Day #2

Today was long. I mean LOOOOOOOONNNNGGGGGG. We had to wake the boys up because they were still sleeping and so not ready to get up and out the door. But we managed to get all of us, Granny Cathy included, out the door and on the road by 7am. It took us exactly 1 hour and 15min to get to the Feeding Clinic but was uneventful. The boys melted down at temperature check-in at the nurses station but that was short lived because of the awesome fast thermometer she used. (Have I mentioned how awesome this thing is????) But once they were allowed into the playroom all the trauma was forgotten and I didn't even get a hug or kiss or so much as a backwards glance and they were off to play with their new friends.

Now that we turn their feeding pumps off around 11pm every night they should be starving by 9:15am when they get their breakfast. This morning was the last time I would be involved in any feeding during the day (except on the weekends and dinner every night at home of course) and this was to get a base line of how they behave for me at eating. First up was Evan and it did not go well. He was happy enough, but he could hear Cameron hysterically crying in the room next door and was distracted by that. Also, they put him in a small little desk with a tray much like a mini wooden school desk built for his own small size, so he didn't understand that this was time to eat. I told the therapist this and she said that it shouldn't matter, he should in theory be hungry enough to not care where he sits. Not sure I agree with that since he does not associate the pain of an empty belly with being hungry and the action of eating to satisfy it, but what do I know?

He drank a tiny bit of Kids Essentials vanilla flavored formula, and I know he doesn't like it. I don't like vanilla flavored stuff either, it's just too cloyingly sweet to me. I offered maple syrup flavored oatmeal and he was not impressed with the smell and refused it, but did not gag when I managed to get a tiny swipe from the spoon on his lips. Then I offered him some dried Cheerios, but since I've never given them Cheerios because they are harder to eat than Baby MumMums and Cheetos and actually require more ability to chew, he thought they were a toy and didn't know what to do with them, even after I showed him how I could eat them and let him feed me a couple. But he never broke down upset, even though the therapist was in the room with me and watching.

Then came lunch at 11:30am and this time I fed Cameron. He was clearly exhausted and looked very nervous. They had been in another room for the first time with a guy playing some musical instruments and singing nursery rhymes to the kids. This in and of itself doesn't sound like a big deal, and apparently Evan loved it. But I know my little chicken Cameron and I knew when they told me what they had been doing that the loudness of real instruments playing in close proximity would scare the crap out of him. He startles very easily, and takes a long time to get used to things like motorized toys and loud unexpected sounds. So when he saw me he was more than happy to have left the group in the music session.

For Cameron's lunch he had mac & cheese (one of his new phrases) and actually managed, after MUCH cajoling and singing and stirring, to take the spoon from me and scoop up some noodle and put it in his mouth, chew and swallow without issues. I could actually hear the observing therapists on the other side of the mirror talking excitedly, so I knew this really impressed them. I also offered him two Ritz crackers which he would only lick, and some butternut squash which he pretty much threw up in the air with an angry face. Cameron also refuses to wear the bibs they provide. The bibs are actually towels with a neck hole and a velcro tab at the back of the neck. The towel bibs are big and cover the whole body and shoulders and most of the arms. On the back of the towel is some waterproof fabric. Really, these are the perfect bib, but I can see why Cameron gets a bit upset since they are institutionally washed and a bit rough and covers all of him.

Evan's lunch pretty much didn't happen at all since once they put him in a highchair he was falling asleep sitting up. Who can blame him? He's been up since 6am and has been overwhelmed with all the toys and the new kids and the activities they do all day. By 11:30am who cares how hungry you might be, if you're tired you are tired.

Then the next event was at 3:15pm where we observed both the boys getting their snack in different adjoining rooms with us in a middle observation room watching through one way mirrors. This is interesting because we run from one mirrored window to the other watching one feeding sessions for a few seconds, then switching places. During this session the therapists fed the boys. Dale, the ST, had the best success with Cameron and got him to eat some vanilla pudding, several spoonfuls of peach syrup (his current favorite food) and a tiny piece of actual peach, and to kiss several times a large off-brand cheese puff. He also willingly drank some of the Kid Essentials vanilla milk offered both by straw and by open cup. The ST was very pleased with Cam's beginning open cup drinking skills. I congratulated Dale on getting a good feeding with Cameron on the first full day, and told him that no one else other than myself has ever had such a good response with getting Cameron to eat.

Poor Evan on the other hand probably could have napped for 4 hours, but only got to nap for 3 hours. And it really showed. He had huge bags under his eyes, his color was off, and he hadn't pooped in 36 hours. I would be grumpy too. The technician working with him on his snack time feeding was really sweet and very encouraging and cheered every single positive and active reaction or touch with the food. But no matter what she tried nothing worked. He would only take a few small sips of the Kid Essentials vanilla milk and even refused to hold a pretzel in his hand. He did push away the little chunks of peaches with his knuckles and she cheered him for touching the food. I felt bad for the therapist because she was really encouraging with Evan and he was not nice to her, giving her all kinds of frowny pouting faces. After snack time it was time to collect the boys and that's when Evan had his big poop and his mood was much better, though he was still exhausted and grumpy.

Our commute home was pretty miserable, taking two whole hours to get home. The boys were awesome even through our very long commute and never once dozed off though I really wish they could have snagged a little cat nap on the drive. Once home we rushed to wash the boys up, give them their evening meds, put jammies on, attempt to feed them. The dinner session was pretty good for Cameron who ate one 1/4 of a slice of hot dog, which is about the size of my pinky fingernail. Evan ate nothing and was in a general zombie like funk. And that's when we said it was time for bed at 7pm. No fusses or issues from the peanut gallery on this, but as Cameron's been having a last minute poop just after we put him down every night he was up causing mischief until about 8pm.

Now I am getting things ready for tomorrow and will be taking the boys by myself as of tomorrow. Drew will go back to work, my mom staying home, until the last week of the program when we all have to be trained on the protocols of how to feed the boys. There is a ton of time during the day where there is nothing for me to do, so I have been planning on a few things and will probably post about them as time goes on. For now, I just need to get myself in to a groove.

We did get Cameron's first Feeding Procedure guidelines which is basically just a written set of team rules as they apply to feeding Cameron so that each person working with him follows the same steps every time they feed him. These steps or guidelines are subject to change at any time based on the positive reactions that we get from Cameron. Here's the exact list that we were provided today (and will likely change a tiny bit every day once the data is compiled and reviewed) of how every single feeding session will be done step by step regardless of which therapist is feeding him:

1. Precautions: Standard aspiration precaution
2. Parent Training: Parents observing through one-way mirror. Please get parent from waiting room and have them observe in observation room prior to getting the child from playroom. (Wherever possible the staff will try to put me in the feeding room with one middle observation room so I can sit in the middle of each room the boys are in and watch both sessions taking place at the same time. Otherwise I will be sitting in a dark, warm, relatively silent room watching them feed my uncooperative children individually which will be rough.)
3. Position: Highchair or booster seat with tray.
4. Equipment/Modification: a. Utensils: toddler spoon, yellow chewy tube, open cup with straw; b. social reinforcement (praise, encouragement, songs, imitation from therapist), small toys, books, and musical toys allowed throughout feeding session.
5. Diet: a. Food Source: Provided from kitchen; b. Texture: toddler diet (because Cam has shown preference and ability to deal with solids); c. Liquid: thin liquids; d. Food Allergy: none known.
6. Feeding Schedule: a. Breakfast 8:15am lunch 11:30am snack 3:15pm dinner at home;
b. Meal duration 30min or until portions are consumed; c. Meal termination criteria: 10min of intensive crying (yeah, this is what makes it so rough)

Oral motor exercises: Chewy Tube, Bite down laterally on the chewy tube ten times each side. Encourage consecutive chewing motions. (No idea how the therapist is supposed to get my two year olds to do this.)

Reinforcement contingencies: Continuous access to reinforcement. The child is able to play with the toy throughout the meal regardless of his behavior.

7. Feeding techniques:
a. Obtain meal from refrigerator, weigh foods and heat as needed
b. Set up treatment room with appropriate chair, towels, toys and food
c. Get child from playroom and wash hands prior to meal
d. Allow child to play with small toys throughout meal to distract him.
e. Begin by offering BKE (aka Kids Essentials formula) from open cup with Straw, you may offer sips of liquid throughout the meal as well.
f. Next offer dry spoon, try for 5 accepts.
g. next offer pureed foods from a spoon, place very small amount of food on the spoon
h. hold spoon steady in midline and don't remove spoon if his is pushing it away. Slowly move it towards his mouth until he opens to take a bite. If he does not open to take bite after 3 attempts, try working on getting him to kiss the spoon to get some on his lips. The goal is 5 bites.
i. Next offer the soft solid food, complete touch and kiss process with this food.
j. complete chewy tube exercises as described above.
k. Next offer the crunchy food. Cameron likes to hold these foods and will lick, but use the terminology "touch", "kiss" and "lick". Try for him to complete each 5x. Encourage him to take a bite if he does well with touch, kiss and lick.
l. Total all data and re-weigh food.
m. Data sheets are kept in the file drawer in the hallway.

During the feeding session there is a check sheet of these steps to count each positive outcome for each attempt and room for notes from the therapist, who will track them as they happen. During the process they are face to face, within arms reach, and very socially interactive making sure to look the boys in the eyes and keeping happy encouraging faces and tones. Also, they have arms of steel because when Cameron and Evan don't want something in their face like a spoon of food, they are very strong and can shove really hard. The therapists don't even budge when they are pushed. I was very impressed at how patient they are and how creative they can be while not being over-the-top with their distractions. It's VERY difficult to not hit the speaker button and tell the therapist "he won't like that" or "hold the spoon the other way, he'll respond better" or something equally anxious. They know what they are doing, but I know my kids.

So now I'm exhausted and getting ready for day #3 on my own of approximately 29 days of this program. Lets hope that the boys find their groove, start sleeping better earlier, and stop vomiting during their night time boluses.

As a side note of cuteness, Cameron is so much like his mother. He's full on talking in his sleep. Just now when Drew went to turn off his pump and unplug his tube, Cameron said to him, "On off on off!" and "Dumpy truck! Dumpy truck!"