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!
Tuesday, June 25, 2013
Tuesday, June 18, 2013
Intensive Feeding Therapy - Week 5
There were alot of changes made in week five. We started out the week with a change that caused a step back for Nathan. Before entering the program, Nathan hated having his teeth brushed, we literally had to hold him down to be able to brush his teeth for a few quick seconds. Since the first week of the program, they have slowly been working on getting him to accept having his teeth brushed. By the end of week four, they were able to brush his teeth with a wet tooth brush for 30 seconds, so his therapist decided that it was time to add in toothpaste. Apparently, toothpaste was the thing that Nathan hated most about brushing his teeth! Nathan really fought this change, by the end of the week the brushing started to look a little better, but not even close to how easy it was before the addition of toothpaste.
The negative behaviors that were brought on by the addition of the toothpaste actually slowed down my caregiver training. I was introduced into his mealtime first the first time on Wednesday. The introduction went much better than I thought it was going to go, Nathan actually was pretty excited to have me in the room with him. The first two meals, I was in charge of providing praise and reinforcement. The third meal, I was able to feed him his food, the fourth meal I did food and drink and the fifth meal I was able to do everything myself. His last meal of the day on Friday afternoon, I was in the room by myself, with the therapist watching from behind the mirror and providing guidance through an earpiece. After being in the room with Nathan for almost three full days of training, I now feel comfortable with his feeding protocol, but in the beginning it felt very unnatural.
The most exciting change of the week was the removal of his daytime tube feeds while he was at eating school! Because he was consistently meeting his goal volume for each of his meals, on Monday afternoon I was told not to bring anymore tube feeds to school with us. From that point forward, if Nathan had a bad meal, he would just need to wait until the next meal to eat again and hopefully start to feel hunger. So, with the exception of the weekend, for the first time in his life, Nathan consumed more of his required calories by mouth than he did by tube! We are so proud of him and amazed by the progress that he has made in only five weeks!
Thank you for continuing to keep our family in your thoughts and prayers! I have a feeling that there is going to be some HUGE changes coming for week six.....
The negative behaviors that were brought on by the addition of the toothpaste actually slowed down my caregiver training. I was introduced into his mealtime first the first time on Wednesday. The introduction went much better than I thought it was going to go, Nathan actually was pretty excited to have me in the room with him. The first two meals, I was in charge of providing praise and reinforcement. The third meal, I was able to feed him his food, the fourth meal I did food and drink and the fifth meal I was able to do everything myself. His last meal of the day on Friday afternoon, I was in the room by myself, with the therapist watching from behind the mirror and providing guidance through an earpiece. After being in the room with Nathan for almost three full days of training, I now feel comfortable with his feeding protocol, but in the beginning it felt very unnatural.
The most exciting change of the week was the removal of his daytime tube feeds while he was at eating school! Because he was consistently meeting his goal volume for each of his meals, on Monday afternoon I was told not to bring anymore tube feeds to school with us. From that point forward, if Nathan had a bad meal, he would just need to wait until the next meal to eat again and hopefully start to feel hunger. So, with the exception of the weekend, for the first time in his life, Nathan consumed more of his required calories by mouth than he did by tube! We are so proud of him and amazed by the progress that he has made in only five weeks!
Thank you for continuing to keep our family in your thoughts and prayers! I have a feeling that there is going to be some HUGE changes coming for week six.....
Sunday, June 9, 2013
Intensive Feeding Therapy - Week 4
4 weeks down, 4 more to go! Tonight's post is going to be a short one, because I am exhausted! In my meeting with the social worker last week, she said that parents have said that weeks four and five are the hardest on them. I definitely agree!
Nathan made some really great progress again this week. He actually ate and drink enough by mouth for six meals this week that we did not need to do a tube feeding after those meals. At this point, his goal for a meal time is 180 grams total of food and drink, with his final goal being 210 grams per meal. He ended the day on Friday eating 191 grams for his lunch meal and 198 grams for his afternoon meal. I am hoping that we will be able to pick up right where we left off tomorrow morning!
Nathan ended up having his swallow study on Thursday of this week. We had a chance to meet with his speech therapist on Thursday of this past week to go over the preliminary results and will be meeting with her at some point this week to watch the swallow study. The swallow study showed that when Nathan swallows some residual is staying in the back of his throat, this is likely the cause of the increase of the coughing and clearing of the throat that they have noticed in this meal times with the addition of food and drink. While the residual is not unsafe, they would like to minimize it as much as possible. The residual was less with thinner foods than thicker, so they will be alternating his bites between a thick puree and thin puree which should help him clear the residual better and are also working with him to clear his throat during his meal. The hope is that this well get better as he has more practice with eating. The swallow study also showed that he may have some volume tolerance issues. They will continue to watch for signs of this and may add some additional time to his meal which will allow them to slow down the pace while still getting in the volume that they need.
If his progress continues at the rate that it has been, I will begin learning Nathan's feeding protocol on Wednesday of this week, with the hope that I could begin feeding Nathan at home next weekend or early the following week. How quickly this happens will depend entirely on Nathan. They have warned me that the first person to go through training generally has it the hardest, which I thoroughly expected. In addition to me learning the protocol, they are also going to work on increasing the number of foods that are in his preferred rotation.
Thank you again for all of your thoughts and prayers. Please pray for another great week of therapy for Nathan and energy for me!
Nathan made some really great progress again this week. He actually ate and drink enough by mouth for six meals this week that we did not need to do a tube feeding after those meals. At this point, his goal for a meal time is 180 grams total of food and drink, with his final goal being 210 grams per meal. He ended the day on Friday eating 191 grams for his lunch meal and 198 grams for his afternoon meal. I am hoping that we will be able to pick up right where we left off tomorrow morning!
Nathan ended up having his swallow study on Thursday of this week. We had a chance to meet with his speech therapist on Thursday of this past week to go over the preliminary results and will be meeting with her at some point this week to watch the swallow study. The swallow study showed that when Nathan swallows some residual is staying in the back of his throat, this is likely the cause of the increase of the coughing and clearing of the throat that they have noticed in this meal times with the addition of food and drink. While the residual is not unsafe, they would like to minimize it as much as possible. The residual was less with thinner foods than thicker, so they will be alternating his bites between a thick puree and thin puree which should help him clear the residual better and are also working with him to clear his throat during his meal. The hope is that this well get better as he has more practice with eating. The swallow study also showed that he may have some volume tolerance issues. They will continue to watch for signs of this and may add some additional time to his meal which will allow them to slow down the pace while still getting in the volume that they need.
If his progress continues at the rate that it has been, I will begin learning Nathan's feeding protocol on Wednesday of this week, with the hope that I could begin feeding Nathan at home next weekend or early the following week. How quickly this happens will depend entirely on Nathan. They have warned me that the first person to go through training generally has it the hardest, which I thoroughly expected. In addition to me learning the protocol, they are also going to work on increasing the number of foods that are in his preferred rotation.
Thank you again for all of your thoughts and prayers. Please pray for another great week of therapy for Nathan and energy for me!
Sunday, June 2, 2013
Intensive Feeding Program - Week 3
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.
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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