Friday, October 15, 2010

To Eat

Claire with her handy dandy back pack that held her pump and bag of milk. 

They say "don't worry" but seriously, my two year old won't eat.  I could cry every day!   There were so many long days of feeding and therapy.  Agonizing over eating just three little cheerios and two teaspoons of thickened milk was my daily reality for so long. 

Through a shockingly tragic situation Claire lost her sucking reflex as a baby. When we got her she had completely lost her ability to eat and was 100% dependent on a feeding tube.  Just thinking back on the ordeal is overwhelming.  Reflux caused her to be hooked up to the the milk machine nearly every moment.  We had to run it so slow.  When she was not "eating" she still couldn't lay flat because of the reflux which caused her to fell even farther behind physically.  She was always full and didn't understand hunger.  If we stopped the tube feedings so she could feel hungry she would scream and refuse food because she didn't understand.  We could never get enough down her to hopefully show her that food makes the pain go away.

SLOWLY she began to like a few things and would eat five or six Cheetos at a time, the puffy kind.  Six months later it was milk, Cheetos and a cheese stick.  A few months went by and she liked peperoni, green beans and mac and cheese.  By her third birthday we were ready to try going cold turkey, no tube feedings.  She was super small so her weight was monitored obsessively. Thank God!  She did it!  We started by giving her regular food enriched with things like Duocal, which pumps up the calories.  Eventually, we weened her off the Duocal.  At three and a half we got the feeding tube OUT!

It's amazing watching her now.  She moves around so much better and plays on her tummy.  She loves physical therapy, which was torture before with her tube bumping into things.  Honey, if we got through that, WE CAN DO ANYTHING!

1 comment:

  1. Oh this is so good to hear. We are going through the EXACT thing right now and he is at the Cheetos stage. Too funny!! Thanks for posting this. It is very encouraging!!