Monday, June 14, 2010
So many things to update everyone on... first I want to thank everyone for their support for CHEO through our Wal-Mart Walk for Miracles. We had a great time reuniting the CHEO Trio families and friends and thankfully we had a beautiful day! I believe a good time was had by all, lots of money was raised and we're all looking forward to doing it again next year!!
We've had lots of 'firsts' in the last two weeks - Caelan went in the swing at the park. With his feeds finally having a bit of a break he was able to sit nice and strong in the swing all by himself and while flirting with the little girl in the swing next to him I was able to give him a gentle push. It was cute to see him eyeing the little girl, who was about a year younger than him and flying twice as high on the swing!! Baby steps are so much fun!
Another first is that Caelan has started to sign... I mean signs you can actually understand. He's been waving those hands around and pointing for a while, but we've got a definitive "yes" and "no" and I'm pretty sure we saw a "Daddy" and "Mommy". "Music" was first because our boy loves his music! We're COMMUNICATING!!!! This is amazing. Caelan's always got his point accross and made his opinions crystal clear but this is just so much more than the "point and raspberry" method!! We've still got a long way to go but like I said, these baby steps are FUN!
In preparation for a hot, sunny summer we bought Caelan a small inflatable pool that fits on the deck around our above ground pool. Yesterday after the Walk for Miracles, he had his first 'swim'... ok swim might be a bit of an exageration as there was barely an inch of water in the pool, but he had a great time! I've posted some pics we took of him in the pool. We started by putting him in it while it was empty and just gave him cups full of water to play in and dump out. Soon enough he was splashing and kicking, having a great old time! He kept putting his hands up to his mouth, makes me think he liked the feel of the water in his mouth.
Lots of people have been asking me how the oral feeds have been going and I can't say that they're going well at all. He fights it all the way. However he does know what's supposed to be happening since he now enjoys feeding us. He insisted on feeding me a bowl of berries one morning, squishing every raspberry before it reached my mouth! He's also fed me dry shreddies, chips, crackers, carrots... he gets the idea and thinks it's great fun to feed mom, but if mom tries the 'my turn/your turn' game it's over! We've been letting him manage his oral feeds by placing different foods on his tray and he can feel it and decide what to do with it. I only hope some of it ends up in his mouth because most of it seems to land on the floor.
And finally our boy has started the bum scootch. Now it's very early and mostly backwards and I think really accidental, but it's there!! He is moving around in a sitting position. He's mastered the pivot and is getting stronger and braver all the time. Here comes trouble!!! xo
We've had lots of 'firsts' in the last two weeks - Caelan went in the swing at the park. With his feeds finally having a bit of a break he was able to sit nice and strong in the swing all by himself and while flirting with the little girl in the swing next to him I was able to give him a gentle push. It was cute to see him eyeing the little girl, who was about a year younger than him and flying twice as high on the swing!! Baby steps are so much fun!
Another first is that Caelan has started to sign... I mean signs you can actually understand. He's been waving those hands around and pointing for a while, but we've got a definitive "yes" and "no" and I'm pretty sure we saw a "Daddy" and "Mommy". "Music" was first because our boy loves his music! We're COMMUNICATING!!!! This is amazing. Caelan's always got his point accross and made his opinions crystal clear but this is just so much more than the "point and raspberry" method!! We've still got a long way to go but like I said, these baby steps are FUN!
In preparation for a hot, sunny summer we bought Caelan a small inflatable pool that fits on the deck around our above ground pool. Yesterday after the Walk for Miracles, he had his first 'swim'... ok swim might be a bit of an exageration as there was barely an inch of water in the pool, but he had a great time! I've posted some pics we took of him in the pool. We started by putting him in it while it was empty and just gave him cups full of water to play in and dump out. Soon enough he was splashing and kicking, having a great old time! He kept putting his hands up to his mouth, makes me think he liked the feel of the water in his mouth.
Lots of people have been asking me how the oral feeds have been going and I can't say that they're going well at all. He fights it all the way. However he does know what's supposed to be happening since he now enjoys feeding us. He insisted on feeding me a bowl of berries one morning, squishing every raspberry before it reached my mouth! He's also fed me dry shreddies, chips, crackers, carrots... he gets the idea and thinks it's great fun to feed mom, but if mom tries the 'my turn/your turn' game it's over! We've been letting him manage his oral feeds by placing different foods on his tray and he can feel it and decide what to do with it. I only hope some of it ends up in his mouth because most of it seems to land on the floor.
And finally our boy has started the bum scootch. Now it's very early and mostly backwards and I think really accidental, but it's there!! He is moving around in a sitting position. He's mastered the pivot and is getting stronger and braver all the time. Here comes trouble!!! xo
Friday, June 18, 2010
Just when everything seems to be going so well life smacks you down!!! GRRR...
We spent Wednesday in doctor's offices and CHEO's ER. Caelan had been fighting a bit of a cold since the weekend and when I went to bed on Tuesday night I had an awful sore throat. I also decided to give Caelan straight pedialyte overnight instead of his formula because he didn't seem to be tolerating it well. I reduced his rate from 80 to 60 just to try and make things easier on him but he was still wretching - unable to vomit since the fundo but spitting out mouthfulls of saliva and getting his point across. He also had been fighting a low grade fever off and on since Monday. There was definitely something going on, we just weren't sure what. Just a cold? Teething? His mickey site has a lot of granulation tissue, could there be an infection?
When I woke on Wednesday I was positive I had strep throat. We headed off to my doctor's office first where I got my prescription for strep and then headed off to bring Caelan in to CHEO. Our visit wasn't too long and painful, but it was far from short and quick. Chest x-rays were done to rule out pneumonia. They examined his mickey site and although there was quite a bit of granulation tissue they didn't see any signs of infection and were happy with us following up with Dr. Bass (the surgeon) on Wednesday June 23. They also checked his ears and throat and didn't see anything suspect but because I was being treated (as of that morning) for strep they did a swab of his throat and said if anything came back from the lab they'd let us know. We left happy that it wasn't anything more serious than a cold. (well as happy as I can be with strep throat and a fever, wanting nothing more than to crawl in to bed!)
Yesterday we got the call confirming that Caelan's swab came back positive for strep and that they'd call in the prescription for us. Once again my son and I are on the same meds, amoxicillan, fighting off strep - at least today I feel as though I'm back among the living... Caelan's handling it all remarkably well. Not quite himself but we're still getting smiles!
We spent Wednesday in doctor's offices and CHEO's ER. Caelan had been fighting a bit of a cold since the weekend and when I went to bed on Tuesday night I had an awful sore throat. I also decided to give Caelan straight pedialyte overnight instead of his formula because he didn't seem to be tolerating it well. I reduced his rate from 80 to 60 just to try and make things easier on him but he was still wretching - unable to vomit since the fundo but spitting out mouthfulls of saliva and getting his point across. He also had been fighting a low grade fever off and on since Monday. There was definitely something going on, we just weren't sure what. Just a cold? Teething? His mickey site has a lot of granulation tissue, could there be an infection?
When I woke on Wednesday I was positive I had strep throat. We headed off to my doctor's office first where I got my prescription for strep and then headed off to bring Caelan in to CHEO. Our visit wasn't too long and painful, but it was far from short and quick. Chest x-rays were done to rule out pneumonia. They examined his mickey site and although there was quite a bit of granulation tissue they didn't see any signs of infection and were happy with us following up with Dr. Bass (the surgeon) on Wednesday June 23. They also checked his ears and throat and didn't see anything suspect but because I was being treated (as of that morning) for strep they did a swab of his throat and said if anything came back from the lab they'd let us know. We left happy that it wasn't anything more serious than a cold. (well as happy as I can be with strep throat and a fever, wanting nothing more than to crawl in to bed!)
Yesterday we got the call confirming that Caelan's swab came back positive for strep and that they'd call in the prescription for us. Once again my son and I are on the same meds, amoxicillan, fighting off strep - at least today I feel as though I'm back among the living... Caelan's handling it all remarkably well. Not quite himself but we're still getting smiles!
Wednesday, July 7, 2010
Not sure what went wrong but Caelan and I are both on our second round of antibiotics for strep throat. Very frustrating!
Other than that Caelan is enjoying having his sisters home on summer vacation. He's trying his best to follow them around and be in the middle of whatever they're doing! His scootching continues to improve and he's increasing speed. Still fastest on his back though.
He despises the heat we're experiencing right now - understandably with it feeling like +40 degrees!! I have to admit we're spending most of our time inside in the air conditioning. He loves his pool and we do venture out occasionally for a bit of a dip.
If I remember correctly I mentionned that the granulation tissue around Caelan's mickey was growing and we were off to see the surgeon a couple weeks ago. As I suspected he used the silver nitrate sticks to 'burn' off this tissue. Unfortunately because there is so much this treatment has to be done every other day. So instead of going into the hospital that often he wrote us a prescription for the sticks and lucky Mommy gets to do this herself! I have to tell you that I really thought the surgeon was out of this mind and told him that I thought he had much more confidence in me than I deserved!! He just laughed and said it was easy and kind of like painting - and surprisingly he was right... it's not that bad.
Other than that Caelan is enjoying having his sisters home on summer vacation. He's trying his best to follow them around and be in the middle of whatever they're doing! His scootching continues to improve and he's increasing speed. Still fastest on his back though.
He despises the heat we're experiencing right now - understandably with it feeling like +40 degrees!! I have to admit we're spending most of our time inside in the air conditioning. He loves his pool and we do venture out occasionally for a bit of a dip.
If I remember correctly I mentionned that the granulation tissue around Caelan's mickey was growing and we were off to see the surgeon a couple weeks ago. As I suspected he used the silver nitrate sticks to 'burn' off this tissue. Unfortunately because there is so much this treatment has to be done every other day. So instead of going into the hospital that often he wrote us a prescription for the sticks and lucky Mommy gets to do this herself! I have to tell you that I really thought the surgeon was out of this mind and told him that I thought he had much more confidence in me than I deserved!! He just laughed and said it was easy and kind of like painting - and surprisingly he was right... it's not that bad.
Thursday, August 5, 2010
What a busy July we've had!
Caelan's daily routines have expanded... here is what every day is supposed to include - I won't pretend that we manage to do it all every day, but we try our best!
Oral Feeds: our Occupational Therapist has suggested 2-3 attempts daily. Each one doesn't have to last long, only a couple 'bites'. At first it was all new and fun and he was all over it... it grew old quickly and has become quite the challenge... he still prefers to feed it to Mom!
However I have to add this intersting turn of events. Last weekend we cooked our hot dog dinner over a fire in the backyard. Caelan decided to feed me a carrot stick and after letting me have one bite he put the carrot stick to his lips! I was allowed another bit and this time he put the carrot stick IN his mouth - and it stayed there!! Before too long I could see tiny teeth marks on the carrot and sure enough it wasnn't long before he'd taken a bite!! Which he wasn't terribly impressed with and gagged out of his mouth.
When it came time for smores (what campfire is complete without them?!!?) Caelan HAD to have a graham cracker, which he took a few small bites out of, most of which had to be removed from his mouth but he defintely got some of it since they basically melt in your mouth. Oh and I did sneak in a couple chocolate shavings which he smacked at. All this to say we're definitely making some kind of progress when it comes to oral feeds.
Ok, back to daily routines...
We still have that dreaded eye patch for 30 minutes a day.
Time in the pony-walker-trike to strengthen those leg muscles.
Time in the board stander to strengthen the leg bones.
Practice transitions from floor to sitting (teaching him how to get himself into a sitting position).
Practice sit to stand transitions (getting him to use his arms to pull himself to a standing position).
Completing tasks is something we always have to work on. Caelan is very strong willed and like other children, tries to get his way. We really have to keep an eye on this, especially since Caelan has this great knack for holding his breath to the extreme when things are not to his liking. He has to learn that some things just need to be done, or finished, no matter how much he dislikes it or how hard it is. It's tough but we understand that if it's not handled now it's only going to get worse.
Now for the FUN stuff. This month we spent lots of good quality family time together. We went for a tour of the Parliament Buildings, walked along Sparks Street and through the Byward market, including Beavertails of course! We shopped at the Ottawa Farmers Market. We took the family on a surprise road trip to Toronto to visit the Ontario Science Centre's Harry Potter Exhibit and the Metro Toronto Zoo. Through all this Caelan did great!! He was in a fantastic mood the whole time despite missing naps and staying up really late. He even did amazing on the longest drive of his life. All in all July was a huge success!
Caelan's daily routines have expanded... here is what every day is supposed to include - I won't pretend that we manage to do it all every day, but we try our best!
Oral Feeds: our Occupational Therapist has suggested 2-3 attempts daily. Each one doesn't have to last long, only a couple 'bites'. At first it was all new and fun and he was all over it... it grew old quickly and has become quite the challenge... he still prefers to feed it to Mom!
However I have to add this intersting turn of events. Last weekend we cooked our hot dog dinner over a fire in the backyard. Caelan decided to feed me a carrot stick and after letting me have one bite he put the carrot stick to his lips! I was allowed another bit and this time he put the carrot stick IN his mouth - and it stayed there!! Before too long I could see tiny teeth marks on the carrot and sure enough it wasnn't long before he'd taken a bite!! Which he wasn't terribly impressed with and gagged out of his mouth.
When it came time for smores (what campfire is complete without them?!!?) Caelan HAD to have a graham cracker, which he took a few small bites out of, most of which had to be removed from his mouth but he defintely got some of it since they basically melt in your mouth. Oh and I did sneak in a couple chocolate shavings which he smacked at. All this to say we're definitely making some kind of progress when it comes to oral feeds.
Ok, back to daily routines...
We still have that dreaded eye patch for 30 minutes a day.
Time in the pony-walker-trike to strengthen those leg muscles.
Time in the board stander to strengthen the leg bones.
Practice transitions from floor to sitting (teaching him how to get himself into a sitting position).
Practice sit to stand transitions (getting him to use his arms to pull himself to a standing position).
Completing tasks is something we always have to work on. Caelan is very strong willed and like other children, tries to get his way. We really have to keep an eye on this, especially since Caelan has this great knack for holding his breath to the extreme when things are not to his liking. He has to learn that some things just need to be done, or finished, no matter how much he dislikes it or how hard it is. It's tough but we understand that if it's not handled now it's only going to get worse.
Now for the FUN stuff. This month we spent lots of good quality family time together. We went for a tour of the Parliament Buildings, walked along Sparks Street and through the Byward market, including Beavertails of course! We shopped at the Ottawa Farmers Market. We took the family on a surprise road trip to Toronto to visit the Ontario Science Centre's Harry Potter Exhibit and the Metro Toronto Zoo. Through all this Caelan did great!! He was in a fantastic mood the whole time despite missing naps and staying up really late. He even did amazing on the longest drive of his life. All in all July was a huge success!
Friday, September 10, 2010
I know it's been over a month since our last entry ...
August was great, and we finished off the summer with a grand surprise by taking the family to Walt Disney World in Orlando! It was amazing, All five of us went with Damian's parents and our nurse friend Kathleen.
Caelan had lots of fun and only napped one day in the stroller the entire time we were there. There was so much going on, so much to see, and so many new things to experience. Starting with Caelan's first time on a plane - and Mom and Dad's first experience getting through airport security with Caelan and all his paraphenalia!! It actually went smoothly, without any trouble at all.
Caelan was able to go on many of the rides at the Magic Kingdom, including Dumbo, Peter Pan's Magical Flight, Snow White's Scarry Adventure, Pirates of the Carribean, Jungle Cruise, Haunted House, and others... Basically he sat out on Space Mountain, Splash Mountain and Big Thunder Mountain Railroad!!
We had a fabulous time staying at The Cabins at Disney's Fort Wilderness Resort. Caelan loved the boat ride from our resort to the Magic Kingdom. We enjoyed one afternoon by the pool (they had a super shallow one perfect for Mr. C) but spent most of our time at the Disney theme parks.
The heat was unbelievable and he handled it great with lots of extra flushes of water and wet faceclothes to wipe off with or suck on.
Now we're back to routine though, girls back to school and Daddy back to work and he's stuck here with boring ole' Mom! When it's not raining we've tried to get out for a walk but the sights just aren't as exciting as Disney!! We've been back to Occupational Therapy this week and our therapist thought there were some definite improvements which made me happy after a week of not worrying about any of the things we' re supposed to work on!!! It was a great vacation :)
August was great, and we finished off the summer with a grand surprise by taking the family to Walt Disney World in Orlando! It was amazing, All five of us went with Damian's parents and our nurse friend Kathleen.
Caelan had lots of fun and only napped one day in the stroller the entire time we were there. There was so much going on, so much to see, and so many new things to experience. Starting with Caelan's first time on a plane - and Mom and Dad's first experience getting through airport security with Caelan and all his paraphenalia!! It actually went smoothly, without any trouble at all.
Caelan was able to go on many of the rides at the Magic Kingdom, including Dumbo, Peter Pan's Magical Flight, Snow White's Scarry Adventure, Pirates of the Carribean, Jungle Cruise, Haunted House, and others... Basically he sat out on Space Mountain, Splash Mountain and Big Thunder Mountain Railroad!!
We had a fabulous time staying at The Cabins at Disney's Fort Wilderness Resort. Caelan loved the boat ride from our resort to the Magic Kingdom. We enjoyed one afternoon by the pool (they had a super shallow one perfect for Mr. C) but spent most of our time at the Disney theme parks.
The heat was unbelievable and he handled it great with lots of extra flushes of water and wet faceclothes to wipe off with or suck on.
Now we're back to routine though, girls back to school and Daddy back to work and he's stuck here with boring ole' Mom! When it's not raining we've tried to get out for a walk but the sights just aren't as exciting as Disney!! We've been back to Occupational Therapy this week and our therapist thought there were some definite improvements which made me happy after a week of not worrying about any of the things we' re supposed to work on!!! It was a great vacation :)
Thursday, September 16, 2010
Weighing in this morning at 26lbs Caelan at 23 months of age has finally reached the 50% for weight for his age group!! Couldn't believe my eyes when the dietician showed me, not only was he on the chart, but in the shaded area!! That fundo has really done the trick, no more reflux means all that food we're pumping into him is staying in and doing what it's supposed to. Hooray Caelan!!
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