Wednesday, February 6, 2013

A Little Boy's Appetite

Appetite: (n) a desire to satisfy any bodily need or craving.
An appetite is a curious thing. There are many descriptions and meanings of appetites. However, it is most commonly recognized with ones desire to eat. For some reason unbeknownst to us, sometimes James David's brain doesn't register appetite or hunger. In October, after losing weight instead of gaining it I was faced with a decision: Chiari decompression (a very risky brain surgery to remove pressure from the back of his brain that is malformed and in his spinal cord by removing part of his skull and vertebra that may or may not alleviate his symptoms  or g-tube placement that also may or may not work (we had an NG tube that failed miserably). After many tears and prayers I decided on the g-tube (gastrointestinal tube )feeding tube)). Since then he has gained 8 lbs! 

It has been a long journey these last few months. We started off doing 4 feeds a day and one over night. We learned how to use all kinds of equipment. We constantly have a cooler full of formula with us. We've dealt with an oozey, crusty tummy, and learned all about tube sizes, granulated tissue, and stomach ulcers. And all these things require flip flopping different medications. Remembering tube feed times and pump alarms going off in the middle of the night has just become part of our daily routine. But it is nowhere near as hard as I thought it would be, and I feel now it was the best decision I have ever made for my son, though possibly one of the hardest as well. 
Earlier this week we were able to move down to 3 feeds! That means he's eating by mouth! Although his diet mostly consists of Vienna sausages and cheese, we have made leaps and bounds in his eating! He loves scrambled eggs and he eats all kinds of chips and breads. We've recently got him eating green beans and a blueberry! This is an enormous achievement because James David is overcoming his gag reflex and his Sensory Processing Disorder. Yup, We have a new diagnosis of SPD. ( I'll write more on that tomorrow). 

The fact that my son is eating, gaining weight, and living healthily, is something I had begun to doubt I would ever see. Most people would never be so elated over macaroni and cheese all over their child, or probably don't remember the very first time they ate a candy bar or cookie dough. To see that cute little face all stuffed with biscuit makes my heart skip a beat. The fact that they made cereal with Elmo on the box and that he snacks it all day is truly amazing! These are life for you, but they are everyday miracles for us.