Friday, May 23, 2014

Feeding Tube

We met with Will's pediatrician, she and the neurologist agree that Will should have a feeding tube. At first, I thought he didn't need one.  I would just work harder on trying to get him to eat.  The problem is with Leigh's Syndrome most of the children do not have an appetite.  We have already tried appetite stimulants (periactin) with no luck.  I know that he will do much better with a tube.  The stress of me trying to get him to eat everyday, stressing over if he got enough calories for the day or not will be gone.  I will know exactly how much nutrition he is receiving.  He will still be able to eat by mouth. All of that food will be extra calories.

Next Thursday we meet with the pediatric surgeon and schedule a  surgery date for the feeding tube. I have showed him some pictures on the computer of children with "buttons" in their bellies to help them eat.  He seems to understand.  He is such a brave little boy.


  1. Kasey, Doug, Will & Lauren,
    We love you guys! I hope the feeding tube takes one worry away, so you can enjoy Will and Lauren. Will is such a strong, brave boy! Praying for you everyday!
    Naomi, JD, Jane & Jack

  2. Support tools like tubes or oxygen always are a mental struggle till you see how much it helps. I hope you are seeing good progress and that Will is adjusting, as are the rest of you. The new normal is likely the hardest adjustment.