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...
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