a better day...

John...resting and still

John has had a much better day today: no fever, able to keep food down and pain controlled.  He even ventured out of his room with a LOT of prodding to ride his favorite pink tricycle.  This is remarkable since this morning he was afraid to even stand on his own two legs.  He is skiddish about everything possibly causing pain.

Good news from the MRI is that John's brain and pituitary gland are normal, which means that his Human Growth Hormone deficiency will be treated with shots for the next 15 years. 

John's Mom and Dad were trained several times today on how to use his "Infinity"  and "Joey" feeding tube pumps.  This includes being introduced to terms like "priming" and "extension tubing", plus using our math skills to determine rate and pulse time.  We received our own IV pole that will now decorate the room John sleeps in.  My friend, Robin suggested ivy and Christmas lights might be an appropriate camouflage depending on the season. Any other suggestions will be considered as well. 

We are hopeful John will be released either Sunday or Monday.   We have had excellent care from the Dr.'s and nurses, CNN's and Technicians yet getting used to  being available on their schedules hasn't been easy.   It is the constant feeling of being "on call".   Home will be a wonderful treat. 

Thanks for your prayers and support.  We have experienced much grace and peace. 

Sincerely,
Laure, Ron and Grandma M