I'm sorry that I haven't posted an update recently. Thankfully Cameron continues to get a little stonger everyday ...

Cameron had an echo done on Monday,  His heart is up to 66%.  His Cardiomyopathy has not made huge improvements in the past week, but this will take a longer period of time to heal....

Cameron still has the Pancreatitus, but what ever numbers they follow on this has come down in the past couple of tests that have run.  This is good so they didn't have to perform the CT scan.
They decided to perform his swallow study on Thursday.  This went well the plan was to go ahead to put the NG tube in (feeding tube through nose).  Cameron would be able to eat starting with a low fat diet.  At the same time give Cameron something like a Pedi-sure through his NG tube. They thought it would take Cameron a little while to be able to consume enough calories on his own by mouth. 
They put the NG tube in Thusday night and I would talk to him about why this was in his nose and I thought he understood. Then he would forget what we talked about or he would have very strong erdge to itch it or take it out ..Needless to say he had to have this put in a couple of times because he kept taking it out.
They decided Friday morning not to put the NG tube in a third time.  The doctors decided to give Cameron a chance to eat and start building up his appetite, and still continue the TPN through IV until Cameron was eating and drinking enough calories on his own.  They hoped that Cameron would be eating and drinking enough for the I-V to be tapered off by this Tuesday.
Well today Cameron is already completely off of his I-V fluids.

Cameron has gone to the gym for physical therapy for a couple of days this week. It's nice for us to get out of our room for the hour or so a day...
It is very hard to watch your son who has always been a healthy athletic boy, be so dependant on so many for help with every movement.
On Tuesday they had Cameron roll side to side on a matt...Cameron had to sit straight up and practice reaching for objects on the right and placing them to the left of him. The therapist are still having to help him with any major movements that require core and balance. there are two therapist that work with him at once because Cameron's muscles and movements are so limited.....
Wednesday they repeated the sitting up straight and reaching from right to left.  After that they have Cameron lay on his back and rolled him to his stomach.  They had a pillow under his chest so that his head was elevated a little.  This was very hard to do physically and emotionally.  This reminded me of watching an infant trying to raise his head while laying on his belly...cameron does not have strength to raise his head or enough strength in his to arms push himslef up.
Thursday, Friday, and Saturday they have put Cameron on a table that straps him to it, it has a board under his feet that and then it slowly moves him to a standing position.  This is very hard for Cameron todo.  This really stretches his legs....

Up until this weekend Cameron didn't know everything that has happened to him yet.  I think Cameron remembers the week leading up to him coming to the hospital.  We have only explained to him that he got very sick and that he was asleep for little over two weeks to try to get him well....   IF you ask him how he is?  he will answer, " not too well."  We assure him that he is getting better everyday.
When we explain how much time has gone by or that he is 12 years old and his birthday has passed he gets very emotional....
We go through this a couple of times a day everyday......
The child life counselor has made a board game and a calander all about Cameron's hospital stay and all the things that have happened to him while he has been here.  This helps tell the story to Cameron and helps trigger questions that Cameron may have for us to answer about what is going on with him.

The doctors say that they are planning on us going to Tampa General Hospital on Tuesday of this week.
We are excited for Cameron to have intense therapy for his recovery, at the same time a little nervous for what may come.