When I started this blog, I had every intention of updating it at least once a week, if not more, unfortunately, there just does not seem to be enough time in the day(or it might be that I am spending to much time on Pinterest!) This week marked seven weeks since Nathan last received any food through his tube! We also justed started giving him is meds by mouth, so the only thing that he is currently getting through his tube is a small amount of water, which I expect we will begin to slowly reduce in the near future. We have slowly been introducing new foods into his diet, I think that he has about 20 foods that are currently in his rotation. We have been closely watching his weight, at his two week post discharge follow-up appointment, Nathan had actually lost a little bit of weight, which they were not happy with. So, we have been weighing him weekly at home since that appointment. Just last week we started to see some weight gain which is very good. We have also been slowly introducing him into eating in more social settings to prepare him for eating with his peers at school in the fall. This has actually been going fairly well. We have our six week follow-up appointment with the feeding program next week Wednesday and I am really hoping that they are happy with the progress that he has made!
Nathan has also started back up with most of this therapies in the past two weeks. He has ABA therapy one day a week for three hours, one hour of OT and next week will be starting a three week intensive PT session in Zeeland. One of the things that Bob and I struggled with is how much we should have him do this summer, we initially were not planning on having him do anything other than working on eating, but it almost seemed like he was getting a little bored. So, his schedule is pretty busy for the last few weeks of summer. I really hope that we are not pushing him to hard!
Travis has really seemed to be fairly uneffected by all of the changes to our lives this summer, which is what Bob and I had hoped for! He loves being outside, especially in the water. His swimming and comfort level has improved so much over last year. Last week Saturday I am pretty sure that he was in the water from noon until 8:00, only getting out of the water to eat. Bob and I are really happy that we decided to pull our house of the market. Now that the boys are getting older, we are really starting to be able to enjoy all of the benefits of living on the water.
I know that I have said it many times, but I feel like I can't say it enough, thank you for continuing to keep our family in your thoughts and prayers!
Friday, August 9, 2013
Friday, July 12, 2013
Graduation, Illness and Life
I had planned to update the blog last week, but unfortunately there does not seem to be enough hours in the day! Last week Tuesday, Nathan graduated from the intensive feeding therapy program almost completely tube weaned (I say almost because he is still getting 10 ounces of water and medicines through the tube daily). The staff put on a little ceremony for Nathan, complete with a cap and gown, which Nathan was not to enthused with. I think that this was probably one of the moments that we were most proud of Nathan, he worked so hard over the past eight weeks and accomplished so much in such a short time frame! The only thing that was missing from his graduation was his "little" brother, on Monday of last week Travis was diagnosed with strep.
When one of the boys is sick, we do our best to keep them away from each other so that the other one does not get it, but more often than not our efforts are in vain. Wednesday morning, the day after Nathan graduated from the program I got a call from daycare that Nathan had a favor of 102. Sickness is terrible for any kid, but even worse for a child that is just learning how to eat by mouth. I immediately called the feeding program because we never talked about how to handle feelings when he is sick. They told us that we should continue to feed him because it is important for him to learn that even though he is sick he still needs to eat. They also said not to worry to much about the calories that he is consuming and just let him have his favorite foods and make sure that he continues to stay hydrated. They also said that we won the award for getting sick the quickest after discharge from the program! So for the next few days, Nathan's meals consisted of fruit, pudding and his "milk" which is a mixture of yogurt and pedisure. While we did notice a huge increase in problem behaviors while Nathan was sick, I am so happy to say that we made it through, did not have to do any tube feedings and now that he is feeling better, his eating is back to normal.
The boys are both healthy and back at daycare full time for the rest of the summer and love it, especially because it brings back some sense of normalcy that has been missing for quite a while. So, now that we have graduated from the program, we begin what will be our new "normal." Nathan now eats five times a day, generally about every three hours; so it is like we have a newborn all over again with the exception of no middle of the night feeds. He is considered to be a non self-feeder, so at this time only approved feeders can feed him. At this point, there are only three approved feeders, Bob, Kathy (his daycare provider) and myself and per the recommendation of his psychologist, we will not train any additional feeders until after he goes back to school in the fall. This means that our lives now revolve around mealtimes, which if at all possible need to be done at home or daycare, because of the comfort level that he has in both of these places. So, we will be homebodies this summer, which really isn't that bad considering that we live on the lake. Please feel free to visit and know that if/when we have to say no to an invitation, it isn't because we don't want to come, it is because we cannot.
Thank you again for your continued thoughts and prayers. Please continue to pray for stability with Nathan's feeds and that both boys stay healthy for the rest of the summer.
When one of the boys is sick, we do our best to keep them away from each other so that the other one does not get it, but more often than not our efforts are in vain. Wednesday morning, the day after Nathan graduated from the program I got a call from daycare that Nathan had a favor of 102. Sickness is terrible for any kid, but even worse for a child that is just learning how to eat by mouth. I immediately called the feeding program because we never talked about how to handle feelings when he is sick. They told us that we should continue to feed him because it is important for him to learn that even though he is sick he still needs to eat. They also said not to worry to much about the calories that he is consuming and just let him have his favorite foods and make sure that he continues to stay hydrated. They also said that we won the award for getting sick the quickest after discharge from the program! So for the next few days, Nathan's meals consisted of fruit, pudding and his "milk" which is a mixture of yogurt and pedisure. While we did notice a huge increase in problem behaviors while Nathan was sick, I am so happy to say that we made it through, did not have to do any tube feedings and now that he is feeling better, his eating is back to normal.
The boys are both healthy and back at daycare full time for the rest of the summer and love it, especially because it brings back some sense of normalcy that has been missing for quite a while. So, now that we have graduated from the program, we begin what will be our new "normal." Nathan now eats five times a day, generally about every three hours; so it is like we have a newborn all over again with the exception of no middle of the night feeds. He is considered to be a non self-feeder, so at this time only approved feeders can feed him. At this point, there are only three approved feeders, Bob, Kathy (his daycare provider) and myself and per the recommendation of his psychologist, we will not train any additional feeders until after he goes back to school in the fall. This means that our lives now revolve around mealtimes, which if at all possible need to be done at home or daycare, because of the comfort level that he has in both of these places. So, we will be homebodies this summer, which really isn't that bad considering that we live on the lake. Please feel free to visit and know that if/when we have to say no to an invitation, it isn't because we don't want to come, it is because we cannot.
Thank you again for your continued thoughts and prayers. Please continue to pray for stability with Nathan's feeds and that both boys stay healthy for the rest of the summer.
Tuesday, June 25, 2013
Intensive Feeding Program - Week 6 and Camp
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!
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 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.
Monday, May 27, 2013
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!
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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