Feeding Clinic Day #1

Today we started our first feeding clinic at Mt. Washington Pediatric Hospital's outpatient feeding therapy program. We intentionally skipped the boys morning bolus feeding at 7am so they would be extremely hungry when it was time to eat for the evaluation. We had to be there by 8am and once we muddled our way through down town inner harbor traffic and a couple of wrong turns we were just 15min late. When we arrived we had to sign in and wait for someone to escort us to the clinic to start the admissions process.

While signing in we met another dad, we'll call him "David" who's two year old son we'll call "O" has been in the program for only two weeks. David said that in those two weeks O went from eating nothing to starting to eat several things and that he really was happy that it started happening so early in the six week program that it was worth the one hour one way commute from Bethesda to drop him off before heading to work. David could not say enough nice things about the program and the staff. This is very encouraging because I have been struggling recently with hearing the feedback from many parents across the country who've had children go through similar programs, and in particular one person who I met online who's daughter went through the same program this past fall with little to no success.

Once we were in the actual clinic we had to fill out a bunch of admission papers and then have the medical staff take the boys baseline vitals. This is always a traumatic experience, and today they really let us have it. Any time you have to disrobe the boys, or even if they see the doctor's bench with the paper across it they instantly become upset and start crying and screaming and trying to get away. All we need to do is weigh them without clothes wearing a dry diaper, take their height, look in their ears, and the worst is take their temperature.

* As a side note I must rave about the thermometer that the nurses use here. This thing takes an accurate temperature reading in under 8 seconds! And since it's an temporal arterial thermometer the boys can fight all they want but all you need to do is swipe it across the forehead, down the temple, behind the ear to under the earlobe and VOILA! Temperature is taken! And the thing is pretty cheap, about $35, if you have issues with getting a kid's temperature like I do. Here's the product:

http://www.exergen.com/medical/TAT/tatconsumerpage.htm

We met with the Director of the program Dr. Katz who is the GI specialist, the program manager, a psychologists, a behaviorist, the GI nurse practitioner, the dietitian, two OT therapists who will be primarily feeding the boys, a speech therapist, and the head nurse in charge of taking vitals and administering feeding pump sessions.

Once the boys were admitted and calmed down, Drew and I took the boys to a feeding room where there was a one way mirror and a video camera set up. The feeding therapy session was recorded so that we can use it for review and comparison throughout the program. Pretty much they ate nothing, worse than usual in fact. Cameron, quick as a bunny, managed to stuff one whole entire Ritz cracker in his mouth and get it stuck behind his top teeth so that I had to go in and pull it out. Evan played with his food too and drank his milk. But for the most part nothing measurable aside from milk was eaten and all of it ended up on the floor and the wall. I dropped the boys off in the playroom with the 8 other kids in the program who were working on an arts and crafts project (making Diego pinwheels) and they didn't even care that I left them in a room full of strange adults and kids. I have no idea if they were even upset that both had a dirty diaper and that a stranger (one of the playroom nurse technicians) changed their diapers for me while Drew and I were meeting with the director. I never heard a peep from them and I was just across the hallway listening for their cries. That they had a great time in the playroom made the day successful. Cameron was so tired that when we went to peak in on the boys to see how they were doing before actually collecting them to go, we found half the kids sleeping in cots, half playing quietly or watching Diego. Evan was in the arms of a technician watching TV while Cameron was in the middle of the room on the floor laying on his belly sound asleep snoring away.

After our baseline evaluation of their vitals and feeding demonstration and being asked about 10,000 questions by all 10 feeding team members about eating, lifestyle, behaviors, our concerns, our expectations for the program, and different therapies we've tried we were presented with a written list of long term goals for the next six weeks:

1. Increase solid food intake to an average of one ounce puree/soft solids per meal.
2. increase liquid intake by 50% over 2 day baseline.
3. demonstrate appropriate self-feeding skills with utensils 10x per meal.
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.

The short term objectives for our first week are:

1. Therapist-fed baseline to be completed.
2. Parent-fed baseline to be completed.
3. Feeding protocol to be developed.

Each week we will have a family / feeding team meeting to review the weeks goals and achievements for each boy separately, and determine the next weeks short term objectives.

Tomorrow we begin with our standard daily schedule which is

8:15am Nursing check in
9am Feeding Treatment
10am Group Play Therapy (usually involves motor skills)
11:30am Feeding Treatment
12pm Nap or Structured Play (they will have cots assigned to them)
2pm Playroom activity
3pm Feeding Treatment (snack)
4pm Day Program Closed / Go Home

Tomorrow we will be feeding the boys breakfast and lunch, and then the therapists will feed them their afternoon snack. Then we will feed them dinner at home. Each and every time we feed the boys we are supposed to try (within reason) to measure each food item they are offered before they eat it, and then any remainder that is left over remeasure so we know down to the ounces and grams how much they have consumed. This will eventually allow us to cut back on the volume of formula they get through their feeding tube. The program even provided us with a scale for measuring and a chart to write it all down and turn in on a daily basis. Each day I will be sitting behind one way mirrors observing as the therapists work with the boys on positive reinforcement to eat on a one on one basis in separate rooms. And each day I will go home hopefully with some new tactics to keep them eating. The last week of the program each caregiver in the family, including our OT therapist from Early Intervention (EI) who has been working with us for the last year, must attend a session or week of sessions (depending on how involved they are with the boys eating) to be trained on all the techniques that work for them.

The one thing that is interesting about the days meetings was that EVERYONE we met was shocked that both boys have been struggling with these conditions identically. And it is an agreed toss up as to how much of what is going on now is medical (severe reflux) and behavioral and the unavoidable co-dependency of their sibling's issues and behaviors feeding off of one another. Either way, all the therapists and doctors we met with today all seemed very positive and up beat about the upcoming six weeks.

I will try to post every day, as the day progresses so I can share with those of you out there who are searching for experiences with feeding therapy and feeding clinics and experiences with Mt. Washington Hospital and their Feeding Day Program. The hospital has a Wifi system and I should be able to get on and post pretty frequently. I will most likely not be able to post images or videos because of HIPPA rules and regulations, and I will happily honor that, but if it's possible I will try to share what I can.

Thank you so much to all our friends who have been sending us all their thoughts and prayers and words of encouragement. It means so much to me that you are all supporting us through this process.

Feeding Clinic Begins

Tomorrow is our first day at feeding clinic. We will only be doing a half day from 8am to 12noon (not sure exactly why) so I will be posting an update on how the day went. Keep your fingers crossed that this works.

RIP Christophe Hissette

My baby cousin died today. He was 29 years old, eight years younger than me, has an even younger brother, stood well over six feet tall and certainly towered over me. But to me he is like my baby brother, that I spent many summers with growing up. His name is Christophe Hissette. He was smart and handsome, sweet and funny. He was so kind, and so loving and always knew how to have fun, relax and, not to be cliche because it is the truth, really live life to its fullest. You have to be to be a competitive racer.

Christophe was very tall and thin, only the second in the family to have blond hair and blue eyes. He was a race car driver and he was very good at it too. It was in his blood, it was always what he was destined to be. He'd been driving high powered supped-up go-karts and was obsessed with racing since he was as young as six or seven. He'd won so many awards and races. And he died today, doing what he loved most, racing. In the final lap of a qualifying race his car caught on fire and slammed into a wall going probably 350 kilometers per hour. He died in the helicopter on the way to the hospital.

All I can think about is the little kid I grew up with, the one who always had the Zach Morris Saved By the Bell hair cut. The kid who would try to frame me by telling his mother that I did whatever it was that she was mad at him for doing, in French because he thought I couldn't understand what he was saying, thus provoking typical brother/sister battles on long summer vacations. The kid who spoke French and Spanish and English and Arabic and thought that it was weird that other kids we met on vacations, myself included, couldn't do the same. The boy who would show me how he practiced his tae kwon do in my back yard. Swimming in pools, playing ping pong with him till the wee hours of the night, or blackberry picking on cliffs, walking on the cold beach while on vacation in Brittany. I think of the years of competitive Super Nintendo game playing when Nintendo and Super Nintendo were brand new to the gaming world and sharing one Game Boy between us. Throwing the controllers down when we lost, like we'd been playing for the salvation of all man kind and this was the Big Boss to beat. Hours and hours of Mario Kart, over and over and over. The mountains and seas of Legos we would build ships and cars together. How everywhere we went, even though he was only 7 or 8 or 10 or 11 years old, little girls would swoon over him. All the summer camps, the movies, how he used to call for his mother in a whining tone when I was picking on him and taunting and teasing him as kids. "Maamaaaaaaaa!" And I would taunt and tease him even harder when he called for her.

I'm sorry I ever teased him so mercilessly for his eating a total of exactly five menu items for his entire childhood. Knowing what I know now, I should have been cheering him on for eating at all given the fact that my boys don't eat anything. His repertoire of foods included hamburgers, specifically McDonald's, but just the meat no bread no toppings, and chicken nuggets, but just the dark meat nuggets, and french fries, seedless grapes, never liking soda or fizzy drinks as he called them (gasp!?), and always drinking chocolate milk by the truckloads. In time as an adult he became a much more adventurous eater, but his comfort foods were tried and true.

I remember the summer we spent in Quebec at a resort where we woke up at dawn, went horseback riding, hiking, swimming, canoeing and sailing, played tennis, and then came back to the house for dinner and then went to bed without a peep because we were so exhausted from the days activities, only to get up at dawn the next day. I remember many times sitting together on the floor eating our cereal watching Saturday cartoons and always agreeing on watching The Smurfs because they also translated from French into English so we both understood what was happening. I remember riding horses and splashing in the pool during a long summer in Spain. How he slept like he was running a marathon, always moving, and how that makes me think of my Cameron who does the same thing. How we spend a vacation in Mexico and would walk around at night watching the bats dive and swoop over the pool. How he would always eat the orange ice pops and I would always eat the cherry ones, and there would be a box full of the unwanted green ones left in the freezer. How he adamantly refused to learn how to tie his shoe laces, because velcro sneakers had just come out and why would he need to tie anything if we now had velcro?

I'll never forget the shock of seeing Christophe for the first time after having not seen each other in over ten years. The last time I'd seen Christophe as a kid I still towered over him, but the last time I saw him ever as an adult he towered over me. I didn't even recognize him had I not seen the devilish grin and smart ass mischievous glint in his eyes as he picked us up at the airport. It was surreal to be able to go out to a bar with my baby cousin and get hammered together and stay out all night long. And I regret that life, time and distance kept us from ever rebuilding our lost relationship as cousins, as adults and friends. That we will never get to start it all up again. Christophe has turned out to be an excellent big brother to his little brother Sebastien. And his parents. My heart breaks for them. I don't even know what I could say. My breath is taken away by their loss. Our loss. I am so sorry.

It has taken me all day to figure out how to absorb and put into perspective the news that Christophe is gone even to put into words to talk to friends and family about what has happened. And I think it will take much longer to come to terms that he is gone. We love you Christophe with all our hearts and hope that you always knew that.

This is the news article and comments of friends and fans discussing his passing. He was amazing.

A few pictures I was able to find to scan in, we didn't take many photos when I was a kid. I'm sure there are many more, this is what I could find tonight.

Green Bean!

The last two days have been miserable nap and sleep days, filled with lots of reflux vomit for both boys. But tonight, even though the boys had slept less than 30 minutes all day, they tried their first green bean. Not that we haven't offered them before on lots of occasions. Usually they just turn up their noses and gag, never willing to touch it because it's slimy. But tonight Cameron stuck a whole green bean in his mouth mushed it up and swallowed. And he liked it!! Evan was willing to hold it to his lips and pretended to take a bite, then pretended to chew. We are soooo ready for feeding clinic.

On another note, our GI is nuts and has retracted her orders to get the boys onto 3 or 4 bolus feedings a day to get them off overnight feedings. Now she wants them to get all their pump feedings over the course of the ten hours of sleep overnight and only one very small bolus during their naps in the day. The idea being that they will be the hungriest during the day. I'm a bit pissed off about this, because we worked so hard to get them to do these boluses. And now we have to go back to overnight feedings? More reflux vomit in their sleep? More bad sleep and early wakings and early morning poopy diapers? And if this was the plan knowing that the feeding clinic will likely be putting us on this schedule, then why not have us doing this all along so that maybe Cameron and Evan would have started eating solid foods two months ago and we wouldn't be needing feeding clinic as a lovely cost of $16,000.00????? I can't wait to kick this doctor to the curb. But even more so, I can't wait to get the boys eating real food like normal kids.

Cameron is in luuurrrve!

Tonight we had another local preemie mom Katie come to the house with her little boy Brendan so my awesome hubby could maybe try to help her with her statistics homework. We see them every week at play groups and other GTG but they've never come to the house before. The minute Katie'd come into the playroom with me and the three boys (her son and my two) and all of the sudden Cameron could not get close enough to her. He was patting her arm softly, stroking her hair and saying "soft" and "pretty", getting up right in her face and rolling his eyes and batting his eyelashes at her. He practically pushed her own son out of her lap so he could snuggle up to her and say "I of you!" and writhe around like he was in heaven laying on the most luxurious seat ever created. Later, when it was time to put the boys to bed Cameron made himself so upset about leaving her that he threw up. That's true love and devotion! Too bad Miss Katie is already married. If things don't work out with her current man (Sorry Mr. Devin), Cameron is ready to try and step up to the plate.

Evan really just desperately wanted Brendan to pay attention to him and tried some similar Cameron-like tactics like smiling right in his face, pointing at the picture on his jacket, playing with the toys Brendan was looking at, and following him around. He was sure Brendan was there to be his bestest buddy for life. But Brendan was far more interested in the Legos and left over birthday balloon. Ah love, it's in the air!

Toddler Activity - Finger Grasping

I can't take credit for this activity, one of our OT's does this during our gym play group, but the boys LOVE it and it's so easy.

Go to the grocery store and take two 1 quart soup containers (preferably clear or translucent plastic) from the soup display counter and matching plastic lids. Cut a star (*) into the center of the lid making sure to cue off any sharp corners. Pull out the play puff balls from your arts & crafts kit, or any short wooden dowels or even crayons, poker chips or bingo chips. Place one or two on top and show them kids how to poke the item (puff ball, wooden dowel, bingo chip) into the container through the star you cut on the lid. The different sized and different textured items you can find the better as this will encourage the different kinds of finger grasps needed to play. You can do several different sized containers and you can do sorting by size, shape and color. Set them down at the table before dinner to keep them busy for 5 to 10minutes while you get things ready. If your kids are more advanced you can buy smaller toys and even a bag of googly eyes to use as the item to stuff in the containers.

Here's some pics of the set I made, I'm still looking for bingo chips but can't find a store that sells them.


Please feel free to pass the idea on. And share your ideas, I'd love to hear them!

Hot Dog!

I think this video tells it all....

Cameron's first willing eating experience with chewing and swallowing meat. Evan's first experience willingly tasting meat. Hot Dog! Our best eating day EVER!



There's so much to post about and I've hit a bout of writers block and we've been so busy that I have barely uploaded photos from my new camera. But I've got some good ones. They'll be up soon.