Showing posts from July, 2017

On eating/feeding

We have been working hard on helping Ryley start eating proper food again lately. He has basically lived on artificial formulas for the past 10 years. Not that this is a bad thing. It has helped him grow and enabled him to move his muscles better, so I am very grateful that this has even been an option for us.
But it time to start moving away some more from the formulas.
The first change was when he came off the Ketogenic Diet. This was a massive step for us. It had been our security blanket for a very long time. It all went smoothly though.
Since then he has been having 3 PEG feeds a day and we have also given him food at each meal as well has snack time. This has gradually helped him remember what food tastes like and allowed him to experience different tastes and textures again.

Today, I had this glorious remark to David when he got home from work:
"Ugh. Boys just eat sooo much. Ryley has not stopped eating all day. Teenagers..." 

When I think back to those early years, …