Three weeks later - How's it going?

It's been three weeks since we were discharged from Feeding Clinic's six week program. The first week things were fan-freaking-tastic. The second week things were tricky but still pretty good. I started to notice that the boys were less compliant and consuming as little of the food off the spoon as possible by using their lips to make the smallest opening and then push the food off the back of the spoon. This made feeding take longer and really has pushed me, my husband, and my mother off the deep end of frustration. And then there was the call from the outpatient follow up weekly feeding clinic therapist telling me that the one session we'd had after discharge would be our last and that we had used up all our OT and Speech therapy sessions for the year and would have to pay out of pocket for the remainder of the year. Um, yeah, are you F'ing kidding me? That's roughly $300 a week for each boy. We know that this is an error in the processing of the billing, though trying to get that straightened out has been tedious and we're still in the works. The bottom line is that the therapy the boys get is really HABILITATIVE and not Re-habilitative, meaning this was a condition that they were born with and need services for in order to learn how to sustain life. It seems dealing with this issue of coding and billing for habilitative care is going to be an ongoing issue. And this third week post-feeding clinic discharge has been utter misery during meals.

The best thing that's come of this though is that at least we know without a doubt that the medical staff at Mt. Washington really do care about the boys and how well they are doing once out of the program. When I called the program Manager Ellen she talked to the program's Director of Pediatric Psychology and he managed to make sure that we have 100% unlimited mental health coverage for the boys with our plan by joining our insurance company's network. This way we can see him every week and still get care and follow up services with him until our Speech and OT billing/coding issue is worked out.

And really, it seems that this is what we need most directly after the program discharge. I say this because the boys eating issues are primarily a behavioral psychological issue and the mechanical function of eating solids and dealing with the sensory issues related to eating is the secondary issue that will follow once they get past their fear of eating. This third week has been miserable because of a few reasons.

1. All kids will test their caregivers with behavioral issues after the program. And if every single person feeding them is not following the strict guidelines that the psychologist developed after the program ends they will see that the child will always find ways to get around what is being asked of them to do. Consistency, consistency, consistency is the key. For example, now that we're out of the daily program Evan will pucker his lips and make it look like he's opening his mouth to willingly receive food, but when you put the spoon in his lips you hit his teeth and the lips push much of the food off the spoon. Cameron also puckers like he's accepting the food, but puckers to the side of his mouth an even smaller opening than Evan so that you have to be quick and get it in there only to have his lips push all of the food off the spoon. Cameron would also dip his head forward to minimize the amount of the spoon contact with the inside of his mouth. The key to stopping this behavior is the consistency of the feeder to make sure that the instant the child refuses you take away their toy or turn the tv to a blank screen (or even pause it and put a towel over the screen so they can't see it at all) and wait until the child does exactly what you want. Hold the offered spoon steady, at a slightly higher level about nose height to make them lift their chin and raise the top lip so they have to open their jaw more to accept more of the spoon. The goal is to get at least half of the food covered spoon between the teeth. You also need to give them modeling behaviors (opening up your mouth wide with the "aahhh" sound) and giving one step direction like "open big". If each person helping me feeds the boys differently and with lesser degrees of accountability the problems we are encountering become much more difficult and we start sliding back to the beginning phases of their refusal to eat, and thus completely wasted the $6,700 we've spent so far on the therapy (thankfully not the $16k we were expecting because the psychologist is now on our network of doctors).

2. The person feeding them MUST be focused on what they are doing as well as making the feeding session as enjoyable as possible, especially when feeding using toys as the reward. I can't take a DVD player with me all the time, it's just not convenient enough or always possible in every situation. But if you are using toys, you MUST make it fun or they will not want to continue with ANYTHING you are trying to do, whether it's play or eat. When you have gotten a compliant bite of food you have to immediately give them praise as well as give them their toy back. But it's not enough to just hand the toy back. Sometimes you really have to interact with the toy to make it fun and you have to do it quickly before the child has time to really think about what they are doing and act out. If you are using toy Matchbox cars after each bite of food you can't just put the toys on the table and expect the kid to play happily, they are just too clever for that. They need you to very quickly make the cars do something like crash, hide behind their milk cup, drive up their sleeve and park on the head. If you just hand them the cars and expect them to play they will get bored with the cars super fast and that's when they start to act out. The reward system relies on the person feeding them to keep the entertainment going, which is why television is so simple and easy (though not exactly preferable, and we will be trying to work away from the television).

3. We left the program with the mindset of "Now we can think of feeding the boys in terms of ounces and not the number of individual bites of food". And we still don't but until this week I had thought we would be going back to the counting of individual bites. Agonizing. But yesterday we had a follow up session with the psychologist and he reminded me that: A) I have two kids with this eating disorder that is very difficult to work through and that I need to give myself a whole lot of credit for doing what I've done so far. This is really difficult for me to do, I'm always so much more panicked about the end result of getting them off the feeding tubes.

B) He reminded me that we should not be thinking in terms of either how many bites or ounces they consume, but in terms of how much compliance we get from them at every. single. bite. or sip of a drink. That this is the most important thing for parents of kids who will not eat at all or who do not feel hunger and won't eat enough to continue to sustain weight. We need to be getting 80% compliance before we can see a natural change in how the boys perceive eating to be able to move on to the next goal or level in the feeding therapy process. To get them to change a deep seated instinctual habit takes more than just 30 days of practice. This is sooooooo difficult to do, because we know they can do it so it's hard to fathom why it isn't happening faster. Feeding therapy is truly the slowest form of therapy there is.

C) That my situation is unique so that to feed two kids with this eating disorder at the same time means that I have to go extra slowly with my expectations because they are clearly picking up each others techniques on eating behaviors. Since I do have help, with my mom living with us, I can have someone feeding one boy while I feed the other. But this means that 50% of the time the boys get to "bend the rules" by not being held accountable properly through the feeding protocol. This is mostly because my mother, who will do anything in the whole wide world for my boys because she adores them with her whole being, is a bit of a softy and not really a task master at holding them to opening their mouths and taking drinks per the protocol and gets frustrated and forgets in her frustration to make the play with the toys lively. And I would be remiss if I didn't say that both myself and my husband also struggle with this at times. If you have read the protocol I've posted earlier you might think this doesn't sound that difficult, but really we're dealing with minute subtle signs and cues from the boys behaviors and postures that require instant reaction until their little brains are mapped so they have (one day in the future) developed the understanding that eating is good. To do this we have to be hard-nosed about feeding and how it is done.

So now to get the boys back on track I'm going to try feeding them independently of each other. When we're at home I'll still have them in their highchairs at the same time, but while I'm feeding Evan, Cameron will get toys and to watch television, and vice verse. But instead of feeding each boy for 30 minutes, I'll only feed them for 15minutes before moving on to the next kid or ending the meal totally. This does mean they are consuming less by mouth, but I can focus on getting 80% compliance from each child at every meal instead of only half the meals. We will focus on increasing the volume they consume when we've gotten back on track with mastering the compliance of eating.

As for the vomit, well, it's still one to two times a day, usually once on their lunch bolus and once at night for each kid. So yeah, our sleep has not improved. And there is no snooze button on these kids either. Believe me, I've looked for it.

But they both willingly tried two small samples of Maryland steamed crabs over the Fourth of July holiday at our friend's house. And I think they both really enjoyed it, but after two self directed self fed tastes they reached their threshold of trying something new and ran off to play some more. Good times!

In other news... The boys are really turning into people. Their personalities are starting to shine through more and more every day and they are both going through MAJOR language explosions.

Evan is saying two and three word sentences now, and has really started becoming much more vocal, more loud, and more expressive. He's singing songs and signing words as well as saying lots more complex words like, "elevator, mixer, tow truck, thank you, excuse me, help me up, falling down, round and round". Today we had his six month review of his developmental skills and with the obvious exception of Occupational Therapy issues surrounding feeding and eating, Evan's only delays are in language. He's been evaluated at the 19month old language ability, which still keeps him at more than a 25% delay in language skills and means that he will continue to get Early Intervention services through the county and state for Speech. Naturally he and Cameron will continue to get OT service but they are strictly for the feeding/eating issues. Otherwise Evan is caught up and completely performing normally within the 24 month old to 27 month old range for his gross motor skills, fine motor skills, social and cognitive skills. Evan is also quite the social butterfly and does not appear to have any anxiety in groups and does not get upset when I need to step away or leave the room.

Cameron is a veritable tape recorder with full and instant replay capabilities, so we have to watch EVERYTHING we say now. He's saying not just long sentences but this morning I was in the kitchen listening to him playing with Evan. He told Evan, "Stay Evan. Stay Evan. Stay right there. Evan hiding. Count. One. Two. Three. Where Evan? Where Evan? Come out, come out wherever you are! There Evan, I found you!" Evan was hiding inside the giant cardboard house I had built him, giggling like a mad scientist waiting for Cameron to "find" him, right where he'd left him.

Evan is also doing more daredevil tricks like headstands, climbing, climbing up the slide feet first into a standing position (!??!?!?) and walking down the slide without falling or holding on to anything, and sliding down on his belly head first. This one is fearless, I tell ya!

They are getting better at holding my hands when we need to walk someplace but if it's a long walk or I know that I'll need a hand free I have to take a stroller if I'm alone or I will lose a child somewhere along the way for sure. They are unpredictable, unstable, fast and wiggle out of the tightest grasp. I've got leashes and will use them when I'm alone, but they are almost a hindrance at times and cause the boys to fall down when they hit the end of the line. They also are getting better at using people's names, telling me when they have an owie and need a hug or kiss, can tell me to wipe their face or nose, and tell me most every time that they've gone poo-poo.

This age has been by far the most fun, but it is also just as exhausting as when they were teeny tiny fresh from the hospital. The never stop moving, they are busy and always running in opposite directions. They get bored and that means mischief is on it's way. Time outs are becoming more common as they test their boundaries, but all in all I think I can honestly say that I'm having more fun with the boys than I've ever had before.