Eating

EATING

All is not doom and gloom around here, despite my prior post about the testing results.  While it may not have shown up on formal testing, we all know Coleman has made some progress, and we are very proud of that around here.  One area in particular comes to mind:  eating.   Ah, the trials and tribulations of Coleman’s eating history.  It’s been a bumpy road for our little man, but we have made so much progress in the past year, I have to share it with you. 

Before the Leukemia saga, Coleman ate a lot of food.  He was a chubby little baby.  He had (and still has) many GI issues but his variety of foods was extensive.  He ate everything.  I’ll never forget – right before he was diagnosed with the Leukemia – he had his first warm chocolate chip cookie.  He was 18 months old.  He stood, holding the melting cookie up to his mouth, bits of soft chocolate oozing down his chin.  He ate it in about 5 seconds flat, and looked up in me with his big round eyes and said “More?”   

And then the Leukemia came.  And along with my little man’s happy temperament, the Leukemia stole his appetite.  It only took a couple of weeks before the effects of the chemo hit him like a freight train.  The nausea was intense - he could keep nothing down.  Worse, we had to try to hide the horrific tasting medicines in the little food he did eat.  At first, he tried to eat.  He would start out the morning hesitant but willing, and if I was lucky I would manage to get a piece of toast into him.  But as the morning wore on, the nausea increased and then I would have to try to get him to eat the yogurt that I had buried the awful medicine in.  And he would vomit within minutes of tasting the yogurt.   We needed to get the meds into him to fight the cancer.  They warned us that if we didn’t succeed, they would readmit him and give him the meds intravenously.  We had just come home, though, after more than a month in the hospital, and we wanted to stay home, so we were doing our best to get the meds into him.  “Try syrup” the doctors suggested.  So we poured the meds into the syrup and served him his favorite breakfast food, waffles.  But the taste was intense and he threw up as soon as it hit his mouth.  (I put it on my tongue to try it, and I assure you Coleman had every right to puke it up, it was revolting.)   The colossally painful side effect of chemo, Mucositis, only exacerbated the problem.  Mucositis  is essentially small, very painful ulcers.  Think of really bad cold sores.  And they were all over the inside of his mouth and down his throat.  He bled if he tried to smile.  The nausea and the sores combined to make eating nearly impossible.  Coleman was losing weight fast.  Every day it was the same thing:  we were 100% focused on getting food into him.  Sadly, we were largely unsuccessful.  I used to wake up in the middle of the night and stare at him, lean down close like I did when he was an infant, and look to see if he was breathing.  Just to be sure.  A couple of months into treatment, Coleman stopped eating altogether.  He wouldn’t take a bite of anything.  And when we went into the Jimmy Fund Clinic for our appointment later that week, they weighed him.  He had lost another 2 lbs and had now officially lost about half of his body weight.  The team at the Jimmy Fund called an audible and decided to readmit Coleman to Children’s, and within 24 hours he had a feeding tube put in.  I felt defeated but relieved- I couldn’t take another night of laying Coleman down for sleep on an empty belly. 

The feeding tube worked as it should, and Coleman received all of his meds and nutrition through that tube for the next two years.  He ate nothing orally.  His nausea continued rather seriously during that time, but we could run the feeding tube overnight while he slept which is really the only time he didn’t vomit.  And that is what kept him going through the rest of the treatment.  He slowly regained some weight, but never quite made it back to the chubby little guy he once was.

When Coleman’s cancer treatment ended, and they removed his port-o-cath, the feeding tube remained.  He was still unable to eat, and his gag reflex was severe.  We could not order take-out with Coleman in the car (which we learned the hard way, #Imshockedanyoneeverboughtouroldvan) .  He could not be in the kitchen if we were cooking (thankfully did not occur very often back then).  And he certainly could not be present while anyone at any kind of food.  In every one of these situations, Coleman would smell or see food and promptly puke.  A lot.   So the feeding tube, the doctors informed us, could not be removed until Coleman learned to eat orally again.  Learned? I thought.  

We had to find Coleman a feeding therapist, and alas, our relationship with Kara Larson began.  An amazing feeding therapist from Children’s Hospital, Kara warned us “It’s going to take him a couple of years to learn to eat again.  It will be tiny, baby steps but he’ll get there.”  Gulp.  Years of therapy to eat??  I could hardly believe it.  But Kara was amazing, and patient, and so good with Coleman.  And she was right:  it was tiny baby steps.  They started with simply having a piece of food on his plate.  He only had to tolerate it staying on his plate.  And that step took weeks to get through.  And then he had to touch the food.  Not eat it, just touch it.  And that took weeks too.  And then smell it.  And then bring it to your lips but not eat it.  We went several times each week, slowly helping Coleman to understand it was ok to eat. 

When I think back, I have such regret about how things progressed during the chemo, how long we tried to get him to eat, about how we were forced to deceive him on every food, every bite , to try to get the meds in.  I wish the protocol for Leukemia in children allowed for a feeding tube to be inserted from the get go.  But it’s an invasive procedure, and surgery of that type is very dangerous for children who are already quite sick.  And not all kids have the same reaction.  But for Coleman, those first few months of nausea and forcing him to try to eat medicine-tainted foods, destroyed his desire and ability to eat.      

Our sessions with Kara lasted several years.  With her help, Coleman slowly built a small selection of foods that he would eat.  And on October 15, 2012 - 6 years, 5 months, and 7 days after the Leukemia nightmare began - Coleman’s feeding tube was removed, closing at long last the most difficult chapter of our lives.

Without Kara, we had to keep up the techniques she had taught us to not lose ground on all that had been achieved.   While he was eating orally, he remained physically quite small, not even on the charts in terms of age-appropriate heights and weights.  And he was very finicky with foods – the autism impact on his eating much clearer than it had been in the past.  His go-to food was waffles – everyone that knows Coleman I’m 100% sure has seen him walking around with his dry, rather unappetizing waffle.  Because God knows that he will never again let us put syrup on it.  Past the waffles, our problem was (and still is) that on one hand, you needed to mix it up, show different foods, or else he became very fixated on the one food and would only eat that one thing.  On the other hand, you needed to re-present the same foods often, or else all the work to get him to eat that one food was lost, and he would refuse it, “forgetting” that he liked it.  For example, we face this issue every year with Watermelon.  We worked on Watermelon for quite a long time, going through each of the baby steps, seeing, smelling, touching, etc. until he finally tried it.   And then he would be willing to have it – albeit in very tiny amounts – but still have it.  So we gave it to him several times each week, until, eventually, it went out of season.  So now, this time of year, as it comes back in season, we say to Coleman “Hey! How about some watermelon?!!” and he is all like, seriously, no chance lady.  And so we have to start again. 

Over the last year, however, Coleman has made amazing progress.  We introduced new foods, and remarkably he seemed to take to them much faster.  Or maybe he was just really hungry.  What’s more, we worked on Coleman’s ability to feed himself.  Up until this point, we had to feed him.  His dexterity with utensils was imperfect initially, clumsily holding the spoon with such a light grasp that he dropped it often.  But he caught on.  And now, he manages that spoon just fine and eats all of his meals entirely on his own.  Yay!!! Such a huge success!!  His approved menu of acceptable foods, although still limited, is quite impressive compared to where we once were.  Chicken broccoli and ziti tops his list, followed by Chicken parm.   I can’t imagine where he gets that from.  J   

There are lots of things he still won’t eat (he has never had another cookie since the one he had that first and only time 9 years ago) but we are working on it.  We will always be working on it I suspect.  So we ebb and flow in terms of introducing new foods.  And on the back burner coming up is the desire to go gluten free/casein free.  Not yet, but soon.  Right now, we are focused on ice cream.  For those of you who know us well, this should come as no surprise.  One of Coleman’s favorite outings is to “go out for an ice cream” although he has never actually eaten an ice cream.   So we are on it now.  He will currently tolerate putting it up to and on his lips, but that’s it so far.  I feel confident we’ll make even more progress this summer.  If it ever gets here.