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Posts Tagged ‘eating’

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The natural patterns and rhythms of verbal communication do not come naturally to Nik. Despite the fact that he’s had his speech device for three-plus years now, he still struggles with parts of speech and being able to put words together in a way which is understandable to “outsiders.” It’s just a part of how his brain is wired. Much of Nik’s default method of communication is “telegraphic,” meaning that he will use one word for multiple meanings and that meaning is figured out by the listener who must either be psychic or must elicit more information to determine the context in which Nik means them.

For example, Nik may say “Park Daddy” to mean any of the following:

I want to go to the park with Daddy when he gets home from work.

I went to the park with Daddy this morning.

Will Daddy take me to the park?

I like going to the park with Daddy.

In speech therapy, Nik is working on using “action words” to go with the things he labels. For example, when he says “Park Daddy,” Ms. K will ask what actions he can do at the park– swing, climb, etc. They work on pairing nouns with verbs and reinforcing structure and the relationship between them. It’s a painstaking process which needs to be supported consistently– not just in his twice weekly sessions with Ms. K.

Nik loves to chatter to me as we drive along to the store after school or on the weekends. I try to encourage and coach his language use all the time. Lately, though, I can tell that Nik finds it annoying. I can’t say I blame him; who likes to be grilled all the time, right? Sometimes, he flat-out refuses to participate and changes the subject to avoid the work. Others? He plays me like a fiddle and I don’t even realize it until it’s too late!

* * * * * * * * * *
On the way home from the store yesterday, we shared a small bag of chips. As we drove along, I doled out chips every time Nik asked “more chips.”
“Nik, what actions can we do with chips?”
We’ve done this exercise often enough so I knew, from the silence in the back seat, that he was processing the fact that chips are food and you can eat, bite, or chew food.  Uncertain if I would need to prompt him with possible answers, I asked again.

“Nik, what is an action we can do with chips?”

I heard the quiet beep of Nik activating the screen on his device to answer.

“H-O-L-D bag.”

Well played, son. Well played.

* * * * * * * * * *
I promised Nik we would go to McDonald’s after his therapy this morning. He was extremely excited.  We don’t dine there with any remote degree of regularity; I try to save it for special times (or travel emergencies) and he loves going inside to eat.   On the way to see Ms. K, Nik and I were discussing what he would have for breakfast. He suddenly got stuck in a loop and began to perseverate on eggs.

“Eggs, eggs, eggs, eggs…”

Doing my best to help him break out of it, I tried to expand the language. “Nik, what can you DO with eggs?” I asked.

“Eggs, eggs, eggs, eggs…”

“Nik, there are lots of things we can do with eggs, right? Eggs are food and we can…” I began to sign eat, bite and chew as possible clues for him.

“Eat, eat, eat”  he replied from the back seat.

“Very good! That’s right. We can eat,” I signed. “Or we can Buh…” as I signed the word bite and made the sound of the letter B.

“Eat, B-”

I could tell he was about to spell it out and I started to nod in approval.

“…A-C-O-N. Eat bacon. Eat bacon.”

Yep, I’d say he’s got the important stuff down pat.

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Sitting at the breakfast table with my family… Just letting that sink in a bit…

Watching as Nik manages his bowl of cereal and banana, his scrambled egg and sausage, and a small glass of almond milk (hello, bottomless pit and hollow legs!). So very typical and yet…not. It occurs to me that, once I’ve prepared his food, the only assistance he needs lately is an occasional admonition to use his napkin or to slow down. To take a break from his methodical shoveling of everything into his mouth until it is overflowing.

I look across the table and watch my husband watching our son. He catches my eye and we smile. “You catching all this?” I ask with a lump in my throat. His only answer is a giant smile which transforms his face into pure joy.

So many years we worked with Nik to just be able to sit in a chair without falling over, to hold a utensil , to lift a cup. So many years we worked with professionals, like our beloved Ms. Michelle, to help him learn to tolerate textures, to initiate a swallow, to chew. Teaching him how to drink from a straw, to suck, swallow and breathe. The things which come naturally to babies but not to our child who spent too long on a ventilator and too long with tubes in his nose and mouth. All the years we wondered and worried, “Will he ever…”

The answer sits at our table in his very own chair with is very own place mat, dishes and utensils. It all looks so…normal.

It looks an awful lot like a resounding “YES!”

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My Facebook status earlier today:

Trying to figure out how to break the news to my husband —on our tenth anniversary, no less!!— that our son *must* have been switched at birth. Nik, apparently does not care for fresh-from-the-oven-and-gooey GF brownies. I’m distraught. Clearly, this is NOT my child. 😉

I mean, really, I know he likes chocolate. But not brownies?? Highly suspicious.

Thankfully, it seems I’m off the hook for telling my husband about the switcheroo. (WHEW! That would have been more than a tad awkward.)  I now have incontrovertible proof the boy is my husband’s son.

Nik climbed the gate from the playroom into the kitchen, opened the fridge and started “shopping” for a snack—because, you know, the quarter-pound of chicken salad and half-dozen rice crackers he had just consumed not five minutes prior were not enough. CLEARLY.

Curious to see what he was in the mood for, I let him choose whatever he wanted; being the curious child he is, he chose a closed container—which contained half of a Vidalia onion. I opened it and let him smell it, confident he would wrinkle his nose. “Do you want some?”

I was not prepared for him to sign yes. Further, I was even less prepared for him to actually like it!  My little Shrek-boy ate about half a good-sized slice. Swell.

Wonder if I can get him to eat some parsley. Or a breath mint?

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Monday, August 17, 2009 — 6:30pm: Nik decided he'd had enough

Monday, August 17, 2009 — 6:30pm: Nik decided he'd had enough

 

Gone, baby, gone!

Gone, baby, gone!

 

November 22, 2004 - August 17, 2009  ~  You served him well

November 22, 2004 - August 17, 2009 ~ You served him well

 

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Ninety-nine bottles of beer on the wall,
Ninety-nine bottles of beer;
Take one down and pass it around,
Ninety-nine bottles of beer on the wall!

A mere five and a half months ago, my son decided that eating was a good thing.  It only took him five years and three months to get there, but who am I to quibble over timing, right?  I should clarify: Nik did eat for a short period of time back in 2006 but it was very short lived and was never more than a small percentage of his daily nutritional intake.  He has, since the day he was born, always had a feeding tube of one sort or another.

In March of this year, we began the journey which has led us to where we are today; we have entered completely new, alien —but exciting— territory.  Over the last months, we have had to measure every last morsel of food and carefully calculate the meager percentages of Nik’s daily calories by mouth.  Over an amazingly short period of time we began to see the balance shift between tube feedings and oral intake.  All of a sudden —almost overnight, it seems — Nik was eating pancakes and pretzels, sweet potatoes and cooked carrots, scrambled eggs and fish fillets. 

The change was dramatic, to say the least.

By late May, with great excitement, we told our gastroenterologist about Nik’s vigorous interest in food; by that time he was taking nearly everything by mouth with the exception of some of his medications.  Hesitantly, we asked when we would know it was time to lose the feeding tube for good.  “Oh, Nik has quite a long way to go still, “ she said.  “He needs to be drinking at least 1300 mL’s by mouth.”  Thirteen hundred?  That’s forty ounces.  Nik was barely drinking FOUR a day and struggling with his ability to suck from a straw.  Sipping from a cup —Nik laps like a kitten from a bowl of milk — wasn’t even on the radar.

It felt like we had been kicked in the gut.

We decided not to push the issue, trusting that Nik would come around in his own time.  We went through a stretch of several weeks in which Nik continuously pulled his tube out or the balloon holding the tube in his belly would rupture from his strenuous play at the park each day.  We went through thirteen tubes in a short period of time; thirteen tubes is considered to be, roughly, a four to six year supply for most people.  We —all three of us— became desperate to speed up the process of losing Nik’s feeding tube once and for all.

We talked to Miss M, our beloved speech therapist —who is so very much more than that phrase imparts— about new goals to foster Nik’s ability to drink from a straw.  If we were going to get Nik anywhere near that thirteen hundred mL mark, it would have to be by straw.  In June, we began our stringent campaign.  Everything was offered to Nik by mouth —even his Prilosec which had been compounded into a ghastly tasting liquid we could put through his feeding tube all those years.  Eventually, Nik began to have some success with getting as much into his mouth as he did onto his shirt or the table.  We went through sippy cups with valves, sippy cups without valves.  So many permutations of sippy cups and bottles and straws that we looked like we were running a daycare center with all the supplies scattered around our kitchen.

Niksdad and I —with the blessing of our pediatrician— had long ago decided that thirteen hundred mL’s was unrealistic for Nik.  Even at half that amount on a daily basis, his urine output has been fine, his bowels working fine, he’s well hydrated and he can cry tears.  We decided that it was time to push the issue.  On one of our emergency visits to the hospital to replace Nik’s tube —because it had failed again and we had run out of spares and the medical supplier couldn’t get any to us for days— we broached the subject with Nik’s GI doctor.  Her response was cautious: “I can’t guarantee that Nik will meet all of his nutritional requirements and I don’t think he will meet his hydration needs, but we’ll see.”  We began to push the water in earnest.  Just a little bit every hour or so.  Then a bit more, and a bit more.

Finally, in early July, we found something “just right” — a sport water bottle with a flip up straw and no valve.  We figured, the less suction Nik had to fight, the more water he would be able to consume.  It was a slow process at first, but —much like the surge in eating back in March— one day it just clicked into place.  Nik had days where he would drink twelve ounces through the course of the day.  Then fifteen.  Then twenty! 

We called the GI to declare that we were all ready to get rid of the tube once and for all; we were prepared to take our chances and needed to know what to do when the tube eventually failed again or got pulled out.  It was a reasonable assumption that the tube would fail; we had gone through two tubes in one daythat week and Nik had nothing to do with either!

“When the tube fails or if Nik pulls it out, you may put a bandage over the stoma and let it close by itself.  As I said, I can’t guarantee that he will meet his nutrition or hydration needs…”  That was all we needed; we got the green light!  We knew it was just a matter of time before the tube failed or Nik pulled it out, right?

WRONG.  It’s as if, in giving her blessing, the doctor put a spell on the tube —a super-duper-indestructibility whammy.  We’ve been waiting for three weeks for something to happen to the damned tube.  Nothing.  Nothing.  NOTHING.  Nik picks and pulls but leaves it in.  He climbs over all sorts of things at the park (and at home) and still that blasted tube remains.

We could remove it but we decided to wait it out at least until the weather cools down a bit and Nik’s less likely to grind dirt into it at the park.  Oh, wait, that latter scenario?  Never gonna happen!  So, we wait.

Meanwhile, here we are; thirty-two days have passed since we began the water campaign and nothing —and I mean nothing— has gone through that tube.  The daily successes have been pretty astounding.  Especially this past week with Nik being sick; that was the real test of how well hydrated we could keep him without the tube.  On three separate days, Nik has consumed a full liter of water in a day.  ONE THOUSAND mL’s.  His daily average for the past month?  Nearly twenty-seven ounces.

We’re this close, I tell ya. 

THIS. CLOSE.

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Today was a perfect storm sort of day.  We would either have a day full of frights and horrors from beginning to end or we would have a day of unparalleled delights and successes. 

We recently had one of the former—a day in which Nik pushed the limits to breaking.  He figured out how to open the lock on the laundry door (using careful analytical skills and brute five-year-old force), purposely defecated on the family room floor (making nary a mess anywhere except in a very neat little spot), and pulled his feeding tube out multiple times in the span of just a couple of hours.

The last time he pulled the tube, he chewed on the silicone balloon until it burst into small bits—which could have choked him —and which rendered the tube unusable.  Did I mention we’ve gone through six tubes in as many weeks?  Yes, we’ve run through what should have been a six month supply already.  (Hey, we don’t do things in half-measure around here!)

A perfect storm was definitely brewing. 

Thankfully, today was the antithesis to that other day.  Nik woke —dry and still dressed in his big boy pants.  He refuses to wear a diaper or pull-up overnight and we decided it wasn’t a battle worth fighting.  He’s happy and we do a bit more laundry than we’d like some days, but so what?

My super trooper woke up hungry as a bear.  Seriously, the first thing he did when he popped up into a sitting position in his crib in the early morning hours?  Signed eat banana.  I kid you not.  So we trundled downstairs in our jammies and proceeded to eat Cheerios and bananas and —for the first time ever— a juicy, fresh peach.  Really, the peach was for me but he wanted to try it.  I never got it back.

Our schedule was jam-packed for the day: PT followed by a developmental play group then lunch and the long drive to the hospital to see both the ENT and the GI doctors to figure out what to do with his ears and his feeding tube.  If all went well with the ENT, there were plans to squeeze in a hearing test, too.  The piece de resistance: the drive home in rush hour traffic with time to spare for dinner and bed.

So many opportunities for disappointment, frustration or meltdowns of epic proportions for my little guy.  It felt like we were walking through an old mine field without any clue as to where the next booby trap might lay.

Nik sailed through an awesome PT session and a delightful play group where he did things he’s never done before— or things he once screamed and resisted doing— with an ease and a confidence that made everyone remark on how far he’s come and how much he’s developing.  It was, I confess, a morning which made me burst with pride.  More importantly, it was a morning which made Nik squeal with glee and sing with unfettered joy.

The trip to the hospital took longer than we thought so we weren’t quite prepared with enough food to stoke our little eating machine; he did have one hunger-induced meltdown late in the day as we waited for the cafeteria to open so we could get dinner before driving home in rush hour traffic.  Once Nik realized he was going to get to eat, he calmed pretty quickly —and ate like the rapidly growing boy that he is.

Our visit to the GI was really just to have her check the measurements of Nik’s stoma site to make sure we have the right size tube.  We’re going to try a different product and see if it doesn’t hold up to Nik’s abuse a bit better.  The new device has to be ordered so we’re stuck with the dreaded Mic-Key button for a bit longer.  Meanwhile though, they gave us a backup tube to take home —just in case!

It was sheer delight to be able to see the look on the doctor’s face when we told her Nik hasn’t had any formula since the end of April.  Her jaw dropped and then her whole face split into a grin.  “That is fantastic news! You’e worked so hard for this you must be so pleased!” she said in her typical understated fashion.

Then it was our turn for a collective jaw-drop.  After taking Nik’s height and weight, the nurse informed us that Nik’s grown just over half an inch  in the past six weeks.  (I’ll wait while that sinks in…)  That certainly explains why he’s got an insatiable appetite and why he’s not gained any weight.  I know he’ll be built like Niksdad —tall and lean— but I was sort of hoping he might wait a few more years  before he tries to catch up to him!

Our visit with the ENT went better than we expected.  Okay, other than the part where the audiology department forgot to check us in and we waited too long for a hearing test.  The bottom line is that Nik’s hearing is in the normal range, there’s no sign of infection or other cause for alarm and the ENT is going to investigate the mysterious mastoid fluid build up.  He wants to see Nik in three months and may order a CT scan then.  He also asked us to send him copies of the MRI’s so he can review them as a series.

Basically, as long as Nik’s hearing is okay and there’s no sign of infection, the approach is to wait and watch.  The alternative would be a mastoidectomy which none of us is prepared for.  We are, however, probably looking at a new set of myringotomy tubes this winter; this will make Nik’s third set. *sigh*

By the time we finished with the back and forth of seeing the ENT then getting the hearing test and seeing the ENT again to discuss the results, Nik was pretty tired.  But not too tired to eat his way through the hospital cafeteria once it opened for dinner at 5:00 p.m.

In addition to his old standby, peanut butter sandwich, Nik scarfed down a banana, some cantaloupe, some pineapple and several bites of my baby lima beans.  My God, the boy can put it away!

By all rights, Nik was fully entitled to a cranky ride home and a fussy time before bed.  Nope.  He sang and chattered and played with his LeapPad book and then willingly put on his pajamas and let us brush his teeth.  He was asleep before we even closed the door to his room.

Serendipity?  Perfect Storm?  Whatever it is, I’ll take a few more like this, please!

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Nik’s been eating me out of house and home.  Seriously.  Every time I turn around the child wants to eat more, more, more.  Enough so that he’s actually voiced the word “moh” quite vociferously to make it clear that he’s not had his fill!

Our routine goes something like this:

ME: Nik if you want more, you need to use your words to tell Mama.  Can you say “More please, Mama?”
NIK: Grudgingly signs “more, Mama, more, yes.”

ME: Nik, use your nice words, please.
NIK: Grudgingly signs “please, more.”
ME: Thank you! Here you go. Here’s more.

Sometimes, when I know Nik knows the sign for a specific food, I’ll ask him to show me that sign, too.  “Show Mama ‘More banana, please,’ Nik.”  Nik usually humors me and shows me the sign.

Tonight’s menu included something sort of new for Nik —dried green beans.  He’s had them a time or two in feeding therapy and seemed to enjoy them so I thought I’d add some to his dinner plate and how they went over. 

As dinner progressed, Nik kept pointing to his forehead and signing more.  I was, frankly, baffled.  “No, sweetie, that’s how you say Papa,”I said as I offered Nik another bite of his peanut butter sandwich.  He graciously took the bite and pointed to his head again.  “Papa is right here,”I said as I pointed to Niksdad.  I offered Nik a bite of applesauce which he pushed away impatiently.  “Okay, do you want a green bean?” I asked as I signed bean.  Nik nodded his little fist —the sign for “yes”— and gobbled up the crunchy, salty-sweet green bean.

This little dance went on for a while.  Each time, Nik would look at his plate and point to his head.  Apparently, Nik thought touching his head with one finger was the sign for bean.  For the life of me, I couldn’t figure it out. 

When the light bulb went on, I nearly fell off my chair laughing.

 How many times each day has he heard one of us say “Oh, watch out for your bean, sweetie!”  or “Don’t bonk your bean on the door, honey!” and other such colloquialisms?  Apparently, enough that it made perfect sense to touch his “bean” in order to tell me that was what he wanted to eat.

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