Today Maddox ate 1.5 apple slices, soy cheese, graham cookies and sun butter and smarties candies and his vitamins. He requested all of these foods on his own. The apple slices are especially exciting. He hasn't eaten any fresh fruit in at least 2 months. I can't believe he actually requested these foods. Yesterday he also asked for some food and ate tortilla chips and a fruit snack.
However, he is throwing up today. I don't know if it is from his formula or if he has a bug. This morning just when we were putting our shoes on to go to his therapy he threw up, and he was getting his feeding. His energy is fine, no fever. Later he threw up 30 minutes after a small feeding. I don't know. I had the home care nurse check him out and he appeared healthy to her. She said children sometimes confuse queasiness with hunger, so that may be why he requested food and actually ate something. Figures. We are working so hard for him to figure out what hunger is and respond to it, and he eats on a day he's throwing up. The nurse also thinks he may be getting a flu, and the big feeds with the feeding tube are too much for his tummy now. We aren't going to give him any more today.
I am afraid he will throw up the tube.
The good thing is that he has some extra weight on him, sonic he doesn't eat well for a day or two, he'll be ok. The other good thing is that I can give him pedialyte through his tube, because he will not drink that stuff.
We may have a motility study done, to see if food moves through his system too slowly. That could explain a lot. He is also having some troubles in the pooping department. It's a simple test, just long. And again, having the tube is good for this. He can get all the barium stuff to be x-rayed through the tube instead of drinking it.
My heart just breaks for him. And I am getting more afraid of the g tube. Its definitely something I do not want to do. It's hard not feel like a failure sometimes. I know this isn't my fault, but the thought enters my mind often.
Things really are going well though. He has gained a little more and is getting taller. He has energy and stamina and is a lot stronger and can attend to tasks much better. He is definitely a pre-schooler.
Mason had his party on Sunday at the bowling alley. He had a lot of fun, and I have to say, having a party outside of the house was nice. And I forgot how much fun bowling is. We are going to have to make bowling a regular occurrence.
Maddox will be getting the g tube Dec 8 or Dec 9. We will pull the ng tube Dec 3 rd so he can be tube free for his birthday. I can't wait to see his sweet little face without any tape on it.
Snow is falling at the moment. I'm not sure I'm ready for it, but the boys are excited.
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