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.
Wednesday, April 21, 2010
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.
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