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.