Week three was a good one for Ian. After his slam with my cold, he was on the mend. We nursed his cold through the weekend with a lot of Pedialyte and slow feedings. Unfortunately, when Ian had his weekly Monday weigh-in, he had lost nine of the ten ounces he gained the week before. With a net gain of one ounce and his illness setting him back a considerable amount of calories.... it was not surprising.
As we started the new week, Ian slowly began to work the mucous out of his system. That is one of the biggest troubles when Ian is sick. Upper respiratory infections produce so much mucous, causing irritation, tickling, and gagging. Once this gagging begins, the vagus nerve gets defensive and produces even more mucous. A cycle develops day after day. All of the mucous gets in the way of his swallowing comfort. Ian ends up gagging and choking on more “bites” and “drinks.”
Ian’s therapists had to slow down his meals. He wasn’t able to take the same volume as before the cold. Ian had been consuming about 3.5 ounces or so at each meal. In the beginning of the week, his meals were between 2.5 and 3.0 ounces each. His meals are half Nutren JR formula by mouth, and half purees (fruits and veggies). Ian’s dietitian asked that the meals be 50/50 as to keep his glucose and calories content as 1-for-1 with his Compleat formula as possible.
Nutren JR is as close to an equivalent with Compleat Pediatric as possible. The osmolarity is very similar, the fat content is a bit higher, and the carbohydrates are a bit lower. This will help keep Ian’s glucose stable. He is being transitioned from a “formula through the tube” to a “formula by drinking.” His Compleat Pediatric is an excellent formula, but is NOT meant to be taken by mouth because of its horrific taste. Is is meant solely for tube meals. As Ian’s oral formula and puree feeding increases, his tube meals decrease.
He is even going a few days here and there with only one or two ounces through the tube, instead of the regular sixteen!
|Ready for some eating!|
|Prepping for the meal|
|Taking a bite|
As the third week rolls by, I thought it would be appropriate to discuss some of the specific philosophies and goals of the program. Having been in the experience for a few weeks, I have a better understanding of them now.
The program is designed to address oral-motor and behavioral issues that get in the way of feeding. The clinicians try to change the behaviors not only to benefits feeding habits, but also to avoid other medical issues that may arise. This program fits Ian well because he has both a medical and behavioral issue. It began with more of a medical background, but has shifted more toward a behaviorally based problem.
Ian’s feeding-medical problems were reflux, dysphagia, and mild aspiration risk because of deep penetration of liquids into the trachea. As Ian grew.... and had his reflux surgery-placing the tube, his muscles strengthened and he was able to manage those problems, with a little medical intervention.
The real kicker came as he “learned” his responses to the medical background. Even after the medical concerns were addressed, the fear, anxiety, and trepidation remained. Some of it is definitely still there. Ian almost “prepares” himself to swallow at times. We came sometimes see him concentrating and then swallows as if to say, “ok...... ready...... go!” The huge plus is that he tries, and succeeds most of the time. The most successful experiences, the more he will demonstrate that behavior.
Ian also needs to learn that food won’t hurt him. Not only will it not hurt on the way down..... but it CAN stay down and not turn into pain and vomiting later. This has been a very difficult aversion to overcome.
We have set some goals for the eight week program. The program helps him learn that he can have a healthy, happy relationship with food. Our goals for him are to use this new relationship to increase his oral intake and decrease his amount received by tube. Also, we hope to create a willingness to try more foods. We would like Ian to feel safe desiring food, instead of us always presenting it to him as a command.
Ian is also doing oral-motor exercises and stretches before each meal. These help stimulate his muscles. The exercises help him build strength to better handle food. The exercises, chewing, and open mouth acceptance of a spoon with food is a new concept and Ian is doing fabulously. He doesn’t always like it, but is learning that mommy and daddy are calling the shots. At this point, Ian is being presented with foods and the presentation remains until he accepts the “bite” or “drink.” Ian isn’t really given choices.
****Being in Control****
As the meal moves on, we occasionally say “Ian’s turn” and hand him a “crunchy” to do himself. If he doesn’t do it within a few seconds, we take it and say “mommy’s turn.” Ian is never given a question. We don’t ever ask him “would you like a Cheerio?” This is because part of the program is teaching the children that they don’t get to decide when and what to eat....... because these children will always chose to NOT eat. Only the occasional eating occurs, which s clearly insufficient.
I have included a few videos in this BLOG post to help understand the “take your bite” and “take your drink” protocols. On Thursday, Ian had recovered enough to make considerable progress. This meant that I could begin doing meals with him. I had done once before he was sick. Thursday I was able to do one, and Friday I was able to do all three. The second and third meals I was even alone in the room while the therapist watched me on the monitor from the viewing room. At first it was a little scary knowing that I was being watched and judged on what I was doing. As the meals went on, I built some comfort and felt stronger with my feeding technique. The therapists are very helpful and give lots of positive feedback...... probably because positive feedback is essentially their job!!
prolonged presentation of spoon, negative behavior of spitting
I feel like dancing instead!
Bites and Drinks
The program is very “Pavlov’s Dog.” There is a quick association between taking “bites” and “drinks” with a reward. At times, the reward is removed until the behavior os performed. At other times, if the child is accepting and engaged, the reward can remain, such as a toy on the chair tray, or a DVD playing in the background. As refusals appear, the reward is removed until the desired action is performed. The routine has to be followed very specifically. A behavior can be removed as quickly as it was formed in some cases. Reforming the behavior can then be even harder.
The program teaches specific praise for ALL efforts...... even when refusals occur. The smallest actions are praised, so as to elicit more positive behaviors. All negative behaviors are ignored, or redirected as needed. These include statements like “No spitting” when food is expelled, or the continued presentation of food to the lips with the 5-10 second repetition of “take your bite.....” until the child opens. For some kids, this can take minutes. Ian has thankfully never done this.
|Enjoying a reward|
PUREES VS TABLE FOODS
Ian’s oral meals are all purees at this point. Table foods, such as his Cheerios and Fruit Loops are considered extras at this point. The purees are used for a few reasons. First, it helps deliver a concentrated volume of calories. The clinic uses the *medium* of purees to increase volumes. Secondly, purees help with texture aversions and oral-motor concerns. Ian’s oral-motor is at a slight delay. Purees give him a new texture to move around.
Also, purees provide a better “acceptance” of food bites. Think of it as what can be spit out and what cannot. Chewing cannot be *forced.* placing a Cheerio in the mouth can easily be expelled. Purees on the other hand, are *mush* in the mouth and cannot easily be completely expelled. They sit in the mouth and just kinds much around. Also, it is easier to blend in new foods. Ian started with applesauce. He then worked to 50/50 apples and pears.... then 100% pears. He did the same with peaches, and then sweet potatoes, and then carrots.
He is eating stage one and two table foods. They are divided into four levels based on density and consistency. He is essentially eating crunchy, dissolvable carbohydrates.
Ian’s feeding stages have been described in age. Essentially, he is eating at a six month level. This all makes sense since Ian was eating well until about nine months. We were spoon feeding baby foods from six months..... until the baby food hit the fan!! Ian is pretty much starting at the beginning... where he left off. He will progress in the same manner he would have then, he is just doing it two years later.
It is a very exciting feeling to watch Ian eating on the treatment monitors. We are so proud of him. They teach open mouth acceptance and open mouth chewing. The chewing is to help the kids from “sucking and tongue mashing” the food. With open mouth chewing, he has to “chomp” the food with only his teeth. Fortunately, Ian is a great chewer. A lot of the kids in the program don’t know how to chew and are there to learn because they only eat purees.
As I begin to work my way into meals with Ian, I have been able to do a few at home. Ian seems to be doing very well with his homes meals. The therapists were concerned he might try to pull out behaviors with me at home that he does not with them. The mother relationship is very different from the solely feeding related relationships with the therapists.
THE TERRIBLE TWOS
On a side note, Ian has jump into the terrible twos full throttle. The tantrums and screaming, kicking, throwing behavior is definitely a challenge. It is a frequent, but not constant occurrence. Tom and I attribute a lot of it to his new surroundings, new people, new house, new expectations, and new everything else! We have also considered that he is growing, and could be experiencing some growing pains. Since he has been eating “real food,” his body is definitely changing and growing, in a good way! Either way, we have been there to comfort him when he needs it...... and ignore him when he needs it!!
I cannot imagine how difficult this is for him. The other day I was thinking about putting myself in his shoes. If someone took me hours away from all of my things and the people I know, just to make me spend six hours a day doing something that scares the crap out of me, makes me cry, and could even hurt me.... while people make me do it.... does NOT sound like something I would sign up for. It certainly doesn’t seem like a “tough love” type of experience, but undesired all the same.
|No thank you|
Ian has made friends with the other “students.” One was his age and just graduated on Friday. The other child is about ten and a third is starting on Monday. Another will start the next Monday. hopefully one will be around his age for him to play with. Regardless, Ian is full of smiles most of the time and is happy to play with the toys and DVDs as feeding therapy rewards during his treatments.
Ian would like to extend a Happy Valentine's Day to his preschool friends, and girlfriend Emmy. He wants them to know he had a good time and *loved* the Valentine. He had fun during Mardis Gras and is missing them terribly!
|A special Valentine|
|I dig BEADS!|
**Tom and I would once again like to extend our appreciation for all the support and prayers. Some days are harder than others.... and watching your child cry and refuse food while someone keeps “presenting” it to them isn’t an easy thing to do. We continue to try and see the net gain in small baby steps. He may be behind, but is making huge milestone accomplishments everyday. Thank you for keeping Ian, Tom, and me in your thoughts.