Wednesday, June 16, 2010

Last Day of Feeding Clinic

This is the boys on their final ride home from our very last day of the Mt. Washington Pediatric Hosptial's Outpatient Feeding Day Program. They were very happy, we are very happy.

We were discharged today having reached almost our goals. To refresh your memory the goals for the boys were:

1. Increase solid food intake to an average of one ounce puree/soft solids per meal. (This from a starting point of 0grams, literally they ate no measurable amount of solids at any given time under any given consistent circumstances regardless of everything we and our OTs and STs have tried.)
2. increase liquid intake by 50% over 2 day baseline. (Again, their liquid intake was not a consistent measurable amount, and even on good days at home it was rarely more than an ounce or two maybe once a week.)
3. demonstrate appropriate self-feeding skills with utensils 10x per meal. (This was not exactly demonstrated by Evan though I think that we may have found a method of reward that will encourage him to try this as he becomes more comfortable with eating and develops preferences. But Cameron can do it with Chicken & Stars soup if he is allowed, though not well.)
4. demonstrate an average weight gain of 5 to 10 grams per day.
5. present with 80% appropriate mealtime behaviors (that means that 80% of the time that the child touches a food they have an appropriate and favorable response to food which includes licking, sucking, touching with hands or lips, etc.)
6. Caregivers to be trained on feeding protocol and be able to implement the protocol independently.
7. This applies to Evan only because he does not put food in his mouth and tolerate it at all, unlike Cameron who is now willing to put solids in his mouth. Evan will demonstrate emerging lateral processing skills with meltable solids, 10x per meal. (This was achieved with purees that are of a Stage 1, 2 and some 3 levels. But it was not achieved with crunchy solids because we were not able to get Evan to put solid crunchy foods in his mouth all the time, but it is emerging and there is some more tolerance of putting the food in his mouth to explore.)

We will continue to follow the protocol that the program has developed for us because it does work. And it works VERY well. And they boys REALLY get it, they really do understand that in order to make us happy they have to comply with our request to eat before they can have their reward. But like everything in a toddler's world, everything must be done in moderation lest you burn them out. So we will continue to encourage more steps of the required behavior before giving them the reward by asking them to take instead of only one bite or sip, to take three or four or five bites or sips before they can have their tv show back on or their toy returned to them. And when I say they get it, I mean that they only have to notice your hand moving towards the pause button and they will instantly open their mouth wider, lean forward, and attempt to get the food to their mouths as fast as possible, all the while staring at the tv screen. In fact it almost works too well because when we present crunchy foods the boys need us to turn the tv off so that they can focus and make the decision to want to work with the crunchy foods, because with the tv on or the toy present they have a distraction that is more tempting than the stressful decision and action of working with the solid crunchy food.

So does this mean we always have to have tv on while they are eating?

For now yes. We can go out to restaurants or friends and family and not have a tv and just use toys as their reward. But the toys don't always work and we have to carry around a lot of small toys to cycle throughout the meal for each child. We do have a portable DVD player that we can take with us. But as of yet, this method of eating has not exactly been tested outside of home and the feeding clinic. We will continue to tweak and improve on our method, but eventually the idea is that they are young enough to make a smooth transition from eating because they want the reward of a prize to eating because they like and want to eat; since formerly they could not and would not associate eating with comfort and pleasure. Cameron does now tell me he's hungry and thirsty, and Evan gets the concept but has not had to put the process of asking to the test since his verbose brother does the work for him.

We will continue to have feeding clinic outpatient sessions but they will only be once a week. And they will be at the satellite facility that is located in the PG County Hospital. The reason we will be going there is because A) it's only 15min from home on an easy straight shot with little to no traffic, B) we have worked with and also really like the OT and ST at that satellite office during our 10month waiting period to get into the Feeding Clinic so they know us and we know them and there should not be any stress with the boys being reintroduced to these therapists. We will have follow up appointments with the whole Feeding Clinic team in six months in September and then we will review where we are and whether we need more intensive therapy or if other more significant changes need to be made to the boys protocols.

Was it worth it?

The short answer is yes, I do think it was worth it. Both boys now eat 2oz of a pureed food by spoon and anywhere from 1oz to 4oz of milk four times a day (breakfast, lunch, snack, and dinner) and they are experimenting with solid crunchy foods willingly. Feeding the boys is not as stressful, not as much of an all out battle that I had to mentally as well as physically gear up for. There is consistent improvement in what they eat and how much they will eat. If we continue at this pace I feel like we theoretically could be off feeding tubes within the next year. And the boys will be eating all the same foods their peers will be eating by kindergarten.

Without the psychologists understanding that the root of our feeding issues is the anxiety that the boys have at the sight of the spoon and ways that we could positively work through their anxieties in ways that set them up to comfortably succeed and allow themselves to trust and be challenged without fear is for us the world of difference. It was a very fine line between forceably feeding my toddlers and giving the boys control and choice and the ability to make their own decision about accepting food that is offered. I could not have done the hands down procedure on my own in the initial phases. I wish that I could have video taped the hands down process to show you how scary it was to see, even knowing in advance what would be done and how, that the boys had natural ways to show the psychologist that they would not try to eat so that he would see the cues and know to stop and let go of the child. They could have refused, screamed, made themselves hysterical for as long as 30minutes refusing the entire time they were pinned to a chair by another adult unable to move anything but their mouth and they could have refused to open their mouths. But in the end after only less than 28 very loooong seconds (yes, I literally counted them) they did open their mouths and did willingly take the spoon of food. And within 24 to 36 hours they were both willingly taking spoonfuls of food that they would otherwise have swatted away without even looking at them. Even today I do have moments with Cameron that I have to pin his arms down with my hand and use that same forearm to hold him back in his seat while he shakes his head from side to side crying and screaming at me no. But then he does take the bite and I let go and turn on the tv or give him a toy and he's all smiles and happily accepts the next bite. And ever since the hands down protocol the boys food consumption has improved by leaps and bounds.

The long answer is that I think it depends on each individual child and their different issues, what their parent's involvement is and how well they grasp the scope and difficulty levels their child is dealing with. There are so many different eating disorders that I can't competently describe who would be a good fit for a feeding program. There are kids that look healthy and actually do like to eat, but just won't eat enough to maintain the minimum body weight requirements to survive without feeding tubes and are simply not interested in eating and never feel hunger. There are kids that just can't bite down and need help figuring that out. There are kids that have swallowing disorders, aspirate food, overeat, swallow whole pieces of food without chewing at all, the list goes on. And the success of these programs requires that parents need to also be able to have patience and be consistent and persistent without showing frustration for excruciating periods of time measured in years because of all the different kinds of therapy out there, feeding therapy is the one that is hands down the most difficult. I often got the sense that the therapists had issues with some parents about their involvement and that parents often think that they drop the kid off and when the day is done they've learned to eat and they go on about their buisness, when the therapists really need them to come and observe what's going on to get feed back from the parents because only the parents can read the child's signals best since they are the ones who know the child best.

For a program like this to work it really depends on the child being able to self soothe or at least be able to be redirected and calmed down so they can begin to move on with their day, the parents really need to be out of the picture and the kid needs to begin to learn to deal with life in this safe environment so they can begin to make choices without being influenced either directly or indirectly by a familiar person. It's immensely helpful if they have the ability to understand simple one step directions like "Take a bite. Touch the chip. Stir the soup. Open the box.", know their body parts (ie. mouth, nose, teeth, lips, cheek, tongue) as well as action words like touch, lick, kiss, bite, and being able to count even if it's only to the number three. This way the therapists don't have the additional hurdle of teaching these concepts in addition to teaching the child to tolerate and accept the actions leading up to their interactions with food. I think for us it worked because the boys had just learned all these concepts, gotten over their severe stranger anxiety, and needed people who could take them out of their environment and set up new expectations for them to follow so that they couldn't fall on their reliable behaviors to get them out of eating. And in our case it was a very fine line between force feeding and removing automatic defense mechanisms so their brains could decide what was best for them.

What's next?

We will continue with our weekly OT sessions with the Infants & Toddlers Early Intervention program and go back to weekly feeding therapy sessions with the Feeding Clinic's satellite location. Like everything else in the boys lives it's still a dance, two steps forward, one step back. We are expecting there will be setbacks, the boys will mature in their own different ways and get wise to our methods and we will have to work with the psychologists and behaviorists and therapists to stay on top of this. The tv and toy reward protocol wont always work, but hopefully we're creating a foundation for them to develop solid pleasurable experiences with eating and once those skills and senses are formed and the pleasure of some things food related will be mapped to the brain permanently.

If they told me today that they thought the boys could be eating a hamburger on their own by the end of August I would happily continue doing this program every day. But it is VERY hard on a toddler to do this program. By today the boys were exhausted, cranky, unwilling, and generally miserable. If the commute was less than 30 minutes one way I think that would make the experience very different. But my boys are troopers and managed to last it out the whole six weeks (actually seven if you count the week of their horrible virus where we missed clinic to stay home and get better).

Every single person on staff was so nice, very understanding, and really do love kids and has shown personable interest in seeing the boys do well. They all sought feedback from parents on how to deal with each child in the most comfortable way for the child, but they also would not let the child get away with any unhealthy behaviors that would thwart the eating process. The playroom staff are very good with my boys and they genuinely liked Ms. RayRay and Ms. TeeTee and learned that someone other than Mommy and Daddy and Granny can help them when they are sick and can help them go to sleep for nap time. They made the boys day fun and helped them with their social interactions with other kids. And the fact that Evan has to be re-sleep trained because the staff had to rock him to sleep occasionally is no big deal. Hell, I know how hard it is to get two two year old toddlers attached to feeding pumps to take a nap, and they have ten kids of varying ages and disabilities to deal with. Re-sleep training my boys is small potatoes.

Most of all I must mention the program nurse. Because of her understanding of the boys life experiences with medical staff the nurse Mrs. Michelle above all others (outside of the feeding therapists and psychologists) was able to impact the boys in the most surprising and blessedly helpful ways. Nurse Michelle was able to help the boys learn to trust her, learn to tolerate having their temperatures and other vitals taken several times a day, let her use a stethoscope on them without screaming in abject terror, be stripped down to their undies and stand still on a scale, have someone other than Mom and Dad touch their MicKey buttons, and.... SHE EVEN TAUGHT THEM HOW TO TAKE ERYTHROMIACIN BY MOUTH!!!! Her patience dealing with the boys made Evan's trip to the ER and the subsequent doctor's visit for both boys afterward bearable and totally doable by one adult.

The program has improved their lives, and while the things I've listed as improvements are small or odd, they are major improvements and make our lives much better. So yeah, I liked this program. And it's very possible we will have to do it again one day. But I will not be nearly as stressed over it the next time.


Blue Moon Mama said...

Laura, I am so glad this program has been a success! I can only imagine what the ups and downs must have been like. You and Drew are amazing parents, and your boys are so lucky to have you both. Your patience and tenacity are remarkable.

Great job, boys! Here's to being able to eat anything and everything that other kids do by kindergarten! I know you can do it. :-)

Ryan and Gina said...

Laura, I stumbled across your blog today. Your boys are very cute. We have 28 week twins, too, and one has feeding issues. His water broke at 20 weeks. He has a GJ tube and has vomited daily, until we made some recent changes to his feedings. I didn't see an email listed for you.

Would it be possible to speak with you by phone? I know it's random, but wanted to speak with someone who has experienced the same feeding issues as us.


Ryan and Gina

Annie and Jason said...

I'm so proud of you and your commitment to these boys. You are the best mommy EVER.
you give me so much hope...