As I sit here today with Noah eating his lunch I am pondering the things to come. We have been told that most kids (more than half) end up with an NG tube. This is a feeding tube that gets inserted into the nose and runs down the back of the throat for feeding and giving medication. The thought of this is horrible but we must realize there is a good possibility that we may need to do this. As you can imagine all sorts of questions race thru our minds. How do we feed him? Will we need to crush his tablet medications and mix them somehow? We hope like crazy that it does not come to this. One of the things that have helped is many of his friends have sent him gift cards to different restaurants. He gets excited when he can use one to order food. Gina also helps a ton by having Noah do “Video Food Reviews” and having people comment gives Noah a sense of accomplishment (Like no one would eat there if it were not for his review). All of this we think is a huge blessing! Gina is a member of a few groups of parents who are going thru the same battle and in different stages. Between these groups and Noah’s wonderful medical team, we are able to prepare ourselves for the battles and hurdles ahead. Thank you to everyone who help keep us strong and fighting for “The Amazing Noah”
2021-03-08
