Billy's Care

Details on Billy's care will soon follow.  What we can tell you now is that Billy is BiPap dependent, meaning he uses a BiPap, a non-invasive breathing machine, to help him breathe 24 hours/day.  In fact, we use  the Non-Invasive (NIV) protocol to care for Billy daily.  This not only includes using the BiPap to help him breathe, but a cough machine to help simulate coughs, to clear him of upper airway secretions and secretions that may get into his lungs.  We also use a nebulizer to help administer breathing medications to Billy, to open up his airway and lungs, enabling him to breathe easier.

Billy is fed via a gastric tube (g-tube), because he cannot swallow.  We chose, a long time ago, to use what is now known as the Amino Acid Diet to feed Billy.  Within our SMA community, many people use this diet because SMA kids have been found to have a fatty acid metabolism disorder, which means that they cannot metabolize fatty acids and whole proteins like other people can.  Amino Acids are proteins broken down into their simplest form, so, in using them to feed Billy, we know we are feeding something that he can process and digest easier.  We use an amino acid formula blend of Vivonex and Tolerex, and we add lots of goodies to the formula...like fruits, vegetables and juices...which, in all, make one healthy amino acid cocktail for Billy!

We are thankful that there is now information out there that will help us care for Billy.  That wasn't the case just a few years before Billy was diagnosed.   So, to all those who have helped us learn how to care for Billy, which has enabled us to help other families, we say....

  THANK YOU!!