Nathan made some really great progress this week! When we started the week he was eating an average of 20 grams of pudding per meal, on Friday he had 70 grams at his first meal, 122 grams at his second meal and 130 grams at his third meal!! We were also able to add in the drink, two more foods, pears and fruit cocktail and increase his meal times from 10 to 15 minutes. His drink is given to him by a squeeze bottle, the therapists create a pocket in his check, fill it up with the liquid and then prompt him to close his mouth and swallow. I was very surprised and pleased that Nathan did not have any apprehension when the drink and new foods were added to his meal. Because of the increase in the amount he is eating orally, we were also able to decrease his tube feedings toward the end of the week! On Friday, we were able to take out 6 oz of tube feeding, which may not seem like a lot, but it is pretty significant considering that since Nathan has had his feeding tube, he has gotten all of his required calories from the feeding tube.
With the increase in the amount of food and drink that he is taking orally, the therapists have noticed that in some of his sessions he is coughing and clearing his throat more. At this point, they are watching this very closely. Nathan has always been congested and has environmental allergies, so there is a question of whether or not his allergies could be causing some of this added congestion. We actually have an appointment with Nathan's pulmonologist tomorrow and will be asking them if there are any other medications that we can try. We are also hoping that Nathan will be able to have a swallow study scheduled for Thursday of this week. For those of you that are not familiar with a swallow study, it is a procedure that will be done by the speech therapist that is on Nathan's team. She will add barium to his meal and be able to watch him eat, swallow, watch how the food travels to the stomach and watch for reflex or volume intolerance. Nathan has had swallow studies before that have not showed any noticeable issues, the good thing about this swallow study is that it is going to be done by his therapist, not a radiologist, and if she notices any issues, she will be able to try different techniques to address the potential issues.
Towards the end of the week, we also saw a decrease in the negative behaviors that I mentioned in my last post. The psychologist on Nathan's team said that it is extremely common for this to happen as the kiddos have been completely taken out of there normal routine and they are losing control of how and when they eat, which is something that they have always had control of. There is a lot of downtime in between the sessions, which is not structured at all. For those of you that know Nathan well, structure is very important to him. So, this week I am going to try to make his days more structured, working on some of the things that his was doing at school and at ABA therapy. The one thing that the therapists have asked is that we do not do to many physical activities because they do not want him to be too tired for his meal times. I am really hoping that by adding this structure, we will see the negative behaviors decrease even more.
On Friday, Travis got to come to feeding school to come see one of Nathan's meals. It has been very important to us that we keep Travis as involved in this process as possible, we try to prompt him every day to ask Nathan what he worked on at feeding school. Travis did really well keeping quite while we were watching Nathan's meal time, but he was extremely bored. I am 100% sure that his favorite part of the visit to feeding school was the train table in the waiting area! I am some proud of how he has handled this change in his routine and how much he supports his brother!
Thank you for continuing to keep our family in your thoughts and prayers! This week, we would really appreciate it if you would pray for a continued decrease in the negative behaviors and an answer to the added congestion, coughing and throat clearing that the therapists have noticed in his sessions.
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