During our first week of feeding school, the psychologist on Nathan's team asked us to list our goals for the program. We decided on three goals: 1) For Nathan to be eating/drinking most of his calories by mouth; 2) To decrease the behavioral issues that were part of Nathan's meal time; and 3) To work on Nathan's aversion to textured food and to work towards more age appropriate meals.
We are exactly one week away from Nathan's graduation ceremony and have met/exceeded two of the goals. Last week Wednesday night was the last time that Nathan had any "tubey food." 6 days and counting, we are amazed and so proud of Nathan!!! We do still use his tube to give him extra water and for some of his meds, in the future we will work on slowly reducing the amount of water he is receiving through the tube and also work on having him take his meds by mouth. We are lucky that all of his meds are flavored and are hoping that this will make it easier for us to transition him to taking them by mouth rather then by his tube.
We have also seen a huge decrease in the behavioral issues that were present when we started the program. Nathan really understands his new feeding protocol and likes the structure that it provides. We did notice an increase in "problem behaviors" this past week, which is most likely related to the fact that Bob was being trained as a feeder and with Nathan at feeding school while I went back to work for a few days. Even with the increase in the "problem behaviors," we were still able to continue with each meal following protocol and there was not a decrease in the amount that he ate/drank for each meal. We expect we will continue to see an increase in "problem behaviors" as new feeders are trained or changes are made to the protocol, but they have proven to be only short bursts of problem behaviors and Bob and I are confident in our ability to address any behaviors that may come up.
The last goal we will not even be able to address during this program. After speaking with Nathan's psychologist, it was her recommendation that we not push trying a texture upgrade or work on more age appropriate foods (if I have not mentioned this in previous posts, all of the foods that Nathan is eating are smooth purees with the exception of applesauce.) It is pretty apparent when watching Nathan's mealtimes that he is still learning this new way of eating and it is still not the most comfortable or natural thing for him to do. Because of this, his team felt that it would be best for us to go home on smooth purees and let him get comfortable with purees and his new normal and then in the future work on a texture upgrade and age appropriate foods on an outpatient basis. More than likely this will not happen until next summer when he has another break from school. This is very common and really what I expected would happen.
In addition to Nathan's big week at feeding school, Travis also had a new experience this past week, his first time at summer camp! I can remember how much fun I had when I was younger going to camp and really wanted Travis to be able to experience this also. The YMCA in Hastings does a Tiny Tots camp for 4 and 5 year olds to introduce them to summer camp, it is two days and there is no overnight stay. We were a little apprehensive about how he would do because of how shy he can be, but he completely proved us wrong. He was so excited to go the first day, had a great time and told me on Thursday night that he was so excited to wake up in the morning so that he could go back to camp. He has already told us that he wants to go back again next year! If you would like to see pictures of his experience at camp you can see them at the following link: http://www.ymcaofbarrycounty.org/index.php?option=com_content&view=article&id=107&Itemid=86.
I know that I have said this many times over the past few weeks, but thank you again for keeping our family in your thoughts and prayers, we really do appreciate it!
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