Maybe his pallet is too sophisticated for Mac and Cheese

The last few weeks have been trying. Evan has been difficult to put it mildly.

It's a constant struggle balancing my need desire obsession with calories. The nutritionist we saw for years told me upon release from GI clinic, that to continue to grow Evan needs to eat 1600 calories a day. That's a lot of calories.

Intellectually I know that kids this age wax and wane when it comes to eating, and that is normal. Since eating with Evan has never been normal it is hard to let go of my need to get calories in to his little body.

I use little tricks to get extra calories into him everyday, extra butter, olive oil, at 360 calories a bottle, Boost Plus is my best friend. It is really a tight rope act, fitting in snacks would add to the calorie count for the day, but with Evan's limited awareness of hunger, any snacking ultimately causes him to eat much less at meals. I'd love to get more fruits and vegetables into his diet, but they are so healthy, low calorie and filling. I'd rather he eat more high calorie items. Like chocolate cake with chocolate butter cream icing.

I understand that kids at this age will eat the majority of what they are hungry for in the first fifteen minutes of a meal, BUT, Evan eats SO SLOWLY that fifteen minutes adds up to about fifteen calories. So I make him sit there, until he eats what I think is enough, as I do mental calculations of the total calories for the day.

I do have to force myself to remember that a year ago he was still eating baby food, and I was pretty certain that he'd be heading to college with pallets of mashed sweet potatoes. I really should not complain. I really cannot complain. But after two hours of him sitting with one tiny little piece of french toast in front of him, or two tiny little pancakes, or four ounces of spaghetti, I'm pulling my hair out, he's frustrated, I'm frustrated, no one is happy.

Then he has breakthrough moment like tonight. FIVE lobster raviolis, Alfredo sauce, less than 30 minutes. (that's a ton of calories!!!) I do my happy dance and wonder. Lobster Ravioli? What other odd things should I be trying?

He's a normal kid.

I've been asked to speak to a group of parents who have kids with eating issues. You know, since I've been there and back. I have more than a month to think about what to say, but for some reason I'm already at a loss for words.

It's not like we came up with the "cure", it's not like anyone could replicate what we did to finally get Evan to eat. So much of me believes that it was just Evan FINALLY deciding it was time, I don't want to tell these parents that. Some of these people have it even worse than we did. I want to offer them hope.

Hope that one day their kids will say to them, "this is yummy!" or "I like this dinner" or "More please". Each time in the last few weeks that these words came out of Evan's food stuffed mouth, I've felt such elation, and such relief.

And then we have those days. Days when Evan won't eat anything. And the worry and the doubt creep back in. Uh, oh, what's wrong? Is he slipping? Are we going to have to start OT again? Sometimes I have to kick myself to remember that regular kids do that. They just don't eat, and then they suddenly eat everything in sight. I have to REMIND myself that I have to think of Evan as a regular kid.

And then he will shock me by eating twice as much as his brother, and being super adventurous. (for a kid) He tries anything. He eats slower than a snake digests a meal, but he is eating. I have to remind myself of that little fact.

I have to remember that only a few months ago, he would only eat baby food, and now he eats, or doesn't eat, what ever I am serving. Just like a normal kid. (it makes me giggle a little just to type that!)

Discharge: in a totally non-yucky context.

Today was a big, big day in our household. After YEARS of Occupational Therapy, hours of one on one and group work, and countless gray hairs, we have finally been discharged from feeding group. Yes, did you hear that? I should be shouting from the roof tops!

WE HAVE BEEN DISCHARGED FROM FEEDING GROUP!!!! WE DO NOT HAVE OT EVERY WEEK ANYMORE. EVAN IS EATING LIKE A NORMAL CHILD!!!!!!!

Two years with Miss Terri, once a week, an additional weekly session with Miss Stacey for six months of those two years. Six months with Miss Kim and Miss Suzie in feeding group, and we are done. D-O-N-E. Done. Seriously.

Evan has been eating regularly for about 3 months now. I know I documented the start of it here. And while I may not have been diligent about updates on the eating front...lets just say that Evan has been consistently eating everything I put in front of him. From pancakes to pizza, from BBQ ribs to chicken satay, from chicken masala to tacos. He *is* "Lightning McQueen the eating machine" as he was dubbed by Grammie. Some days he even out eats Ryan, which is quite a feat for that boy can put it down. (I may have also subconsciously avoided talking about it here for fear of jinxing it!)

I've continued to challenge Evan with different textures and tastes. He has risen to and well above the challenge. Yay Evan!

We have been laughing at group because now the kids just eat everything. In all sorts of random combinations, hot or cold, crunchy or squishy. Six months ago, it would take Evan the entire hour to swallow one bite of pasta. Three months ago it took fifteen minutes per bite. Today, he ate a hot dog in a bun in five minutes. (And then proceeded to eat a taco and some ice cream.)

It's been coming for a while. We've are approved for sessions in increments of 6, and this was 6 of 6 on this authorization, so we were pretty sure this was our last day.

At the end of group our Therapists, Miss Suzie and Miss Kim presented Evan with a certificate of completion.

I should have posted pics of the actual certificates, but Evan's says:

"Graduation Day Presented to Evan for successful completion of the Little Steps for Little Feeders!"

That's it. We have matriculated.


Ryan, who was not really a patient, also received a certificate his says:

"The supportive Big Brother Award presented to Ryan, with appreciation for your unwavering support of Evan through Little Steps for Little Feeders."


We had a few last words to say,


some smiles and hugs,



high fives for Miss Alison,


and the other Miss Alison,


and that is it.

Another chapter of our preemie-hood has been completed. We have successfully navigated this eating challenge and now Mommy and Daddy just have to remember to treat Evan like a normal kid. It's hard not to be obsessed with food and calorie counts with him, but with each passing day and each passing meal it gets easier. (especially when he eats half of a Phil's pulled pork sandwich, and a few ribs in a single sitting.)

I want to thank all of the therapists, doctors, and support people who have walked this journey with us. All of our supportive family and friends, who have encouraged, cajoled, bribed, made up silly songs (we still sing the pasta song Eric and Mary), and what ever you did to help us get to this point.

Now...

who can get them to eat their vegetables? Anyone? Anyone?

Really? Hot Dogs?

Just before I left on my little kayaking adventure we had an appointment with the Feeding Team at Children's. We met with a Psychologist, Dietitian, GI nurse, Speech Therapist, and Occupational Therapist. The boys and I had a "typical" lunch except it was filled with foods that Evan would eat, and some that he has trouble with. After our lunch we all sat down and talked about what they watched. Much of it was the same stuff we've been hearing for the last 3 years. Many of the suggestions were those that we have tried countless times. Not much new. It was finally decided that we should eliminate most if not all of the baby food. We could offer it on the plate with the actual meal, but no more 12 ounces of baby food following whatever he chewed and swallowed. We should also offer him a liquid to help him wash down what ever food he was eating. The average child swallows every 30-40 seconds, with Evan, it is more like every 5-10 minutes. A reminder to use the water to help him swallow every minute or so in hopes of getting his rate down around normal.

I then left on my trip so implementing this plan would wait until I got back.

We had a couple of rough meals. Evan started spitting out his bites again, and I was getting worried that this new tactic would backfire and find him not swallowing anything again. During a particularly difficult meal I had to resort to some very desperate measures. I told Evan that if he spit out any more food, I would put Ringos in timeout. He of course, spit out his next bite. I of course picked up Ringos and put them in my room. Evan, cried. I then gave him the opportunity to "earn them back". Evan promptly swallowed every bite. I did have to take
Ringo to time out one more time that day, but since then he has not spit out any more food, unless he has had it okayed by one of us. (sometimes the bites are just too big) So all week we've made some progress. 1/3 an egg. 1/2 an egg. 1/2 a slice of pizza. an ounce of shredded chicken. cream of wheat.

But what I really want to talk about is this major breakthrough we had this weekend. The boys were having chicken quesadillas, and Scott made some hot dogs for himself. Evan started screaming that he wanted hot dogs too! Okay, so Scott made him a hot dog.

HE. ATE. THE WHOLE. THING.

The whole freaking hot dog! and one of his pieces of quesadilla!

He has now requested a hot dog at every single meal since, and well, at least he is eating. Would I prefer that it was a nice chicken breast? or some steamed veggies? YES. Am I going to push the issue or let him eat hot dogs and eggs for breakfast? (Yeah, who knew hot dogs are the new bacon.)

I'm just going to be thankful for what I think is the light at the end of the tunnel, but I will be making my way to Trader Joes to pick up some nitrate free hot dogs today.

If I needed confirmation...

Yes, these kids are mine.

They love Taco Night as much as I do...

Ce-le-brate good times, whoo hoo.

It's a big day around here. Three years ago today Ryan and Evan made their grand appearance into this world. At a whopping 955 grams a piece these two little fighters defied all of the odds to just survive their first week let alone make home.

Today we celebrate their third birthday. The third year of life. Three years of laughter, love, tears, tantrums, hugs and kisses. Today we celebrate life.



And tell me aren't those the faces of boys that know how to celebrate life?

Saturday is the big party, but there was cause for celebration today, not just the whole birthday thing...

See this plate with a piece of pizza? The child's spoon is in there for size comparison.

It's small yes, BUT........



This is what the plate looked like after Evan worked on it for 45 minutes. That was THE MOST he has ever eaten...EVER. (I'm tearing up just writing about this) He did not want to stop eating his pizza. Every time I suggested we move on he covered his plate with his hands and said no. He just kept putting bite after tiny bite into his mouth and swallowing and swallowing. I don't know what, or why, or how. I'm knocking on wood, holding my breath, crossing my fingers. And baby, I'M CELEBRATING!

E is for EATING

I've been hesitant to blog about this, because you know, as soon as you put it down, it goes away. So that sound you hear while reading this post, it is me knock, knock, knocking on wood.

Right before Christmas Scott got the bright idea to try M&M's with Evan. We've tried bribing him to eat with them before, but he wasn't interested (clearly not my child).
For some reason, it worked this time. He started swallowing them. Granted they had liqufied into chocolate spit by the time he swallowed, but he swallowed.

Since that day, Evan has been swallowing small, miniscule, sized bites of food. Even while he was sick and coughing, over the holidays, he continued to try to swallow bits. We were able to get him to swallow by offering M&M's if he did so.

While we were building our trains for Santa, Evan put a fist full of M&M's in his mouth and swallowed them all. All the while we were away, Evan had a great cheering section for his swallowing successes, which bolstered his ego, and made him excited to keep trying to get cheers.

This week Evan has really done some fantastic stuff. He ate one whole piece of penne. In 6 or 7 small bites, but that also means he has swallowed seven times in one sitting. At OT one day, he licked his plate clean. He's eaten bites of quesadillas, salad, cuban flank steak, raisins, cheerios, cookies, goldfish, and more.

He is certainly no where near sustaining himself on real food yet, but he is making progress. Two long hard years, weekly, and bi-weekly OT sessions, three times a day encouraging, and cajoling, begging and pleading. Cleaning up vomit as much as six meals a day, and we are finally making progress.

What is it? He finally wants to eat? He isn't as afraid anymore? He's outgrowing his memories? Or the healing powers of M&M's? I tend to think its those delightful chocolate candies that melt in your mouth, not your hands.

The more things change, the more they stay the same

I just realized it has been more than a year since I started this blog. Wow. Lots of changes since last year. In many ways life is easier. In many ways it is harder. In many ways it is the same.

Easier: Um...let me think for a minute. Okay, okay.

Communication--It is much easier to communicate with the boys. They are extremely verbal, and quite opinionated. I certainly know where I stand at all times.

Movement--It doesn't always require a stroller to go to the store. I can sometimes (if I only need one or two things seriously not more than 4 or 5 and it is best if there are two things that the boys can carry so they can "help" me and that makes sure their free hand is occupied so they can't pull everything off of every shelf we walk past.) walk in to the grocery store with the boys walking.

Harder: I'm just going to limit this to a couple.

Testing boundaries--I expected this. I knew it was coming. I know I have a couple of very strong willed kids. (I have NO idea where they get this, ) But I swear there are some days that I spend the entire day saying things like..."If you hit the glass with that clarinet again, I am going to take it away" which is quickly followed by the sound of a purple plastic recorder hitting the glass door while eyes are on me to see what I am going to do next. Which is then followed by me, taking the purple recorder away. Which is followed by screaming and crying. Which is followed by me saying "Why did you lose your clarinet?" Which is followed by "For hitting on glass" Which is followed by me saying something like "No hitting, we do not hit. Time out" (I guess on the positive side, we are understanding (0r else being able to repeat) what we are doing to get us into trouble, and eventually that will lead to what? compliance? complete understanding? impulse control? knowledge that Mommy means what she says?

Whining--Where does this come from??? If I'm not taking toys away I am saying things like "how do we ask for things nicely" or "please use a nice voice" or "I don't understand you when you use that voice"

I spend a lot of my days thinking about Albert Einstein's definition of insanity.
“The definition of insanity is doing the same thing over and over again and expecting different results” Unless you are raising children.

The Same:

Eating --Evan is still not eating. Every test in the book, OT twice a week, and in a last ditch effort another round of specialists in hopes of finding some miracle diagnosis.

The Love--I guess this isn't really the same, the love, it grows, and grows, and grows. How is it possible to love two creatures more every second of every day? Sometimes when they go to bed and want one more kiss or one more big hug, life doesn't get any better than that.

And on that note, who wouldn't love these two?

Our "Puppy" class at the Animal Center was a big hit, as were our puppy ears.

Airplanes and helicopters, talk about a boys dream.

Our turkey "art project" came out looking a little Picasso-esque, but the boys had a fantastic time and I gained some confidence in doing things like this by myself.

Don't Jinx It!

Knock on wood. and all the other superstitious things I can think of.

Evan swallowed today, TWICE.

He had some veggie stick at OT and some (a tiny, tiny bite) of pasta at lunch!

He told me, and my two witnesses that he swallowed! He was pretty proud of himself.
and we of him.

YEA EVAN!!!

and tomorrow is another day.

Weekend Wonders

This weekend there were lots of activities and action.

Saturday morning Ryan, Evan and I met our friends Tobin and Meredith at a huge Pumpkin Patch/Dairy Farm, while the Daddies went on a bike ride.

Fortunately for me, the main play area was fenced in, and when we arrived at 10, the crowds were not as large as later in the day. Why is that fortunate? Because as soon as we got through the gate, Ryan took off like a shot. (he's usually so good about stopping and freezing, listening, holding my hand) Evan in his own way was ambling along stopping and looking and generally not hurrying. I found myself in an in between. I didn't want to run after Ryan and leave Evan, who was closest to the parking lot, and the cars, and I felt helpless because I couldn't see, or catch Ryan. In hindsight I should have just picked up Evan and ran after Ryan, but I honestly didn't think he'd go so far so quickly. Thankfully Meredith was just getting through the gates, heard me screaming for Ryan, and told me to go on, she'd watch Evan.

Somehow, Ryan, must have seen the giant pile of dirt littered with all forms of dump trucks, diggers, backhoes, and bulldozers, and could not contain himself. I found him, on the other side of the dirt hill yelling "DIGGERS". He spent the next hour there, while Evan was a few yards away playing with the "ojo balls" (basketballs) I sat/stood on the hay bales in between with my head on a swivel.

This place was just too big for me to do alone. Especially after a long hard week. I felt stressed the entire time. I was never close enough to either boy to feel comfortable. I had to leave Ryan in the soccer area as I noticed Evan attempting the climbing wall. I got Evan up on the play structure, and Ryan was gone. I found him a few seconds later, and some lady said to me "oh, I wondered who he belonged to, he was trying to get into the porta-potties." Great. I slunk off muttering to Ryan.

I finally felt safe on the hay ride, both boys at my side, in a confined space with Meredith, Tobin and their friends. (This was really the only time during the day that I was able to talk to or even see the other Mom's more than in passing, as I dashed to and fro after wayward children.)

On our hayride we were fortunate to see the birth of twin calves. I didn't realize cows could have twins, I guess I should have, but what are the chances that my twins could be there to see twin cows being born? Evan seemed to be okay with the whole rope tied around the babies legs tied to a fence to help extract the cow from the birth canal. (Might be because of his own experience of being yanked out of my birth canal by his ankles?) Ryan on the other hand, lost his freaking mind. He was genuinely SCARED. It was a cry I've almost never heard from Ryan. It was so, so, sad. I held him on my lap, with one arm, and rocked him. Of course, my other arm was wrapped around Evan to keep him from jumping out of the truck.

Thankfully, after the hayride, Scott and Philip had returned from their ride, and I was relieved from duty.

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You all know our struggles with Evan and Eating, well we may have hit upon something. I'm not holding my breath, but he's saying the right things, and he may have swallowed some bagel this morning.

He really wants to go in the bouncy area at Sea World. But its only for kids between 37" and some other number that is irrelevant to me at this point. I told him he was not big enough yet, and that in order to get big and tall, he has to eat, and swallow. I gave him examples like cheerios, pasta, fruit, veggies, bread, anything that I could think of that we had placed in front of him this week. Now, every time we talk about the bouncer, we talk about getting big and strong, and how chewing and swallowing is how we get big and strong. And by we, I mean Evan.

(This also seems to be working for sleeping)

Keep your fingers crossed that we have found THE motivator for this kid. How a bouncer and not chocolate, I'll never understand. If this kid didn't come out of me I'd swear he wasn't related.

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Evan: "Hanging like Gibbon" (as he hangs off the arm of the couch)
"Swinging like Gibbon" (still hanging off the arm of the couch)
Ryan: "Eating like Gibbon" (in response to Evan)

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Evan: "I get sun stamp at soccer on grass after pa-pa-chute, sitting" (remembering events at soccer where we have not been in three or four months)

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