2-28-2011

I wanted to touch base since it has been a few days since my last post.

Cannon had his 3rd injection at home on Saturday.  We have a nurse that comes to the house for each injection to monitor vitals.  Her name is Mindy and she seems very nice.  She helped me with the whole procedure and Cannon seems to like her as well.

This injection was not as smooth as the first 2.  I think part of the problem was that we had to do it in Cannon's leg and he could easily see what was going on and that scared him a little.  He didn't fight it...but started crying very loudly and said that it hurt in his leg more than his arm.  He also had a little bit of blood this time so that upset him too.  He soon stopped crying and it was over. 

As of now...injections will be Tuesday and Thursday evenings at 6:30 and Saturday mornings at 11:00. 

When I asked Cannon if he felt stronger yet...he said yes and promptly proved this by punching me in the leg.  Obviously he didn't get what I meant...but we all had a good laugh about it....and it actually kind of hurt a bit too!

Home Sweet Home

Well, we are finally home...arriving around 5:00 this afternoon.  The trip home was very smooth and we had no issues.  We even got our spinal x-ray done right before we left.

I gave Cannon his injection this morning.  I wasn't as good as the nurse on the 1st one...but I guess that is expected.  Of course Cannon expected me to be.  He teared up a little, but stayed tough.  I think he was more shocked that he felt something at all than actually experiencing any pain. 

I asked Cannon what his favorite and least favorite part of the trip was.  His response was as follows:

Favorite: Breakfast in Bed
Least Favorite:  The tape that held the IV in place pulled his skin and hurt

I am so glad that my novice shot giving didn't make the list...

Nevertheless, Cannon was awesome and he was told several times that he was everyone's favorite patient....the nurses loved him.  Who wouldn't?

End of Day 3

Well, it has been a pretty uneventful day today.  Not too much going on really.  We have to get another spine x-ray because they didn't do it right the first time.  Apparently he is supposed to lay on his side for this x-ray...they had him lie on his back the first time.  This was supposed to get done today...but because of several different mix-ups...we could not do it.  They are goung to try and get it done tomorrow before we leave...so hopefully that won't delay our departure.  This has been the first mis-hap of our trip so I guess I can't complain but it is quite frustrating since it messed up our night a little bit. 

Also, Cannons IV was starting to clot a little, so they are going to put a little heparin in it so it won't be too difficult to draw tonight and tomorrow.

Lastly, we ended the day with some fun activities.  They had a drum night in the atrium here and below is video of Cannon trying his hand at the Bongo drum...not too shabby.

Tomorrow morning I give Cannon his 2nd injection right before we head home.  They will monitor his vitals for an hour afterwards and then we will be discharged.  Looking to get on the road by 11:00 a.m. or so.

Day 3 Updates

Not a lot going on today...blood draws and vitals checked...so we are hanging out and playing a lot.

Cannon had a special request from the nurses on the 7th floor for him to come and show them his Bey Blades.  They all have nephews, sons and grandsons that they need to buy presents for so they were very interested as they hadn't seen these before.  Cannon was more than happy to oblige and he showed no mercy on the novice bladers.  He wanted to win all of the battles. 

Additionally, I got an update on the kidney ultrasound that Cannon had.  Everything checked out perfectly and his kidneys and bladder are fine.  No problems here...so that is a relief.

We had a nice lunch together as Cannon insisted on coming with me to the cafeteria to see where I get my food every day.  I think he wanted to get out of the room. 

End of Day 2

After Cannon's injection...we had a relaxing morning.  We watched a movie together and ate lunch.  Around 1:30, the physical therapist came in to do his baseline assessment.  He measured and observed everything from walking, jumping and kneeling, to the fine motor skills.  He actually tested out of 2 of the tests...meaning he tested at a normal level for a 5 year old.  His fine motor skills as well as his throwing, catching and kicking a ball were the tests that he excelled in.

The rest of the afternoon we hung out in our room, played games and relaxed. 

It was a good day.

Day 2 10:15

In preparation for giving Cannon his injections...I got to practice on the nurse. Not as bad as I thought it would be.  Saline of course...but a real needle.  Apparently I did ok...we will see what Cannon says on Thursday when I have to give him the shot.

Day 2 8:45

Cannon received his first injection at 8:45.  He was so brave and tough.  He said it didn't hurt and he didn't shed a tear.  The nurses were very good at explaining everything to him and he seems pretty laid back with everything. 

He now will get his vitals checked every 15 mins for the next hour to make sure there are no adverse reactions.  At almost an hour after the injection, he is doing fine and has had no reaction at all.  He had a slight pink color at at the injection site...but it has diminished to almost nothing at this point.

He is doing great!

Day 2 - 2-22-2011 - First Injection

We got a late start today.  The snow storm in Pittsburgh made it hard for everyone to get to work on time...so we got to sleep until 7:30!

His first injection will be around 8:30.  The nurse will do the first one and then I will practice over the next 2 days on how to do it myself...I will give the injection on Thursday before we head home. 

Cannon is in good spirits today and breakfast is on its way.  He ordered french toast sticks and bacon.  Believe it or not, they have Vanilla Rice Milk as well...so he feels right at home. 

More updates soon!

Day 1 - 2-21-2011 - Screening

After an adventurous drive to Pittsburgh on Sunday night through snow, rain, sleet and dense fog...Cannon and I finally checked into Children's Hospital of Pittsburgh around 12:15.  Our room was not totally ready so we went to an outpatient room while it was getting cleaned.  We met with Stephanie DeWard, the genetic counselor on the trial and went through the consent form.  Cannon was very patient during this process even though he was very hungry.  He was fasting for blood work.  Before long a nurse came in and prepped him for his IV.  Blood has to be drawn around 7 times during our visit so an IV works best.  Cannon was awesome and didn't cry at all.  This was helped by the topical numbing cream they used to numb the skin at the IV insertion site.  Oddly enough, the thing that hurt him the most was the tourniquet.

Dr. Gerard Vockley also visited with us for a while and did his check up of Cannon as well.  He is the lead researcher at this site.  He was very nice and his bed side manner was excellent.  You can tell that he likes working with children.

Around 2:30 we got to move to our permanent room.  Cannon got wheeled up in a wheel chair and loved it.  This was his first experience in a wheel chair...he now asks for one for everywhere we go.  The room is spacious and very nice.  We have our own bathroom and shower...plus TV with free movies on demand.  A library, play/game rooms & group activities are all available to Cannon.  They also provide WiFi and laptops if needed.

At 3:45 the Opthalmologist came in to check Cannon's eyes.  She checked for color vision, eye movement & pupil dilation...all of which he did perfectly on.  She also looks for calcium deposits here...but found none!  She then put drops in his eyes to dilate them so she can check his optic nerve.  The drops sting for a quick second but his bravery prevails and still no crying...what a trooper!  The Dr. has to wait for the drops to take effect, so we go to get skeletal x-rays in the meantime.  When we return...she checks his optic nerve and all is great!

We went down for x-rays at 4:00.  On the way to get x-rays Cannon tells the Transporter (person who pushes the wheelchair) that he loves x-rays because he can lay still and relax! The x-ray technician is extremely friendly and asks questions about Cannon's family.  He talks a lot about his sister Grace and baby brother Roger Clark...as well as his dog Winnie and cat Caesar.  Cannon does great at holding perfectly still for all of the x-rays.  The technician gives him an entire set of Lincoln Logs as a "prize".  When offered stickers...he first insists on getting some for Grace...he is so thoughtful!  I am so proud of him.

Our day is nearly done for screening...all that is left is the kidney ultrasound.  This takes place around 5:30.  Here they are checking for several things.  Size and shape of the kidney's, as well as for kidney stones.  They also want to make sure there is no inflammation of the bladder or that there are not any obstructions there.  As with most ultrasounds...the technichian won't tell me anything about what she saw...she said that the Dr. would look at the images and discuss everything with us.  So stay tuned for the results...

Finally the screening portion of our day is done.  Now Cannon can relax a little bit and play.  We order dinner for him and he has fish sticks and carrots.  We go to one of the play rooms and among other things, we try our hand at Rock Band.  At first, Cannon plays the drums and I do the guitar and try to sing...since that was a joke...we switched it up and Cannon did the singing for Ghostbusters.  What a riot he is!

Around 8:00 we head back to our room.  Cannon decides he wants to watch How to Train Your Dragon...so we order it on our TV and that is pretty much how the day ended.  We have a big day tomorrow with his first injection coming at 8:30 a.m....and I get to learn how to give the injections myself.