Feeding Tube Awareness Week - Day 1

Many of you know that my fourth child, Naomi, has a feeding tube.  This week is the first ever Feeding Tube Awareness week.  We are very excited to be a part of this.  Each day we will do something a little different to hopefully help people better understand feeding tubes and the children and adults who use them.  Today we are launching our video about why some children have feeding tubes.  Please watch and be sure to notice the cute little girl at 2:10, that's our Naomi.

Today we also want to tell you why Naomi has a feeding tube.  To be honest we don't fully understand that.  Naomi cannot or will not eat enough food to grow.  She has celiac disease that prior to diagnosis caused severe malnutrition.  She also has GERD (gastroesophageal reflux) which can be very painful.  She has enlarged tonsils and sleep apnea.  But rarely do any of these stop a child from eating to the point of no growth, but that was the case with Naomi.  Perhaps eating is painful or maybe there is no hunger cues, it's a bit of a mystery.  Whether these issues or something we've yet to discover is why she doesn't eat, we are thankful for the feeding tube (or button as we call it here at home) to keep her alive.  Naomi gets three "tubie snacks" a day, and then eats some orally.  Occasionally she gets a fourth tube feeding or an overnight feeding when her eating is especially down or she's been ill.

For this week, for those of you on Facebook, would you consider changing your profile picture to the one above?  It would mean a lot to me, and eventually to Naomi too, though I'm not sure she gets it now.  For those of you that are wondering, so what does that tube look like, Naomi offered to show it off for us.

And the best part about her feeding tube is that she can eat on the run.  Here she is this afternoon playing with Bethany.  The backpack holds her food and pump which delivers her food at a steady rate.

And lastly we cannot forget Bethany.  This is Feeding Tube Awareness Week but today was also Bethany's birthday party.  Can't believe she's eight!

And lastly those far flung friends and family would never forgive me for not posting a picture of the baby.  So here's our monkey Mary with her monkey.

Oh and last but not least.  I gave up on not using the kids real names.  With five kiddos I just couldn't keep track, so for those of you reading my previous posts.  Alpha=Sam  Beta=Bethany Charlie=Elijah Delta=Naomi and Echo=Mary,