We were able to introduce one of Nathan's preferred foods, chocolate almond pudding into is last meal of the day on Tuesday of last week. We were all hoping that he would be so excited to finally have food, unfortunately that was not the case. After not having food or drink in a meal for a week and having to use the new feeding protocol while eating, Nathan was very scared. The first meal he did not eat enough to even count it and he was exhibiting alot of negative behaviors that we had not seen before. However, by Friday of week two, the negative behaviors and alot of the apprehension were gone. On Friday, he ate 24 grams of pudding for his first meal, 20 grams of pudding for his second meal and 20 grams of pudding for his third meal. If he continues to do well on Tuesday morning, we expect that drink will be added into his meals on Tuesday afternoon or Wednesday morning. I have been very impressed with the program and everyone on the team, the only downside is the amount of freetime that we have between each of his meals. Nathan has been pretty exhausted, so he has been taking naps in between his second and third meals which has allowed me to be able to catch up on some work emails and we have taken alot of shopping trips in between his first and second meals.
Alot of people have asked what is so unique about this program, other than the fact that it is intense. I had hoped to be able to tape some of Nathan's sessions to be able to post on the blog so that you could see what his meal time looks like; unfortunately, the program does not allow this. One of the things that is different about this program is that they are completely changing what his meal times look like, which will continue at home when we are discharged from the program. Right now, each of his meals are ten minutes long. They start out his mealtime with oral motor exercises, which are not included in the ten minutes. After they have completed the oral motor exercises, they will go over the rules for the meal session, right now his rules have been the same for every session, a bite with a dry spoon, a bite of chocolate pudding and then a "drink" with the squeeze bottle. I have drink in quotes, because right now there is not any liquid in the squeeze bottle. After he completes each task, he receives praise and gets to play with a preferred toy for a short period of time (10 seconds or less). When the timer goes off, he completes the task that he was in the middle of and then the meal time is over. Nathan has caught on to the routine of his mealtime very quickly!
While Nathan has seemed to adjusted to his new routine fairly well, we have noticed in an increase in the amount of temper tantrums that he is having and also episodes of head banging, especially over this past weekend. We think that some of this may be the result of having a houseful of people this weekend and also him still getting used to the new normal. Please pray that these negative behaviors start to decrease as they are very frustrating for all of us.
Please also pray that we have a week of continued gains and that we can start to see the volume that he is taking by mouth increase so that we can start decreasing his tube feedings.
Thank you for continuing to keep our family in your thoughts and prayers!
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