As promised...I wanted to provide some video of Cannon playing tennis. This is from his most recent lesson this past Sunday. Needless to say, we are all impressed and proud of Cannon.
Tuesday, November 22, 2011
Friday, November 18, 2011
Final Pittsburgh Details
Well, Cannon and I had a successful trip. We got home safely last night with a slight delay in Pittsburgh which has become part of the norm.
The last part of the day was Cannon's physical assessment. We were very pleased with Cannon as he was able to move farther along in the testing than ever before. The different tests are given until he cannnot complete 3 exercises in a row. On this visit Cannon was able to get through the entire test!
This video below was a big thing for Cannon. He was terrified of jumping off the chair and it took us about 10 minutes to talk him into trying it. Even though he needed a spotter to keep him from falling...this was a huge accomplishment for him.
The last part of the day was Cannon's physical assessment. We were very pleased with Cannon as he was able to move farther along in the testing than ever before. The different tests are given until he cannnot complete 3 exercises in a row. On this visit Cannon was able to get through the entire test!
This video below was a big thing for Cannon. He was terrified of jumping off the chair and it took us about 10 minutes to talk him into trying it. Even though he needed a spotter to keep him from falling...this was a huge accomplishment for him.
This video is Cannon jumping over a piece of tape that was 10 inches off the ground. He tried this 3 months ago and couldn't do it. While he still needed help with his landing...he cleared the height with room to spare and his distance was also impressive!
Overrall, Cannon did very well and we are so pleased with his progress.
Thursday, November 17, 2011
Pittsburgh Visit
Cannon and I had a good flight last night and had time to chill in our hotel room. We ordered room service and watched Batman...he was spoiled.
We have already done most of our testing today...we are just waiting on the physical therapist to come in and do the physical assessment.
We have learned so far that in the past 3 months Cannon has grown an inch taller, gained 2 lbs and his x-rays reveal significant increase in bone density. This is all exciting news and we will have more to follow after his PT assessment this afternoon.
We have already done most of our testing today...we are just waiting on the physical therapist to come in and do the physical assessment.
We have learned so far that in the past 3 months Cannon has grown an inch taller, gained 2 lbs and his x-rays reveal significant increase in bone density. This is all exciting news and we will have more to follow after his PT assessment this afternoon.
Sunday, November 13, 2011
9 month update
Well I am posting tonight for the first time in a while and I appreciate all of the loyal followers who have been waiting to hear from us. I apologize for the delay.
As we speak, Deborah is on a plane to Belgium to meet with Enobia to discuss the importance of Soft Bones to the HPP community among other important things. So while we have exciting things as a foundation...Cannon also has exciting things happening!
This week marks the 9th month that Cannon has been on the trial. We will be heading to Pittsburgh on Thursday for his quarterly visit and we are thrilled with all of his progress.
He has been taking tennis lessons and doing great! I hope to have video of this soon to post. He runs around doing all of the drills and has excellent instincts according to his coach. He is always asking me to enroll him in soccer, baseball and other sports. I honestly struggle with this every time. What should I say...what should I do? But I think the take away is Cannon's confidence continues to grow every day and he thinks he can do anything.
More to come on Deb's return and our visit at Pittsburgh this week.
As we speak, Deborah is on a plane to Belgium to meet with Enobia to discuss the importance of Soft Bones to the HPP community among other important things. So while we have exciting things as a foundation...Cannon also has exciting things happening!
This week marks the 9th month that Cannon has been on the trial. We will be heading to Pittsburgh on Thursday for his quarterly visit and we are thrilled with all of his progress.
He has been taking tennis lessons and doing great! I hope to have video of this soon to post. He runs around doing all of the drills and has excellent instincts according to his coach. He is always asking me to enroll him in soccer, baseball and other sports. I honestly struggle with this every time. What should I say...what should I do? But I think the take away is Cannon's confidence continues to grow every day and he thinks he can do anything.
More to come on Deb's return and our visit at Pittsburgh this week.
Saturday, September 24, 2011
9-24-11 update
We had our 3rd annual Soft Bones Golf Classic back on Sept 12. We had a fantastic turnout and the weather couldn't have been better.
We had a record number of golfers (113), dinner guests (140) and profits (~$115k). Cannon joined me for our last 4 holes and had a great time trying to putt and drive the golf cart.
He continues to impress everyone with his athletic skills. He is quite the little golfer and as I found out today...tennis player. He was very upset when he found out that Grace was starting tennis lessons and that he wasn't involved. So, I signed him up. His coach was impressed with his hand/eye coordination and he hit almost every ball back over the net...forehand and backhand. He even did the jumping jacks that were required of him...what a kid!
Next time I will get some pictures of this and hopefully video. Stay tuned!
We had a record number of golfers (113), dinner guests (140) and profits (~$115k). Cannon joined me for our last 4 holes and had a great time trying to putt and drive the golf cart.
He continues to impress everyone with his athletic skills. He is quite the little golfer and as I found out today...tennis player. He was very upset when he found out that Grace was starting tennis lessons and that he wasn't involved. So, I signed him up. His coach was impressed with his hand/eye coordination and he hit almost every ball back over the net...forehand and backhand. He even did the jumping jacks that were required of him...what a kid!
Next time I will get some pictures of this and hopefully video. Stay tuned!
Tuesday, August 23, 2011
6 month Update
Cannon and I flew to Pittsburgh on Sunday evening for his 6 month visit. After a very long weather delay and almost being bumped off the flight to begin with...a very nice service person at Continental ended up bumping us to first class so we didn't miss the flight. It was Cannon's first experience in first class and he loved it. He could almost lay down sideways in the big wide chair!
The appointment on Monday was packed with stuff to do and there was hardly time to eat or go to the bathroom.
We started off with kidney ultrasounds and x-rays. Everything looked good with the ultrasounds and the x-rays revealed that there was definite improvement with the bones. The bones looked much more mineralized...so this obviously makes them stronger. We were very pleased to see this.
After the x-rays we went right to the eye exam. Most of this went very smoothly until they had to dilate Cannon's eyes to be able to look at the back of his eye and optic nerve. He kicked and screamed but we eventually got the drops in. After the exam the Dr. said everything looked perfect and there was no pressure on the optic nerve. This is often a concern with HPP patients because of the early closure of the cranial sutures...but Cannon doesn't have any issues.
At this point it was time to get all of Cannon's measurements as well as give blood and urine and get his injection. We were excited to see that Cannon grew 2.2 cm. This is a huge growth spurt in only 3 months! His overall growth is over 3 cm since we started the trial. His arm span also grew about 4 cm in just the past 3 months.
Cannon's injection went ok...as did his IV insertion.
His physical therapy assessment was the last thing of the day. As we had expected...he had a number of improvements. He ran 45 feet in 5.8 seconds...which is an obvious improvement considering he couldn't even run before. He did a number of throwing, bouncing, kicking and catching tests and he did very well.
One of the biggest improvements was his jumping abilities. Check out this video of his standing long jump.
The appointment on Monday was packed with stuff to do and there was hardly time to eat or go to the bathroom.
We started off with kidney ultrasounds and x-rays. Everything looked good with the ultrasounds and the x-rays revealed that there was definite improvement with the bones. The bones looked much more mineralized...so this obviously makes them stronger. We were very pleased to see this.
After the x-rays we went right to the eye exam. Most of this went very smoothly until they had to dilate Cannon's eyes to be able to look at the back of his eye and optic nerve. He kicked and screamed but we eventually got the drops in. After the exam the Dr. said everything looked perfect and there was no pressure on the optic nerve. This is often a concern with HPP patients because of the early closure of the cranial sutures...but Cannon doesn't have any issues.
At this point it was time to get all of Cannon's measurements as well as give blood and urine and get his injection. We were excited to see that Cannon grew 2.2 cm. This is a huge growth spurt in only 3 months! His overall growth is over 3 cm since we started the trial. His arm span also grew about 4 cm in just the past 3 months.
Cannon's injection went ok...as did his IV insertion.
His physical therapy assessment was the last thing of the day. As we had expected...he had a number of improvements. He ran 45 feet in 5.8 seconds...which is an obvious improvement considering he couldn't even run before. He did a number of throwing, bouncing, kicking and catching tests and he did very well.
One of the biggest improvements was his jumping abilities. Check out this video of his standing long jump.
He just jumped 26.2 inches!!! And I give him a perfect 10 on sticking the landing. At the beginning of the trial...he couldn't even jump 4 inches. What a big difference.
Here is another video of Cannon trying to jump over a piece of tape that is 10 inches high.
While he doesn't clear the height...he is actually high enough...he just doesn't quite jump far enough. That means he jumped over 10 inches in the air!!! What you don't see on the video is Cannon insisting on attempting this several times. He really felt he could do it and was determined to keep trying.
Cannon was very tired after a long day and fell asleep in the cab on the way to the airport. We are home now and will head back in November for the 9 month visit.
More to come as we see more progress!
Thursday, July 28, 2011
Becoming Fearless
We are at the Jersey shore for our Summer vacation. We are about 6 months into the trial and we continue to see progress with Cannon. Mostly it is his confidence...which we think stems from his increased strength.
Check out this video of Cannon on the boogie board. Keep in mind that this time last year...he wouldn't even go in the ocean without being held by someone...additionally, he has not even learned to swim without a bubble either!
He even rode some fast, dizzying rides at the amusement park here without hesitation. He was actually begging to ride them!
Additionally, he has totally adjusted to the injections and never puts up a fight or complains. FINALLY!
Tuesday, June 7, 2011
More steps
Things have been moving along nicely. Cannon has started back up with complaining about the injections. He does experience some burning from the shot...but that is one of the side effects. It never lasts very long and usually once the needle goes in...he is ok. I think the anticipation is the worst for him.
Now that nurse Mindy doesn't come to the house...things are much more flexible in terms of when we do the shots. Not having to wait around after the shot for an hour is also a convenience. However, I think Cannon is missing his playdates with Mindy's children. Cannon really enjoyed playing with them.
Check out this video that I recently took of Cannon helping me bring in the groceries. He continues to amaze us all the time.
Now that nurse Mindy doesn't come to the house...things are much more flexible in terms of when we do the shots. Not having to wait around after the shot for an hour is also a convenience. However, I think Cannon is missing his playdates with Mindy's children. Cannon really enjoyed playing with them.
Check out this video that I recently took of Cannon helping me bring in the groceries. He continues to amaze us all the time.
Monday, May 23, 2011
3 months in...
Well, Cannon and I ventured to Pittsburgh on May 18 as he has hit 3 months of being on the trial. All in all the visit was good.
The whole day was a whirlwind with waking up late because our alarm clock malfunctioned. We made the flight...and got to the hospital fine. Cannon was not happy about having to get a shot with a bigger needle and he put up a fight...just like old times. He wanted everyone out of the room before he would let me and even then it was a challenge.
Anyway he was a champ for all of the bloodwork, urine, height, weight, x-rays and physical tests. While everyone could visibly see his confidence and movement improvement...the tests will give us an indication of just how much.
One interesting note from Dr. Vockley (study Dr. at the Pittsburgh site)...it seems that the younger the patients that are on the medicine...the quicker they seem to respond. They are seeing faster and more dramatic results with these patients. They attribute this to the fact that the younger patients are typically more severe and have a lot less bone development than someone Cannon's age.
Around 3:00 in the afternoon, I got word that our 8:30 flight was cancelled and after spending 20 mins on hold with the airline...was able to get on the only other flight out that day at 6:30. This put us in a real rush as we were't done with all of the testing and needed to leave the hospital by 4:30. Thanks to everyone at the hospital cooperating with our schedule...we got to our gate at 6:00...only to find out that our flight was delayed 3 hours.
Anyway...we finally got home and await the results of all the testing. I will be in touch again as soon as I have some more information.
The whole day was a whirlwind with waking up late because our alarm clock malfunctioned. We made the flight...and got to the hospital fine. Cannon was not happy about having to get a shot with a bigger needle and he put up a fight...just like old times. He wanted everyone out of the room before he would let me and even then it was a challenge.
Anyway he was a champ for all of the bloodwork, urine, height, weight, x-rays and physical tests. While everyone could visibly see his confidence and movement improvement...the tests will give us an indication of just how much.
One interesting note from Dr. Vockley (study Dr. at the Pittsburgh site)...it seems that the younger the patients that are on the medicine...the quicker they seem to respond. They are seeing faster and more dramatic results with these patients. They attribute this to the fact that the younger patients are typically more severe and have a lot less bone development than someone Cannon's age.
Around 3:00 in the afternoon, I got word that our 8:30 flight was cancelled and after spending 20 mins on hold with the airline...was able to get on the only other flight out that day at 6:30. This put us in a real rush as we were't done with all of the testing and needed to leave the hospital by 4:30. Thanks to everyone at the hospital cooperating with our schedule...we got to our gate at 6:00...only to find out that our flight was delayed 3 hours.
Anyway...we finally got home and await the results of all the testing. I will be in touch again as soon as I have some more information.
Thursday, May 5, 2011
Cannon Climbs
Well I realize it has been a while since my last blog...but I am trying to post stuff that is new and exciting.
Check out this video of Cannon climbing up a 3 1/2 foot wall. His strength and determination continue to grow as does his confidence. We are so thrilled!
Another video of Cannon doing something he never considered in the past...it may not seem like much to most people...but Cannon was always afraid to do stuff like this. Go Cannon!
Additionally, May 18 will mark 3 months on the trial. After that, the nurse no longer comes to the house and we don't have to check vitals for each injection. This makes things easier on everyone.
Among other things...Cannon just celebrated his 6th birthday and he had a small party at our house. We had a great day and the local firetruck came and the kids got to climb around on it...and everyone seemed to have a great time!
We will be heading to Pittsburgh for the day on May 18th...and won't have to go back for a few months after that.
More to come as things progress.
Check out this video of Cannon climbing up a 3 1/2 foot wall. His strength and determination continue to grow as does his confidence. We are so thrilled!
Another video of Cannon doing something he never considered in the past...it may not seem like much to most people...but Cannon was always afraid to do stuff like this. Go Cannon!
Additionally, May 18 will mark 3 months on the trial. After that, the nurse no longer comes to the house and we don't have to check vitals for each injection. This makes things easier on everyone.
Among other things...Cannon just celebrated his 6th birthday and he had a small party at our house. We had a great day and the local firetruck came and the kids got to climb around on it...and everyone seemed to have a great time!
We will be heading to Pittsburgh for the day on May 18th...and won't have to go back for a few months after that.
More to come as things progress.
Friday, April 15, 2011
6 Week Visit to Pittsburgh
Deb and Cannon went to Pittsburgh this past week for Cannon's 6 week visit. We have seen such positive things already and we are really excited about the future.
This visit was only for blood work and some height and weight measurements...but the next visit in May will be much more informative as we will get to see how he does with his physical therapy and other markers for progress.
Since the inception of the study for Cannon he has grown 2 cm and gained one pound. There was no information provided to us as to how this compares to other patients...hopefully we will find out more later.
This visit was interesting because Microsoft donated a bunch of x-boxes to the hospital and they all got installed in the rooms while Cannon was there. This was a big deal as the local papers came out and did a story. Oddly enough...Cannon's picture made the paper in Pittsburgh, so his celebrity status continues to grow whereever he goes!
Click on link to see the article... http://www.pittsburghlive.com/x/pittsburghtrib/news/pittsburgh/s_731961.html
Strangely enough...some old friends from Mountain Lakes that had recently moved to Pittsburgh saw Cannon's picture in the paper and reached out to us. It's so nice to know we have some friends in Pittsburgh when we travel...thanks!
Also...check out Cannon's dance moves here... http://www.youtube.com/watch?v=7cmcvro51d8 The things you do to pass the down time while at the hospital!
This visit was only for blood work and some height and weight measurements...but the next visit in May will be much more informative as we will get to see how he does with his physical therapy and other markers for progress.
Since the inception of the study for Cannon he has grown 2 cm and gained one pound. There was no information provided to us as to how this compares to other patients...hopefully we will find out more later.
This visit was interesting because Microsoft donated a bunch of x-boxes to the hospital and they all got installed in the rooms while Cannon was there. This was a big deal as the local papers came out and did a story. Oddly enough...Cannon's picture made the paper in Pittsburgh, so his celebrity status continues to grow whereever he goes!
Click on link to see the article... http://www.pittsburghlive.com/x/pittsburghtrib/news/pittsburgh/s_731961.html
Strangely enough...some old friends from Mountain Lakes that had recently moved to Pittsburgh saw Cannon's picture in the paper and reached out to us. It's so nice to know we have some friends in Pittsburgh when we travel...thanks!
Also...check out Cannon's dance moves here... http://www.youtube.com/watch?v=7cmcvro51d8 The things you do to pass the down time while at the hospital!
Sunday, April 10, 2011
A Giant Leap
Watching this video should be enough. I don't want to spoil it with words. Watch and enjoy!
Monday, April 4, 2011
Long time, no blog
Well, it has definitely been too long since I last blogged...but to be honest...there really has not been a lot to write about recently.
Everything has been status quo with the challenges of giving the injections but this past Saturday we had a breakthrough. Cannon walked right up to me and willingly gave me his arm and didn't complain, cry or fight me. It was shocking for me to say the least as he literally changed overnight. He didn't complain during the shot or after either. He was such a champ.
Additionally, we went for our first bike ride of the year on Saturday as the weather finally allowed us to. I noticed that I needed to raise the seat for Cannon and potentially even move to his bigger bike...he has definitely grown taller in the past 6 months! I also noticed that he was able to pedal up a slight incline from a stand still position all by himself. He couldn't even think about doing this 6 months ago...not to mention this was done while seated on the bike without standing up as he is not able to do this yet.
So we are hitting 6 weeks on the medication this week and Cannon and Deb go to Pittsburgh next Monday...the 11th. We will have much more to report then I am sure...but this is it for now.
The last thing I will say is that Cannon's confidence seems to be increasing. He is doing more and more rough boy stuff like playing in the mudd, playing lacrosse and rough-housing with his brother Clark. It is really fun to see.
Everything has been status quo with the challenges of giving the injections but this past Saturday we had a breakthrough. Cannon walked right up to me and willingly gave me his arm and didn't complain, cry or fight me. It was shocking for me to say the least as he literally changed overnight. He didn't complain during the shot or after either. He was such a champ.
Additionally, we went for our first bike ride of the year on Saturday as the weather finally allowed us to. I noticed that I needed to raise the seat for Cannon and potentially even move to his bigger bike...he has definitely grown taller in the past 6 months! I also noticed that he was able to pedal up a slight incline from a stand still position all by himself. He couldn't even think about doing this 6 months ago...not to mention this was done while seated on the bike without standing up as he is not able to do this yet.
So we are hitting 6 weeks on the medication this week and Cannon and Deb go to Pittsburgh next Monday...the 11th. We will have much more to report then I am sure...but this is it for now.
The last thing I will say is that Cannon's confidence seems to be increasing. He is doing more and more rough boy stuff like playing in the mudd, playing lacrosse and rough-housing with his brother Clark. It is really fun to see.
Tuesday, March 22, 2011
Update - March 22
There is not a ton of news to report at this point. The injections continue to be difficult. Cannon is fine leading up to it...he knows when he is having it...he knows which arm or leg he is going to get the injection in...but when it comes time to actually give it...he gets very upset and has even been known to lock himself in the bathroom.
He eventually gives in but it does take some convincing and bribing. He cries and fights...but we eventually get it done. Truth be told I don't think it really hurts him...I just think he gets anxiety as we lead up to it. I will say that he absolutely hates getting the shot in his leg...he very much prefers the arms...but he puts up a fight either way.
He eventually gives in but it does take some convincing and bribing. He cries and fights...but we eventually get it done. Truth be told I don't think it really hurts him...I just think he gets anxiety as we lead up to it. I will say that he absolutely hates getting the shot in his leg...he very much prefers the arms...but he puts up a fight either way.
Recently, some friends of ours held a Battle of the Bands to benefit Soft Bones. We wanted to show some support so all 5 of us showed up a little early to take some pictures. There were seven bands in all and most were traditional rock and blues bands...but the band that opened was your run-of-the-mill screamer band and Grace immediately voiced her opinion by crying her eyes out. Even with the ear plugs they gave us...she was unhappy. Cannon and Roger Clark were enamored and stood in awe as the lead singer screamed lyrics beyond recognition. It was quite the scene.
Additionally, Cannon continues to receive support from local friends at the elementary and middle schools here in Mountain Lakes. We are so grateful to have support like this for Soft Bones and Cannon. Thanks to everyone for all of their support and prayers.
All in all things are good and we have not seen a dramatic change since my last blog...although we continue to notice an increase in endurance. More to follow.
Sunday, March 13, 2011
March 13 - Progress!!!
Well, it has been a while since my last post...sorry for the delay.
We are very excited to share the latest developments as they are very noteworthy. Deborah and Cannon went to Pittsburgh on Thursday, March 10. It was a day trip so they flew there and back the same day.
While at the hospital in Pittsburgh, they drew his blood, took urine and gave him his scheduled injection. Deborah also was trained to give the injections, but she does not feel quite up to the task yet. Cannon was also allowed to practice giving an injection as well. Check out the video below.
There was very little commotion with the IV but the injection proved to be a challenge once again. As always, bribery was the answer. Cannon now has a two new toys, while his mommy was left with a lot of embarrassment as Cannon wedged himself between the wall and the bed. This trial is going to break the bank at the toy store.
Interestingly, it's not the pain of the injection that he seems to get upset with but the anticipation of it. Deborah is going to do some research to see what parents of children with diabetes do.
On Saturday, March 12, Cannon walked up 3 stairs without any assistance! This is monumental! Cannon is even noticing more energy and stamina. He keeps running around saying "look at my energy!" He even walked all the way home from school the other day which is about 2 blocks...this does not sound like a very far distance...but it was up and down a hill and actually really far for him...so we are thrilled with the progress he has made. All in all, he is moving better and his appetite seems to be increasing a bit too...although he is still fairly picky on what he eats. Here is video of Cannon going up the steps. Keep in mind, usually he relies heavily on the railing.
Additionally, Cannon's injection went as smoothly as ever on Saturday. He didn't put up a fight or even shed a tear. We were really proud of him.
Hopefully more good news to come!
We are very excited to share the latest developments as they are very noteworthy. Deborah and Cannon went to Pittsburgh on Thursday, March 10. It was a day trip so they flew there and back the same day.
While at the hospital in Pittsburgh, they drew his blood, took urine and gave him his scheduled injection. Deborah also was trained to give the injections, but she does not feel quite up to the task yet. Cannon was also allowed to practice giving an injection as well. Check out the video below.
There was very little commotion with the IV but the injection proved to be a challenge once again. As always, bribery was the answer. Cannon now has a two new toys, while his mommy was left with a lot of embarrassment as Cannon wedged himself between the wall and the bed. This trial is going to break the bank at the toy store.
Interestingly, it's not the pain of the injection that he seems to get upset with but the anticipation of it. Deborah is going to do some research to see what parents of children with diabetes do.
On Saturday, March 12, Cannon walked up 3 stairs without any assistance! This is monumental! Cannon is even noticing more energy and stamina. He keeps running around saying "look at my energy!" He even walked all the way home from school the other day which is about 2 blocks...this does not sound like a very far distance...but it was up and down a hill and actually really far for him...so we are thrilled with the progress he has made. All in all, he is moving better and his appetite seems to be increasing a bit too...although he is still fairly picky on what he eats. Here is video of Cannon going up the steps. Keep in mind, usually he relies heavily on the railing.
Additionally, Cannon's injection went as smoothly as ever on Saturday. He didn't put up a fight or even shed a tear. We were really proud of him.
Hopefully more good news to come!
Tuesday, March 8, 2011
March 7
Monday morning Cannon woke up with red rashes at the injection site on each of his arms. They were about 2-3 inches in diameter and appeared to not bother him. He said it itched a little...but nothing crazy.
What's peculiar about this is his last injection was on Saturday and the one before that was Thursday. We didn't notice any redness or rashes until yesterday morning. We are not sure why this took so long to manifest itself...but the study coordinator and Dr. Vockley don't seem to be worried. The redness and rashing is very typical at the injection site and usually dealt with by taking Benadryl. However, we do not have to give Cannon Benadryl and we have chosen not to...unless of course it gets really bothersome to him.
As of Tuesday morning, each arm was slightly pink but still don't seem to bother Cannon. He has an injection in his leg this afternoon, so we can avoid the arms for a while at least.
Deborah and Cannon are getting ready to fly back to Pittsburgh on Thursday for a quick one-day trip...so they will be back home on Thursday evening.
Additionally, Cannon does seem to be getting a little stronger so we are excited about what lies ahead once we really get deep into the trial.
Thanks for the thoughts and prayers and keep them coming!
What's peculiar about this is his last injection was on Saturday and the one before that was Thursday. We didn't notice any redness or rashes until yesterday morning. We are not sure why this took so long to manifest itself...but the study coordinator and Dr. Vockley don't seem to be worried. The redness and rashing is very typical at the injection site and usually dealt with by taking Benadryl. However, we do not have to give Cannon Benadryl and we have chosen not to...unless of course it gets really bothersome to him.
As of Tuesday morning, each arm was slightly pink but still don't seem to bother Cannon. He has an injection in his leg this afternoon, so we can avoid the arms for a while at least.
Deborah and Cannon are getting ready to fly back to Pittsburgh on Thursday for a quick one-day trip...so they will be back home on Thursday evening.
Additionally, Cannon does seem to be getting a little stronger so we are excited about what lies ahead once we really get deep into the trial.
Thanks for the thoughts and prayers and keep them coming!
Sunday, March 6, 2011
March 6
Cannon had his injection yesterday morning. While he screamed a little before the shot...it certainly was not the production that it has been the last few times. We did it in his right arm this time and I seem to be getting the hang of it. It is hard to concentrate on learning a new thing like this while he is screaming at me...but we are anticipating all of this subsiding soon. Nurse Mindy brought her 8 year old son Andrew to play with Cannon...they had a good time "bey-blading" together.
We appreciate the well wishes and nice comments we have been getting from some of our followers. It has made it easier to deal with as parents...so Thank You!
Interestingly enough...Deb and I have noticed that Cannon seems to be walking a little differently over the last couple of days. He also was able to step up one of our steps without any assistance or holding on to anything. Even Cannon said..."I could never do that before". Needless to say, we are all very excited about this and continue to be optimistic as we plow ahead.
We appreciate the well wishes and nice comments we have been getting from some of our followers. It has made it easier to deal with as parents...so Thank You!
Interestingly enough...Deb and I have noticed that Cannon seems to be walking a little differently over the last couple of days. He also was able to step up one of our steps without any assistance or holding on to anything. Even Cannon said..."I could never do that before". Needless to say, we are all very excited about this and continue to be optimistic as we plow ahead.
Thursday, March 3, 2011
March 3
Cannon had an injection today. We did it in his left arm and the injection itself went great. Cannon said it didn't really hurt and there was no bleeding. However, leading up to the shot was a completely different adventure. 20 mins prior to nurse Mindy arriving, Cannon started his crying and screaming about not wanting to do it.
We have not seen any progress from the medication...but we really are not expecting to until at least 6 weeks. The good news is that Cannon is not having any reactions to the medication...so we are thrilled with this.
Wednesday, March 2, 2011
March 2 - Not a shining moment
Cannon had his 4th injection last night on March 1. This was by far the worst of them to this point. He screamed and cried and did not want to do it at all. It took about 15-20 mins for him to calm down for us to give it to him. Even then he wasn't in the mood to say the least.
I could not be there for the shot...so Deb and nurse Mindy took care of things. Deb has not yet been trained yet on giving the injections...so Mindy had the honors.
We are hoping that Cannon gets used to the injections and we think that he will...but he would definitely prefer the shots in his arms...as opposed to his legs. The problem is we have to rotate the shots each time. I think we will try to get the topical cream Emla...this is a numbing cream that Cannon has done well with before...so I think we will give it a try.
I could not be there for the shot...so Deb and nurse Mindy took care of things. Deb has not yet been trained yet on giving the injections...so Mindy had the honors.
We are hoping that Cannon gets used to the injections and we think that he will...but he would definitely prefer the shots in his arms...as opposed to his legs. The problem is we have to rotate the shots each time. I think we will try to get the topical cream Emla...this is a numbing cream that Cannon has done well with before...so I think we will give it a try.
Monday, February 28, 2011
2-28-2011
I wanted to touch base since it has been a few days since my last post.
Cannon had his 3rd injection at home on Saturday. We have a nurse that comes to the house for each injection to monitor vitals. Her name is Mindy and she seems very nice. She helped me with the whole procedure and Cannon seems to like her as well.
This injection was not as smooth as the first 2. I think part of the problem was that we had to do it in Cannon's leg and he could easily see what was going on and that scared him a little. He didn't fight it...but started crying very loudly and said that it hurt in his leg more than his arm. He also had a little bit of blood this time so that upset him too. He soon stopped crying and it was over.
As of now...injections will be Tuesday and Thursday evenings at 6:30 and Saturday mornings at 11:00.
When I asked Cannon if he felt stronger yet...he said yes and promptly proved this by punching me in the leg. Obviously he didn't get what I meant...but we all had a good laugh about it....and it actually kind of hurt a bit too!
Cannon had his 3rd injection at home on Saturday. We have a nurse that comes to the house for each injection to monitor vitals. Her name is Mindy and she seems very nice. She helped me with the whole procedure and Cannon seems to like her as well.
This injection was not as smooth as the first 2. I think part of the problem was that we had to do it in Cannon's leg and he could easily see what was going on and that scared him a little. He didn't fight it...but started crying very loudly and said that it hurt in his leg more than his arm. He also had a little bit of blood this time so that upset him too. He soon stopped crying and it was over.
As of now...injections will be Tuesday and Thursday evenings at 6:30 and Saturday mornings at 11:00.
When I asked Cannon if he felt stronger yet...he said yes and promptly proved this by punching me in the leg. Obviously he didn't get what I meant...but we all had a good laugh about it....and it actually kind of hurt a bit too!
Thursday, February 24, 2011
Home Sweet Home
Well, we are finally home...arriving around 5:00 this afternoon. The trip home was very smooth and we had no issues. We even got our spinal x-ray done right before we left.
I gave Cannon his injection this morning. I wasn't as good as the nurse on the 1st one...but I guess that is expected. Of course Cannon expected me to be. He teared up a little, but stayed tough. I think he was more shocked that he felt something at all than actually experiencing any pain.
I asked Cannon what his favorite and least favorite part of the trip was. His response was as follows:
Favorite: Breakfast in Bed
Least Favorite: The tape that held the IV in place pulled his skin and hurt
I am so glad that my novice shot giving didn't make the list...
Nevertheless, Cannon was awesome and he was told several times that he was everyone's favorite patient....the nurses loved him. Who wouldn't?
I gave Cannon his injection this morning. I wasn't as good as the nurse on the 1st one...but I guess that is expected. Of course Cannon expected me to be. He teared up a little, but stayed tough. I think he was more shocked that he felt something at all than actually experiencing any pain.
I asked Cannon what his favorite and least favorite part of the trip was. His response was as follows:
Favorite: Breakfast in Bed
Least Favorite: The tape that held the IV in place pulled his skin and hurt
I am so glad that my novice shot giving didn't make the list...
Nevertheless, Cannon was awesome and he was told several times that he was everyone's favorite patient....the nurses loved him. Who wouldn't?
Wednesday, February 23, 2011
End of Day 3
Well, it has been a pretty uneventful day today. Not too much going on really. We have to get another spine x-ray because they didn't do it right the first time. Apparently he is supposed to lay on his side for this x-ray...they had him lie on his back the first time. This was supposed to get done today...but because of several different mix-ups...we could not do it. They are goung to try and get it done tomorrow before we leave...so hopefully that won't delay our departure. This has been the first mis-hap of our trip so I guess I can't complain but it is quite frustrating since it messed up our night a little bit.
Also, Cannons IV was starting to clot a little, so they are going to put a little heparin in it so it won't be too difficult to draw tonight and tomorrow.
Lastly, we ended the day with some fun activities. They had a drum night in the atrium here and below is video of Cannon trying his hand at the Bongo drum...not too shabby.
Tomorrow morning I give Cannon his 2nd injection right before we head home. They will monitor his vitals for an hour afterwards and then we will be discharged. Looking to get on the road by 11:00 a.m. or so.
Also, Cannons IV was starting to clot a little, so they are going to put a little heparin in it so it won't be too difficult to draw tonight and tomorrow.
Lastly, we ended the day with some fun activities. They had a drum night in the atrium here and below is video of Cannon trying his hand at the Bongo drum...not too shabby.
Tomorrow morning I give Cannon his 2nd injection right before we head home. They will monitor his vitals for an hour afterwards and then we will be discharged. Looking to get on the road by 11:00 a.m. or so.
Day 3 Updates
Not a lot going on today...blood draws and vitals checked...so we are hanging out and playing a lot.
Cannon had a special request from the nurses on the 7th floor for him to come and show them his Bey Blades. They all have nephews, sons and grandsons that they need to buy presents for so they were very interested as they hadn't seen these before. Cannon was more than happy to oblige and he showed no mercy on the novice bladers. He wanted to win all of the battles.
Additionally, I got an update on the kidney ultrasound that Cannon had. Everything checked out perfectly and his kidneys and bladder are fine. No problems here...so that is a relief.
We had a nice lunch together as Cannon insisted on coming with me to the cafeteria to see where I get my food every day. I think he wanted to get out of the room.
Cannon had a special request from the nurses on the 7th floor for him to come and show them his Bey Blades. They all have nephews, sons and grandsons that they need to buy presents for so they were very interested as they hadn't seen these before. Cannon was more than happy to oblige and he showed no mercy on the novice bladers. He wanted to win all of the battles.
Additionally, I got an update on the kidney ultrasound that Cannon had. Everything checked out perfectly and his kidneys and bladder are fine. No problems here...so that is a relief.
We had a nice lunch together as Cannon insisted on coming with me to the cafeteria to see where I get my food every day. I think he wanted to get out of the room.
Tuesday, February 22, 2011
End of Day 2
After Cannon's injection...we had a relaxing morning. We watched a movie together and ate lunch. Around 1:30, the physical therapist came in to do his baseline assessment. He measured and observed everything from walking, jumping and kneeling, to the fine motor skills. He actually tested out of 2 of the tests...meaning he tested at a normal level for a 5 year old. His fine motor skills as well as his throwing, catching and kicking a ball were the tests that he excelled in.
The rest of the afternoon we hung out in our room, played games and relaxed.
It was a good day.
The rest of the afternoon we hung out in our room, played games and relaxed.
It was a good day.
Day 2 10:15
In preparation for giving Cannon his injections...I got to practice on the nurse. Not as bad as I thought it would be. Saline of course...but a real needle. Apparently I did ok...we will see what Cannon says on Thursday when I have to give him the shot.
Day 2 8:45
Cannon received his first injection at 8:45. He was so brave and tough. He said it didn't hurt and he didn't shed a tear. The nurses were very good at explaining everything to him and he seems pretty laid back with everything.
He now will get his vitals checked every 15 mins for the next hour to make sure there are no adverse reactions. At almost an hour after the injection, he is doing fine and has had no reaction at all. He had a slight pink color at at the injection site...but it has diminished to almost nothing at this point.
He is doing great!
He now will get his vitals checked every 15 mins for the next hour to make sure there are no adverse reactions. At almost an hour after the injection, he is doing fine and has had no reaction at all. He had a slight pink color at at the injection site...but it has diminished to almost nothing at this point.
He is doing great!
Day 2 - 2-22-2011 - First Injection
We got a late start today. The snow storm in Pittsburgh made it hard for everyone to get to work on time...so we got to sleep until 7:30!
His first injection will be around 8:30. The nurse will do the first one and then I will practice over the next 2 days on how to do it myself...I will give the injection on Thursday before we head home.
Cannon is in good spirits today and breakfast is on its way. He ordered french toast sticks and bacon. Believe it or not, they have Vanilla Rice Milk as well...so he feels right at home.
More updates soon!
His first injection will be around 8:30. The nurse will do the first one and then I will practice over the next 2 days on how to do it myself...I will give the injection on Thursday before we head home.
Cannon is in good spirits today and breakfast is on its way. He ordered french toast sticks and bacon. Believe it or not, they have Vanilla Rice Milk as well...so he feels right at home.
More updates soon!
Monday, February 21, 2011
Day 1 - 2-21-2011 - Screening
After an adventurous drive to Pittsburgh on Sunday night through snow, rain, sleet and dense fog...Cannon and I finally checked into Children's Hospital of Pittsburgh around 12:15. Our room was not totally ready so we went to an outpatient room while it was getting cleaned. We met with Stephanie DeWard, the genetic counselor on the trial and went through the consent form. Cannon was very patient during this process even though he was very hungry. He was fasting for blood work. Before long a nurse came in and prepped him for his IV. Blood has to be drawn around 7 times during our visit so an IV works best. Cannon was awesome and didn't cry at all. This was helped by the topical numbing cream they used to numb the skin at the IV insertion site. Oddly enough, the thing that hurt him the most was the tourniquet.
Dr. Gerard Vockley also visited with us for a while and did his check up of Cannon as well. He is the lead researcher at this site. He was very nice and his bed side manner was excellent. You can tell that he likes working with children.
Around 2:30 we got to move to our permanent room. Cannon got wheeled up in a wheel chair and loved it. This was his first experience in a wheel chair...he now asks for one for everywhere we go. The room is spacious and very nice. We have our own bathroom and shower...plus TV with free movies on demand. A library, play/game rooms & group activities are all available to Cannon. They also provide WiFi and laptops if needed.
At 3:45 the Opthalmologist came in to check Cannon's eyes. She checked for color vision, eye movement & pupil dilation...all of which he did perfectly on. She also looks for calcium deposits here...but found none! She then put drops in his eyes to dilate them so she can check his optic nerve. The drops sting for a quick second but his bravery prevails and still no crying...what a trooper! The Dr. has to wait for the drops to take effect, so we go to get skeletal x-rays in the meantime. When we return...she checks his optic nerve and all is great!
Around 2:30 we got to move to our permanent room. Cannon got wheeled up in a wheel chair and loved it. This was his first experience in a wheel chair...he now asks for one for everywhere we go. The room is spacious and very nice. We have our own bathroom and shower...plus TV with free movies on demand. A library, play/game rooms & group activities are all available to Cannon. They also provide WiFi and laptops if needed.
At 3:45 the Opthalmologist came in to check Cannon's eyes. She checked for color vision, eye movement & pupil dilation...all of which he did perfectly on. She also looks for calcium deposits here...but found none! She then put drops in his eyes to dilate them so she can check his optic nerve. The drops sting for a quick second but his bravery prevails and still no crying...what a trooper! The Dr. has to wait for the drops to take effect, so we go to get skeletal x-rays in the meantime. When we return...she checks his optic nerve and all is great!
We went down for x-rays at 4:00. On the way to get x-rays Cannon tells the Transporter (person who pushes the wheelchair) that he loves x-rays because he can lay still and relax! The x-ray technician is extremely friendly and asks questions about Cannon's family. He talks a lot about his sister Grace and baby brother Roger Clark...as well as his dog Winnie and cat Caesar. Cannon does great at holding perfectly still for all of the x-rays. The technician gives him an entire set of Lincoln Logs as a "prize". When offered stickers...he first insists on getting some for Grace...he is so thoughtful! I am so proud of him.
Our day is nearly done for screening...all that is left is the kidney ultrasound. This takes place around 5:30. Here they are checking for several things. Size and shape of the kidney's, as well as for kidney stones. They also want to make sure there is no inflammation of the bladder or that there are not any obstructions there. As with most ultrasounds...the technichian won't tell me anything about what she saw...she said that the Dr. would look at the images and discuss everything with us. So stay tuned for the results...
Finally the screening portion of our day is done. Now Cannon can relax a little bit and play. We order dinner for him and he has fish sticks and carrots. We go to one of the play rooms and among other things, we try our hand at Rock Band. At first, Cannon plays the drums and I do the guitar and try to sing...since that was a joke...we switched it up and Cannon did the singing for Ghostbusters. What a riot he is!
Around 8:00 we head back to our room. Cannon decides he wants to watch How to Train Your Dragon...so we order it on our TV and that is pretty much how the day ended. We have a big day tomorrow with his first injection coming at 8:30 a.m....and I get to learn how to give the injections myself.
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