I had planned to update the blog last week, but unfortunately there does not seem to be enough hours in the day! Last week Tuesday, Nathan graduated from the intensive feeding therapy program almost completely tube weaned (I say almost because he is still getting 10 ounces of water and medicines through the tube daily). The staff put on a little ceremony for Nathan, complete with a cap and gown, which Nathan was not to enthused with. I think that this was probably one of the moments that we were most proud of Nathan, he worked so hard over the past eight weeks and accomplished so much in such a short time frame! The only thing that was missing from his graduation was his "little" brother, on Monday of last week Travis was diagnosed with strep.
When one of the boys is sick, we do our best to keep them away from each other so that the other one does not get it, but more often than not our efforts are in vain. Wednesday morning, the day after Nathan graduated from the program I got a call from daycare that Nathan had a favor of 102. Sickness is terrible for any kid, but even worse for a child that is just learning how to eat by mouth. I immediately called the feeding program because we never talked about how to handle feelings when he is sick. They told us that we should continue to feed him because it is important for him to learn that even though he is sick he still needs to eat. They also said not to worry to much about the calories that he is consuming and just let him have his favorite foods and make sure that he continues to stay hydrated. They also said that we won the award for getting sick the quickest after discharge from the program! So for the next few days, Nathan's meals consisted of fruit, pudding and his "milk" which is a mixture of yogurt and pedisure. While we did notice a huge increase in problem behaviors while Nathan was sick, I am so happy to say that we made it through, did not have to do any tube feedings and now that he is feeling better, his eating is back to normal.
The boys are both healthy and back at daycare full time for the rest of the summer and love it, especially because it brings back some sense of normalcy that has been missing for quite a while. So, now that we have graduated from the program, we begin what will be our new "normal." Nathan now eats five times a day, generally about every three hours; so it is like we have a newborn all over again with the exception of no middle of the night feeds. He is considered to be a non self-feeder, so at this time only approved feeders can feed him. At this point, there are only three approved feeders, Bob, Kathy (his daycare provider) and myself and per the recommendation of his psychologist, we will not train any additional feeders until after he goes back to school in the fall. This means that our lives now revolve around mealtimes, which if at all possible need to be done at home or daycare, because of the comfort level that he has in both of these places. So, we will be homebodies this summer, which really isn't that bad considering that we live on the lake. Please feel free to visit and know that if/when we have to say no to an invitation, it isn't because we don't want to come, it is because we cannot.
Thank you again for your continued thoughts and prayers. Please continue to pray for stability with Nathan's feeds and that both boys stay healthy for the rest of the summer.
