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.

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.