Can't afford to take anything for granted

Notes of how our family has been affected by my son's brain injury in June 2011.

How Jorgie and our family has been affected by Jorgie's inability to eat. 

One of the only things that Jorgie had in common with us and others was the fact that he could sit at a table and eat.  He loved the potlucks at church and the fact that he ate so well was a conversation starter and an ice-breaker for those who had never really interacted with Jorgie.  When we would pass by his favorite restaurants, he would yell out from his car seat "HAMBRE!" which means hungry, because he wanted us to go eat.  Dinner time was a very important part of our day as we would sit down together at the table and all of us enjoy the meal.  Jorgie had this strange ability to separate a certain food out of a mouthful and spit it out without spitting anything else out, if he didn't like that certain food.  For example, he wasn't a big vegetable fan, and I would make rice and mix in pieces of carrots or broccoli; we would feed him a spoonful and he would be able to separate (in his mouth) the rice from the vegetable and spit out the vegetables.  He also had a huge apetite, sometimes enthusiastically asking for seconds and even thirds.  We would go to restaurants at least once a week, after a doctors appointment or after church.  Jorgie and I also had our times when I would take him to breakfast, just him and I, he really enjoyed these times.

Now that Jorgie has the g-tube, we have been to a restaurant 3 maybe 4 times in the past year, usually because we can't get home to eat for whatever reason.   We don't plan family dinners in a restaurant on purpose because we refuse to eat and Jorgie feeling excluded.  When I can't cook we will get take-out and bring it home, usually putting Jorgie in his room to listen to music or watch his favorite show. 

Bottomline: mealtime is not the same!

The one thing that connected him and allowed him to feel included and the same as every one else, was taken away from him.

When he was 1-2 years old he had problems gaining weight.  The doctors presented the possibilities of inserting a g-tube to help him gain weight; after attending a meeting with nurses and dietitians and with some advice from therapists, I began cooking hi fat and hi calorie meals, that way every spoonful counted for him.  The pediatrician told me that if he didn't gain 2 lbs by a certain date, the tube would be inputed.  Well he did gain that weight and more, a big relief and victory for our family.  As he got older his eating and weight improved.  He was always underweight on the charts, but very healthy and never diagnosed with failure to thrive or malnourishment, the doctor wanted to keep him slim so we would be able to carry him.  His weight and health was always monitored and every one was impressed by his eating abilities.