Happy Mealtimes is an month-long intensive feeding therapy program for children who are unable to transition to eating normally with other methods. Kyle had to meet certain criteria to even be considered for this program including a referal from a medical doctor stating the need for the program, having completed outpatient feeding therapy without success, the OPMS (swallow study) showing that he had no medical condition preventing him from taking food by mouth safely, and even being on a very specific schedule for when he receives his tube feedings during the day. The application for the program required video of attempts to feed Kyle both in the therapy setting and at home and a 72 hour log of food intake. Once we turned in the application, it took a while for them to review it and determine his eligilbility for the program. As they are currently only able to provide this program for one child at a time and it is a month-long program, the waiting list was very long and they first gave us a tentative start date of September of 2011! We were very excited when we got the word that there was an earlier opening in the program for this year!
Monday, August 16th was Kyle's first day in the program. We arrived at the Sexton building (located between the old Physicians Office Building and the new parking garage) at 8:00 am for his initial assessment. We met with Allison and Cara, the feeding therapists for the program, on the fourth floor. To get an idea of how an attempt at feeding normally went, they had me go in therapy room with him and try to feed him while they watched from a smaller adjoining room through a mirror/window. Kyle didn't cooperate, as usual. When time was up, Allison and Cara came back in, gave some feedback and what to expect during the program. I was given a welcome packet with information about the area, a map of downtown St Petersburg, a map of the hospital, information on Ronald McDonald House, tickets to Great Explorations museum, a coffee perks card for the cafe downstairs and an itenerary for the next four weeks.
Next, we went downstairs for him to be weighed and measured by Sandra, the dietician and to discuss his diet. He will be weighed and measured every Monday to compare to to previous week and to monitor any weight gain/loss during the program.
At 10:30 am, we went back to the fourth floor for a snack-time feeding session. This time, I watched from the observation room while Allison fed him. She started in slow, giving him toys to choose from ("Do you want to play with this toy or this toy?"). She asked him to show her ah-mmm's with a spoon, where he opened his mouth wide for the spoon, then closed his lips and pulled it out with nothing on it. She progressed gradually to dipping just the tip of the spoon in yogurt and kissing the spoons or even doing ah-mmm's. Each time, he'd choose from two toys which he wanted beforehand and he'd be rewarded with the chosen toy. She also used a juice box and gave him choices like, "Do you want 1 sip or 3 sips?" and he'd drink the chosen amount of sips. Each time he tried to distract or refuse, at the first sign of resistance she'd distract him with choosing between toys and he'd seem to forget that he was about to refuse.
After the session, it was time to head downstairs to the third floor to meet up with the occupational therapist, Roseann, and go to the occupational therapy room down on the second floor. Occupational therapy doesn't work on trying to get Kyle to actually eat. They do more to do with his aversion to certain textures or having things in his mouth at all. So they have him try to bite foods like fruit loops in half but he doesn't have to swallow the peices. He can just take them out. Or they might have him fingerpainting with pudding on the table but not eating the pudding. That type of thing. He did not like this first day of occupational therapy. He cried and screamed at Roseann quite a bit during his hour session.
After occupational therapy, we headed back upstairs for the lunch feeding session with Allison. It went smoothly and he gave no signs of resistance.
After the Noon feeding session, we had 2 1/2 hours to kill before the next session. I was so tired already. I had worked my usual 11 am - 11 pm shift the night before and had been up early to get all the last minute things packed up and get out of the house by 7 am. We went to get some food for me and checked out the Family Resource Center in the OCC (Outpatient Care Center). In the Family Resource Center, they have a book shelf full of books donated by employees that are free for patients/families that want them. We grabbed a few books that Kyle liked as well as some books that he thought big sister Hannah would like.
At 3 pm, Kyle had his last session for the day, a snack. He did so well. He acts like it's no big deal to drink the Boost Kids Essentials instead of having it through the tube and he even took spoonfuls of pureed food like it was no big deal!
During the week, we had arranged to stay at Chris's parents' house so that we don't have to do so much driving and we don't have to drive so far in the morning rush-hour traffic. So Kyle and I went to their house and both fell asleep on the couch. It had been a very busy day. I woke up a little later but Kyle was out like a light and we weren't able to try dinner with him his first day. The rest of the week went pretty similar - 8:30 breakfast, 10:30 snack, 11:00 Occupational Therapy, Noon lunch, 3:00 snack. But each day, he did a little more - more sips of the Boost, more spoonfuls of pureed foods, more cooperation. They started bringing me in for one of the sessions a day the last couple days because he was doing so well and they said they wanted to focus on him cooperating with me as well since the transition to home feedings had been the challenge in the past. He was still pretty cooperative and they watched from the observation room and gave me feedback afterward such as not to use yes/no questions ("Can you take a big bite for me?") and giving more positive verbal comments ("That was a good try. Now lets try again to get all the food off the spoon." instead of "Not quite. Try again.").
We're only a quarter of the way through the program but he's already taking a large part of his daily nutrition (even if it is almost exclusively liquid still) by mouth. I'm excited to see how far he'll come in the second week. At the same time, I'm worried that I might get sick of All Children's Hospital pretty quickly between being there 5 days a week with Kyle and being there working on the other two days.
Sunday, August 22, 2010
Saturday, July 31, 2010
School and Happy Mealtimes
A lot has happened since Kyle's last hospital stay. He has been out of the hospital (other than the usual routine appointments and an outpatient swallow study or two) since 11/1/09!!!
In September last year, I started work at our favorite children's hospital - All Children's Hospital - doing registration/admissions in the Emergency Center on the weekends. At first, I had applied for a full-time position but it works well for me to be home all week and only work 12 hour shifts Saturdays and Sundays while Chris can be at home with the kids.
Kyle was hospitalized the last week in October 2009 for a touch of pneumonia.
Kyle did very well in the PreK at Curlew Creek Elementary School. My mind was put at ease as soon as I met his teacher, Ms. Laurie Curti, at Orientation. I explained to her that Kyle was on a feeding tube and did not take food by mouth and asked if she had ever had experience with any other children with feeding issues. She put my mind at ease by telling me that she had over 30 years experience in PreK with special needs children and had seen just about every type of developmental or feeding disorder. She said that she had in fact, in a previous year, had a student with a feeding tube and he had been eating by the end of the school year!
When Ms. Laurie asked me if Kyle was potty trained, I felt sheepish admitting that he was not. She told me that it was no problem, but she instructed me NOT to send any diapers - or even Pull-Ups with him! She said to get him underwear and send 5 complete outfits. Anything soiled, she would put in a plastic bag and send home for me to clean and replace, always keeping 5 complete outfits available. He was already using the potty sometimes after just the first week, and was completely daytime potty trained by a month!
At first, the main dilema was that by school system policy, they could not feed him anything - or even give him water to drink - in the classroom until they had a report from a successful "swallow study" clearing him for food and drinks. A swallow study is actually called an OPMS (oralpharyngeal motility study). During this test, the patient is seated in a chair attached to X-ray equipment while food/drinks with barium powder in them are given to the patient. Using the X-ray, they watch to see whether the food goes down the esophagus to the stomach or if there is aspiration (the food/drink going into the airway instead). We set up for Kyle to have a swallow study 10/1/09. He had been cooperating somewhat with pudding and similar textured foods at home but he fought heartily against the pudding, milk and juice we used as test items to the point that we had to put the pudding in a syringe and force it into his mouth. Despite the lack of cooperation, they were able to see the pudding go down the esophagus with no aspiration so they were able to clear him for puree foods and thickened liquids. However, the school couldn't accept this report alone because it was not an MD who signed off on it. It was a SLP (Speech-Language Pathologist). So then I had to have the GI (gastroenterology) doctor review the SLP's report and write a note based on the report saying that Kyle could have puree foods and thickened liquids.
As soon as the teacher got the okay, she began giving Kyle pudding, yogurt, mashed potatoes and other puree consistency foods as well as using a food processor to puree whatever she could from the regular cafeteria menu each day. In no time, he was eating daily almost full meals pureed at school. At home, however, he still fought us on anything by mouth. Sometimes it even seemed as though he fought harder at home the more he cooperated at school!
Since he was doing so well at school, Ms. Laurie wanted to take it to the next step so we scheduled another swallow study in April 2010 and Ms. Laurie even came along to help. She took the helm and the experiences were like night and day. Not only did he not fight, he laughed and sang during the study. The biggest problem they had was getting him to sit still, looking straight forward. They even fed him cheese puffs dusted with barium powder and he crunched and swallowed them like it was nothing. The test was a success and we were able to get the clearance for him to eat easily chewed solids at school. Although he was still fighting us at home over even pudding or yogurt, at school he was eating full meals for breakfast and lunch - soft spaghetti, bananas, grilled cheese sandwiches and more. Though it was frustrating that his success didn't carry over to home, it gave me hope that he wouldn't be always dependent on a feeding tube.
Not only was he doing well with eating, he was becoming more physically active, less timid, making friends and learning loads. He would see a sign with an "L" and he'd shout out "L for Ms Laurie!" or he'd see an "O" and shout "O for Olivia!". It wasn't long before we could ask him how to spell his name and he'd grin and say, "K-Y-L-E!". He was also taking the regular school bus with Hannah to and from school (except on days when he had private therapy appointments). He was so popular with the older girls. On more than one occaision, he came off the bus with a "love letter" from a little girl on the bus - just a piece of paper with I love Kyle scrawled on it and signed with the little girl's name, but he treasured it like it were gold.
Unfortunately, since Summer vacation started, he still doesn't eat for us at home and now he's only at home. But he's finally been accepted and scheduled for "Happy Mealtimes", the intensive feeding therapy program at All Children's Hospital. Starting August 16th, Kyle will be seen four times a day, Monday through Friday, for four weeks! During this time, I will be staying in the Ronald McDonald House with Kyle and my parents will be taking care of the girls during the day at home while Chris is at work during the week and then on Friday nights I'll bring him home so Chris can take care of him and the girls while I work and we'll go back to All Children's on Monday mornings. This promises to be a challenging four weeks and I'm sure I'll be sick of the hospital - possibly even moreso than when Kyle was in NICU - by the end of this.
In September last year, I started work at our favorite children's hospital - All Children's Hospital - doing registration/admissions in the Emergency Center on the weekends. At first, I had applied for a full-time position but it works well for me to be home all week and only work 12 hour shifts Saturdays and Sundays while Chris can be at home with the kids.
Kyle was hospitalized the last week in October 2009 for a touch of pneumonia.
Kyle did very well in the PreK at Curlew Creek Elementary School. My mind was put at ease as soon as I met his teacher, Ms. Laurie Curti, at Orientation. I explained to her that Kyle was on a feeding tube and did not take food by mouth and asked if she had ever had experience with any other children with feeding issues. She put my mind at ease by telling me that she had over 30 years experience in PreK with special needs children and had seen just about every type of developmental or feeding disorder. She said that she had in fact, in a previous year, had a student with a feeding tube and he had been eating by the end of the school year!
When Ms. Laurie asked me if Kyle was potty trained, I felt sheepish admitting that he was not. She told me that it was no problem, but she instructed me NOT to send any diapers - or even Pull-Ups with him! She said to get him underwear and send 5 complete outfits. Anything soiled, she would put in a plastic bag and send home for me to clean and replace, always keeping 5 complete outfits available. He was already using the potty sometimes after just the first week, and was completely daytime potty trained by a month!
At first, the main dilema was that by school system policy, they could not feed him anything - or even give him water to drink - in the classroom until they had a report from a successful "swallow study" clearing him for food and drinks. A swallow study is actually called an OPMS (oralpharyngeal motility study). During this test, the patient is seated in a chair attached to X-ray equipment while food/drinks with barium powder in them are given to the patient. Using the X-ray, they watch to see whether the food goes down the esophagus to the stomach or if there is aspiration (the food/drink going into the airway instead). We set up for Kyle to have a swallow study 10/1/09. He had been cooperating somewhat with pudding and similar textured foods at home but he fought heartily against the pudding, milk and juice we used as test items to the point that we had to put the pudding in a syringe and force it into his mouth. Despite the lack of cooperation, they were able to see the pudding go down the esophagus with no aspiration so they were able to clear him for puree foods and thickened liquids. However, the school couldn't accept this report alone because it was not an MD who signed off on it. It was a SLP (Speech-Language Pathologist). So then I had to have the GI (gastroenterology) doctor review the SLP's report and write a note based on the report saying that Kyle could have puree foods and thickened liquids.
As soon as the teacher got the okay, she began giving Kyle pudding, yogurt, mashed potatoes and other puree consistency foods as well as using a food processor to puree whatever she could from the regular cafeteria menu each day. In no time, he was eating daily almost full meals pureed at school. At home, however, he still fought us on anything by mouth. Sometimes it even seemed as though he fought harder at home the more he cooperated at school!
Since he was doing so well at school, Ms. Laurie wanted to take it to the next step so we scheduled another swallow study in April 2010 and Ms. Laurie even came along to help. She took the helm and the experiences were like night and day. Not only did he not fight, he laughed and sang during the study. The biggest problem they had was getting him to sit still, looking straight forward. They even fed him cheese puffs dusted with barium powder and he crunched and swallowed them like it was nothing. The test was a success and we were able to get the clearance for him to eat easily chewed solids at school. Although he was still fighting us at home over even pudding or yogurt, at school he was eating full meals for breakfast and lunch - soft spaghetti, bananas, grilled cheese sandwiches and more. Though it was frustrating that his success didn't carry over to home, it gave me hope that he wouldn't be always dependent on a feeding tube.
Not only was he doing well with eating, he was becoming more physically active, less timid, making friends and learning loads. He would see a sign with an "L" and he'd shout out "L for Ms Laurie!" or he'd see an "O" and shout "O for Olivia!". It wasn't long before we could ask him how to spell his name and he'd grin and say, "K-Y-L-E!". He was also taking the regular school bus with Hannah to and from school (except on days when he had private therapy appointments). He was so popular with the older girls. On more than one occaision, he came off the bus with a "love letter" from a little girl on the bus - just a piece of paper with I love Kyle scrawled on it and signed with the little girl's name, but he treasured it like it were gold.
Unfortunately, since Summer vacation started, he still doesn't eat for us at home and now he's only at home. But he's finally been accepted and scheduled for "Happy Mealtimes", the intensive feeding therapy program at All Children's Hospital. Starting August 16th, Kyle will be seen four times a day, Monday through Friday, for four weeks! During this time, I will be staying in the Ronald McDonald House with Kyle and my parents will be taking care of the girls during the day at home while Chris is at work during the week and then on Friday nights I'll bring him home so Chris can take care of him and the girls while I work and we'll go back to All Children's on Monday mornings. This promises to be a challenging four weeks and I'm sure I'll be sick of the hospital - possibly even moreso than when Kyle was in NICU - by the end of this.
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