I just wanted to let you know how Josh is doing. It's been a crazy and wild week and we are still adjusting to the 'new' way of life here.
Josh is doing amazing! It wasn't until he had the NG tube placed and he was getting the nutrition he needs that we have realized how bad things had gotten. His decline was so gradual that there was not one specific event to let us know that he was in some serious need of help. But now that he is getting his calories, he is totally a different boy! Before the tube, he was taking 3 naps a day. I started to wonder recently how normal this was for an almost 22 month old to take 3 naps a day. But he was always tired so that is what he did. Now he is only taking one afternoon nap, and it is so nice! He is so full of energy and excitement. He is so much happier now. He is eating a little better as well. Not alot of intake, but he is more willing to try things now that we don't force any eating on him. He still won't drink, but for now we aren't pushing that. He is not a big fan of his tube, but so far has not messed with it at all. We have Home Health Care now that helps us with the tube and all the supplies, including his new formula. It has been an adjustment to find the best way to transport everything, how to make it all work and to keep his feeding schedule going. We are doing every 2 hours right now since he can't tolerate large amounts of formula at one time because of his reflux. But all in all, it is going well. He is doing so much better that it makes it all worth it. I don't care how much more effort it takes, it is doing what we weren't able to do by mouth and I am feeling very relieved for the first time in months.
So I know you have seen these pictures I am posting, but I just wanted to show you something. The top one was taken the afternoon after his ER visit. Look at his color and the way he looks. Then look at the picture below that. It wast taken two days ago. I was looking at them today and I can't believe the difference!
We still have the issue of reflux going on as well as constipation. I am making some calls tomorrow down to the hospital to talk to his GI doctor. I know that we haven't gotten to the bottom of all his problems, but we are making progress. Thanks for all the love and concern!