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.

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.



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!

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!

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.

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.

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.