Wednesday, May 12, 2010

Days 9, 10, 11, and 12 - Stepping it Up

Last week on Day 8 we had the first of our Family/Feeding Team Review of how the boys have done the first week and what the next steps will be in our plan.

Cameron’s Review:
Long Term Goals (these are subject to change throughout the program based on his achievements within this list):
Cameron will increase solid food intake to an average of one ounce puree/soft solids per meal. (He does not consume more than small tastes on a baby spoon at the moment, but he consumes them and does not gag (anymore, he once had a horrible gag reflex that suddenly almost disappeared,) or spit them out which I’m told is the first of many tiny steps to achieving this goal. His actual consumption of solids is about .1oz per meal on average. )
Cameron will increase liquid intake by 50% over 2 day baseline. (Currently he’s consuming about .7oz of liquids per meal. This should be easy enough I think, right? He regularly drinks at least 2 oz at home so I’d be thrilled if he could finish 4oz. At “school” (aka Feeding Clinic) he’s consuming between .5oz and 1oz.)
Cameron will demonstrate appropriate Self-feeding Skills with meltable solids, 10x per meal. (He’s easily demonstrated that he can do this, having eating upwards of 7 cheese puffs and 10 Cheerieo’s. Now we just need to get him to do this every meal.)
Cameron will demonstrate emerging lateral processing skills with meltable solids, 10x per meal. (Again, he’s doing it all of the sudden but not consistently and not at every feeding session.)
Cameron will demonstrate an average weight gain of 5-10 grams per day. (This is not happening yet, in fact he’s lost weight. Starting at 12.05kgs on Admission Day 4/27/10 - that puts him at the 31st percentile for kids his age, with his weight on 5/6/10 being 11.85kgs. This is a loss of 200 gms since Admission Day. Not a lot, and not surprising considering he’s had a runny nose causing lots of reflux vomit at every feed and at least once a night. We’re watching it and expect it will go back up soon.)
Cameron will present with 80% appropriate mealtime behaviors. (Yeah, not so great. His average is at about 59%. The important thing to keep in mind is that this is all done in baby steps and he’s showing that he’s willing to be there, wants to make his therapists happy and is showing effort in his compliance to what they are asking of him, just not all the time. He’s a toddler with anxieties and fears and issues with eating. No one can blame him for throwing a temper tantrum when he’s frustrated, but we are also working with not throwing food and toys. The new goals for this are to get him to consume .5oz of solids per meal with lateral processing of crunchy or soft foods 5x per meal,, 1oz of liquids per meal, and appropriate mealtime behaviors 70% of the time.)
Cameron will be trained on feeding protocol and be able to implement independently. (This means that they are working on teaching him a pattern to proper eating behaviors and a reward system for doing what is asked of him. This is really going to take the whole feeding program and probably beyond before it’s actually mastered.)

Because of the increased frequency of vomiting, how much he’s throwing up, the amount of weight he’s losing we are going back on Erythromycin at a very low dose and will work up on dosage based on how much or little he vomits to increase the motility of the foods processing in his stomach and gut. We’ve been on this before and did not see improvement. We’re willing to try it again if it works, then great.

Cameron will also be attending a Sensory Motor group activity 3x per week, which is super fun because it involves a very big ball pit and lots of other fun very tactile things like that. He will also be getting Speech Therapy 2x per week (1x during one of his Sensory Motor group sessions and 1x in a Speech group session that involves singing, signing, and other language activities). I will say that since we’ve started this program he’s become quite fearless, climbs even more stuff, touches more things for longer periods, and while he still startles easily is much more brave about new things and events.

Because Cameron was so over stimulated by all the activity in this new environment the 11:30am lunchtime session was becoming a problem because he was so tired and falling asleep in the feeding session. The team decided to move his lunch to 10:45am and this has made a big improvement. Immediately following lunch he will go nap on his cot for as little as 30 mins (Yikes!!) to as much as 3 hours (Yaaaaaay!!) and his best feeding session of the day is always snack time. This makes me happy because what normal toddler doesn’t enjoy a fun snack?

Nutritionally we have had to make big adjustments to both Cameron and Evan’s G tube feedings because of the lunch schedule change. We were giving them a 200ml bolus from 9 to 10am, but because lunch was bumped to 10:45am they would not be hungry. So we have dropped the morning bolus, added an extra 50mls of formula to the volume of the noon/nap time bolus, plus added two scoops of DuoCal to the noon/nap bolus. We also added another 50mls of volume and two scoops of DuoCal to their evening/bedtime bolus. This allows Cameron to get the 900mls of nutrition he needs (about 1150 - 1200 kcals/d) each day without impacting the feeding sessions or making him wear a backpack all day long.


Evan’s Review:
Long Term Goals (these are subject to change throughout the program based on his achievements within this list):
Evan will increase solid food intake to an average of one ounce of puree/soft solids per meal. (Evan has flat out refused very nearly everything that has been offered to him with the exception of some sips of milk. Seriously, this kid must be so parched all the time, you would think that chugging some milk would make him feel good and that he would enjoy this. Apparently he does not see it like this. In fact in the first 8 days of the program he did not consume ANY measurable amounts of solids and only .39oz of liquids. I must at this point tell you though he’s refusing, and has been nicknamed the King of Avoidance with a mean left hook by the Director of Psychology physician who also happens to be his primary therapist, he has willingly put some food items in his mouth. He can bite the food items fine but doesn‘t; he’s terrified of what happens when food gets in his mouth. He does not however, spit it out or try to push it out with a finger, he just gags and vomits or swallows the offending food. This I’m told is the miracle that is our proverbial foot in the door with him. And to be sure this is my child, he did just yesterday put an entire Oreo cookie in his mouth and attempted to bite it for his therapist. I promised Evan that if he would eat one whole Oreo that I would gladly go and buy all the Oreos in the world and share them with him. Hope he likes the Double Stuff like his Mommy.)
Evan will increase liquid intake by 50% over 2 day baseline. (This should happen with time. They had both boys on Boost Kids Essentials (the 1.5 calorie mix not the standard 1 calorie mix) and Evan seemed to truly dislike this formula milk. So in an effort to try to make him more compliant we switched the boys to Whole Milk with a packet of Carnation Instant Breakfast Vanilla powdered formula mixed in for the extra calories because Evan willingly drinks far more milk at home on a regular basis. He seems to tolerate this better but not in the Chocolate format.)
Evan will demonstrate an average weight gain of 5-10 grams per day. (Evan is succeeding in this, gaining about 25grams per day, but not because he’s eating more by mouth. He’s just not been vomiting as much as Cameron. Because he’s gaining so much we may cut back on the volume he’s getting in his G tube feedings, which is always a good thing because its less to vomit, less time on the pump, less for him to have to wear as a backpack.)
Evan will present with 80% appropriate mealtime behaviors. (His compliance behavior is at 63%. He licked cinnamon spice oatmeal once, cookies, and cheese curls and allowed a dry spoon to be brought to his lips 5x. Goals for this week and next will include increasing compliance level to 65% or above, licking 2 novel foods 5x or more, and opening his mouth for a dry spoon at least 3x. On Sunday this week Evan was very excited to put his father‘s pizza in his mouth and got about 6 to 8 tastes of pizza cheese and sauce. Baby steps.)
Evan will demonstrate appropriate self-feeding skills with utensils 10x per meal. (Yeah, not happening. Maybe 2 to 4x per meal. Though last night he helped me spoon about 8 baby spoons of syrup from diced peaches cup into his mouth. The boys call the syrup “sweet” and will ask for “More sweet.” )
Evan will demonstrate emerging of lateral processing skills with meltable solids, 10x per meal. (Not happening well or often, but he can do it and has been really playing around with his tongue in his mouth this week. Hopefully that’s a sign that he’s ready to try. The psychologists have told me their goal is to get the boys to try new things in a controlled setting, specifically with the hopes that the new thing makes them gag a little but just enough that they learn how to deal with it.)
Evan will be trained on feeding protocol and be able to implement independently. (They just need to get him to stop throwing things off his tray for starters.)

As I mentioned before, the boys are so over stimulated and excited in “school” that they are falling asleep in their lunch sessions, even once they started having them earlier at 10:45am. But Evan is really struggling with this so much so that there is concern that this is /has become a behavioral reaction to his anxiety about eating. There is a term for this called Somnulent Anxiety. The psychologist is not going to say yet if this is what Evan is doing, there are a lot of factors that can cause this reaction and the timing of this particular behavior only seems to happen at lunch, right before naps.

Somnulent Anxiety, as it was explained to me, is an old terminology that doctors came up with to explain why some infants when presented with a situation that they are so anxious about that they need to escape, will turn their heads and go to sleep. Evan is sort of done something like this and on occasion when the therapist things he's asleep and gives up on lunch and takes him back into the playroom for nap time he perks up all of the sudden. But, Evan has not been sleeping well, still vomiting at least once a day usually at night in his sleep, often wakes up repeatedly between 4am and 6am, has an hour commute one way,and spends several hours playing hard in this very overstimulating environment. And this behavior tactic is usually only done by much younger infants because they can not escape or remove themselves from the situation, but then even though Evan could get up and walk away from the table he's strapped to a highchair or booster seat so this explains why it is a possible behavioral diagnosis. And lastly, both our EI OT and ST have witnessed Evan falling asleep during therapy sessions at the exact same time of the day with less activity and stimulation all morning prior, and have seen him perk up the minute we pull him out of the therapy session, though this was rare. If it was really Somnulent Anxiety behavior then why doesn't he do this at breakfast, snack time or dinner? We have a lot to take into consideration before really applying the description to him as a diagnosis.

This week we have stepped up to more aggressive feeding therapy tactics. Specifically with only allowing the boys to have access to toys during meals if they take a bite or drink. Also, we are working on a "hands down" protocol that will hopefully get the boys to realize that while they are very talented at swatting food out of their faces, it's not acceptable and they need to eat what is being offered. To do this the therapists will work as a team of two during a feeding. One will feed while the other stands/sits off to the side. The one to the side will only touch the child to hold his hands down on the table until he chooses to take the offered food by the therapist feeding him in front. Initially this does require a couple of what looks like "force fed" spoons where not only are his hands held down but they may have to use the adult's forearms from behind to hold his head and shoulders in place so that the child can't thrash around. Someone watching this without knowing what to look for would certainly think this is force feeding and cruel. But in reality he has the choice to not open his mouth and they will take the spoon away after a full minute, and the person holding him down will let go and step away. All the while this is going on he's getting lots of praise for good and acceptance behaviors as well as rewards by having access to toys or music or bubbles or the television. And today was Cameron's first go at this. And after three tries he did willingly take the offered spoon and guide it into his mouth and pleasantly eat the pureed carrots. And for this excellent compliance Cameron received lots of bubbles, toys, cheers, praise, and the general hoopla that he enjoys. Hopefully he will get the idea and the ninja arm swatting and pushing will decrease and/or go away. It will take some time.

We will try the same tactics with Evan this week too, but probably at a much slower pace as Cameron seems to really understand what is expected of him and does not complain much at all and when he does it's kind of half-hearted. Evan seems to actually get furiously angry and so this tactic may not work on him and we'll have to find another way to positively reinforce good eating behavior.

On a side note, after about 6 months of trying and trying and many mouthfuls of nasty liquid soap, Cameron has finally managed to blow his very first bubble on his own. He's quite proud of himself. I am too.

Also, Evan had a very rough morning today and I had to do an emergency change out of his G tube AGAIN! This time though we could not find the leak in the balloon and have no idea why all the water in the balloon was gone causing the Mickey button to be pulled out when he fell on a pile of books stacked on their side this morning. He's been up since about 4am today. Hopefully tomorrow will be better for him.


MrsKatieH said...

You are such a great mom. I am excited for good things coming your, Drew, Cam and Ev's way!

Annie and Jason said...

Wow! That's a review!

So when they vomit, do they vomit up a bunch of their formula and scream? Meaning you have clean up duty and have to change out all their clothes?
I'm trying to get a better understanding of a day in the life of Laura ;)
It sounds like there's a firm plan in place. I hope the boys meet their goals. I'm so anxious and excited to see how this all turns out.
Hang in there. I can only IMAGINE what one full day of getting up so early, driving there, hauling them in and going thru the whole day just to pack up and drive all the way home is like - exhausting for everyone!
I'm a little shocked they just don't do in-patient to make it a little easier on you. But I think you already mentioned it's part of the program to have the kids at home for a meal as well.
Again... hang in there!!

Trish said...

Goodness. This post makes me want to come give you a hug. Or a shoulder massage. Or something.
just hearing all of this made me tense.
I know it's all ultimately worth it, but those boys owe you big when they get older.