Jumping In

I've been meaning to start a blog related to our youngest son's feeding issues (I'll refer to him as X) for a while now. X has had a feeding tube for almost 11 months now (we were told it would be a 3 month gig). He received a tube through his nose (n-g) tube Aug 29, 2011 and later received a g-j tube (one tube goes to his stomach, the other part goes to his small intestine) Dec.9th, 2011.


I've been blogging about it on my family blog, but that's really all I have been blogging about, and that is not all our life is about, so il decided to go with a separate blog.


I'll try to move posts from my other blog (if that's even possible), but for now, I'll just blog about where we are at right now.


X needed to get a feeding tube because he stopped growing and stopped gaining weight. His growth curve was flat. He didn't eat much, gagged just looking at most foods, and refluxed. He has several food allergies (but we are down to 5 foods from 15) which also get in the way of him taking in enough calories. He receives feeding therapy 1x week and that has made all the difference for him.


X is doing great right now. He is eating a lot more variety of foods (fresh fruits and vegetables), however he is not eating high calorie foods, which means he hasn't gained weight in 2 weeks and chances are we'll need to increase the amount of time he is on his feeding tube. sigh. We just decreased the amount of time he was on it by one hour 3 weeks ago.


One hour may not seem like much, but in our world, it's one more hour of freedom for X. Currently, X is hooked up to his feeding pump from 6pm until 9am. If he wants to play outside after supper, he needs to wear this little black nylon backpack and run around with 320ml of formula in it. That isn't all that fun when its 80-90 degrees out with high humidity while running around and playing on the playset. It also means we don't go to the beach after supper to cool down on hot days, because he can't exactly swim or immerse himself in the water with the feeding pump.


Last year I rigged up the pump and backpack with plastic bags so he could play in the sprinkler and play a little in the lake, but he is way more adventurous now, so that won't work. If we have to hook him up at 5pm, that would just stink.


So that's where we are at. I still can't believe it when I see X walking around with an apple while we are at a park and chomping away at it. It brings tears to my eyes. Or like today, he was munching on pea pods and baby carrots and crackers while at a park like most other kids. You would have never thought he needed a feeding tube. Somedays I just cry with thankfulness as he is eating and at his excitement to eat. Crazy huh? How just the simple act of my son eating food brings such joy to my heart. But that is our world at the moment and we are in a good place and I will continue to live in the moment and be happy.