Scoo Bus! Shayer!

Cameron’s favorite toys right now are busses, construction trucks, motorcycles or bicycles, and airplanes. And since we have been spending a lot of time in the car lately he sees these vehicles everywhere. Honestly he must have the eyes of a hawk because he’s constantly screaming “Look!” and then scream the appropriate name for whatever vehicle he’s spotted. I often have to look around, even peak in the rear view mirror because it hasn’t registered to me that one of these things has passed in our line of sight. I’ll be peering around searching for the thing he’s screaming about and telling him that I can’t find it and in my head I’m thinking he must be hallucinating. And then sure enough just as it’s almost out of sight I spot the thing he sees.

These vehicles are such an obsession for him right now that even last night while sleeping he called out, “On of f on off! Dumpy Truck!”. Because we are traveling through downtown Baltimore during rush hour we see lots of these vehicles everywhere and he gets so excited. Now we are helping him distinguish between the different kinds of busses and trucks he sees because until now he really hasn’t understood the differences. All busses regardless of their size and appearance and color are school busses, and all construction vehicles whether they are diggers, front loaders, rollers, or cranes are all called dump trucks. And his “accent” is so adorable. The words are pronounced Scoo Bussss = School Bus, Cibby Bussss = City Bus, Dig Er = Digger, Crwane = Crane, Dumpy Truck = Dump Truck, Air Pwane = Airplane.

Another fun thing the boys are doing is finishing sentences from books that they know and love. They have memorized books such that I can say a line from a book, pause before a key word and they will fill in the blank; often saying it in unison. For example:

Me: “Wow said the Owl, when she saw the leaves on her tree were ____?”
Boys: “Gweeeen!” (green).

And they can do more complex responses.

Me: “Wow said the ___,”
Boys: “Owww - Hoo hoo!”
Me: “as the rising ____ …”
Boys: “Sun!”
Me: “…showed through the _____ _____.”
Boys: “Morning Missss.” (morning mist)

We’re still working on taking turns with things and for the most part they are okay when I tell them that “It‘s Evan‘s turn.” or “It‘s Cameron‘s turn.” though only when it is adult directed, as all adults are the ultimate referees. But we’re also working on the concept of asking to Share. It is a very complex process to figure out how to say a new word, communicate it to someone who has what you want, and then to wait very patiently until they understand and are willing to relinquish said object within an acceptable time frame. Right now the boys know to say “Shayer!” (share) and pat their chest in sign language to symbolize the words “me” or “my turn” and then rub their chest in sign language while saying “Peeees!” (please). But the problem really occurs when for example Cameron has a beach ball and Evan walks up to him and says “Shayre!” and pats his chest and then reaches to take the ball. They are suddenly then in a contest of wills to see if Cameron really doesn’t care about the ball and will give it up or if there will be a stalemate because he doesn’t want to share his ball. Last night in this example Cameron did not want to give up the ball so the boys stood in the middle of the room in a perfect stalemate, each holding the same ball, frowning at each other saying “Shayre! Shayre! Shayre!” to each other.

It’s so hard not to laugh when putting the ball in time out.

Day #3

We left the house at 6:50am and got in the parking lot of the hospital at exactly 7:45am and were there before most of the staff arrived. There was NO traffic this morning. That was a nice way to start the day. Cameron had to be woken up this morning, but Evan was awake at 5:30am because he peed out his diaper and was cold. Poor kid tried to fall asleep in the car, which would have been perfect, but the sun was just too bright and there was too much to see riding in the car so he never managed to doze off. I’ve already warned the feeding team that he will probably collapse in a sleepy pile when they put him in the highchair for lunch at 11:30am.

This morning’s arrival in the clinic was great because the check in nurse was running late and we were told to skip the weigh-in until later in the day, so this gave the boys about an hour of playtime before we started their breakfast sessions at 9am. I was surprised that they did this, because no one checked their temperatures this morning until the weigh-in, but thankfully I know that neither had a fever this morning. At breakfast sessions I observed only Evan because Cameron was in a different room not adjacent to us.

Evan refused his milk formula, yogurt, and scrambled eggs. He did entertain the idea of Rice Krispies cereal by picking up one dry grain of the cereal, lift it to his mouth, open his mouth like he was about to pop the grain in and eat it. But at the last second he let the grain drop from his fingers and went back to playing. Like Cameron, Evan’s feeding protocol (which I will have a copy of posted today, though I expect it will be pretty much the same as Cameron‘s) allows him to have any toys he wants throughout the feeding process to use as a distraction and a soothing method.

Cameron refused his milk formula, but did take 4 bites of yogurt from the spoon held by the therapist, though he made a face indicating that he didn’t really care for it. He also nibbled on a fruit loop cereal, though I don’t know if he actually ate one whole loop or just took a nibble. Either way I’m happy with that. Cameron was also offered his first French Toast sticks today and while he didn’t eat any, they did get positive reactions from him because he voluntarily touched the sticks and even let the therapist put one to his lips to kiss it.

One of the first surreal things about this whole experience is observing the boys through a one-way mirror. Often the boys will look at the mirror and you would SWEAR that they are looking directly at your eyes. It’s creepy. I know they can’t see or hear me, and I try very hard to not let them see me throughout the day, making sure I always peak around corners just in case the kids are in the hallway being transported to an activity, or if the playroom door is open with someone passing through and they might catch a glimpse of me. When we arrive as long as they see their toys in the playroom the could care less what happens to me and don’t ever ask about me throughout the day.

The other surreal thing is to meet other parents of the kids in the program and more specifically sit in a small dark room watching our kids through the mirrors and listening (because it‘s impossible in such a small space not to hear what is being discussed) to what the issues and treatments are for their tube fed kids. I have not met many yet, but am certain I will over the next six weeks get to know them. There are about 10 kids in the program right now, all of them are tube fed somehow and in varying degrees and with different conditions. There is a list in the kitchen that is visible through the door window that has all the kids allergies for the staff to be aware of. Some kids lists are frighteningly long and specific. I know at least one kid is a transplant patient, one has an unidentified mystery swallowing problem, one is autistic, and that’s about all I know. We are the only twins, the only ones with more than one kid in the program at the same time right now (though I think they have had siblings in the program together but not twins). I don’t look for the info on the kids but it’s not possible to not know some things through passing in close proximity. Hopefully we will make some friends, and at least so far I have met three parents who are happy with their child’s progress.

Edit Update: I did get a copy of Evan's feeding protocol, and it's pretty much just like Cameron's with just a few changes.

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!"

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.