Friday, August 7, 2009
Caelan has had a nice quiet week. No appointments at CHEO!
His dietician came to visit yesterday and Caelan weighed in at 6.51 kilos (just over 14lbs.). He's gaining weight, just not as much as we'd like him to. As a result we've increased the number of calories in his formula. Instead of neocate 22, we now prepare neocate 23. It's a small change that hopefully will make a big difference!
Yesterday Caelan and I made the trip in to my office so I could show him off to all my colleagues. As expected he loved all the attention and flirted with everyone!! He was on his best behaviour, so we even went and did a little fun shopping. He only had a quick power nap because he didn't want to miss any of that attention and was completely exhausted when we got home!
His dietician came to visit yesterday and Caelan weighed in at 6.51 kilos (just over 14lbs.). He's gaining weight, just not as much as we'd like him to. As a result we've increased the number of calories in his formula. Instead of neocate 22, we now prepare neocate 23. It's a small change that hopefully will make a big difference!
Yesterday Caelan and I made the trip in to my office so I could show him off to all my colleagues. As expected he loved all the attention and flirted with everyone!! He was on his best behaviour, so we even went and did a little fun shopping. He only had a quick power nap because he didn't want to miss any of that attention and was completely exhausted when we got home!
Tuesday, August 11, 2009 8:27 PM, CDT
BIG news: Caelan has a second tooth, this one on the top!
Other new tricks include a 'raspberry' of sorts. He's so proud of himself, spitting bubbles all over the place... I can't help but smile! IWe're all so excited to hear a sound coming from him that we're all 'raspberry-ing' in encouragement!!
He's also enjoying his bath a lot more. Not that he didn't ever enjoy it, he's just realized that he can kick a lot harder and make bigger splashes. Makes me nervous, but I'm hovering with the suction close by! He's a riot, and again just so proud of himself - that might be it... It might be that he's realized that he's actually causing the splashes and waves! Oh, such a smart boy!! :)
I'm also happy to report that we have nurses scheduled every night through to next weekend! Keeping our fingers crossed that we've got a reliable team in place for a while.
Other new tricks include a 'raspberry' of sorts. He's so proud of himself, spitting bubbles all over the place... I can't help but smile! IWe're all so excited to hear a sound coming from him that we're all 'raspberry-ing' in encouragement!!
He's also enjoying his bath a lot more. Not that he didn't ever enjoy it, he's just realized that he can kick a lot harder and make bigger splashes. Makes me nervous, but I'm hovering with the suction close by! He's a riot, and again just so proud of himself - that might be it... It might be that he's realized that he's actually causing the splashes and waves! Oh, such a smart boy!! :)
I'm also happy to report that we have nurses scheduled every night through to next weekend! Keeping our fingers crossed that we've got a reliable team in place for a while.
Friday, August 14, 2009
What a busy day!!
Caelan had an appointment with Urology today. We discussed the two different surgical options to correct the urinary reflux (vesicoureteric reflux is the proper medical term). We've decided to go with the least invasive of the two. It's called a STING procedure and involves an injection of an implant into the bladder to strengthen the flap valve that's supposed to prevent the urine from travelling from the bladder back up to the kidney. There's no incision and the entire procedure is done with a cystoscope and needles. This procedure has a 70 - 80% success ratio and sometimes a second injection is required. Usually it's a day surgery, however because Caelan's special he gets two nights booked for recovery just in case. He's also been prioritized and surgery will be scheduled for September instead of 8 months from now!!
While at the hospital Caelan felt like socializing so we went upstairs to visit our NICU mate Campbell who's found his way back to CHEO with a urinary tract infection and blood infection. His infections are being treated with IV antibiotics but his parents both feel that he's suffering from withdrawal from some of the heavier meds he received in the ICU when he was initially admitted last week. It's not a happy time since Campbel hasn't slept a wink in days and is growing more and more irritable. Everyone is exhausted, worried and frustrated and that's something all NICU parents are unfortunately very familiar with. What makes all this worse is that Campbell was in the hospital to celebrate his 1st birthday!! AND he's cut his first tooth while there!! **SUNDAY UPDATE: I'm happy to say that he's on the road to recovery now although he'll remain in hospital for at least one more week to get those IV antibiotics -- well unless his mom can convince someone to let them go home and have home nurses take care of the IV!!
We also stopped to visit the NICU and were very excited to see many of our fave nurses! Thanks for coming into the hall for quick hugs! It was great to see everyone.
To end our evening Caelan took Damian and I out for a fun dinner at Lonestar where, you guessed it, he flirted with the waitresses and patrons!
Caelan had an appointment with Urology today. We discussed the two different surgical options to correct the urinary reflux (vesicoureteric reflux is the proper medical term). We've decided to go with the least invasive of the two. It's called a STING procedure and involves an injection of an implant into the bladder to strengthen the flap valve that's supposed to prevent the urine from travelling from the bladder back up to the kidney. There's no incision and the entire procedure is done with a cystoscope and needles. This procedure has a 70 - 80% success ratio and sometimes a second injection is required. Usually it's a day surgery, however because Caelan's special he gets two nights booked for recovery just in case. He's also been prioritized and surgery will be scheduled for September instead of 8 months from now!!
While at the hospital Caelan felt like socializing so we went upstairs to visit our NICU mate Campbell who's found his way back to CHEO with a urinary tract infection and blood infection. His infections are being treated with IV antibiotics but his parents both feel that he's suffering from withdrawal from some of the heavier meds he received in the ICU when he was initially admitted last week. It's not a happy time since Campbel hasn't slept a wink in days and is growing more and more irritable. Everyone is exhausted, worried and frustrated and that's something all NICU parents are unfortunately very familiar with. What makes all this worse is that Campbell was in the hospital to celebrate his 1st birthday!! AND he's cut his first tooth while there!! **SUNDAY UPDATE: I'm happy to say that he's on the road to recovery now although he'll remain in hospital for at least one more week to get those IV antibiotics -- well unless his mom can convince someone to let them go home and have home nurses take care of the IV!!
We also stopped to visit the NICU and were very excited to see many of our fave nurses! Thanks for coming into the hall for quick hugs! It was great to see everyone.
To end our evening Caelan took Damian and I out for a fun dinner at Lonestar where, you guessed it, he flirted with the waitresses and patrons!
 |
| My beautiful children |
 |
| The boy playing with stuff he really shouldn't |
Saturday, September 5, 2009
Where does the time go???
Caelan had an appointment with opthamology back in August but it was a little frustrating. The Doctor agrees that it appears Caelan can see, he focuses on objects and follows them with both eyes. However, because they know that he has these great holes in the back of his eyeballs (the colobomas) they find that very hard to believe. We won't know for sure how well Caelan is able to see until he's better able to communicate that to us.
We met with a social worker from the infant hearing program who also happens to be the social worker for the blind/low vision program. What a fantastic lady! She provided us with lots of information and is in the process of getting a sign language instructor who will come to our home and teach all of us sign language. We are really looking forward to this.
Caelan had a follow up appointment with nephrology (kidney). Basically they just wanted to make sure that his blood pressure was not elevated - which it wasn't, it was great! - and they wanted to ensure that urology was going to try and correct the reflux. We still have not received confirmation of a date for the 'sting' operation.
Our visits with the dietician continue. We had one week where Caelan's weight took a bit of a dip but we're back on track and gaining. It would be so nice if I could just give him some of mine! He's tolerating his feeds well and we've increased the rate a bit. He's still spitting up but not so much we're concerned. We seem to have a pressure packed hour or so every day first thing in the morning, which now includes some impressive projectile - it often hits the end of the crib and beyond! As a result we've started trying to replace an estimated amount of what's been lost either by vomitting or his talent for feeding the bed/stroller by detaching his mic-key extension. It only takes seconds for him to be covered in neocate holding both ends of the mic-key extension with a great big grin on his face!
I think we also may have turned a corner with the oral feeds... well he's either discovered a liking for sweet potatoes or has realized that we're not going to give up and he's just going to have to start eating this stuff. At most he's getting two teaspoons and that's probably being generous but it's something, in fact it's a huge something!!
We had another visit from "Services to Children and Adults of Prescott Russell". The Community Worker came with an Intervention Specialist and Medical Consultant to see if there was anything they could help us with. The Community Worker had met Caelan back in April and couldn't believe the change in him. She was really amazed at the progress he's made. In fact I got the impression that the other two Consultants wondered why they were here. The Intervention Specialist is scheduled to come back for further assessment next week but it looks like only Caelan's gross motor development is delayed.
We've been working really hard with his occupational therapy and he's doing fantastic. His neck is getting stronger all the time. He's able to sit with support and rolls over but insists on keeping one arm under his body. We continue to challenge him to push himself and he still rebels with everything in him, although, the recovery time for these fits has reduced substantially. If only we could channel all that energy into the right places!
I am so proud of our little guy. He amazes me every day... He has taught us all so much and has come so far in the five months he's been home. It's hard to believe that he has still slept more nights in the hospital than he has in his home but the night that changes is quickly approaching and that will be cause for a great celebration!!
Caelan had an appointment with opthamology back in August but it was a little frustrating. The Doctor agrees that it appears Caelan can see, he focuses on objects and follows them with both eyes. However, because they know that he has these great holes in the back of his eyeballs (the colobomas) they find that very hard to believe. We won't know for sure how well Caelan is able to see until he's better able to communicate that to us.
We met with a social worker from the infant hearing program who also happens to be the social worker for the blind/low vision program. What a fantastic lady! She provided us with lots of information and is in the process of getting a sign language instructor who will come to our home and teach all of us sign language. We are really looking forward to this.
Caelan had a follow up appointment with nephrology (kidney). Basically they just wanted to make sure that his blood pressure was not elevated - which it wasn't, it was great! - and they wanted to ensure that urology was going to try and correct the reflux. We still have not received confirmation of a date for the 'sting' operation.
Our visits with the dietician continue. We had one week where Caelan's weight took a bit of a dip but we're back on track and gaining. It would be so nice if I could just give him some of mine! He's tolerating his feeds well and we've increased the rate a bit. He's still spitting up but not so much we're concerned. We seem to have a pressure packed hour or so every day first thing in the morning, which now includes some impressive projectile - it often hits the end of the crib and beyond! As a result we've started trying to replace an estimated amount of what's been lost either by vomitting or his talent for feeding the bed/stroller by detaching his mic-key extension. It only takes seconds for him to be covered in neocate holding both ends of the mic-key extension with a great big grin on his face!
I think we also may have turned a corner with the oral feeds... well he's either discovered a liking for sweet potatoes or has realized that we're not going to give up and he's just going to have to start eating this stuff. At most he's getting two teaspoons and that's probably being generous but it's something, in fact it's a huge something!!
We had another visit from "Services to Children and Adults of Prescott Russell". The Community Worker came with an Intervention Specialist and Medical Consultant to see if there was anything they could help us with. The Community Worker had met Caelan back in April and couldn't believe the change in him. She was really amazed at the progress he's made. In fact I got the impression that the other two Consultants wondered why they were here. The Intervention Specialist is scheduled to come back for further assessment next week but it looks like only Caelan's gross motor development is delayed.
We've been working really hard with his occupational therapy and he's doing fantastic. His neck is getting stronger all the time. He's able to sit with support and rolls over but insists on keeping one arm under his body. We continue to challenge him to push himself and he still rebels with everything in him, although, the recovery time for these fits has reduced substantially. If only we could channel all that energy into the right places!
I am so proud of our little guy. He amazes me every day... He has taught us all so much and has come so far in the five months he's been home. It's hard to believe that he has still slept more nights in the hospital than he has in his home but the night that changes is quickly approaching and that will be cause for a great celebration!!
Sunday, September 6, 2009
I realized yesterday that I forgot to mention that Caelan also got his third tooth last week, it's his second on the bottom... Then I discovered that another one has appeared on the top!! So tooth #3 and #4 are through!!
Friday, September 25, 2009
 |
| Caelan helped change his diaper |
Our nursing has taken a turn for the worse. The weekend after my last entry we had no nursing the Friday, Saturday or Sunday night... made for a very long weekend (and not the good kind)! We made it through the week only to have no nurse again the following Sunday... then no nurse on Wednesday and it looks like no nurse for tonight or Sunday... Unfortunately, I have to admit that this probably makes a cranky Mommy. It's very frustrating and I just don't understand it.
We did have reason to celebrate last weekend though. Caelan has now officially slept more nights at home with his family than he has slept at CHEO. Thank you to the Cubaynes for celebrating with us! xoxo
Otherwise, I would say things are going well. Caelan's doing great, enjoying his oral feeds a little more all the time and working really hard at all his exercises. We also have another tooth now, that's #5, and with all the chomping I'm thinking there may be another one on the way but I can't get in there to feel around much!
This week coming up we have 2 hours of sign language instruction, an hour of occupational therapy exercises at home and then an appointment at CHEO with Infectious Disease and an appointment with Anasthesiology. Caelan's scheduled for his STING operation on Thursday October 8th. Can't complain because September was really pretty quiet for appointments, but October sure looks like it's making up for it!!
We did have reason to celebrate last weekend though. Caelan has now officially slept more nights at home with his family than he has slept at CHEO. Thank you to the Cubaynes for celebrating with us! xoxo
Otherwise, I would say things are going well. Caelan's doing great, enjoying his oral feeds a little more all the time and working really hard at all his exercises. We also have another tooth now, that's #5, and with all the chomping I'm thinking there may be another one on the way but I can't get in there to feel around much!
This week coming up we have 2 hours of sign language instruction, an hour of occupational therapy exercises at home and then an appointment at CHEO with Infectious Disease and an appointment with Anasthesiology. Caelan's scheduled for his STING operation on Thursday October 8th. Can't complain because September was really pretty quiet for appointments, but October sure looks like it's making up for it!!
Wednesday, October 7, 2009
Busy, busy, busy...
We continue all our exercises at home and Caelan is sitting better and better all the time. Still requires some support but he's come so far and his mind is working all the time. He's so curious or nosey, which ever you want to call it, I'm grateful... and perhaps more so because he isn't crawling yet!! I can't believe how much he can get into as it is!! He's a growing concern!! Things are still very much his way though - tummy time is done on his terms, and when it comes to kneeling or putting weight on his feet... well let's just say that Caelan's not on board with that yet!!
I'm loving our sign language lessons! Although I must admit that I need to strengthen the muscles in my hands!! It's unbelievable how tired they can get during a two hour lesson (and kind of sad).
We had an appointment with Infectious Disease to discuss the possibility of Caelan being immune deficient. This is sometimes a concern in CHARGE and with Caelan's three UTI's it was definitely something we thought would be worth exploring. However after discussing it with the Infectious Disease Doctor we all feel that it's highly unlikely. If Caelan was in fact immune deficient he would have, or should have, had many more infections and more of the respiratory kind. To be safe, blood work was ordered and we'll review the results in about a months time.
Caelan was scheduled for his STING operation for tomorrow. Unfortunately late this afternoon I received a call from CHEO advising that Caelan's surgery would have to be postponed because there are no beds available for him. It is supposed to be a day surgery and I can't say I wasn't tempted to keep the surgery as scheduled and just bring him home after... but there is a reason why they granted him his one night stay. He is a complicated little boy... So we wait to hear back for a rescheduled date. I didn't realize how anxious I was about it until it was cancelled and I don't look forward to anticipating it all over again.
On a brighter note, we've had nursing every night for ten nights in a row!!! It's been a long time since I've been able to say that. :)
We continue all our exercises at home and Caelan is sitting better and better all the time. Still requires some support but he's come so far and his mind is working all the time. He's so curious or nosey, which ever you want to call it, I'm grateful... and perhaps more so because he isn't crawling yet!! I can't believe how much he can get into as it is!! He's a growing concern!! Things are still very much his way though - tummy time is done on his terms, and when it comes to kneeling or putting weight on his feet... well let's just say that Caelan's not on board with that yet!!
I'm loving our sign language lessons! Although I must admit that I need to strengthen the muscles in my hands!! It's unbelievable how tired they can get during a two hour lesson (and kind of sad).
We had an appointment with Infectious Disease to discuss the possibility of Caelan being immune deficient. This is sometimes a concern in CHARGE and with Caelan's three UTI's it was definitely something we thought would be worth exploring. However after discussing it with the Infectious Disease Doctor we all feel that it's highly unlikely. If Caelan was in fact immune deficient he would have, or should have, had many more infections and more of the respiratory kind. To be safe, blood work was ordered and we'll review the results in about a months time.
Caelan was scheduled for his STING operation for tomorrow. Unfortunately late this afternoon I received a call from CHEO advising that Caelan's surgery would have to be postponed because there are no beds available for him. It is supposed to be a day surgery and I can't say I wasn't tempted to keep the surgery as scheduled and just bring him home after... but there is a reason why they granted him his one night stay. He is a complicated little boy... So we wait to hear back for a rescheduled date. I didn't realize how anxious I was about it until it was cancelled and I don't look forward to anticipating it all over again.
On a brighter note, we've had nursing every night for ten nights in a row!!! It's been a long time since I've been able to say that. :)
Friday, October 16, 2009
I spoke too soon! We had no nursing on Sunday or Tuesday... ARGH!! Don't think I'll mention any long stretches again for fear of putting them to an end!
Before I forget, Caelan's STING operation has been rescheduled for November 12th. It seems a long time away but I know it will come fast enough.
We had three appointments this week... first Caelan weighed in with the dietician. He's 7.61 kilos or 16 lbs. 7 oz. We're really happy with his weight gain and we've started discussing the possibility trying a milk based formula. Caelan was put on neocate because of a suspected milk allergy but it was never confirmed - it was basically a possibility we wanted to eliminate from the picture when those first few months were so rough. If it doesn't work then he would graduate from the neocate infant formula to neocate junior sometime after his first birthday.
I had another sign language lesson on Wednesday... bad day for it since I'd been up since 2am! It's so much fun though and Caelan loves it. It's amazing how he really watches those hands. I'm told I'm signing well but need to work on my body language and facial expression since they make up a part of signing and... well ... mine give away the fact that I'm really concentrating and unsure! Practice, practice, practice!
We had our first official appointment with physiotherapy at the Ottawa Children's Treatment Centre (OCTC). It was very encouraging and we look forward to going back in two weeks. We have some exercises to work on at home in the meantime. They assured me that although it's unlikely that Caelan will ever crawl, he will probably "bum scootch" before walking. This is due to the lack of tummy time and the upper body strength that comes with it. There are other ways to strengthen those muscles and we will work on those instead of sending him into a fit on his tummy. Once again, they were impressed with his progress since his intake interview. He's come so far and works so hard it's really nice when someone notices the good. It's wonderful to hear "oh wow, look how great he's sitting!" or "He's doing great, look how he's putting his feet down!" When you see him every day sometimes you need someone else to point these things out to you. It's important that we remember just how much he has accomplished ...
... IN ONE YEAR!!! I can't believe it's been a year! We are excited about celebrating Caelan's first birthday and are looking forward to a little party on Sunday with family and friends. There are so many people to thank for all their love and support over the last year... I get all emotional any time I think about it and the words escape me. Please know that we REALLY appreciate it!
Before I forget, Caelan's STING operation has been rescheduled for November 12th. It seems a long time away but I know it will come fast enough.
We had three appointments this week... first Caelan weighed in with the dietician. He's 7.61 kilos or 16 lbs. 7 oz. We're really happy with his weight gain and we've started discussing the possibility trying a milk based formula. Caelan was put on neocate because of a suspected milk allergy but it was never confirmed - it was basically a possibility we wanted to eliminate from the picture when those first few months were so rough. If it doesn't work then he would graduate from the neocate infant formula to neocate junior sometime after his first birthday.
I had another sign language lesson on Wednesday... bad day for it since I'd been up since 2am! It's so much fun though and Caelan loves it. It's amazing how he really watches those hands. I'm told I'm signing well but need to work on my body language and facial expression since they make up a part of signing and... well ... mine give away the fact that I'm really concentrating and unsure! Practice, practice, practice!
We had our first official appointment with physiotherapy at the Ottawa Children's Treatment Centre (OCTC). It was very encouraging and we look forward to going back in two weeks. We have some exercises to work on at home in the meantime. They assured me that although it's unlikely that Caelan will ever crawl, he will probably "bum scootch" before walking. This is due to the lack of tummy time and the upper body strength that comes with it. There are other ways to strengthen those muscles and we will work on those instead of sending him into a fit on his tummy. Once again, they were impressed with his progress since his intake interview. He's come so far and works so hard it's really nice when someone notices the good. It's wonderful to hear "oh wow, look how great he's sitting!" or "He's doing great, look how he's putting his feet down!" When you see him every day sometimes you need someone else to point these things out to you. It's important that we remember just how much he has accomplished ...
... IN ONE YEAR!!! I can't believe it's been a year! We are excited about celebrating Caelan's first birthday and are looking forward to a little party on Sunday with family and friends. There are so many people to thank for all their love and support over the last year... I get all emotional any time I think about it and the words escape me. Please know that we REALLY appreciate it!
Tuesday, October 20, 2009
 |
| Campbell and Caelan having a grand time! |
Master Caelan spent his true birthday meeting his new Occupational Therapist at OCTC. Not sure Caelan thought this was the best way to be spending his special day but we managed some fun in there too. Last night the girls thought it was important that we go out for dinner to celebrate Caelan's birthday so off to East Side Mario's we went. We all had a good time and he even tried a little ice cream for dessert ... wasn't impressed!
Wednesday, October 28, 2009
Last week Caelan had an appointment with ENT and audiology. Nothing exciting to report. Caelan didn't cooperate with his hearing test and made no acknowledgement what-so-ever to the noises going on to the left of him. He was far more interested in the blocks being played with in front of him to be interested in some silly clapping bear! With no fun being had there they took a sneak peak inside Caelan's ear, which he found quite offensive. I was quickly becoming aware that Caelan was not himself, much more of a cranky pants than our usual happy go lucky boy.
This was even more apparent when our speech language pathologist noticed us and came over for a chat. Caelan immediately started crying and I don't think she'd even mentioned the speaking valve yet!! He was miserable the entire time she stayed with us - I think he definitely knows that voice and doesn't associate it with pleasant memories! (He had a fever that night and developped a bit of a cold but he's pretty much back to himself this week)
We discussed my concerns about Caelan spitting up and not always as a result of him coughing. We were referred back to the surgeon who repaired his esophagus/stomach and did the fundoplication and actually already had that appointment earlier this week. As a result Caelan will have a barium test in early November to determine if the fundo is still holding. The fundo was when they tightened the top of his stomach to reduce or prevent his reflux.
We had a follow up appointment with Nephrology. Caelan's kidney is considered stable and we need to do everything possible to protect it. That STING operation can't come soon enough. We will now have to complete standard blood work every three months to keep an eye on the functionality of his kindey. Good news was that his blood pressure was great!
Today we met with Infectious Disease to discuss the results from all the blood work we did earlier in the month. This was to determine if Caelan was immune defficient. Not all the results are back, but usually the problem is with the T cells and Caelan's are normal. This means there's no concern with Caelan getting a live vaccine and has been given the go ahead for his 1 year shots...
However, this brings us to the H1N1 vaccine. It was strongly recommended that Caelan get that first and soon. He is considered high risk but I pointed out that I'm not too excited about the idea of bringing an already high risk child to wait in a line up for 4 hours!!! We're supposed to be keeping him away from crowds!??!? I'm hoping that the clinics outside of the city have better wait times and maybe I'll call ahead and explain our situation. There is a chance that a clinic may be opening at CHEO next week for high risk kids like Caelan but I"m not sure that's a definite yet.
Once we're through the H1N1, we wait 2 weeks and Caelan will get his RSV shot, then we wait another 2 weeks and he'll get his 1 year shots... Sound like fun?? I don't think so!!
This was even more apparent when our speech language pathologist noticed us and came over for a chat. Caelan immediately started crying and I don't think she'd even mentioned the speaking valve yet!! He was miserable the entire time she stayed with us - I think he definitely knows that voice and doesn't associate it with pleasant memories! (He had a fever that night and developped a bit of a cold but he's pretty much back to himself this week)
We discussed my concerns about Caelan spitting up and not always as a result of him coughing. We were referred back to the surgeon who repaired his esophagus/stomach and did the fundoplication and actually already had that appointment earlier this week. As a result Caelan will have a barium test in early November to determine if the fundo is still holding. The fundo was when they tightened the top of his stomach to reduce or prevent his reflux.
We had a follow up appointment with Nephrology. Caelan's kidney is considered stable and we need to do everything possible to protect it. That STING operation can't come soon enough. We will now have to complete standard blood work every three months to keep an eye on the functionality of his kindey. Good news was that his blood pressure was great!
Today we met with Infectious Disease to discuss the results from all the blood work we did earlier in the month. This was to determine if Caelan was immune defficient. Not all the results are back, but usually the problem is with the T cells and Caelan's are normal. This means there's no concern with Caelan getting a live vaccine and has been given the go ahead for his 1 year shots...
However, this brings us to the H1N1 vaccine. It was strongly recommended that Caelan get that first and soon. He is considered high risk but I pointed out that I'm not too excited about the idea of bringing an already high risk child to wait in a line up for 4 hours!!! We're supposed to be keeping him away from crowds!??!? I'm hoping that the clinics outside of the city have better wait times and maybe I'll call ahead and explain our situation. There is a chance that a clinic may be opening at CHEO next week for high risk kids like Caelan but I"m not sure that's a definite yet.
Once we're through the H1N1, we wait 2 weeks and Caelan will get his RSV shot, then we wait another 2 weeks and he'll get his 1 year shots... Sound like fun?? I don't think so!!
Tuesday, November 3, 2009
On Sunday, Caelan, Darcy and I went and got our H1N1 flu shot. I guess we're lucky to live out of town since we had no line up at all - we basically walked in, completed paperwork, got our shots and waited our mandatory 15 minutes afterwards. Ryland was on a playdate and Damian was in town studying for his Canfit exam so they'll be heading out to get theirs this week. We're lucky to have great friends close by - Thank you to the Labontés for giving us the scoop on the low wait times and for driving us!! It really took a lot off my mind to know that Caelan had got his shot.
However, that good feeling didn't last... Caelan was not himself on Sunday night. He was cranky and miserable. Crying constantly and nearly impossible to settle. He actually fell asleep in Damian's arms and that NEVER happens - our boy LOVES his bed, he's definitely not normally a snuggler! He is cutting another tooth (on the bottom) and we were trying to adjust his feeds to the new time change, so there was a lot going on. He didn't settle well all night and by 2 am he had a fever of 101.2, which he brought down to 100 by 5 am all on his own. He was still restless and unsettled, crying in his sleep, and by 6 we gave him some tylenol. We've been on a pretty regular schedule of tylenol since then. All I can think is that if his leg hurts like my arm does, or if he's got the all over ache like I do then the tylenol will help.
We did make an appointment with his pediatrician yesterday afternoon to ensure that we weren't overlooking any ear infection, strep throat or anything else - basically that this really was all a reaction to the shot. The pediatrician expressed some concern about the fever, and because Caelan is high risk he's been put on Tamiflu for 5 days. We certainly don't was to take any chances. So we will have an "at home" week as I will be cancelling all our CHEO and OCTC appointments - good thing it was a quiet week, only three appointments to try and reschedule!
Tuesday, November 10, 2009
Alright, so third night in a week with no nurse... and I get it, they get sick too - but shouldn't there be a back up?!?! It's very frustrating when we've all been sick too!! Last week was awful. Caelan was sick and miserable and both Damian and I ended up with strep throat!
I was hoping that this week would be a new beginning, although I knew it would be a crazy one. We had appointments every day and I was expecting a whirlwind week.
Monday we started with a home therapy session for Caelan. He was actually still sleeping when the therapist got here so we reviewed his progress to date. It was an eye opening experience to be able to tick off all these mini milestones in a giant checklist that she uses to mark his progress. It's amazing... when you work with him every day it doesn't always seem like you're getting anywhere... it was lovely to see that we are making great progress.
Then the phone call came cancelling Caelan's STING operation (that was scheduled for Thursday) AGAIN!!! We had heard that they were cancelling all the elective surgeries and knew there was a possibility that it may get cancelled but it was frustrating to hear none the less. I even called back to enquire further. Caelan's operation is normally a day surgery where children return home that same day, but because Caelan is so special he gets one free night. The reason the surgery was cancelled was because they don't want anyone else admitted, so everything was being cancelled. I wondered if they would still do the surgery if we brought him home since we have a nurse here overnight to observe him anyway. In retrospect it may be a little ridiculous... most days I'm trying to decide how to keep him away from CHEO and whether I should be cancelling this appointment or that one, which ones are really necessary and yet when they call and cancel I'm trying to figure out a way around it to get my son in there?!?!!? A friend of ours went through similar emotions when her son's surgery was cancelled... you're so angry and frustrated that they cancelled this surgery that you've been working yourself up for that it takes a while for you to realize that this is in their best interest. There is a reason for it. This will keep them safe. So... you roll with it, again... Our crazy week just calmed down significantly... accept it!
Tuesday we start our day with the barium test at 9am. This test will show us if or how well the fundoplication is holding. Unfortunately, it also requires that Caelan have absolutely nothing in his stomach from midnight on. As I type this I can tell you that he is very much aware that he was supposed to start a feed 40 minutes ago - and this is only the first feed that he'll miss. He ends up missing his 2am and 6am feed and I wouldn't be surprised if his 10am was late!! It's going to be a long night. This was one of the tests that I strongly considered cancelling to keep Caelan out of CHEO, but I think that it's important enough to take him. I just really hate having to put him through this to do it. If only there were some other way... but I've found myself thinking that a lot over the past year.
Wednesday we're off to a milk allergy test and scheduled to head back to OCTC for physiotherapy. By then it will have been 10 days from Caelan's first dose of H1N1 vaccine so I'll feel a little better bringing him to appointments hoping that will help him fight anything off. Not that we're going to start hitting the malls, we will continue to keep Caelan clear of crowded spaces, but it eases my mind a bit with regards to all his appointments.
I was hoping that this week would be a new beginning, although I knew it would be a crazy one. We had appointments every day and I was expecting a whirlwind week.
Monday we started with a home therapy session for Caelan. He was actually still sleeping when the therapist got here so we reviewed his progress to date. It was an eye opening experience to be able to tick off all these mini milestones in a giant checklist that she uses to mark his progress. It's amazing... when you work with him every day it doesn't always seem like you're getting anywhere... it was lovely to see that we are making great progress.
Then the phone call came cancelling Caelan's STING operation (that was scheduled for Thursday) AGAIN!!! We had heard that they were cancelling all the elective surgeries and knew there was a possibility that it may get cancelled but it was frustrating to hear none the less. I even called back to enquire further. Caelan's operation is normally a day surgery where children return home that same day, but because Caelan is so special he gets one free night. The reason the surgery was cancelled was because they don't want anyone else admitted, so everything was being cancelled. I wondered if they would still do the surgery if we brought him home since we have a nurse here overnight to observe him anyway. In retrospect it may be a little ridiculous... most days I'm trying to decide how to keep him away from CHEO and whether I should be cancelling this appointment or that one, which ones are really necessary and yet when they call and cancel I'm trying to figure out a way around it to get my son in there?!?!!? A friend of ours went through similar emotions when her son's surgery was cancelled... you're so angry and frustrated that they cancelled this surgery that you've been working yourself up for that it takes a while for you to realize that this is in their best interest. There is a reason for it. This will keep them safe. So... you roll with it, again... Our crazy week just calmed down significantly... accept it!
Tuesday we start our day with the barium test at 9am. This test will show us if or how well the fundoplication is holding. Unfortunately, it also requires that Caelan have absolutely nothing in his stomach from midnight on. As I type this I can tell you that he is very much aware that he was supposed to start a feed 40 minutes ago - and this is only the first feed that he'll miss. He ends up missing his 2am and 6am feed and I wouldn't be surprised if his 10am was late!! It's going to be a long night. This was one of the tests that I strongly considered cancelling to keep Caelan out of CHEO, but I think that it's important enough to take him. I just really hate having to put him through this to do it. If only there were some other way... but I've found myself thinking that a lot over the past year.
Wednesday we're off to a milk allergy test and scheduled to head back to OCTC for physiotherapy. By then it will have been 10 days from Caelan's first dose of H1N1 vaccine so I'll feel a little better bringing him to appointments hoping that will help him fight anything off. Not that we're going to start hitting the malls, we will continue to keep Caelan clear of crowded spaces, but it eases my mind a bit with regards to all his appointments.
Wednesday, November 25, 2009
Big news since my last entry...
Caelan did fantastic leading up to his barium test. I was amazed that he did so well with nothing in his tummy for so long. He was restless through the night but was all smiles in the morning and only got upset when he was held in place during the actual test. The barium test concluded without a doubt that he is refluxing, something that we were already well aware of. We met with the surgeon who jumped all over doing the fundoplication again to re-tighten the top of his stomach. We have decided to get a second opinion for several reasons and will meet with another surgeon December 10th. This has been a concern of mine for a long time and never felt like it was taken seriously, and although there are some major side affects to all the reflux we don't want Caelan to have to have surgery every year! We would expect the fundo to last longer than that and want to make sure Caelan's stomach has grown enough to make the fundo hold.
Caelan had his milk allergy test and has NO milk allergy. Hooray!! We have a plan of action to wean Caelan off his stinky neocate formula and change him to a new "milk" called Nutrin Junior. I am especially excited about the fact that there is no prep with the Nutrin Junior, just pop open the can and pour it in!! No more mixing formula -- IF he tolerates it! We will be going very slowly to make sure his tummy can handle it and there are alternatives if he doesn't but it's a very exciting step forward...
Caelan continues to grow... he's up to 18lbs!! He's doing great. He's SOOOO close to sitting on his own and gets a little more core strength all the time. He loves spending time in his exersaucer and it's paid off because now he'll put weight on his legs, not for long and not all the time, but it's a start. He's loving the sign language... he's clapping and waving and I'm anxious for his first clear sign. The other night he scooched himself across the floor on his back but we haven't seen a repeat performance, it's like he forgot overnight. It was a big step for him to push off with his feet and it's a little frustrating for him to tease us like that but I'm sure he'll do it again when we least expect it!
Caelan did fantastic leading up to his barium test. I was amazed that he did so well with nothing in his tummy for so long. He was restless through the night but was all smiles in the morning and only got upset when he was held in place during the actual test. The barium test concluded without a doubt that he is refluxing, something that we were already well aware of. We met with the surgeon who jumped all over doing the fundoplication again to re-tighten the top of his stomach. We have decided to get a second opinion for several reasons and will meet with another surgeon December 10th. This has been a concern of mine for a long time and never felt like it was taken seriously, and although there are some major side affects to all the reflux we don't want Caelan to have to have surgery every year! We would expect the fundo to last longer than that and want to make sure Caelan's stomach has grown enough to make the fundo hold.
Caelan had his milk allergy test and has NO milk allergy. Hooray!! We have a plan of action to wean Caelan off his stinky neocate formula and change him to a new "milk" called Nutrin Junior. I am especially excited about the fact that there is no prep with the Nutrin Junior, just pop open the can and pour it in!! No more mixing formula -- IF he tolerates it! We will be going very slowly to make sure his tummy can handle it and there are alternatives if he doesn't but it's a very exciting step forward...
Caelan continues to grow... he's up to 18lbs!! He's doing great. He's SOOOO close to sitting on his own and gets a little more core strength all the time. He loves spending time in his exersaucer and it's paid off because now he'll put weight on his legs, not for long and not all the time, but it's a start. He's loving the sign language... he's clapping and waving and I'm anxious for his first clear sign. The other night he scooched himself across the floor on his back but we haven't seen a repeat performance, it's like he forgot overnight. It was a big step for him to push off with his feet and it's a little frustrating for him to tease us like that but I'm sure he'll do it again when we least expect it!
Thursday, December 3, 2009 9:01 AM, CST
Just a quick update to let everyone know that Caelan had his synagis shot last Friday. This protects him against a respiratory synsytical virus (RSV) that is common in infancy and early childhood. Basically all children get this by the age of two but some are especially at risk of developing serious respiratory infections. Caelan being high risk qualifies for the shot to protect him agains these infectins. Unfortunately for him it means a shot once a month until spring!
Yesterday we were able to get the rest of Caelan's immunizations up to date. Not a great day for him, but a lot off my mind! We went to Caelan's pediatrician and he got his 2nd dose of H1N1 in his thigh and then got his 12 month shots in each arm. He's doing really well and no adverse reactions this time!
After our visit to the pediatrician we were off to OCTC for occupational therapy. I wasn't expecting a long visit, thinking that Caelan might be grumpy after all his shots, but we had a great time. Caelan was introduced to the "snoezelen" room. It was AWESOME!! It's a dark room with fabulous sensory stimulation, a ball bath that glows, fiberoptic lighting, vibrations, different textures and dim lights everywhere. It was very relaxing and he loved it!! He even stayed on his tummy completely relaxed on top of Damian's chest for a while. It was amazing! I'm really looking forward to going back in two weeks since our therapist is going to make it part of our regular routine.
Yesterday we were able to get the rest of Caelan's immunizations up to date. Not a great day for him, but a lot off my mind! We went to Caelan's pediatrician and he got his 2nd dose of H1N1 in his thigh and then got his 12 month shots in each arm. He's doing really well and no adverse reactions this time!
After our visit to the pediatrician we were off to OCTC for occupational therapy. I wasn't expecting a long visit, thinking that Caelan might be grumpy after all his shots, but we had a great time. Caelan was introduced to the "snoezelen" room. It was AWESOME!! It's a dark room with fabulous sensory stimulation, a ball bath that glows, fiberoptic lighting, vibrations, different textures and dim lights everywhere. It was very relaxing and he loved it!! He even stayed on his tummy completely relaxed on top of Damian's chest for a while. It was amazing! I'm really looking forward to going back in two weeks since our therapist is going to make it part of our regular routine.
Tuesday, December 8, 2009
Well today's the day... Caelan's dietician dropped off our sample of Nutren Jr. this morning and in just a couple minutes Caelan will be getting his first try of a milk based formula!!! Very exciting for Mommy anyway... can't wait to pop open that can!!
Plan is to try one feed a day for two weeks and watch for any adverse reactions.
Plan is to try one feed a day for two weeks and watch for any adverse reactions.
Thursday, December 10, 2009
It's looking good so far! He spit up three times during the first feed of the new milk. Not great, but not unheard of for Caelan either. Good news is that the new milk is vanilla flavoured and smells A LOT better than neocate!! I know Caelan can't taste it but it's much more pleasant for the rest of us! The second feed went even better with only one spit up. He doesn't seem to have any more gas or cramps than usual. He has been a little crankier in the evening, but he's also been messing with his naps a bit. All in all it's looking very promising!!
We've got a busy day ahead of us today. We start off in surgery to get our second opinion for Caelan's potential second fundoplication - I'm really anxious to hear what they have to say. Then we have physiotherapy at OCTC - I can only hope we'll get to go back in the snoezelen room! Finally we have a vision therapy session - I'm not really sure what that will be but am interested in finding out... just hope we don't have to wait as long as we did in clinic!!
We've got a busy day ahead of us today. We start off in surgery to get our second opinion for Caelan's potential second fundoplication - I'm really anxious to hear what they have to say. Then we have physiotherapy at OCTC - I can only hope we'll get to go back in the snoezelen room! Finally we have a vision therapy session - I'm not really sure what that will be but am interested in finding out... just hope we don't have to wait as long as we did in clinic!!
Tuesday, December 22, 2009
Happy holidays to everyone! Caelan is in full holiday mode, staying up late and sleeping half the day away!! Gaining weight in true Christmas fashion too. He's up to 18 lbs 4 oz. and doing well with the transition to his new formula. The plan is to switch over completely after the holidays. He is also fascinated with the Christmas tree. At first he wasn't so sure, it is kind of picky, but I think the lights won him over... and well... he's discovered that he can scootch himself under the tree and then swat at all the pretty decorations on the lower branches and that gets Mommy's attention pretty quick!!
We had our meeting for the second opinion with the other surgeon and he agreed that the fundoplication was definitely required. He spent time explaining things and we've set our minds that this will be done early in the new year. We just have to hope that Caelan's stomach is that much bigger and that this time it will hold a little longer. No guarantees though.
At the opthamology appointment we were given another exercise to add to his list. His right eye needs strengthening so he'll be wearing a patch on his left eye for about an hour a day.
A much more fun exercise was prescribed at our visit with OCTC. Caelan came home with a "pony". It's actually a very professional-medical looking walker. Caelan LOVES it! He sits/stands upright on a saddle, leaning forward on a chest plate. He's strapped in secure and with the tips of his toes he can wheel himself about! So far he's much better at moving backwards but he's SO PROUD of himself!! The independance is exactly what he's been craving and the ability to get about and into a whole new range of trouble!!
We've met with the Blind Low Vision Therapist for our area. Our first visit was great, what a fantastic lady! She'll be coming to our home every other week in the new year to work with Caelan and will continue to work with him until she helps with the transition to school.
We went for a tour of the Rotary Home in Ottawa. They actually just a moved into a new building earlier this year and the facility is amazing. We're planning a half day visit in January so the nurses there can get to know Caelan and create a care plan for him. It's wonderful to have this other option for respite. We were very impressed with everyone we met there and of course Caelan won them all over with his flirtatious grins!!
Unfortunately we're all fighting a miserable cold this week. Hopefully we'll be able to get control of it in the next couple days. Thankfully there are no appointments for Caelan for the two weeks the girls are off school so we can all enjoy the holiday season without making trips in to see doctors or therapists! I think this will be the first time that we've ever gone two weeks without an appointment and I must admit that I'm really looking forward to it and I'm sure Caelan is too!!
We had our meeting for the second opinion with the other surgeon and he agreed that the fundoplication was definitely required. He spent time explaining things and we've set our minds that this will be done early in the new year. We just have to hope that Caelan's stomach is that much bigger and that this time it will hold a little longer. No guarantees though.
At the opthamology appointment we were given another exercise to add to his list. His right eye needs strengthening so he'll be wearing a patch on his left eye for about an hour a day.
A much more fun exercise was prescribed at our visit with OCTC. Caelan came home with a "pony". It's actually a very professional-medical looking walker. Caelan LOVES it! He sits/stands upright on a saddle, leaning forward on a chest plate. He's strapped in secure and with the tips of his toes he can wheel himself about! So far he's much better at moving backwards but he's SO PROUD of himself!! The independance is exactly what he's been craving and the ability to get about and into a whole new range of trouble!!
We've met with the Blind Low Vision Therapist for our area. Our first visit was great, what a fantastic lady! She'll be coming to our home every other week in the new year to work with Caelan and will continue to work with him until she helps with the transition to school.
We went for a tour of the Rotary Home in Ottawa. They actually just a moved into a new building earlier this year and the facility is amazing. We're planning a half day visit in January so the nurses there can get to know Caelan and create a care plan for him. It's wonderful to have this other option for respite. We were very impressed with everyone we met there and of course Caelan won them all over with his flirtatious grins!!
Unfortunately we're all fighting a miserable cold this week. Hopefully we'll be able to get control of it in the next couple days. Thankfully there are no appointments for Caelan for the two weeks the girls are off school so we can all enjoy the holiday season without making trips in to see doctors or therapists! I think this will be the first time that we've ever gone two weeks without an appointment and I must admit that I'm really looking forward to it and I'm sure Caelan is too!!
No comments:
Post a Comment