No more feeding tube!

Last week, Noah made progress with the removal of his Nasogastric intubation tube. Also known as a feeding tube, extending from his nose into his stomach and providing additional nutrition other than from a bottle.

This is a big step for Noah, and certainly will make him more comfortable.

Noah has become a great traveler on his weekly trips to Children's Hospital in Boston, sleeping all the way there and back!

An overwhelming show of support!

A fundraiser was held Saturday evening, January 17th at the Eagles in Shelburne Falls to support Noah and family.  Ninety eight friends, friends of friends and family members painted a beautiful wooded scene and contributed to raffles and prizes.

A heartfelt thank you to everyone who organized, donated, painted and observed this overwhelming show of support.  Our hearts are touched by your kindness and generosity.

First trip back to Children's

Noah had his first return appointment back to Children's Hospital in Boston today and the staff is impressed with his progress.  After some blood work they adjusted his medication.

He continues to be monitored at home and in Boston.

Home!

We are so happy to report that due to Noah's potassium and creatinine levels lowering, we were able to leave Children's Hospital and the Yawkey Family Inn and go home to Turners Falls, MA!

Noah still has his feeding tube and will require constant monitoring and decanting of his food. He will also be scheduled for a weekly Children's Hospital visit and two local weekly pediatrician appointments to monitor his progress.

This is the most amazing New Years gift and much more than we ever had expected!  2015 is full of hope for our family.

Thanks again for your continued support!