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!
Friday, April 15, 2011
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.
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