We Have Food!

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!

Intensive Feeding Therapy – 1 Week Down, 7 More to Go

We made it through our first week of therapy and we are all still standing!  This week has been a very hectic and tiring week.  We are getting used to being at the program during the day and figuring out what our new routine will be for the next eight weeks.  Nathan did really well, the first couple of days were very hard for him because it was a huge disruption to his normal routine, but by the end of the week he had settled in pretty well.  I have tried to write a short summary of what each of our days looked like this week.  Going forward I am going to try and blog every couple of days so the posts are not so long!

Monday – Because this was our first day in the program, we only had to be there for two feedings.  We started out the day with the social worker filing out paperwork, taking a tour of the facility and meeting the other kiddos that will be in the program with Nathan.  There are currently three other kiddos, but by the time that Nathan is discharged there will be a total of seven other kiddos.  The makes for a lot of people in a little area!  After that, Nathan had meal times scheduled for 11:00 a.m. and 2:00 p.m., both of which I did with Nathan’s team watching from the observation room.  In true Nathan fashion, he ate the best that he has for me in a long time.  These feedings were used as a baseline for the team, they want to see how he eats for me in a setting this is as much like the home setting as possible.  This was the last day that I was allowed to be in the room during meal times for at least two weeks.

Tuesday – I was warned before the first meal of the day that it is not uncommon for kids to not eat anything during this meal, which is exactly what Nathan did.  This was the first meal that he had with one of his new therapists.  They had him in a new seat that provides better support than the one that we were using at home, they were trying out new utensils and cups and new foods, all of which Nathan wanted nothing to do with.  The second meal of the day, was similar to the first, but he did eat all of the food that was present to him.  Not surprising because it was chocolate pudding, which is one of his favorites. 

By the last meal of the day, his team had their treatment plan in place and were ready to begin.  They started out by telling Nathan what he would expect during his “meal time.”  There is a timer set for every meal time, the meal time starts when the timer starts and does not end until the time beeps.  They then went over what they were going to work on, big opens of his mouth for three sustained seconds and tight closes of his mouth for three sustained seconds, rotating every other time, with a dry spoon and then no spoon.  All food and drink was removed from this meal and will be until he has mastered these skills.  The reason that this is done is so that Nathan has a good foundation when they start adding food and drink back into the meals.  The goal of this first session is really to get Nathan acquainted with with the new routine, which he did really well with.

Wednesday – For me, this was the hardest day of the week.  Nathan had his three meal times, all of which they continued to work on the big open and tight close.  He did really well with the new meal time routine, but seemed to have a really had time coordinating keeping his mouth open and closed for three seconds.  Part of this was because he wanted to count along with the therapist, which would cause him to lose the open/close and they would have to start over.  Because of the issues that he was dealing with, they actually took the dry spoon away.  We were prepared that at some point during the program, Nathan would no longer be able to have any food or drink by mouth outside of the program, before we left for the day, the dietitian told us that we would start that day.  Needless to say, there were many tears that night because could not have his sippy made worse by the fact that he was extremely tired. 

Thursday – The first meal of the day they decided to try something different, instead of counting they would hold up a picture of a person with their mouth wide open for three seconds and then change the picture to a person with their mouth closed tight for three seconds, all while reminding him that he needs to be quiet to keep a continuous open.  The second meal of the day made another change that seemed to make all of the difference.  They could tell that Nathan was understanding what was being asked of him, but just wasn’t able to put all of the pieces together to be able to do it.  This is not surprising because one of the things that Nathan struggles with is motor planning (putting all the steps together in the right order to complete a task).  So, they started putting a finger a his bottom teeth to provide the little bit of help that he needs to keep his mouth wide open.  This change helped so much!  The third meal of the day was the same as the second.

Friday –  Was the best day of the week, not only because it was the last day of the week, but also because I could finally see some progress being made.  The first meal of the day, Nathan’s psychologist sat in the observation room to explain the changes that they would be making that day.  They started his oral motor package, which is exercises that are done before the time starts for meal time and add the dry spoon back into the meal.  The other two feedings worked on the same things as the first.  We did get some good news at the end of the day, depending on how much regression Nathan has over the weekend, we could start adding some food into his meals as early as Monday afternoon!