Cannon started a totally new test for PT. It is a standardized test so we will be able to measure where is compared to nationwide norms. Cannon is the first person to do this trial for his age group. He did well. Propulsive movements seem to be a weakness for all patients with HPP.
This was all mostly new stuff for Cannon...except for the video below. This was a standing long jump...he jumped 27 inches. He actually jumped 34 inches on one jump...but he fell backwards...so it didnt' count and he had to do it again...and he was tired.
Based on Cannon's results from all of these tests...he falls into the average range in everything but running speed and agility...where he is just below average.
Cannons balance is very good...he tested at a 7-71/2 year old.
His strength is right at where it should be at 6 years 9 months.
And his running speed tested at just under 4 years old.
As compared to most HPP patients...Cannon is above average on his strength and above average on balance...his running speed is very typical with all HPP patients.
Overall...it was a good visit and now we are headed to Arizona for a weeks vacation with grandma and grandpa.
Friday, February 17, 2012
1 year anniversary
Cannon and I are in Pittsburgh today. It has been quite busy. We started in radiology for x-rays...went to kidney ultrasound, then to the eye center and now are doing all of his measurements.
X-rays look good and we continue to see improvement in his bones. They are mineralizing, lengthening and growing very nicely.
Since his last visit 3 months ago...Cannon has grown an inch, and gained 1.3 lbs. This is great progress. Here are a few pics to check out from our visit. I will take some video later of his PT tests and send those out as well.
X-rays look good and we continue to see improvement in his bones. They are mineralizing, lengthening and growing very nicely.
Since his last visit 3 months ago...Cannon has grown an inch, and gained 1.3 lbs. This is great progress. Here are a few pics to check out from our visit. I will take some video later of his PT tests and send those out as well.
Tuesday, February 14, 2012
Nearly a year now...
Today is Valentine's day and Cannon and I are getting ready to go to Pittsburgh on Thursday. This marks one year that Cannon has been taking the medicine and we continue to be thrilled with his progress.
He is doing things that we never thought he would ever do... playing tennis, walking to school, sledding in the snow for 6 hours...not to mention he has a rocket launcher for an arm.
Check out this video of Cannon getting an injection recently. He is such a brave kid.
More to follow as we get his year end results on Friday.
He is doing things that we never thought he would ever do... playing tennis, walking to school, sledding in the snow for 6 hours...not to mention he has a rocket launcher for an arm.
Check out this video of Cannon getting an injection recently. He is such a brave kid.
More to follow as we get his year end results on Friday.
Thursday, February 2, 2012
Latest Update
A lot has happened since my last blog.
Cannon continues to do well in tennis and loves to go. He also loves to play outside in the snow as you can see by this short video of him sledding.
On this particular day...Cannon played outside for about 6 consecutive hours...with no rests or breaks at all. This confirms our theory that he cons us into carrying him or helping him at times when he says his legs are tired.
Cannon also recently had an incident at school where he hurt his wrist. He went to the nurse and they iced it. The school nurse called me and said we should get it x-rayed and that it was swollen. He came home with a brace but quickly took it off and never complained about it again. He played and did all of his normal things and never said a word. If we asked him about it he said it hurt a little...so his grandpa Roger took him to get it x-rayed this past Monday. Everything was fine and there were no issues...as we expected.
Cannon is also really progressing with his injections. Over the last couple of weeks...there has not been one tear shed on one injection. In fact...Cannon has this thing where he says "I can do it, I can do it, I can do it" over and over until the injection is over. This has helped him so much and he never complains or fights me about getting a shot. Things have been so much easier.
Cannon is in so many ways a typical boy. He is always running in the house (even with our constant pleas to stop), throwing and kicking a ball and rough housing with his brother Clark. He also loves to wrestle with his cousin Jamie.
We have our next trip to Pittsburgh all set for February 17. This will mark 1 year on the trial and we are excited about what the next year will bring for Cannon.
Cannon continues to do well in tennis and loves to go. He also loves to play outside in the snow as you can see by this short video of him sledding.
On this particular day...Cannon played outside for about 6 consecutive hours...with no rests or breaks at all. This confirms our theory that he cons us into carrying him or helping him at times when he says his legs are tired.
Cannon also recently had an incident at school where he hurt his wrist. He went to the nurse and they iced it. The school nurse called me and said we should get it x-rayed and that it was swollen. He came home with a brace but quickly took it off and never complained about it again. He played and did all of his normal things and never said a word. If we asked him about it he said it hurt a little...so his grandpa Roger took him to get it x-rayed this past Monday. Everything was fine and there were no issues...as we expected.
Cannon is also really progressing with his injections. Over the last couple of weeks...there has not been one tear shed on one injection. In fact...Cannon has this thing where he says "I can do it, I can do it, I can do it" over and over until the injection is over. This has helped him so much and he never complains or fights me about getting a shot. Things have been so much easier.
Cannon is in so many ways a typical boy. He is always running in the house (even with our constant pleas to stop), throwing and kicking a ball and rough housing with his brother Clark. He also loves to wrestle with his cousin Jamie.
We have our next trip to Pittsburgh all set for February 17. This will mark 1 year on the trial and we are excited about what the next year will bring for Cannon.
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