May visit to Pittsburgh

Cannon and I went to Pittsburgh last week for a visit.  It was intended to be a one day trip...but due to bad weather in NJ...our flight was cancelled and we had to stay the night in a hotel.  This was interesting since we didn't have any clothes or overnight stuff.  The good part was Cannon and I got to spend a lot of good quality time together.  We had fun.

The visit itself was very good.  Cannon did all of the usual measurements and tests.  And he continues to dominate strength tests.  His strength tests are push-ups, sit-ups, wall-sit, jumping and a superman pose while lying on his stomach.  (feet, arms and head off the ground)

Here is a video of Cannon doing his long jump.  On this one he cleared 32 inches...which is 6 inches more than 3 months ago...and 28 inches from his very first jump at his baseline testing.  We are obviously thrilled with this progress.

Here is a video of his shuttle run.  Basically he runs down the hall and picks up a little tube and runs back.  He timed 1 sec faster than 3 months ago.  Here is a video of that for you to check out.

Also, Cannon did really well on his push-ups and sit-ups.  Basically he could barely do them at all in the past and he has increased dramatically in these 2 areas.  He did 17 push-ups in 30 seconds (he did 8 3 months ago)...and he did 17 sit-ups in 30 seconds (he eeked out ten 3 months ago).  These are great signs for him. 

The 2 most amazing things that he did in my opinion were his wall-sit and Superman pose.  His Superman pose was for a full minute...this doubled time from 3 months ago.  And the wall-sit...well, I tried to do this one with him and I crumbled at 30 secs...but Cannon kept going and going...up to a full minute.  I couldn't believe it.  This doubled his time as well. 

All in all, he performed on his strength testing at the level of a normal 10 year old.  This is so incredible to me.  His speed and agility are right on par with his age group so he is average in those areas...but its still remarkable that he is not further behind...the medicine seems to really be helping. 

Since his last visit 3 months ago...Cannon has grown 1 cm...and gained 3 lbs.  His wing span and chest circumference each grew by 3 cm. 

We are so pleased with the results and Cannon seems proud as well.  He just laughs it off like its no big deal...but you can tell by his grin that he is so proud of what he can do. 

April Update

Well, this post is long overdue...so my apologies for not being more on top of it. 

Cannon is doing great!  He continues to make progress daily although it is hard for us to see this since we are with him so much.  However, one of my friends who hasn't seen him in a month or so had him over for a playdate with his son.  When I went to pick him up he commented on how well Cannon was running while playing lacrosse and hockey!  This is so great to hear. 

Cannon asks to bring his lacrosse stick to school everyday so he can play at recess.  I wasn't sure how much he was actually playing with the other boys until he told me that he needed to bring his own ball because the other kids won't play with him.  I don't think they are being mean but they play pretty rough and Cannon knows he can't do that like they can.  It heart-breaking to think about him trying to play lacrosse by himself, but it is also so encouraging that Cannon doesn't let anything get him down and he just does what he can to have a good time...he doesn't just sit in the corner and sulk.

His birthday is next week and the one thing he wants the most is a goalie lacrosse stick.  He really is something else. 

Rare disease day was last month and Alexion Pharmaceuticals had t-shirts made up for HPP awareness.  Cannon took some to school and handed them out to be worn on Rare Disease Day.  Here is a shot of his first grade class with all of their shirts on!

More to follow soon.

PT Test

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.

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.

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.

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.