoscopy has been scheduled for May to have a more thorough look in the operating room. This is standard procedure after a new tracheotomy.
In Urology, Caelan was upset and uncooperative resulting in an inconclusive examination. This was a rescheduled appointment after the last one ended the same way. This examination alone would never warrant putting Caelan under general anesthesia, but they may tag onto that bronchoscopy scheduled in May with ENT just to get it done.
Oh, and I’ll tack on Caelan’s new drug schedule. It’s looking a lot better. We’ve completely weaned him off the ativan (sedative) and are almost (less than 10 days away) from finishing the methadone.
12am clonidine
6am clonidine
8am prevacid (anti reflux med)
noon clonidine
6pm clonidine
10pm nitrofurantoin & methadone
Wednesday, January 4, 2012
Tuesday, January 3, 2012
Date Night?
hmm... okay that might be a bit of a stretch as I sit here in my jammies on the computer while Damian's reading on the couch behind me with Caelan snuggled in watching cartoons... but the girls are sleeping over at Nana's, so it's kind of like a date night with two less children!
Think some more effort may be required... We did cook dinner together and talked then, but that doesn't cut it. I'd like to think we do that most nights.
Better be off to put in that effort... maybe a game of scrabble is in order, lol! Such exciting date nights!!
Oh, I was just reminded there's the World Juniors semi-final hockey game on... not a good night for a date night.
It's okay though, I've got some plans in the works for a real date night. One that takes us out of the house without any children! Can't wait!!
Think some more effort may be required... We did cook dinner together and talked then, but that doesn't cut it. I'd like to think we do that most nights.
Better be off to put in that effort... maybe a game of scrabble is in order, lol! Such exciting date nights!!
Oh, I was just reminded there's the World Juniors semi-final hockey game on... not a good night for a date night.
It's okay though, I've got some plans in the works for a real date night. One that takes us out of the house without any children! Can't wait!!
Monday, January 2, 2012
Friends
We spent another great day with friends... Friends that we see too little of and always make promises of more visits soon. We sat and chatted the afternoon away. It was nice and long overdue.
It amazes me how shocked I can be at the rate at which my friends' children grow up. How is that possible? I guess because we see our own kids every day and we know they're getting bigger all the time, but when you see someone else's child less frequently it's always such a surprise at how old they are and how much they've grown. Weird.
I'm not a great friend for staying in touch. Time slips away and I spend more time thinking about writing or calling than I actually do. I was told this afternoon that this blog is needed, at least by one friend, and it's true. By writing this blog (and even more so by the one before it) I'm trying to keep some kind of communication open with all our friends. Hoping that through this they may understand why we haven't contacted them in so long.
Long stays in the hospital. Recovering at home. These things take a lot out of you.
Working. Life with a family of five. These things keep you busy.
It makes you crave quiet weekends at home. Having friends visit the past few days has made me realize that I miss that and crave it too. Fun time spent with friends. Nothing fancy, no big plans. Just being together with friends. Friends who have always been there. Those friends that try hard to understand everything that's going on. I have to remember to let them in.
These days Caelan is doing well. He truly had fun over Christmas. I think the girls excitement was contagious. Today however, there were more clear signs of withdrawal. Clingy. Snuggly. Sweating. This most recent drop in his methadone has been felt. He wants Mom... and he wants Dad... and he wants up... and he already is up. He just wants it all and he doesn't know what he wants all at the same time. We spent the entire day with him in our arms, snuggles a plenty... no complaints here. Just wish that was enough to keep him happy.
It amazes me how shocked I can be at the rate at which my friends' children grow up. How is that possible? I guess because we see our own kids every day and we know they're getting bigger all the time, but when you see someone else's child less frequently it's always such a surprise at how old they are and how much they've grown. Weird.
I'm not a great friend for staying in touch. Time slips away and I spend more time thinking about writing or calling than I actually do. I was told this afternoon that this blog is needed, at least by one friend, and it's true. By writing this blog (and even more so by the one before it) I'm trying to keep some kind of communication open with all our friends. Hoping that through this they may understand why we haven't contacted them in so long.
Long stays in the hospital. Recovering at home. These things take a lot out of you.
Working. Life with a family of five. These things keep you busy.
It makes you crave quiet weekends at home. Having friends visit the past few days has made me realize that I miss that and crave it too. Fun time spent with friends. Nothing fancy, no big plans. Just being together with friends. Friends who have always been there. Those friends that try hard to understand everything that's going on. I have to remember to let them in.
These days Caelan is doing well. He truly had fun over Christmas. I think the girls excitement was contagious. Today however, there were more clear signs of withdrawal. Clingy. Snuggly. Sweating. This most recent drop in his methadone has been felt. He wants Mom... and he wants Dad... and he wants up... and he already is up. He just wants it all and he doesn't know what he wants all at the same time. We spent the entire day with him in our arms, snuggles a plenty... no complaints here. Just wish that was enough to keep him happy.
Sunday, January 1, 2012
HAPPY NEW YEAR!
Good bye 2011. Hello 2012.
Today was a great start to the new year.
The bestest of friends stayed over last night so we enjoyed a lovely breakfast together this morning. Enjoyed some adult conversation. Listened to our children play together. Stayed in my jammies all day long. Spoke to my Dad, my sister and my Mom. Snuggled on the couch with my Caelan. Finished my book (I'm counting it as the last towards 2011). Ate a family favourite for dinner - no complaints!
If only every day of 2012 could be like this.
Today was a great start to the new year.
The bestest of friends stayed over last night so we enjoyed a lovely breakfast together this morning. Enjoyed some adult conversation. Listened to our children play together. Stayed in my jammies all day long. Spoke to my Dad, my sister and my Mom. Snuggled on the couch with my Caelan. Finished my book (I'm counting it as the last towards 2011). Ate a family favourite for dinner - no complaints!
If only every day of 2012 could be like this.
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