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.

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.

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.

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.

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!

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.

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.

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.

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!

Day One: Our Children's House at Baylor - Dallas

Facility: We miraculously made it through Dallas traffic and got to Our Children’s House at Baylor on time, checked in and M came to show us around the facility. OCH is a pediatric hospital with both outpatient and inpatient services emphasizing a team approach to care. We are part of the daytime intensive feeding program. There is a family area with a table, couch and nap room that is specifically for the feeding program families. There is a playground area up next to the front lobby, then a children’s playroom, and a small courtyard with a basketball hoop and some benches back closer to the feeding program area. Lining the hall are feeding/therapy rooms and there is a gym where occupational therapy takes place. The children’s playroom has a play kitchen with kitchen toys, a TV, and a book shelf of books that are accessible. There are bins and shelves of other toys but they are locked. Sometimes the room is staffed by a volunteer. She's a really sweet lady and took to ZZ right away. She showed us where a few puzzles were kept. ZZ really likes doing those. ZZ enjoyed all aspects of the play room but I think the locked toys made it disappointing for the parents. It’s hard to see something your child might enjoy but you can’t access. The nap area works great for ZZ. There is a crib which I pushed near some hooks that hold a mat which also works to hang his food bag and pump while he naps. We met 2 other families with children in the program. I don't want to be be too nosey but of course I'm so curious about how they do things and what they've been through with their children. It's so helpful to me to meet others in a similar situation as we are with ZZ.

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.