This is a video my sister made from the week she came to eating school. I love it and the song she chose is perfect. A wonderful way to sum up our experience.
Thursday, July 1, 2010
Wednesday, April 21, 2010
Looking Back: 3 Families, Siblings, Caregiver Training, Future Treatment and Prayer
3 Families: One of the blessings of Eating School was meeting the 2 other families facing the same struggles as ours (and more). Both of the other children had gone through substantial medical procedures and their young lives were nothing short of miracles. We got to know each other piece by piece that first week as we had little to do but wait and visit. They soon felt like extended family, asking how my weekend with my oldest son (coming home from college) went, and how my other children were. I was interested in their lives and families too. I felt their pain as they went through their own learning sessions and their excitement when things went better. I learned a lot from them. We plan to get together sometime for an Eating School Reunion. I'm looking forward to it and ZZ will be excited to see them too.
Siblings: When I looked into the feeding program at OCH initially, one of my concerns was what to do with ZZ's 4 year-old sister, MM. His 2 brothers are older, one is in college and the other 12 years old so he's in school all day. The social worker who talked to me said that it if I needed to bring her for some of the time, the first 2 weeks were most doable. She just needed to know and she could line up some of the volunteers at OCH to watch her during the times I was observing or talking with the therapists. Between her older brothers, our friends, and Grandma, I was able to work out childcare for MM at home the first 3 weeks. For each of the last 2 weeks my 2 sisters came and helped watch her there in Dallas. They just came with us to Eating School and spent time with her playing in the playroom, the playground or going to the park. She is quite shy but soon warmed up to the other little girl in the program and they would watch DVDs together on her breaks. It worked out quite well and I got a visit from my sisters in the deal!
Caregiver Training: The OCH at Baylor feeding program will train 2 people in feeding as part of the intensive day program. Each of the other families had more than one caregiver take turns with the training. The other little boy's family always had 2 people at Eating School. Usually it was his Dad and his Grandma. They were the primary trainees. His mom came at least once a week and trained also but she already had learned much of the method in their outpatient sessions so it was doable. His grandpa came to lend support a couple of times and other grandma came a couple of times also. The little girl had her mom and her babysitter train. Her dad came a couple of times to observe and her grandma also. I on the other had was the only trainee for ZZ. My husband came once and observed but when I asked if he could try feeding they said since he couldn't be there more, he wouldn't be able to learn that quickly. Looking back I don't know that we could have worked it out any other way with his work schedule, but I do feel the pressure of being the only one doing the feeding now and wish there was a way to have a back up.
Future Treatment: At discharge the other families were put right into the outpatient program where they will come for therapy once a week at OCH while continuing the feeding sessions at home. Since I am so far away it was recommended that I keep up the therapies on my own except for Occupational Therapy. They recommended that I find an Occupational therapist to do more sensory therapy once a week but not to have anyone do any feeding therapy at all. This is because they have such a specific behavioral method that it is better for me to do it than to have ZZ confused by another method being used. One of the unique things about OCH is that they have the psychologist on board. She teaches, observes, and gives feedback so that the behavior modification component is always foremost in the feeding sessions. At my husband's request I did ask the speech therapist if I could come in once a month to brush up on my technique and learn how to add new foods, textures, etc. That then became the plan for ZZ's future treatment. I also have email and phone access to the psychologist and OT. The goal is to bring ZZ back in 8 to 10 months and have him take part in the inpatient feeding program while weaning him off of his tube feedings. In order to qualify for that he will need to be accepting a variety of foods and textures.
Prayer: I can't end this blog without acknowledging the power of prayer. Many friends and family members prayed diligently for ZZ to succeed in this program. I could feel the sustaining power of those prayers. One friend said her children prayed for him every day at every prayer they gave. I myself prayed fervently that ZZ would do well, that we would be safe, our family at home watched over and that I could make the many drives without accident. While at Eating School I studied Galatians in the New Testament and realized how strongly I could feel the fruits of the Spirit explained in Galatians 5 (love, joy, peace, long-suffering, gentleness, goodness and faith). I thank my Heavenly Father for answering those prayers in our behalf and sending the comforting gift of His Spirit.
Siblings: When I looked into the feeding program at OCH initially, one of my concerns was what to do with ZZ's 4 year-old sister, MM. His 2 brothers are older, one is in college and the other 12 years old so he's in school all day. The social worker who talked to me said that it if I needed to bring her for some of the time, the first 2 weeks were most doable. She just needed to know and she could line up some of the volunteers at OCH to watch her during the times I was observing or talking with the therapists. Between her older brothers, our friends, and Grandma, I was able to work out childcare for MM at home the first 3 weeks. For each of the last 2 weeks my 2 sisters came and helped watch her there in Dallas. They just came with us to Eating School and spent time with her playing in the playroom, the playground or going to the park. She is quite shy but soon warmed up to the other little girl in the program and they would watch DVDs together on her breaks. It worked out quite well and I got a visit from my sisters in the deal!
Caregiver Training: The OCH at Baylor feeding program will train 2 people in feeding as part of the intensive day program. Each of the other families had more than one caregiver take turns with the training. The other little boy's family always had 2 people at Eating School. Usually it was his Dad and his Grandma. They were the primary trainees. His mom came at least once a week and trained also but she already had learned much of the method in their outpatient sessions so it was doable. His grandpa came to lend support a couple of times and other grandma came a couple of times also. The little girl had her mom and her babysitter train. Her dad came a couple of times to observe and her grandma also. I on the other had was the only trainee for ZZ. My husband came once and observed but when I asked if he could try feeding they said since he couldn't be there more, he wouldn't be able to learn that quickly. Looking back I don't know that we could have worked it out any other way with his work schedule, but I do feel the pressure of being the only one doing the feeding now and wish there was a way to have a back up.
Future Treatment: At discharge the other families were put right into the outpatient program where they will come for therapy once a week at OCH while continuing the feeding sessions at home. Since I am so far away it was recommended that I keep up the therapies on my own except for Occupational Therapy. They recommended that I find an Occupational therapist to do more sensory therapy once a week but not to have anyone do any feeding therapy at all. This is because they have such a specific behavioral method that it is better for me to do it than to have ZZ confused by another method being used. One of the unique things about OCH is that they have the psychologist on board. She teaches, observes, and gives feedback so that the behavior modification component is always foremost in the feeding sessions. At my husband's request I did ask the speech therapist if I could come in once a month to brush up on my technique and learn how to add new foods, textures, etc. That then became the plan for ZZ's future treatment. I also have email and phone access to the psychologist and OT. The goal is to bring ZZ back in 8 to 10 months and have him take part in the inpatient feeding program while weaning him off of his tube feedings. In order to qualify for that he will need to be accepting a variety of foods and textures.
Prayer: I can't end this blog without acknowledging the power of prayer. Many friends and family members prayed diligently for ZZ to succeed in this program. I could feel the sustaining power of those prayers. One friend said her children prayed for him every day at every prayer they gave. I myself prayed fervently that ZZ would do well, that we would be safe, our family at home watched over and that I could make the many drives without accident. While at Eating School I studied Galatians in the New Testament and realized how strongly I could feel the fruits of the Spirit explained in Galatians 5 (love, joy, peace, long-suffering, gentleness, goodness and faith). I thank my Heavenly Father for answering those prayers in our behalf and sending the comforting gift of His Spirit.
Friday, April 16, 2010
Last Day: Adding new foods, Learning, and What I Did Not Expect
Sessions:
AM:The morning sessions went very well. ZZ took over 4 oz in each (combined food and drinks.) He had a very short stand-off during the second session where he just hung his head and sighed before taking his bite.
PM: The psychologist decided to throw in an extra food into our session this afternoon to make a "meal" for ZZ. The initial food was a chicken something I had given ZZ before with success. The second food was either green beans or peas. It's hard to tell when they are pureed. I'll call it peas. I was supposed to go back and forth 2 bites each while going through the stages (dip, quarter bite, half bite, then fulls) on each food throwing in the drinks every 3rd bite as usual. So he took the chicken dip and quarter bite and the peas dip. Then he took his drink but no way was he taking anymore of the peas. So my last session of the last day was a "learning" session. ZZ pulled out all his usual refusals while I delightedly exclaimed over the Strawberry Shortcake DVD, LiteBrite and toy laptop between offering the bite in my firm monotone voice. ZZ finally decided that green stuff was most entertaining flying across the room so he worked diligently to hit my hand and spoon as much as possible. I was soon covered with green peas. As an aside the reason this was my last session is that I needed to go straight to the airport after this first afternoon session to catch a flight in order to make it to my grandma's 90th birthday celebration. I was not too happy about wearing pea splattered clothes on the plane. I did tell ZZ he had a timeout for hitting but now that I remember that, I realize I never had him take the time out. I'm so fired and ZZ never took that bite!
After the session the psychologist explained that she hadn't purposely set me up for a stnad-off but just wanted me to learn how to do 2 foods at once since he had been progressing so well. She thought 2 familiar foods would go well. I told her that as far as my feedings went this was ZZs first time eating peas (or not eating peas I mean). Although he had taken them in ST. "Ahh..., she said, "Well then that's how you introduce a new food. You pair it with an accepted one and give 2 bites of the accepted food to each bite of the new, with the usual progression on bite sized and a drink every 3 bites. So...had I been doing this in a "new food" order I would at least have put off the stnad-off by going back to the chicken for another round.
Why I call this a learning session:
As part of many discharge papers, I received a protocol document from the psychologist on it she says,
"It is extremely important that you learn how to follow the protocol when ZZ is eating poorly. From this perspective, "bad meals" - meals during which he refuses for long periods and eats very little - are actually amazingly important. You do not learn anything when ZZ eats well. If he ate well all of the time you would not have sacrificed so much to come here! You learn things when he refuses to eat. So, as strange as it sounds, we need him to refuse often so you have many, many opportunities to learn."
With that in mind I feel well-educated from my experience at ZZ's eating school.
What I did not expect: I did not expect this experience to be just a beginning. One of the other mom's put it best: this is only the first hundred steps on a very long path. I envisioned ZZ happily eating at our dinner table, maybe pureed foods, but there. I expected his tube feeds to be reduced substantially or on the verge of reduction. Instead I will carry on with his feedings 20 minutes 4 times a day interspersed with a speech therapy session and an extra 5th feeding in the evenings. Before this experience if someone had explained to me this way of teaching ZZ to eat, if I was told to hold the spoon through tears, hitting, vomit and even endearing behaviors meant to entice me to praise and take away that spoon, I would have thought and said that it was not possible and not a method I could follow. That is why I needed to experience it. I needed to work through all of the refusals. I needed to see him eat, to know it worked, so that I am willing to carry on with something I would have thought too hard. Sometimes we have to do hard things. Sometimes our children have to do hard things. ZZ has to learn to eat. It's a hard thing. We've only come the first hundred steps.
AM:The morning sessions went very well. ZZ took over 4 oz in each (combined food and drinks.) He had a very short stand-off during the second session where he just hung his head and sighed before taking his bite.
PM: The psychologist decided to throw in an extra food into our session this afternoon to make a "meal" for ZZ. The initial food was a chicken something I had given ZZ before with success. The second food was either green beans or peas. It's hard to tell when they are pureed. I'll call it peas. I was supposed to go back and forth 2 bites each while going through the stages (dip, quarter bite, half bite, then fulls) on each food throwing in the drinks every 3rd bite as usual. So he took the chicken dip and quarter bite and the peas dip. Then he took his drink but no way was he taking anymore of the peas. So my last session of the last day was a "learning" session. ZZ pulled out all his usual refusals while I delightedly exclaimed over the Strawberry Shortcake DVD, LiteBrite and toy laptop between offering the bite in my firm monotone voice. ZZ finally decided that green stuff was most entertaining flying across the room so he worked diligently to hit my hand and spoon as much as possible. I was soon covered with green peas. As an aside the reason this was my last session is that I needed to go straight to the airport after this first afternoon session to catch a flight in order to make it to my grandma's 90th birthday celebration. I was not too happy about wearing pea splattered clothes on the plane. I did tell ZZ he had a timeout for hitting but now that I remember that, I realize I never had him take the time out. I'm so fired and ZZ never took that bite!
After the session the psychologist explained that she hadn't purposely set me up for a stnad-off but just wanted me to learn how to do 2 foods at once since he had been progressing so well. She thought 2 familiar foods would go well. I told her that as far as my feedings went this was ZZs first time eating peas (or not eating peas I mean). Although he had taken them in ST. "Ahh..., she said, "Well then that's how you introduce a new food. You pair it with an accepted one and give 2 bites of the accepted food to each bite of the new, with the usual progression on bite sized and a drink every 3 bites. So...had I been doing this in a "new food" order I would at least have put off the stnad-off by going back to the chicken for another round.
Why I call this a learning session:
As part of many discharge papers, I received a protocol document from the psychologist on it she says,
"It is extremely important that you learn how to follow the protocol when ZZ is eating poorly. From this perspective, "bad meals" - meals during which he refuses for long periods and eats very little - are actually amazingly important. You do not learn anything when ZZ eats well. If he ate well all of the time you would not have sacrificed so much to come here! You learn things when he refuses to eat. So, as strange as it sounds, we need him to refuse often so you have many, many opportunities to learn."
With that in mind I feel well-educated from my experience at ZZ's eating school.
What I did not expect: I did not expect this experience to be just a beginning. One of the other mom's put it best: this is only the first hundred steps on a very long path. I envisioned ZZ happily eating at our dinner table, maybe pureed foods, but there. I expected his tube feeds to be reduced substantially or on the verge of reduction. Instead I will carry on with his feedings 20 minutes 4 times a day interspersed with a speech therapy session and an extra 5th feeding in the evenings. Before this experience if someone had explained to me this way of teaching ZZ to eat, if I was told to hold the spoon through tears, hitting, vomit and even endearing behaviors meant to entice me to praise and take away that spoon, I would have thought and said that it was not possible and not a method I could follow. That is why I needed to experience it. I needed to work through all of the refusals. I needed to see him eat, to know it worked, so that I am willing to carry on with something I would have thought too hard. Sometimes we have to do hard things. Sometimes our children have to do hard things. ZZ has to learn to eat. It's a hard thing. We've only come the first hundred steps.
Thursday, April 15, 2010
Day Twenty-four: 4 oz
Session One: ZZ had taken his new medication before his first feeding during which he vomited. Darn! It's not good to vomit medication given to help vomiting. He only vomited 1 oz (they weigh the vomit, seriously) and kept down 2 oz so hopefully the medicine was in the 2 oz that he kept down!
Sessions Two, Three and Four: ZZ took his bites and drinks amazingly well and with a total intake of 4 oz at each session. His highest ever. We don't know if it's a fluke or the new medicine but I guess we'll see tomorrow. I only saw signs of discomfort twice. Once he gagged slightly but recovered quickly and once he did his head tilt that he does when he's uncomfortable (we think).
By the way (I almost typed weigh, lol), his food is always weighed before his meal with his spoon in it and then weighed again after the meal. Any food vomited or spilled is wiped up with a dry washrag and that is weighed also (they know how much their empty washrags weigh). This amount is subtracted from the total. It is tracked by grams but 30 grams is about an ounce and I can picture ounces better so that's what I report here.
Sessions Two, Three and Four: ZZ took his bites and drinks amazingly well and with a total intake of 4 oz at each session. His highest ever. We don't know if it's a fluke or the new medicine but I guess we'll see tomorrow. I only saw signs of discomfort twice. Once he gagged slightly but recovered quickly and once he did his head tilt that he does when he's uncomfortable (we think).
By the way (I almost typed weigh, lol), his food is always weighed before his meal with his spoon in it and then weighed again after the meal. Any food vomited or spilled is wiped up with a dry washrag and that is weighed also (they know how much their empty washrags weigh). This amount is subtracted from the total. It is tracked by grams but 30 grams is about an ounce and I can picture ounces better so that's what I report here.
Wednesday, April 14, 2010
Day Twenty-three: New Med
New Med: ZZ's GI physician assistance called before I left the hotel this morning, wondering who to contact about the article I had faxed. I told her it was me and she explained that she had talked to 2 GI docs at the clinic and while neither one had used the exact methods in the study they were open to try it in ZZs case. She wondered if we were asking for a GJ placement and meds and I explained that, no it was just the medication we wanted to try. (The children in the study had GJ buttons instead of just the G button like ZZ has.) Anyway, she agreed to call in a prescription when I located a pharmacy close by. The article, from the Journal of Pediatric Gastroenterology and Nutrition 49:233-236, was a study where chronic pain meds were used to help with discomfort while the children were transition to eating by mouth with positive results. The medication that was chosen for ZZ out of the two in the study was Gabapentin. It took a bit of doing for the pharmacist to locate the med in suspension, but finally we did. We'll try it tomorrow.
ZZ had a scope of his esophagus in November to see if his fundoplication had come undone. Fundoplications are done to help stop the stomach acids from coming up into the esophagus and usually make vomiting impossible. Surprisingly the scope showed it to be intact and actually a little tight. So if I understand it right, now the thought is that the tight fundo is causing discomfort particularly while ZZ is eating and the retching, etc. is due to that discomfort.
Sessions: ZZ ate all of his bites and drinks in all 4 sessions today!! He's eating about 2 oz of food and 1 oz of formula during each 20 minute sessions. During his first afternoon session he did vomit. It happened after a drink and before I offered him a bite, not during a refusal, so I just cleaned him up, gave him a moment to settle down and continued feeding him. He still took his bites to the end!
ZZ had a scope of his esophagus in November to see if his fundoplication had come undone. Fundoplications are done to help stop the stomach acids from coming up into the esophagus and usually make vomiting impossible. Surprisingly the scope showed it to be intact and actually a little tight. So if I understand it right, now the thought is that the tight fundo is causing discomfort particularly while ZZ is eating and the retching, etc. is due to that discomfort.
Sessions: ZZ ate all of his bites and drinks in all 4 sessions today!! He's eating about 2 oz of food and 1 oz of formula during each 20 minute sessions. During his first afternoon session he did vomit. It happened after a drink and before I offered him a bite, not during a refusal, so I just cleaned him up, gave him a moment to settle down and continued feeding him. He still took his bites to the end!
Tuesday, April 13, 2010
Day Twenty-two: Reducing Tube Feeding
Reducing tube feedings: I have been wanting to reduce ZZ's tube feedings. That is our long-term goal, afterall. I had been trying to get a conference with the dietician to get her okay, but evidently she was swamped with her inpatients and isn't able to meet until tomorrow morning. I had talked to the ST and the psychologist explaining that he had gained 1 1/2 pounds on my scale and I thought his afternoon sessions would go better without the naptime tube feeding. The psychologist gave me the go ahead. So no tube feeding during nap today!! Hurray!
Sessions: ZZ ate not even one bite during his first session this morning. I talked to the ST about it and explained that he had vomited a little right when he got up this morning. The food was blended pancake which has a little texture to it and she thought that maybe on mornings at home when he's had problems with retching that he be given easier foods like pureed fruit cup or yogurt. He knows by sight and smell the foods being offered so we think he just refused rather than set himself up for a gag. The next morning session went better but still some refusing, but the afternoon went really well.
Sessions: ZZ ate not even one bite during his first session this morning. I talked to the ST about it and explained that he had vomited a little right when he got up this morning. The food was blended pancake which has a little texture to it and she thought that maybe on mornings at home when he's had problems with retching that he be given easier foods like pureed fruit cup or yogurt. He knows by sight and smell the foods being offered so we think he just refused rather than set himself up for a gag. The next morning session went better but still some refusing, but the afternoon went really well.
Friday, April 9, 2010
Day Twenty
Morning Sessions: The first session went great! In the second session ZZ actually ate all of his food and took all of his drinks that were prepared with seconds to spare on the timer. This has only happened 1 or 2 other times so it was impressive! OT went well and in ST he tried pureed chicken and rice and pureed ravioli with no aversions. Good morning.
Afternoon Sessions: ZZ woke up grouchy from his nap. Neither of his afternoon sessions went well. He refused most of each session. I am hoping to meet with the dietitian and see if we could skip his nap time tube feeding. He definitely has gained weight so I'm hoping it will help with his afternoons to start with an empty stomach. Still waiting for the GI doctors to decide if there is something medically we can do about the his volume issues. Waiting...
Afternoon Sessions: ZZ woke up grouchy from his nap. Neither of his afternoon sessions went well. He refused most of each session. I am hoping to meet with the dietitian and see if we could skip his nap time tube feeding. He definitely has gained weight so I'm hoping it will help with his afternoons to start with an empty stomach. Still waiting for the GI doctors to decide if there is something medically we can do about the his volume issues. Waiting...
Thursday, April 8, 2010
Day Eighteenish: Water and SpongeBob
I left my laptop at home this week so I wrote my entries on a drawing pad my sister brought and she started one finger typing them into her phone. It made for a pretty difficult way to record what was going on and eventually we gave up. I'm not sure which day this scrawl is from but think it was on Wednesday so I'm calling it day Eighteenish.
Session One: It was decided to change ZZ's drink to water since he was not taking the formula well and water is something he already takes (sips anyway). Then the speech therapist would work on drinking formula until he again was ready for it to go on the menu. I also mentioned again that he can drink from an open cup. For the feeding session ZZ was playing with the bulldozer and didn't choose or need a movie. He was very into his own story of Fieval and Papa. (He watched An American Tale and Fieval Goes West on the way to and from Dallas last week-end.) He had them fixing, climbing, driving and falling off the bulldozer in highly dramatic fashion. He took his bites and drink with a little bit of playing and goofing off with the drinks. At one point he pulled is shirt to his mouth ad I think he was spitting out his water into it but he had spilled on his shirt earlier and I couldn't tell for sure, sneaky kid! All in all it was a good session. OT went well. During ST he took 3 oz of Pediasure from an open cup!
Session Two: ZZ picked out a toy that you put balls in the top. Knowing that it was below his age level and would probably not sustain his interest long enough, I flipped through the DVD case with ZZ to choose something we hadn't seen over and over. Although I tried to flip past it quickly, he spotted SpongeBob...Nooooo! Needless to say, our session went great! He was completely mezmorized by the DVD and took his bites and drinks in robot form. I tried my best to be playful and engaging but my input wasn't necessary.
Afternoon Sessions: Thankfully SpongeBob was a one time choice. For the afternoon session Fieval and Papa stories carried the day. Water is going down with much less trouble and we are back to progressing with the food intake. The postive of having trouble with drinking the formula is that suddenly taking bites of food isn't so bad, so in some ways it was helpful to introduce something ZZ liked less than eating.
Session One: It was decided to change ZZ's drink to water since he was not taking the formula well and water is something he already takes (sips anyway). Then the speech therapist would work on drinking formula until he again was ready for it to go on the menu. I also mentioned again that he can drink from an open cup. For the feeding session ZZ was playing with the bulldozer and didn't choose or need a movie. He was very into his own story of Fieval and Papa. (He watched An American Tale and Fieval Goes West on the way to and from Dallas last week-end.) He had them fixing, climbing, driving and falling off the bulldozer in highly dramatic fashion. He took his bites and drink with a little bit of playing and goofing off with the drinks. At one point he pulled is shirt to his mouth ad I think he was spitting out his water into it but he had spilled on his shirt earlier and I couldn't tell for sure, sneaky kid! All in all it was a good session. OT went well. During ST he took 3 oz of Pediasure from an open cup!
Session Two: ZZ picked out a toy that you put balls in the top. Knowing that it was below his age level and would probably not sustain his interest long enough, I flipped through the DVD case with ZZ to choose something we hadn't seen over and over. Although I tried to flip past it quickly, he spotted SpongeBob...Nooooo! Needless to say, our session went great! He was completely mezmorized by the DVD and took his bites and drinks in robot form. I tried my best to be playful and engaging but my input wasn't necessary.
Afternoon Sessions: Thankfully SpongeBob was a one time choice. For the afternoon session Fieval and Papa stories carried the day. Water is going down with much less trouble and we are back to progressing with the food intake. The postive of having trouble with drinking the formula is that suddenly taking bites of food isn't so bad, so in some ways it was helpful to introduce something ZZ liked less than eating.
Monday, April 5, 2010
Day Sixteen, Monday
First session: ZZ chose a puzzle to do for his session. Bites went great other that one or two gags (he was eating yogurt) and the first set of drinks went well. We were surprised, as was the therapist, that the formula today was strawberry flavored. There were a few short stand-offs with drinks but the longest was only 3 minutes so not too bad. During one of the stand-offs I was offering several different toys he could play with when he took his bite and he knows the drill so well by now he actually suggested one I hadn't mentioned like he was cluing me in to what would work. I need to speed up on our pace, however, so that his total intake is higher. Now that he's eating more I want to start jotting down the amounts he takes so that I can see the progress and also gauge my feeding rate.
Second session: ZZ didn't want to go into his session but I found a toy we hadn't played with before. It was a talking drum with a screen on top that would show pictures, ABCs, etc., when he hit it. That worked to get him sitting down and started. ZZ ate his bites with no problem (potato soup) but really didn't want his drinks. He would clamp his teeth on the straw and try to pull it out, move his head, push it away, etc. One of his drink stand-offs was 8 minutes long but he did finally come out of it to play with the bulldozer I was playing with. He also watched Strawberry Shortcake and was mildly interested in that. Toward the end he was motivated enough by what was happening in the movie to keep going.
Third session: The third session is shortly after ZZ's nap and it seems like it frequently doesn't go well. We pushed this feeding back by 30 minutes to give him as much time as possible to sleep and digest the feeding he has during his nap. Today's session started out fine until ZZ vomited. I knew I was supposed to ignore him and keep offering bites but it's awfully hard not to at least wipe him up. He was very distressed by the mess on top of the upset stomach and quite frankly, so was I. I kept offering his bite but then he vomited more. At first it was just the food and drink he had taken during the session but now it was his tube feeding coming up. I kept his bite there and he kept refusing. At one point I had to just sit quietly because I was trying not to cry. I just felt like I couldn't show any compassion and I hurt so much for him, covered with vomit and being asked to eat when he just threw up. He refused the rest of the session. The psychologist told me that based on his vomiting here and his history of it despite having a fundoplication (surgery that should keep him from vomiting) that she had recently read a study where patients with problems that seemed to her to ZZ's, were treated with pain medications with success in diminishing vomiting. She asked for ZZ's GI doctor's contact info to pass on the article.
Fourth session: This session went better than last but ZZ still refused his drinks for the most part. His refusals were more being funny and cute, chewing on the straw and singing.
Second session: ZZ didn't want to go into his session but I found a toy we hadn't played with before. It was a talking drum with a screen on top that would show pictures, ABCs, etc., when he hit it. That worked to get him sitting down and started. ZZ ate his bites with no problem (potato soup) but really didn't want his drinks. He would clamp his teeth on the straw and try to pull it out, move his head, push it away, etc. One of his drink stand-offs was 8 minutes long but he did finally come out of it to play with the bulldozer I was playing with. He also watched Strawberry Shortcake and was mildly interested in that. Toward the end he was motivated enough by what was happening in the movie to keep going.
Third session: The third session is shortly after ZZ's nap and it seems like it frequently doesn't go well. We pushed this feeding back by 30 minutes to give him as much time as possible to sleep and digest the feeding he has during his nap. Today's session started out fine until ZZ vomited. I knew I was supposed to ignore him and keep offering bites but it's awfully hard not to at least wipe him up. He was very distressed by the mess on top of the upset stomach and quite frankly, so was I. I kept offering his bite but then he vomited more. At first it was just the food and drink he had taken during the session but now it was his tube feeding coming up. I kept his bite there and he kept refusing. At one point I had to just sit quietly because I was trying not to cry. I just felt like I couldn't show any compassion and I hurt so much for him, covered with vomit and being asked to eat when he just threw up. He refused the rest of the session. The psychologist told me that based on his vomiting here and his history of it despite having a fundoplication (surgery that should keep him from vomiting) that she had recently read a study where patients with problems that seemed to her to ZZ's, were treated with pain medications with success in diminishing vomiting. She asked for ZZ's GI doctor's contact info to pass on the article.
Fourth session: This session went better than last but ZZ still refused his drinks for the most part. His refusals were more being funny and cute, chewing on the straw and singing.
Friday, April 2, 2010
Day Fifteen: Confusion and Non Compliance
Morning Sessions: I wasn't able to log into Blogger for some reason so I am trying to remember our sessions after the weekend. The main thing that I remember happening was confusion. The ST didn't had me offer drinks during our feeding because she wanted to try a different method during speech. So the first session went fine. ZZ took all his bites without problem. When we went in with the OT, she said I was supposed to do 3 dips, 3 quarter spoons, 3 half spoons and then full spoons with 3 sips from the honey bear after each squeezing it into his mouth The day before we had been doing 1 dip, 1 quarter and 1 half per 3 drinks with him having to take his big drinks without squeezing. So I figured there had been some changes and followed the new directions. Well, ZZ took his dips but then on drinks he was playing with the straw, grabbing it and chewing on it. The OT told me to squeeze when it was in his mouth which I did and he'd just let it dribble all over and we'd have to decide what counted as a drink. I was confused... During this time ZZ was happily, almost gleefully, non compliant.
Afternoon Sessions: I expressed this confusion to the psychologist who gave me specific directions for the afternoon sessions: 1 dip, 1 quarter bite, 1 half bite then 3 drinks but squeezing only after he initiated the drink so his lips were closed around the straw, then alternating 3 full bites with 3 drinks. He continued with his refusals during drinking being very silly about it most of the time and refusing in his various other ways the rest of the time. It was a frustrating way to end the week. The psychologist said that any time there is confusion like we had today, the kids think they did something to make things get mixed up and will act up. Consistency in the feeding routine is that important.
Afternoon Sessions: I expressed this confusion to the psychologist who gave me specific directions for the afternoon sessions: 1 dip, 1 quarter bite, 1 half bite then 3 drinks but squeezing only after he initiated the drink so his lips were closed around the straw, then alternating 3 full bites with 3 drinks. He continued with his refusals during drinking being very silly about it most of the time and refusing in his various other ways the rest of the time. It was a frustrating way to end the week. The psychologist said that any time there is confusion like we had today, the kids think they did something to make things get mixed up and will act up. Consistency in the feeding routine is that important.
Thursday, April 1, 2010
Day Fourteen: Monotone, Adding Drinks and Stalling
Monotone: One of the skills you have to develop as a feeder is a monotone voice and being able to go back and forth from monotone to super excited. This has been a challenge for me and so the psychologist went over the reasons for it which I found interesting. One reason (and I had been told this one) was to show distinctly and without question the request from the reward. The voice is a good way to do this. The request should never be reinforcing by itself. Reinforcement should only come with compliance. The second is that in our normal "dealing with children" state we naturally put on our Mommy singsong voice. If you say "take a bite" in a mommy singsong voice, it sounds more like "take a bite, if you want." Try it and you can hear it. If you talk monotone (although it sounds harsh because we are used to mommy singsong with our children) it simply becomes what it is, a prompt, not forcing, not pleading, not coaxing, just simply a statement of on what the correct behavior is and periodically what will happen if they comply also done in the monotone voice. The third reason the psychologist shared with me she said she doesn't necessarily tell all parents. (The above reasons are sufficient.) She said there have been studies done with children who have had a lot of medical procedures, therapies, etc. and they've found that the encouraging voice actually causes the child's stress reaction to increase. I presume this is because they associate it with their medical procedures that aren't so pleasant. So we avoid that as well using the monotone prompt.
First Session: We started out this morning with blended pancake. He was playing with the shape sorter and watching Max and Ruby which he enjoyed at first. He gagged a few times and about halfway through he stopped eating. His refusal went on for 11 minutes. Lots of crying, turning, pushing away from me, and hitting the spoon. I was trying to hold his chair with my legs act fascinated with Max and Ruby, and deflect blows again. ZZ started laughing at his own hitting and so the ST told me to put down the spoon and just play. I started finding the hidden balls in Caribou and he finally started to be interested in that since I was down to only one ball left, so she told me to try the bite again. I turned him toward me and firmly put the spoon up to his mouth told him to take his bite and he could look for the last ball in Caribou. Amazingly he took his bite! We were down to the last 40 seconds after an 11 minute stand-off. So he worked through his behaviors and ended with a success. It was great!
OT went great. She did some upper body and trunk strengthening driving through cones on his stomach with the scooter board, then did more shaving cream play with full participation!
In ST she worked on drinking. ZZ drinks water only. He will taste other drinks and say he likes them but after 1 sip, he always asks for water. I frequently give him a taste of his formula when I pour it into his feeding bag and he willingly takes 1 sip, but no more. He did well for the ST today with his formula so she is adding it to his menu and the rest of the feeding sessions today will include drinking.
Second session - Adding Drinks: ZZ had heard the other little boys parents talk about watching Elmo during his feeding so before we went in we talked and he decided that he wanted to watch Elmo. It helps to have a plan. ZZ also noticed the bunny craft again and decided he wanted to make another bunny to go with Super Bunny, his first creation. So he started out engaged. He was eating potato soup. The bunny didn't hold his attention completely but he did enjoy Elmo so this feeding went pretty well. We added 3 sips of his formula in a row after every 3 bites. I can't remember if it was in the first session or the second but one of the two therapists told me that if he hits the food off the spoon (which was what I was worried about in his hitting) just to refill it and tell him that if he hits his food off, we refill the spoon for his bite. That helped to know what to do so I wasn't so worried about the hitting. He had a few times when he didn't want to drink or would try and take a tiny or even a fake sip. I was told to tell him that he did a good small sip and now he needed to take a big one. There was a short refusal a couple of times during drinks but he worked through it each time.
Third Session: ZZ wanted to watch Diego again and also chose the guitar to play. I think he had potato soup again. Maybe I guessed wrong earlier because they usually don't do two sessions of the same food?? He did well with the bites but we had great long pauses and stalling with the drinks. He wasn't drinking much so the psychologist told me to squeeze the bottle and that gave him more. The drinks are given in a bear bottle (like the honey bottle) with a plastic straw that fits perfectly in the top. This way it can be lightly squeezed as they drink if their sucking skills are lacking. Some of his stalling techniques include coughing, especially into the crook of his arm because we are working on this and he knows I like it. He usually mentions that he covered his cough and looks at me for a "good job." His other stall that he frequently uses is to fake a burp or sometimes conjure up a real one after which he says excuse me and again looks at me for my approval. I have to keep a stone face so usually he tries it several times or in conjunction with the cough. At least I know now that he's got his cough cover and excuse me down. I'll expect it outside of feeding from now on!
Fourth Session: ZZ chose the hidden animal baby puzzle when we went in. I also put on Blue's Clues and kept the instruments handy in case. Partway through the feeding he asked for the toy laptop. I have to say that the toys they have in therapy are pretty fun. The animal puzzle has one piece with an animal home and you pull on a tab to see the baby animal that lives there and then match it with its mommy or daddy. The laptop has various settings but ZZ usually chooses the letters which show the letter he pushes, says it's name, sound and something that starts with the letter which then does something silly on the screen. ZZ likes the silly part. He took his bites really, really well. It was pureed fruit cup. He would have finished but he had a few stand-offs with his drinks and so it took longer. The psychologist had consulted the speech therapist between sessions and she said we couldn't squeeze the bottle. He is capable of sucking enough but is choosing to fake it. So for this session the psychologist put a piece of tape on the bottle to mark the formula so we would know if he was actually taking a drink or not. At first it looked like he was, but looking at the mark we could tell that he was simply sipping a tiny bit and spitting the rest back down the straw as he finished. He's always been very good at faking/mimicing eating and drinking. I don't know how many times I've been told he ate such and such but really he didn't, he just made all the right motions. The psychologist told me to keep prompting him to take a big drink when he did this. Towards the end he was into just chewing on the straw and sort of laughing when I offered him a drink and the psychologist took over for some of the stand-offs when I wasn't getting anywhere. He did eventually take his drinks for her until the last one but there was just a little time left at that point. All in all not a bad session, the drinks are simply a new challenge.
First Session: We started out this morning with blended pancake. He was playing with the shape sorter and watching Max and Ruby which he enjoyed at first. He gagged a few times and about halfway through he stopped eating. His refusal went on for 11 minutes. Lots of crying, turning, pushing away from me, and hitting the spoon. I was trying to hold his chair with my legs act fascinated with Max and Ruby, and deflect blows again. ZZ started laughing at his own hitting and so the ST told me to put down the spoon and just play. I started finding the hidden balls in Caribou and he finally started to be interested in that since I was down to only one ball left, so she told me to try the bite again. I turned him toward me and firmly put the spoon up to his mouth told him to take his bite and he could look for the last ball in Caribou. Amazingly he took his bite! We were down to the last 40 seconds after an 11 minute stand-off. So he worked through his behaviors and ended with a success. It was great!
OT went great. She did some upper body and trunk strengthening driving through cones on his stomach with the scooter board, then did more shaving cream play with full participation!
In ST she worked on drinking. ZZ drinks water only. He will taste other drinks and say he likes them but after 1 sip, he always asks for water. I frequently give him a taste of his formula when I pour it into his feeding bag and he willingly takes 1 sip, but no more. He did well for the ST today with his formula so she is adding it to his menu and the rest of the feeding sessions today will include drinking.
Second session - Adding Drinks: ZZ had heard the other little boys parents talk about watching Elmo during his feeding so before we went in we talked and he decided that he wanted to watch Elmo. It helps to have a plan. ZZ also noticed the bunny craft again and decided he wanted to make another bunny to go with Super Bunny, his first creation. So he started out engaged. He was eating potato soup. The bunny didn't hold his attention completely but he did enjoy Elmo so this feeding went pretty well. We added 3 sips of his formula in a row after every 3 bites. I can't remember if it was in the first session or the second but one of the two therapists told me that if he hits the food off the spoon (which was what I was worried about in his hitting) just to refill it and tell him that if he hits his food off, we refill the spoon for his bite. That helped to know what to do so I wasn't so worried about the hitting. He had a few times when he didn't want to drink or would try and take a tiny or even a fake sip. I was told to tell him that he did a good small sip and now he needed to take a big one. There was a short refusal a couple of times during drinks but he worked through it each time.
Third Session: ZZ wanted to watch Diego again and also chose the guitar to play. I think he had potato soup again. Maybe I guessed wrong earlier because they usually don't do two sessions of the same food?? He did well with the bites but we had great long pauses and stalling with the drinks. He wasn't drinking much so the psychologist told me to squeeze the bottle and that gave him more. The drinks are given in a bear bottle (like the honey bottle) with a plastic straw that fits perfectly in the top. This way it can be lightly squeezed as they drink if their sucking skills are lacking. Some of his stalling techniques include coughing, especially into the crook of his arm because we are working on this and he knows I like it. He usually mentions that he covered his cough and looks at me for a "good job." His other stall that he frequently uses is to fake a burp or sometimes conjure up a real one after which he says excuse me and again looks at me for my approval. I have to keep a stone face so usually he tries it several times or in conjunction with the cough. At least I know now that he's got his cough cover and excuse me down. I'll expect it outside of feeding from now on!
Fourth Session: ZZ chose the hidden animal baby puzzle when we went in. I also put on Blue's Clues and kept the instruments handy in case. Partway through the feeding he asked for the toy laptop. I have to say that the toys they have in therapy are pretty fun. The animal puzzle has one piece with an animal home and you pull on a tab to see the baby animal that lives there and then match it with its mommy or daddy. The laptop has various settings but ZZ usually chooses the letters which show the letter he pushes, says it's name, sound and something that starts with the letter which then does something silly on the screen. ZZ likes the silly part. He took his bites really, really well. It was pureed fruit cup. He would have finished but he had a few stand-offs with his drinks and so it took longer. The psychologist had consulted the speech therapist between sessions and she said we couldn't squeeze the bottle. He is capable of sucking enough but is choosing to fake it. So for this session the psychologist put a piece of tape on the bottle to mark the formula so we would know if he was actually taking a drink or not. At first it looked like he was, but looking at the mark we could tell that he was simply sipping a tiny bit and spitting the rest back down the straw as he finished. He's always been very good at faking/mimicing eating and drinking. I don't know how many times I've been told he ate such and such but really he didn't, he just made all the right motions. The psychologist told me to keep prompting him to take a big drink when he did this. Towards the end he was into just chewing on the straw and sort of laughing when I offered him a drink and the psychologist took over for some of the stand-offs when I wasn't getting anywhere. He did eventually take his drinks for her until the last one but there was just a little time left at that point. All in all not a bad session, the drinks are simply a new challenge.
Wednesday, March 31, 2010
Day Thirteen:
First Feeding Session : First thing this morning ZZ ate during the entire feeding session. He didn't finish his bowl of pureed fruit cup, but that was because I was going too slowly. He was playing with the dinosaurs, the Caribou game and watching Diego at the end. He happily took his bites. Yeah!
Second Feeding Session: He started out playing on a toy laptop which he enjoyed for a while and took his bites of potato soup fine while he was absorbed in that. He did gag a few times but I ignored that and he kept it all down. Partway through he became bored with the laptop and we tried everything to interest him, including the craft bunnies again, but even though he wanted to play more he wouldn't take his bite in order to do so. It's interesting to watch him think about it. He definitely weighs his decision of whether to eat or not especially after he has gagged a few times. His refusal including saying no and hitting my hand and crying. It was hard to hold the bite there, deflect his blows, try different toys, be engaging to catch his interest and remember to be monotone on my prompt. It looks easier looking in than being the feeder.
Therapies: Both OT and ST went well. In OT he played with shaving cream without help, no problem. There was a little tussle at the end of OT because SpongeBob was missing his pants in one of the puzzles ZZ saw. It was a puzzle left by one of the inpatients to finish so he wasn't supposed to touch it. That triggered a bit of a tantrum. Missing pieces tend to do that. He wants the world in order! He tried pureed carrots and one other food I can't remember in ST which he accepted!
Third Session: We had an observer from the Baylor clinic at Grapevine for our 2 feedings in the afternoon. Let's just say she got to see both sides of ZZ. ZZ had just gotten up from his nap, so he was a little groggy and not really excited to be eating again. He wanted his cars he had brought from home but he can't have them in the feeding session so we found a monster truck on the shelf for him to play with. He refused even the first dry spoon and never stopped for the full 25 minutes. It was very tiring for me. I would watch the Diego video, play with the hidden animal puzzle, and play with Caribou to no avail. The psychologist asked me what I thought went wrong and I told her that he wasn't engaged yet before we started bites and I think that might have helped. She agreed.
Fourth Session: ZZ started out not wanting to come in to the session and wouldn't pick a toy or video. I was worried that we would have a repeat of last time, but I pulled out some musical instruments and started hitting it "wrong." ZZ couldn't resist showing me the right way and the psychologist said he had played with them before watching a musical Blue's Clues. So we put that on and he started getting into it. This kept him going for the whole session and he took every bite I offered. We didn't get through all the food so I thought my pace was too slow, but the psychologist said it was good and that we were still working up to bigger bites and that his volume would increase as he is able to take them.
Second Feeding Session: He started out playing on a toy laptop which he enjoyed for a while and took his bites of potato soup fine while he was absorbed in that. He did gag a few times but I ignored that and he kept it all down. Partway through he became bored with the laptop and we tried everything to interest him, including the craft bunnies again, but even though he wanted to play more he wouldn't take his bite in order to do so. It's interesting to watch him think about it. He definitely weighs his decision of whether to eat or not especially after he has gagged a few times. His refusal including saying no and hitting my hand and crying. It was hard to hold the bite there, deflect his blows, try different toys, be engaging to catch his interest and remember to be monotone on my prompt. It looks easier looking in than being the feeder.
Therapies: Both OT and ST went well. In OT he played with shaving cream without help, no problem. There was a little tussle at the end of OT because SpongeBob was missing his pants in one of the puzzles ZZ saw. It was a puzzle left by one of the inpatients to finish so he wasn't supposed to touch it. That triggered a bit of a tantrum. Missing pieces tend to do that. He wants the world in order! He tried pureed carrots and one other food I can't remember in ST which he accepted!
Third Session: We had an observer from the Baylor clinic at Grapevine for our 2 feedings in the afternoon. Let's just say she got to see both sides of ZZ. ZZ had just gotten up from his nap, so he was a little groggy and not really excited to be eating again. He wanted his cars he had brought from home but he can't have them in the feeding session so we found a monster truck on the shelf for him to play with. He refused even the first dry spoon and never stopped for the full 25 minutes. It was very tiring for me. I would watch the Diego video, play with the hidden animal puzzle, and play with Caribou to no avail. The psychologist asked me what I thought went wrong and I told her that he wasn't engaged yet before we started bites and I think that might have helped. She agreed.
Fourth Session: ZZ started out not wanting to come in to the session and wouldn't pick a toy or video. I was worried that we would have a repeat of last time, but I pulled out some musical instruments and started hitting it "wrong." ZZ couldn't resist showing me the right way and the psychologist said he had played with them before watching a musical Blue's Clues. So we put that on and he started getting into it. This kept him going for the whole session and he took every bite I offered. We didn't get through all the food so I thought my pace was too slow, but the psychologist said it was good and that we were still working up to bigger bites and that his volume would increase as he is able to take them.
Tuesday, March 30, 2010
DayTwelve: Feeding, Snot and Vomit, Oh Joy
First session: We were watching Diego and playing with toys. ZZ took his dry spoons just fine, but as soon as I dipped it in the pureed pancakes and milk, he took one and refused the next. So I went into monotone robot ignoring mode. I was able to do it for the crying and screaming which came first because I was expecting that from watching the therapists. Next came hitting and the therapist told me I could block the hits but continue to ignore other than that. But what came next caught me by surprise. He started blowing snot out his nose. I looked at the therapist and asked if this was a behavior I was supposed to ignore (of course, I wanted to wipe his nose). She said, yes, he's just trying to engage you. Well, he knows what he's doing. So snot blowing became the behavior of choice for the rest of the session. I did my best to ignore but honestly he was so into it that it became funny and I know he could tell that I was trying not to laugh, which then encouraged him even more. Afterward the therapist went over how I did. I need to keep a more monotone voice and then get really into watching the video or playing with the toy myself so that he wants to come out of refusal mode. (I hadn't realized I was suppose to do that while he was refusing.)
Second session: There were some craft supplies in the room which he found right away so this session went great. He was very motivated by making a bunny with pom-poms, craft foam, goggly eyes and glue - so fun he willingly took his bites. In fact he told me that we was taking his bites partway through, letting me know that he wasn't going to miss out on this one. Other than just awkwardness in pulling away the craft supplies and getting the soup to his mouth all at once, I did okay. I enjoyed the craft myself so didn't have to fake it! She said I still need to work on the monotone voice. I didn't realize I was supposed to use it every time he was supposed to take a bite not just after he started refusing.
Third Session: For the first session in the afternoon ZZ wanted to play Caribou. He wasn't too interested in the cards but wanted to open all the doors with the key and find the balls so he could open the treasure chest. He was having a great time and taking his dry spoons, dips and bites, until he gagged and vomited the bite, then vomited some more, then vomited some of his tube feeding from nap time. I'm pretty stressed at this point and ask the therapist if I'm supposed to ignore this and yes, of course, I am. This was definitely the hardest yet. I'd rather deal with snot blowing. I kept prompting him with bites and ignored the mess until he finally took one, kept it down and we cleaned up. He didn't last much longer after that and refused until the end, but luckily it was toward the end of the session.
Fourth Session: No vomit this session. He did start refusing with just crying toward the end and I couldn't interest him in anything after that, but he ate at least half of his bowl (1oz) of potato soup.
Monday, March 29, 2010
Day Eleven: Attending Sessions
Today was the first day for parents to attend feeding sessions. I've done 2 so far. In the first one ZZ did great. He ate the whole time while watching Diego and talking with me. He ate 2 oz of pureed fruit cup. During the second session we were playing with various toys. He made it through about half of his potato soup (1 oz) and then he gagged and spit it out. (He had gagged a couple of times earlier but swallowed anyway.) He refused to take anymore bites so I had to back away and look away, while he screamed for his mommy. Oh my! I tried to play with some toys so he'd want to play with me again and take his bite in order to do so, but he just kept crying. The therapist was still really happy with how the session went. Last Friday was, after all, the first session she ever had with him where he made it all the way through eating the whole time. Remembering the progress made is important. He did great in OT. He finger painted a Blue's Clues paw print dipping his finger on his own and in ST he tried 3 new foods, pureed mac and cheese, yogurt (yeah!), and Cream-of-Wheat. He did well except for the Cream-of-Wheat so she will keep working with him on that one but add the other 2 to his menu for feeding sessions.
Dallas Traffic: The perpetually lost (like me) should not be allowed to drive with people who only drive 70 mph and above. That's my dilema. I am at least remembering by now which lane to get into and that helps as long as I keep to the beaten track. If I try to see new places and do new things, I am back to being a hazard. ZZ's new favorite phrase is, "That was close!!" (I talk to myself when I drive.) I keep reminding myself that I have driven in Tokyo and praying that the same angels that surrounded my vehicle there will help me here as well. In retrospect a GPS would have been a good purchase before coming here.
Dallas Traffic: The perpetually lost (like me) should not be allowed to drive with people who only drive 70 mph and above. That's my dilema. I am at least remembering by now which lane to get into and that helps as long as I keep to the beaten track. If I try to see new places and do new things, I am back to being a hazard. ZZ's new favorite phrase is, "That was close!!" (I talk to myself when I drive.) I keep reminding myself that I have driven in Tokyo and praying that the same angels that surrounded my vehicle there will help me here as well. In retrospect a GPS would have been a good purchase before coming here.
Friday, March 26, 2010
Day Ten: Breakthrough!
Therapies: I was worried that yesterdays eating was a fluke, but ZZ has done great this morning. He took his bites all the way through both feeding sessions (pureed fruit cup) and even ate 2 new foods during speech (potato soup and chicken dumplings, pureed). They are finally giving me the results in how much he ate (1 0z in each session) instead of how long he refused or how many spoons he took! He also finger painted his turkey! She said he started to meltdown but worked through it and he was very proud to show me. If I didn't want to go home so badly, I'd be wishing it wasn't Friday so we could keep going with this success. On Monday I get to go into the room to observe. My job is to play with him as long as he is eating and ignore him when he's not, so I'm to be the motivation. We are both very happy today! Update: ZZ's afternoon feedings went perfectly also! He ate the entire session for both feedings. 2 oz of tomato soup and 2 oz of pureed fruit cup.
Thursday, March 25, 2010
Day Nine: Lodging, Nap Time
Lodging: There is a Ronald McDonald House just a couple of blocks from OCH and originally I had planned to stay there. The social worker here is the one who makes those arrangements and the day before I left I did get a call telling me they had room for us. I was able to tell them that they could pass that on to someone else because at the last minute our insurance came through for us and put us on "orders" meaning I could stay anywhere at the government rate and they would cover it as well as meals.
I call our lodging the hotel in the hood, where the poor get poorer because they have to shop at convenience stores and gas stations to buy groceries. I had to drive from the hood to THE HOOD (big beautiful homes) to find a real grocery store. There must be one closer but I couldn't find it. Despite the neighborhood and lack of close shopping/restaurants, this hotel has really worked out for us. We have a kitchen which just makes cleaning out his tube feeding bags easier, plus I can prepare my own food here. It also has a complimentary breakfast buffet with real food (not just donuts) AND a nightly "manager's social" where there is a complimentary light dinner out on the buffet. I also recently found out (but haven't yet used it) that they have complimentary grocery shopping. You just leave a list at the desk in the morning. I guess they are well aware of the limitations of their location and try to make up for it. The complimentary meals work great for us because the last thing I want to do with ZZ is sit at a restaurant waiting for food since he doesn't eat. This way I quickly eat without causing him too much duress. We did meet the rest of the family at the Rain Forest Cafe at the end of our week last week, but there's plenty of entertainment there for ZZ not just eating. The hotel also has complimentary internet (it is wired but in the room) coin laundry, a pool, a work-out room, and a basketball court. So really I can't complain!
Nap time: ZZ takes an afternoon nap with a feeding everyday. The program director scheduled 2 hours for him to take his nap and starting yesterday they increased the break by 30 minutes since I was having to wake him and he was always tired for his first afternoon session. There is a nap room here so we don't have to go back to the hotel which is nice.
Today's therapies: This morning started out with refusing as soon as the spoon was dipped in food (dry spoons were fine - but he pays attention to when the food goes on). The ST went better. They decided (and I agree) that ZZ is more motivated by mentally stimulating puzzles and games then simple toys and videos. He was finger painting a turkey for OT but only would do I feather so she'll work on it more later. (His sensory issues are with wet substances like fingerpaint). His OT feeding went well (he was playing with number, shape and letter cards) for dry spoons, dips and even a few half spoons (the best he's done for the OT), but after a few half spoons he started refusing and cried the rest of the session. The first afternoon feeding went amazingly well. He went in crying but once she got him to stop he took his bites the entire time. He ate 2 oz. of tomato soup! I have to admit he looked absolutely miserable the whole time and we both thought at the end he was going to lose the whole thing, but he kept going and kept it down. The last feeding was fruit cup puree again and he made it through about half the session and then started refusing. He was really mad when she kept the spoon right up next to his face because a few times in his head turning and putting up his hands, he got some on his face and hands. That just drives him crazy (again with the sensory issues) but she told him she would only wipe him off after he took a bite which he never did. As soon as the timer rings to end the session ZZ immediately stops crying and carrying on, which is a good indication that he's mad, not distressed. So, finally some food went in today!
I call our lodging the hotel in the hood, where the poor get poorer because they have to shop at convenience stores and gas stations to buy groceries. I had to drive from the hood to THE HOOD (big beautiful homes) to find a real grocery store. There must be one closer but I couldn't find it. Despite the neighborhood and lack of close shopping/restaurants, this hotel has really worked out for us. We have a kitchen which just makes cleaning out his tube feeding bags easier, plus I can prepare my own food here. It also has a complimentary breakfast buffet with real food (not just donuts) AND a nightly "manager's social" where there is a complimentary light dinner out on the buffet. I also recently found out (but haven't yet used it) that they have complimentary grocery shopping. You just leave a list at the desk in the morning. I guess they are well aware of the limitations of their location and try to make up for it. The complimentary meals work great for us because the last thing I want to do with ZZ is sit at a restaurant waiting for food since he doesn't eat. This way I quickly eat without causing him too much duress. We did meet the rest of the family at the Rain Forest Cafe at the end of our week last week, but there's plenty of entertainment there for ZZ not just eating. The hotel also has complimentary internet (it is wired but in the room) coin laundry, a pool, a work-out room, and a basketball court. So really I can't complain!
Nap time: ZZ takes an afternoon nap with a feeding everyday. The program director scheduled 2 hours for him to take his nap and starting yesterday they increased the break by 30 minutes since I was having to wake him and he was always tired for his first afternoon session. There is a nap room here so we don't have to go back to the hotel which is nice.
Today's therapies: This morning started out with refusing as soon as the spoon was dipped in food (dry spoons were fine - but he pays attention to when the food goes on). The ST went better. They decided (and I agree) that ZZ is more motivated by mentally stimulating puzzles and games then simple toys and videos. He was finger painting a turkey for OT but only would do I feather so she'll work on it more later. (His sensory issues are with wet substances like fingerpaint). His OT feeding went well (he was playing with number, shape and letter cards) for dry spoons, dips and even a few half spoons (the best he's done for the OT), but after a few half spoons he started refusing and cried the rest of the session. The first afternoon feeding went amazingly well. He went in crying but once she got him to stop he took his bites the entire time. He ate 2 oz. of tomato soup! I have to admit he looked absolutely miserable the whole time and we both thought at the end he was going to lose the whole thing, but he kept going and kept it down. The last feeding was fruit cup puree again and he made it through about half the session and then started refusing. He was really mad when she kept the spoon right up next to his face because a few times in his head turning and putting up his hands, he got some on his face and hands. That just drives him crazy (again with the sensory issues) but she told him she would only wipe him off after he took a bite which he never did. As soon as the timer rings to end the session ZZ immediately stops crying and carrying on, which is a good indication that he's mad, not distressed. So, finally some food went in today!
Wednesday, March 24, 2010
Day Eight: Team Meeting
Today was our first team meeting where the ST, OT, psychologist and dietitian meet altogether with me. I asked a few questions that I pretty much knew the answers to but needed to be sure that it wasn't just my assumptions but their explanation.
The first was why I can't give ZZ food outside the program this week. Last night while I was eating he wanted a bread stick. Well, I can't refuse him food! He just wanted to play with it and be part of the crowd so I gave it to him. Right now they said it's not going to matter as much, but especially as I start doing the feedings in the program, they do not want him to confuse what is expected of him here with what is expected elsewhere with relation to food and eating. They also don't want him to be full from "grazing" and not participate because of that. Of course, they acknowledged that this not a worry with ZZ since he just licks and nibbles. I'm interested to see if this rule applies to the week-end this week. Last week-end, we kept things as normal and he actually did a lot of nibbling and seemed to enjoy himself throughly at mealtimes.
I also asked why we are going back to feeding him rather than having him handle the spoon as well as why we are using pureed food over what would be age appropriate. Like I said I think I know the answer, but I wanted to be sure. Beyond the obvious that he wouldn't give himself bites of things he doesn't want, we talked about where he is at in his feeding "life." Since he hasn't gone through the stages of eating, we have to go back and take him through them. He is already able to drink from a cup, sippy and straw so we don't go back to sucking on a bottle, he hasn't however taken pureed food from a spoon so that's where we start. Also the first day the ST mentioned that pureed food is higher in calories per spoonful (because it's denser) and so it's good to be using it when we start to wean from tube feeds. They do use pureed "real" food and soups rather than baby food. I like that because I think he'll transition easier and I think its easier and cheaper to just puree what we are having for dinner anyway. This week they have tried pureed fruit cup because he took the juice from it last week with no problem and tomato soup because he eats spaghetti sauce and salsa easily at home.
I also asked about how we know if ZZ has a physiological problem with swallowing versus all psychological and if they would react differently. The psychologist said that time is the main way they tell beyond signs of aspiration, etc. If his swallowing issues are habitual, he'll get over them quickly with their methods. If they are physiological he will continue to have difficulties and it will be a slower process. I mentioned that the Dr said his fundoplication is tight and that's why I asked. She said he'll have to be taking in a lot more volume before we would know if that's causing a problem. Everyone assured me however that they are always watching for indications of swallowing problems and that they hadn't seen any with ZZ yet.
The psychologist feels like based on the team meeting and her own observation that ZZ has some hypo sensory issues (I think that's what she said). In other words he needs more stimulation to help him be comfortable eating. She said this gives her some direction in determining his protocol. She said they can't make a lot of changes at once because then they won't know which is helping and today they had made a change so she would take things a step at a time. I asked her what the change was today and she said it was to take away the toy/video before each bite and give it back as soon as he took a bite. I noticed this during his OT feeding. This is to help him understand exactly what will happen when he takes a bite rather than perhaps just think that they are trying to make his life miserable by asking him to eat and taking away all the fun.
Therapies:
ZZ's morning feedings were fine with the dry spoon and then total refusals (crying for mom, moving his head, hand in front of mouth, etc.) for the rest of the session. Even in ST when she put food on the nuk brush he spit it out and refused. For the first afternoon session he started crying from the beginning even on dry spoons although I noticed he really wanted the puzzle she had out for him. After the session we went outside and he mentioned to me that he wasn't going to take his bite. I told him if he did he would get to watch Dora and play with that cool puzzle. He said he didn't want to see Dora and he didn't want that puzzle, so I asked him if there was a really fun toy he wanted to play with. This actually pulled him out of his grump and made him think. He said, "The rescue pack!" I told him that if he asked Miss S for the rescue pack, she would let him play with it when he took his bites. I don't know if our conversation had anything to do with it but we finally had a break-through during his afternoon feeding. He took his bites, played with the cool puzzle. At one point he started refusing and she asked if he what he wanted to play with. He remembered the rescue pack and was willing to take his bite to get it. Toward the end of the session he did spit out a bite and when she took everything away and told him he had to try again, he lost it and refused the rest of the time. But overall that is the most progress I have seen so far and the psychologist said she could tell he for sure understands now what he'll get if he eats his bites.
The first was why I can't give ZZ food outside the program this week. Last night while I was eating he wanted a bread stick. Well, I can't refuse him food! He just wanted to play with it and be part of the crowd so I gave it to him. Right now they said it's not going to matter as much, but especially as I start doing the feedings in the program, they do not want him to confuse what is expected of him here with what is expected elsewhere with relation to food and eating. They also don't want him to be full from "grazing" and not participate because of that. Of course, they acknowledged that this not a worry with ZZ since he just licks and nibbles. I'm interested to see if this rule applies to the week-end this week. Last week-end, we kept things as normal and he actually did a lot of nibbling and seemed to enjoy himself throughly at mealtimes.
I also asked why we are going back to feeding him rather than having him handle the spoon as well as why we are using pureed food over what would be age appropriate. Like I said I think I know the answer, but I wanted to be sure. Beyond the obvious that he wouldn't give himself bites of things he doesn't want, we talked about where he is at in his feeding "life." Since he hasn't gone through the stages of eating, we have to go back and take him through them. He is already able to drink from a cup, sippy and straw so we don't go back to sucking on a bottle, he hasn't however taken pureed food from a spoon so that's where we start. Also the first day the ST mentioned that pureed food is higher in calories per spoonful (because it's denser) and so it's good to be using it when we start to wean from tube feeds. They do use pureed "real" food and soups rather than baby food. I like that because I think he'll transition easier and I think its easier and cheaper to just puree what we are having for dinner anyway. This week they have tried pureed fruit cup because he took the juice from it last week with no problem and tomato soup because he eats spaghetti sauce and salsa easily at home.
I also asked about how we know if ZZ has a physiological problem with swallowing versus all psychological and if they would react differently. The psychologist said that time is the main way they tell beyond signs of aspiration, etc. If his swallowing issues are habitual, he'll get over them quickly with their methods. If they are physiological he will continue to have difficulties and it will be a slower process. I mentioned that the Dr said his fundoplication is tight and that's why I asked. She said he'll have to be taking in a lot more volume before we would know if that's causing a problem. Everyone assured me however that they are always watching for indications of swallowing problems and that they hadn't seen any with ZZ yet.
The psychologist feels like based on the team meeting and her own observation that ZZ has some hypo sensory issues (I think that's what she said). In other words he needs more stimulation to help him be comfortable eating. She said this gives her some direction in determining his protocol. She said they can't make a lot of changes at once because then they won't know which is helping and today they had made a change so she would take things a step at a time. I asked her what the change was today and she said it was to take away the toy/video before each bite and give it back as soon as he took a bite. I noticed this during his OT feeding. This is to help him understand exactly what will happen when he takes a bite rather than perhaps just think that they are trying to make his life miserable by asking him to eat and taking away all the fun.
Therapies:
ZZ's morning feedings were fine with the dry spoon and then total refusals (crying for mom, moving his head, hand in front of mouth, etc.) for the rest of the session. Even in ST when she put food on the nuk brush he spit it out and refused. For the first afternoon session he started crying from the beginning even on dry spoons although I noticed he really wanted the puzzle she had out for him. After the session we went outside and he mentioned to me that he wasn't going to take his bite. I told him if he did he would get to watch Dora and play with that cool puzzle. He said he didn't want to see Dora and he didn't want that puzzle, so I asked him if there was a really fun toy he wanted to play with. This actually pulled him out of his grump and made him think. He said, "The rescue pack!" I told him that if he asked Miss S for the rescue pack, she would let him play with it when he took his bites. I don't know if our conversation had anything to do with it but we finally had a break-through during his afternoon feeding. He took his bites, played with the cool puzzle. At one point he started refusing and she asked if he what he wanted to play with. He remembered the rescue pack and was willing to take his bite to get it. Toward the end of the session he did spit out a bite and when she took everything away and told him he had to try again, he lost it and refused the rest of the time. But overall that is the most progress I have seen so far and the psychologist said she could tell he for sure understands now what he'll get if he eats his bites.
Tuesday, March 23, 2010
Day Seven: Staff, Observing, Therapies
Staff: One of the hardest parts about last week was that we started this program during Spring Break. That meant that the psychologist was gone all week, the program director was off a couple of days, the speech therapist was off a couple of days and the OT had a class one of the days on top of trying to cover feeding sessions for others. Each session was covered by trained individuals, but it was very confusing and disheartening for the parents. I think the kids were less affected but since it was the first week anyway, there is no way to tell if they would have done better with consistency or not. Anyway, today finally everyone is back and I'm feeling very good about the staff here. I had my first observation with the psychologist this morning. This was very helpful to me! I really like the ST and OT also. I'm more confident in the program now that they are all here and consistent. I would have preferred (and the other parents concur) that we would not have had the staff changes on the first week and that the program just be delayed a week instead. I suppose that's an issue they would have to address on the calendar year planning not just session to session, but it's a given that spring break might be a time to avoid in the future.
Observing: We were watching a feeding being done by the speech therapist through the observation window (mirror on the feeding room side) while the psychologist explained what was happening. At first ZZ was watching a video and taking bites (dips I think) of fruit cup puree. After a few he started refusing, crying, asking for mom, etc. The video went off and she kept prompting him to take his bite. After a while she pulled a toy from the shelf and started playing with it herself. He would stop crying obviously interested in the toy, but as soon as she put the spoon back up and told him he could play when he took his bite, he started into the crying, etc. again. It felt like a very long stand-off, but I think she said it was 12 minutes. There's never actually forcing and when the timer goes off the feeding is over. So far with ZZ once he starts refusing he has continued to do so through the rest of his sessions. I didn't observe anymore today. Now that the psychologist is back, she said she would like us only to observe when she is with us.
Therapies: OT was testing to day, I think she said it was the Peabody Basic Skills test, I remember this one from my days as a Special Education teacher. ST went well except the last 30 seconds. She said she did the oral stimulation with the nuk brush, added pureed fruit to the brush, did dry spoons, did water spoons and then went to pureed fruit dips. ZZ did great until the end and even took 10 bites of the pureed fruit before spitting it out. When he spits bites out they put them back on the spoon and present it again because this is not an acceptable habit. Then he started refusing. For his OT feeding I went past the room and glance in noticing that he didn't have his shirt on. Hmmm... that didn't seem like a good sign. Well, yes, he had a 17 minute stand-off because here again she was having him take a bite he had spit out. Besides crying and desperately asking for me, his refusal habits including playing with his shoes, so off they went and hiding in his shirt (the reason it was off). Anyway, he came happily running to me at the end. We'll see how this afternoon goes.
Update on the afternoon: The afternoon feedings are actually done by the psychologist and I asked if I could observe. She said I could. In the first feeding the refusals with all of the above reactions started from the beginning. She was feeding him tomato soup, but she told me later that she started with a dry spoon. After some time I could no longer watch and went down the hall. When I went back he had stopped crying and was watching the video and taking his bites. I kicked myself for leaving and asked her later what she had done to get him started. She said it was pretty small, but he opened his mouth for her enough that she put the spoon in and called it a successful bite. That way she could reward him and get the ball rolling. It didn't last long though. After a few successes with the soup, he spit it out and refused the rest of the session. For the last session I heard him crying right away, and I gathered our things so we could make a quick exit when it was done. I observed the last agonizing half.
Observing: We were watching a feeding being done by the speech therapist through the observation window (mirror on the feeding room side) while the psychologist explained what was happening. At first ZZ was watching a video and taking bites (dips I think) of fruit cup puree. After a few he started refusing, crying, asking for mom, etc. The video went off and she kept prompting him to take his bite. After a while she pulled a toy from the shelf and started playing with it herself. He would stop crying obviously interested in the toy, but as soon as she put the spoon back up and told him he could play when he took his bite, he started into the crying, etc. again. It felt like a very long stand-off, but I think she said it was 12 minutes. There's never actually forcing and when the timer goes off the feeding is over. So far with ZZ once he starts refusing he has continued to do so through the rest of his sessions. I didn't observe anymore today. Now that the psychologist is back, she said she would like us only to observe when she is with us.
Therapies: OT was testing to day, I think she said it was the Peabody Basic Skills test, I remember this one from my days as a Special Education teacher. ST went well except the last 30 seconds. She said she did the oral stimulation with the nuk brush, added pureed fruit to the brush, did dry spoons, did water spoons and then went to pureed fruit dips. ZZ did great until the end and even took 10 bites of the pureed fruit before spitting it out. When he spits bites out they put them back on the spoon and present it again because this is not an acceptable habit. Then he started refusing. For his OT feeding I went past the room and glance in noticing that he didn't have his shirt on. Hmmm... that didn't seem like a good sign. Well, yes, he had a 17 minute stand-off because here again she was having him take a bite he had spit out. Besides crying and desperately asking for me, his refusal habits including playing with his shoes, so off they went and hiding in his shirt (the reason it was off). Anyway, he came happily running to me at the end. We'll see how this afternoon goes.
Update on the afternoon: The afternoon feedings are actually done by the psychologist and I asked if I could observe. She said I could. In the first feeding the refusals with all of the above reactions started from the beginning. She was feeding him tomato soup, but she told me later that she started with a dry spoon. After some time I could no longer watch and went down the hall. When I went back he had stopped crying and was watching the video and taking his bites. I kicked myself for leaving and asked her later what she had done to get him started. She said it was pretty small, but he opened his mouth for her enough that she put the spoon in and called it a successful bite. That way she could reward him and get the ball rolling. It didn't last long though. After a few successes with the soup, he spit it out and refused the rest of the session. For the last session I heard him crying right away, and I gathered our things so we could make a quick exit when it was done. I observed the last agonizing half.
Friday, March 19, 2010
Day Five: Schedule
Schedule: ZZ is the 3rd of the 3 patients in this program, meaning he starts and finishes the last. This works out really well for us since we are the only family in the program who are from far enough away to stay in a hotel. We like the extra time in the morning and aren't rushing home to anything. He starts with a 25 minute feeding by the speech therapist. She is the one on the team who calls the shots as far as how the other feeding sessions will go (with input from the team). Then he has Occupational therapy which usually involves some sort of physical activity which he loves plus some sensory play which causes him a few issues. After OT he has speech therapy which involves oral motor stimulation. Then he has a feeding done by the OT so she can give feedback on sensory issues. By now it's noon so I put him down for a nap and tube feeding. His afternoon consists of 2 feedings by the psychologist who works on his refusal behaviors.
Occupational Therapy:
Today he did a wheelbarrow crawl to pick up toy people and put them in the bus. I watched that part and although he got tired, he was having a lot of fun. I asked the OT and she explained that this is a muscle strengthening exercise. Typically kids who don't eat have lower muscle tone like in the neck and face because, well, they don't chew. Eating is exercise - I knew it!! Then they worked on washing the bus with shaving cream. He did a few touches and had just a few refusals, but here again it was touches not diving in, so there his sensory issues come in to play.
We ended the week with success at eating from a dry spoon, a water filled spoon and a juice filled spoon, ...this seems a little slow to me, but the therapists all say he's doing well, so I'll defer to their judgement.
Occupational Therapy:
Today he did a wheelbarrow crawl to pick up toy people and put them in the bus. I watched that part and although he got tired, he was having a lot of fun. I asked the OT and she explained that this is a muscle strengthening exercise. Typically kids who don't eat have lower muscle tone like in the neck and face because, well, they don't chew. Eating is exercise - I knew it!! Then they worked on washing the bus with shaving cream. He did a few touches and had just a few refusals, but here again it was touches not diving in, so there his sensory issues come in to play.
We ended the week with success at eating from a dry spoon, a water filled spoon and a juice filled spoon, ...this seems a little slow to me, but the therapists all say he's doing well, so I'll defer to their judgement.
Day Two: Rocky start
Crazy AM: I woke up with the pleasant realization that I hadn't heard ZZ throwing up during the night. When I went to flush his tube I thought I must have been mistaken because his bed had quite a puddle in it. It concerned me that there was a tinge of blood in it and sure enough when I looked at the end of his tube there was his G-button still attached. It had come out in the night and fed his bed instead of him (thus no vomiting). We have the type of button (Mic-Kee) that I can replace myself and I had brought an extra but when I opened the package there was not any lubricant (his old G-button used to have one). This was my first time to replace it so I had to keep telling myself to calm down. I tried just wetting it with water but couldn't get it in. At this point I was worried also about the time it probably had been out. His feedings end around 5 am and obviously it had come out before it finished. I called the hotel lobby explaining my problem and to see if they sold any KY jelly in their little store They didn't but said they would print directions for the nearest pharmacy and have them at the desk. I was considering going to the closest ER as well, but decided I would call his pediatric surgeons office first. My favorite thing about his pediatric surgeon's office (Cooks Children) is that unlike any of his other Dr's offices, they answer their phone!!! The nurse told me the Dr's were all out that morning but that if I couldn't get the button in after getting the lubricant that I could come over and they would page the PA to come and dilate his opening. She said it starts closing off in 2 to 3 hours. Well, I tried again with the lubricant and couldn't get it so off to Fort Worth we went. In the meantime I left a message on M's phone at the feeding program that we wouldn't be in that morning. They were able to dilate the opening there at the pediatric surgeon's office and place ZZ's new button. All back together we made our way back across Dallas and got to OCH around 12:30. One of the other little boys in the program had fallen that morning and had a big goose egg on his forehead. We were off to a rocky start.
Therapy Sessions: Today all ZZ did was the 2 feeding sessions with the psychologist in the afternoon. The first feeding was water and went well although he was tired. I put him down for a nap in between the 2 sessions and he woke up very cranky. The second session didn't go well. She fed him goldfish from the spoon. He does like goldfish but usually just nibbles them and lets them dissolve in his mouth. She was having him chew them from the spoon and move along much faster than he normally does. He started putting his head on his tray and going to sleep. Yes, he had a long day but this was avoidance as well. She finally took off the tray and unfortunately he cried the rest of the time.
Comments: The program is a very structured behavior modification program. I was interested in watching how his afternoon feeding sessions went. As long as he was taking a "bite" when prompted, he could play with toys and the therapist was really animated and played along with him. When he refused or slowed down she kept a straight face and took away the toy. Periodically she would play with the toy a little to interest him and if he cooperated she went right back to her playful self. I can't quite imagine how this will work at home, but that I suppose I have 5 weeks to work that out!
Therapy Sessions: Today all ZZ did was the 2 feeding sessions with the psychologist in the afternoon. The first feeding was water and went well although he was tired. I put him down for a nap in between the 2 sessions and he woke up very cranky. The second session didn't go well. She fed him goldfish from the spoon. He does like goldfish but usually just nibbles them and lets them dissolve in his mouth. She was having him chew them from the spoon and move along much faster than he normally does. He started putting his head on his tray and going to sleep. Yes, he had a long day but this was avoidance as well. She finally took off the tray and unfortunately he cried the rest of the time.
Comments: The program is a very structured behavior modification program. I was interested in watching how his afternoon feeding sessions went. As long as he was taking a "bite" when prompted, he could play with toys and the therapist was really animated and played along with him. When he refused or slowed down she kept a straight face and took away the toy. Periodically she would play with the toy a little to interest him and if he cooperated she went right back to her playful self. I can't quite imagine how this will work at home, but that I suppose I have 5 weeks to work that out!
Monday, March 15, 2010
Day One: Our Children's House at Baylor - Dallas
Facility: We miraculously made it through Dallas
Therapy sessions: I brought ZZ’s favorite foods for the first day (chips, salsa, grated cheese, and an apple). I also brought something he always wants to eat but never does ("Dora" yogurt). ZZ sat in the little chair with a tray for the first feeding session. At home he sits in a high chair but it is pushed up to the table and he can get down, he simply chooses not to usually because it's a social event for him. I think I might ask for the tray to be removed partway through the program. For the feeding session and then again for the OT, I placed the food in front of ZZ in an atempt to demonstrate how a meal would go at home. I tried to emphasize that at home, meals are a social experience for ZZ with at least his sister and I and at dinner the whole family are all there and so this one-on-one doesn't really happen ever. Next to ZZ's chair was a bookshelf full of toys and a monitor on the table in front. I also certainly don’t allow toys at the table so it wasn’t mimicking our situation at all. He was completely distracted by the toys and ate not one bite of what I put in front of him. Okay, well the not eating part is what it's like a home most times. ZZ also went to occupational therapy that first day and I tagged along. The gym is a place full of fun swings and mats. ZZ went straight for the tube swing and dove in head first. I think this will be his favorite part of eating school. The OT worked on some sensory therapies with him. She had him dig for toys in a bin of dried beans (he had done this with his speech therapist back home before and was fine with it), find something little I couldn't quite see in a towel (he seems to do fine) and then tried to get him to rub lotion on her hand (no way, but she did finally get him to touch it with one finger in order to play with a toy he wanted). I didn't watch speech therapy but she said she rubbed his mouth, lips and tongue with a nuk brush (sp?) and did mouth play with a rubber T-tube. She even put a bit of pureed food (squash I think) on the brush and he didn't mind. I do this sort of thing with his toothbrush at home so he's used to it and he has the T-tube toy that he chews on sometimes. His afternoon feeding sessions here done by a psychologist. Dry spoon and then water (he did fine). I told her he loves to pretend to eat so a dry spoon isn't much of a challenge. She said they were mostly establishing the reward system today and maybe they would try some food tomorrow.
Therapy sessions: I brought ZZ’s favorite foods for the first day (chips, salsa, grated cheese, and an apple). I also brought something he always wants to eat but never does ("Dora" yogurt). ZZ sat in the little chair with a tray for the first feeding session. At home he sits in a high chair but it is pushed up to the table and he can get down, he simply chooses not to usually because it's a social event for him. I think I might ask for the tray to be removed partway through the program. For the feeding session and then again for the OT, I placed the food in front of ZZ in an atempt to demonstrate how a meal would go at home. I tried to emphasize that at home, meals are a social experience for ZZ with at least his sister and I and at dinner the whole family are all there and so this one-on-one doesn't really happen ever. Next to ZZ's chair was a bookshelf full of toys and a monitor on the table in front. I also certainly don’t allow toys at the table so it wasn’t mimicking our situation at all. He was completely distracted by the toys and ate not one bite of what I put in front of him. Okay, well the not eating part is what it's like a home most times. ZZ also went to occupational therapy that first day and I tagged along. The gym is a place full of fun swings and mats. ZZ went straight for the tube swing and dove in head first. I think this will be his favorite part of eating school. The OT worked on some sensory therapies with him. She had him dig for toys in a bin of dried beans (he had done this with his speech therapist back home before and was fine with it), find something little I couldn't quite see in a towel (he seems to do fine) and then tried to get him to rub lotion on her hand (no way, but she did finally get him to touch it with one finger in order to play with a toy he wanted). I didn't watch speech therapy but she said she rubbed his mouth, lips and tongue with a nuk brush (sp?) and did mouth play with a rubber T-tube. She even put a bit of pureed food (squash I think) on the brush and he didn't mind. I do this sort of thing with his toothbrush at home so he's used to it and he has the T-tube toy that he chews on sometimes. His afternoon feeding sessions here done by a psychologist. Dry spoon and then water (he did fine). I told her he loves to pretend to eat so a dry spoon isn't much of a challenge. She said they were mostly establishing the reward system today and maybe they would try some food tomorrow.
Subscribe to:
Posts (Atom)