Saturday, August 9, 2014

August 5, 2014: First Shot!

We got to the hospital at 8am.  Cammy had a quick physical before her first shot at 9.  We made sure Cammy had a little sweet treat before her shot.  We need to make sure she has some sugar in her because a dipping glucose level is a concern.  We are to take her glucose level 30 minutes after the shot for the first week.

The first shot went to Billy.  Cammy didn't even flinch!  She took it like a champ.  Ryan was on standby for big hugs. Her glucose level was within the normal range 30 minutes after the shot.  SUCCESS!  #Phew  #PlaceboOrIGf1  #BeTheChangeYouWishToSeeInTheWorld

Dr. Kauffman came in for a couple more observations and tests.  Cammy had to choose between 2 objects.  We were supposed to bring in an object that she loves, so we brought in one of her monkeys, Pickles.  When given the choice between Pickles and a Little People Princess, she quickly chose Pickles each time, no matter how he placed them.  Ryan, on the other hand, would have chosen the princess.  Dr, K. seemed to be impressed with how quickly Cammy can choose with her eyes. 

We ran into Alyssa and Susan, another Rett family in the clinical trial.  This is Alyssa final visit, she will be all done with the trial after this visit.  We feel like she is passing the torch to Cammy who is just beginning.  They are extremely sweet and positive people.  
 We packed the medicine (or placebo) in a cooler, said our goodbyes and headed back to the hotel to pack up the car.  So long Boston, until October.  

Our original plan was to stay overnight at my aunt and uncle's house in Rochester again, but we left earlier than expected and were anxious to get home, we bypassed Rochester and drove a few more hour to Warrensville Heights, Ohio.  Along the way, we had to give Cammy a shot.  Nothing classier than giving a shot in a family restroom at a rest stop.  We notices a Sharp's needle container on the wall in the family bathroom.  We had never noticed anything like that before.  We made sure everything and everyone was as clean as possible while giving her the shot.  Her glucose levels were normal 30 minutes later.  Everything was going smoothly. 
Ryan was excited to spend one more night in a hotel.  The rest of us were over it. 
We arrived home around 2pm on Wednesday.  It was a mandatory rest period for everyone.  Cammy, Billy and I were thrilled to lay in our own beds while Ryan was so excited to play with all her toys again.  We came home to a few packages, a beautiful bouquet of cookies from friends and a lot of mail.  Thank you everyone for your love and support. 


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