Wednesday Jonathan had a GI appointment. Jonathan still hadn't gained any weight and the last set of lab work came back good. In the past 6months he has had 3 stomach biopsy, stool samples, several urine test, a calorie count , and so much lab work I'm surprised he has any blood left. The good news is they have now ruled out diabetes, celiac disease, thyroid, cystic fibrosis, they can't find anything...Ugh! Each appointment I would think OK today they will have some answers,but they haven't. We are so happy that he doesn't seem to have any of the medical conditions he was tested for , but why can't he gain weight? So, 5 weeks ago they put him on a special milk shake that had 1500 calories per drink, along with his regular diet. It was just to much for him to eat in a 12 hour day. His weight has been about the same for the last 4 years 39 to 42 pounds. Jonathan is 9 and wears a size 4/5 or 5 slim ....I just love the pants with the elastic that buttons to tighten! On the DS growth chart for boys his age he isn't even on the chart, Dr. Screws(don't you love the name) would like to see him at the 50% range. He thinks this would also help Jonathan gain the muscle he needs to be able to run and ride a bike, things he isn't physically able to do now. I'd love to see him walk when we go to Disney World in November, he has always had to ride in a stroller. I want to look out in the yard and see Jonathan enjoying the fresh air, sunshine, playing with his brothers, and not just watching.
Jonathan will be going in tomorrow at 10:00AM for a NG tube. They will put the tube in, do some MORE lab work, and x-rays to make sure the tube is in place. So, it sounds like a full day for Mr. Jonathan. He had a G tube for 2 years, but they didn't want to go straight to that. They're going to see how the feedings and weight go before, they would want to put him through another surgery. Home health will come tomorrow afternoon to set up the pump. Jonathan will have feeding through the night and then eat by mouth throughout the day....in hopes this will help him pack on some weight. For those of you that don't know Jonathan eating isn't the problem, he is a "EATING MACHINE", just without weight gain. I'm praying Jonathan tolerates the tube and continues to eat well during the day so he can play catch up.