Feeding Update

I realized it's been a long time since I have given an update on Caden's feeding therapy. Things have been going really well. In fact, it has been two and a half months since he has received any food through his g-tube! The last feeding through his tube was on August 3. :) However, for about two more weeks, he still received a few ounces of water through the tube overnight. But as of the end of August, he has not had anything through his tube!

It's hard to believe I am even saying that, to tell you the truth. :) But, that being said, it actually makes life more difficult at this point. Caden does NOT enjoy eating by mouth. If it were up to him, he wouldn't eat at all. He refuses to feed himself and he will only eat pureed food. He gags/retches on anything with texture. It is quite a struggle. Every mealtime is very stressful and involves a lot of focused attention. We can't feed him when the rest of us are eating because we can't do both at the same time. It's exhausting!

We are currently working with our feeding therapist to try to teach him how to chew so we can advance the kinds of foods he can eat. Right now he eats the foods that we eat but I have to puree them. So if we have enchilada casserole and beans, I puree those things for him. I do this in large batches and freeze them in 1 oz ice cube trays, as many people do for babies when they are first introduced to solid foods as an infant. However, if you look at my freezer, you will see that it is mostly filled with food for Caden. There is very little in there for us because we don't have room. He eats a much larger volume of food than a baby, so it involves a lot of work to make sure we have enough food for him.

In addition, we have to keep track of his calorie intake each day because he isn't growing in height and we have to provide documentation to every doctor who asks to prove that we are actually feeding him enough calories. Yet he still doesn't grow in height. He is very tiny and not on the growth charts. For weight he is around the 20^th percentile though. This means we have to make sure he does not get too heavy for his height because that isn't healthy either. It is quite a balancing act.

Because we haven't used Caden's tube for close to two months now, we have talked to several doctors to get their opinion on when they think we can have it removed. At this point, we are planning to wait until next spring to do so. Most of the doctors feel it is best to not remove it before cold/flu season in case we have to use it for any reason when he is sick. In addition, we will have to schedule a minor surgery to have it removed and closed. The pediatric surgeon we spoke with in Sacramento believes there is 0% chance that the hole will close on it's own. Caden has so much granulation tissue around the stoma anyway, that I really want to have it all cleaned out and sutured closed so it looks better anyway. So we will need to find a surgeon to do that in Washington after we get there.

We are ecstatic about how much progress Caden has made. But I ask that you continue to pray for his eating to improve. That he is willing to feed himself and that his aversion to texture will improve. And that he will learn how to chew his food so we can begin to feed him more table food instead of purees. Once we move, we will be on our own for feeding therapy so I am really nervous about that. The guidance and training from our feeding therapist has been invaluable and I don't know what we'll do without it.

Thank you all for your continued prayers!