Happy Holidays

Oh my gosh! We're in California!

Raincoat for El Nino

 

Loves the Christmas lights

After the worst travel experience Dave and I have ever had (food poisoning for one parent and one child, plus ear infection despite tubes, and taking 3 Southwest flights to get across the country), we are safely in California spreading joy to Papa Ken and Grammy Nancy. 

Prevacid Party

The doctor wants to see Nate, endorsing our decision to call and making me worry even more.
She also wants us to start the Prevacid again to try to make things better before we go in next week. 
The Prevacid is a double edged sword.  It's unquestionably the strongest medicine he has taken.  Nate loves the melt-in-your-mouth strawberry wafer.  Dave and I shudder at the $75 copay.
When the nurse told me it was that particular medicine we were supposed to restart, Dave and I sighed and then agreed that we couldn't put a price on a healthy boy.  But wouldn't it be nice if the $15 dollar medicine made him feel just as good?
Later, we embarrassed ourselves by dancing at the pharmacy counter.
It seems the generic (lansoprazole - $15) form has just hit the market.
Later still, after letting the small burst of proton pump inhibiting goodness dissolve on his tongue, Nate danced around the kitchen pleading "more, more, me-me (medicine)" and signing more for good measure.
It seems we're all happy.
I hope Nathan's abused stomach lining is dancing a quiet dance tonight as well.

My Little Mynah Man

I've been counting while my two boys sleep.  I'm up over 200 and I know I'm forgetting some.  The list includes yellow and bulldozer and stinkbug and please.  Also walk and ride and astronaut and biplane.  Wine, milk, chocolate, and guitar.  My favorite right now may be "pilgrim" (pronounced "bum")
I'm not counting numbers, letters of the alphabet, or animal sounds.  Just words.  Words that Nate says reliably and frequently.

And yes, I'm bragging.  I'm amazed by my little boy who is expected to say 50ish words at this age but instead puts together 3-4 word sentences.  If you give him an opening he'll tell you the story of the two stinkbugs who were walking on his wall but daddy took them away in a tissue. To go pee pee in the potty.  Or he might tell you about airplanes and helicopters flying up, up, in the sky.  He may even tell you about rolling the yellow ball to Kent in gym class right before they crawled through a blue tunnel.

Of course, chances are also good that as an uninitiated person you may not understand a lot of it.  But if he told you "Nate please ice water, right now!" I think that one would come through loud and clear.  If he sees someone give you something or do something for you and you don't say thank you, he'll  say it over and over until you acknowledge him and thank the individual in question.

He uses a new word every day.  None of them, yet, things he has overheard that we would rather him not say.  All of them bringing joy into this house one precious syllable at a time.

Non-Dairy Rice Whip

I was driving home from the market tonight.  Nate was in the back seat and we were singing "Old MacDonald".  I realized that I had a totally goofy grin on my face.  We were having fun.  He was being charming and sweet.  We had even managed a trip to the market with no blood shed and no destruction of mommy nerves ( a true coup).
Most of the time, that's how I feel around my little boy.  Happy, grateful to have him, thankful for his easy going, sweet, funny, creative personality.  He uses a new word every day and explores the world with such wonder, and a total disregard for personal safety. (He took a "big step" off the couch today and after the tears dried we agreed he should hold mommy's hand for all future big steps.)

The other part of parenting this little boy is a constant grinding anxiety.  I don't pretend that my worry is bigger than any other parent's but his eating and growing or lack there of is a source of constant trouble in this house.  We were jubilant when he was eating and gaining weight after we got the allergy issue ironed out.  Almost 2 months ago, at his last GI visit we agreed he was doing so well we should wean him off his meds.  Gladly, we did.  Slowly, his eating has decreased, his weight gain has slowed, and lately he has been telling us about "yellow spills" (his word for throw-up) in his mouth.  It's hard to know when a toddler is being a toddler and when he is actually sick.  We have dismissed intermittent periods of poor eating as "being alomost 2" and we were probably right.  But now, with the exception of two good meals, he has eaten next to nothing in over a week and hasn't gained any weight in more than 2 weeks.  He's back off the growth curve for weight, and that's my flashing red neon anxiety sign.  I know I'm not raising the Jolly Green Giant.  I know we're not big people and he'll likely always be on the smaller side of the curve, but he ought to be on it somewhere.  He ought to grow.  So tomorrow we will call the doctor and ask her if she agrees that we should restart some antacids.  Does she also think we should restart the pro-motility drug?

Tonight, because he did actually eat a decent dinner, and because we are always looking for an excuse to sneak in calories, we did this:

Giving Thanks

Thanksgiving is my favorite holiday.
My mom had 3 siblings, and when I was little Thanksgiving was "our" holiday, the one everyone came to us for.  Back then I liked the smells, the home made candy, the house full of cousins, and the shenanigans at the kids table.
Since coming to Pittsburgh I have adopted Thanksgiving for my own.  I love to cook and I love to eat the things I cook.  Thanksgiving is a gluttony of both.  Since being together, Dave and I have usually been joined by family and always by some friends.  Being cozied up in the warm house when it is cold outside adds another dimension to the celebration.
I remember the year when Dave's friend Chuck was here and it was too cold to do anything but lay around in our pajamas and drink champagne and watch TV documentaries the whole weekend.
There was the year my dad and Nancy came to visit and we played Dance Dance Revolution so aggressively and with such focus that we almost burned the turkey.
And of course Dave proposed to me on Thanksgiving.  To this day I am surprised I didn't vomit my meal all over him.
We have traditions.  Mimosas and bagels while I cook in the morning.  Pumpkin pie from a real pumpkin.  Chinese 5 spice turkey.  Mashed potatoes with enough dairy products to justify my own cow for the holiday.
This year things are going to be a little different.
This year Nate is old enough to eat with us.
This year the table will be dairy and egg free.

I have been struggling with the temptation to make "mommy food" and "nate food", a concept which he is already familiar with.  This weekend, however, Dave and I had a rude surprise.  Putting lotion on Nathan with a hand that had held a hard boiled egg resulted in a whole body rash.  Thankfully vomiting did not ensue.  It did clear up this mystery from earlier in the week:   We ate eggs.  Nathan did not.  Nathan got a rash, got hoarse, vomited.  None of us slept.  In retrospect, I am sure I touched his food with some invisible trace of incredible inedible egg on my fingers.
It's made me think about what is valuable about Thanksgiving.  And the answer is "time with the ones I love".  There will be only Nate food with the candles on the table.  He'll "cheers" with sparkling cider like I did when I was little.  Dave and I will be able to relax and forget about partitioning food.
The recipes will be new, and except for the turkey, vegan.
The house will be warm.  The friends will be good.
I will be deeply thankful, as always, for my boys.

A Boy's Best Friend

If you know us, you probably know that Dave and I are allergic to pretty much all animals.  You may know that sitting in a car with someone who has a dog makes me wheeze.  You have probably heard the story about Nathan and the poodle and may have even seen the picture of his eyes swollen shut from hypoallergenic dog slobber.
You may then have wondered if this boy was ever going to have a pet.
You need not have worried.

Nathan has adopted a creature.

Can you see the little guy on the inside of the bottle?
He's a stinkbug "Ti-buh" and he eats, as Nate told us anyway, "tasty green".  That's spinach, in case it wasn't clear. 
He's lived with us for a week now and Nate eats breakfast with him and kisses the bottle good-bye when he leaves for school.  Yesterday we found him a friend on the widow sill and now the two of them are wandering their bottle together.
Not sure how long they'll be around, but Google says they can live up to five years, so if they really live on "tasty green" they could be eating breakfast with us for quite a while.

Hunger

I read the "Little House on the Prairie" series when I was in first grade.  I've reread it many times since and one or two things hover in my mind.
In "The Long Winter" Laura goes to a party where she receives an orange as a party favor.  "Imagine," she thinks in awe, "having an entire orange all to yourself."
I found myself thinking about this the other day when the "kids meal" came and included an obscenely large hot dog and more fries than Dave and I could eat together.  It cost nine dollars and we threw almost all of it away.

We think about food a lot in our house.  Nathan has had so many problems with food and weight gain that we know the calories and nutritional breakdown of a stunning number of foods.  Traveling, even going out to eat, brings up the "what-will-we-feed-him?" anxiety.  Dave's dad's recent brush with the reality of heart disease has thrown our eating habits into sharp relief.  Dave and I have both eaten too much crap and exercised too little since our little man came along.  We worry about eating out and finishing leftovers before they go bad.  Everyone has breakfast even if it makes us a little late for work.  I worry about waste - food bought and uneaten because Nathan didn't like it or we worked late too many nights in a row to cook it all.

All small worries compared to that shared by 1 in 5 American children.

Twenty Percent of American children live in homes where, at least once a week, they run out of food and don't have money to buy more.

Twenty Percent.

That means that in a class of 30 children 6 of them may not have had breakfast and may not be expecting to have dinner.  Six children whose grumbling stomachs will distract them from learning to read and write.  Six who may bully someone else out of their lunch or pick a fight or ditch a class or talk back to a teacher because they just feel so bad.
Some of these children don't have food because their parents have spent the money on cigarettes, alcohol, or drugs, but some of these children don't have food because a parent has lost a job and the cost of keeping a roof over their heads and the heat on is much more than their current income.

Feeding our children is possibly the most basic role of parenthood.  God gave women's bodies the ability to nourish the next generation.  It is believed that one of the many causes of the obesity epidemic in America's children is that parents don't like to tell their children "no" when they ask for food.  The reality in our country, however, is that 20% of our children are mildly malnourished because of the unreliability of their food source.

I don't pretend to know what the answer is.  Nutritious school lunches can help the children.  A declining unemployment rate would help whole families.  A single parent household has twice the likelihood of going hungry so decreasing that prevalence would make a real impact.

I also don't have an agenda.  I just think it is horrifying that this country, that overeats and throws food away and spends so much of our GNP trying to solve the problems of others, can't feed our children.  I think a lot of people don't realize how high the numbers are.
If you want to read more check out the Food Research and Action Center.
And please, think about donating some healthy food to your local food bank.  It is the only safety net that many families have.

Bothersome

One of the unfortunate facts about the hospital I work at is that it abuts a very old cemetery.  Through very careful forethought and planning there are no patient rooms that have a view of gravestones.  It is visible, through the trees, from the library.  The PICU family grief room originally had a clear view of marble mausoleums until they installed some stained glass to blur the harsh reality.  Otherwise, it is the physician offices and work-rooms that have the gorgeous views of ancient trees marching through the seasons. 

I don't mean to imply that we should hide the concept or possibility of death.  Our bodies all die eventually.  I just think that there is something unsettling about struggling with the illness or injury of a loved one and, needing a glimpse of the outside world, looking out a window to see a funeral procession.

In the oncology world we wrestle every day with life and death discussions, how to talk to children and their parents.  Some people want cold hard facts with no sugar coating.  Some want vague generalizations.  We're honest with all of them though the language changes.  We work hard to make our clinic a space of hope and to give all the happiness we can to families who spend many of their days worrying about what the last day will be like.  Kids run around the halls chasing a favorite doctor or nurse.  They do crafts while they wait.  The teens hang out playing pool or Guitar Hero.  Santa always comes.  Hope, as it has been said, springs eternal.

We do what we do for the kids.  That includes decorating for every holiday including Halloween.

But we also do it for the parents, and I wonder if any of them find this bothersome as they check in for a blood count and chemotherapy.

While I was gone

How to explain a monthlong abscence from the blog world . . .

Model airplane show with daddy

Playing piano at Rosh Hashana services

Learning to drive

Making, and eating, and enjoying vegan cookies

 Enjoying one of the last days of summer in a fountain in the Baltimore harbor

Hanging out with med school folks at a good friend's wedding


I'll try not to go away for so long again.

Hands

Sometimes, when we walk together, Nathan will hold my hand.
Sometimes he waves his arms around like an indignant octopus in an often successful attempt to escape restraint.
But sometimes he will hold my hand.
There is something about that little hand wrapped firmly around my index finger that just melts my heart.
I look down and see my tousel-haired little boy walking beside me, occasionally looking up at me, eyes shining with excitement at a truck, or, even better, a purple bus.
But just under the skin of that reality is my dark eyed baby, blinking sleepy milk drunk eyes at me, soft fingers curled reflexively around mine.
And behind that? The picture I carry in my heart of my fetus, thumb in mouth, holding onto the umbilical cord for security.  He is anchored no less firmly in my heart now than he was then, but he is less often attached to my side.

Whether it is two spoons at dinner or not holding my hand in a parking lot "Na-Na", as he calls himself, has his own ideas about how things should be done.

It makes me happy. And quite frankly, it makes me sad.  My sometimes baby, sometimes boy will too soon be always boy.

I'm not an activist by any stretch of the imagination.  Not to say I don't care or I don't have opinions, but I've never considered myself to have the discretionary time necessary to do anything big about it.  Still I do believe that many people performing small actions can effect as much change as one big action.  In this vein, I have decided not to buy gas from BP.  It's the closest to our house, the most convenient by far, but certainly not the only choice.  I've been torn between the rationale that they need all the money they can get to fix this mess in the gulf, and the thought that they don't need my money to support their ongoing pursuit of profit.
In the end, I decided to pump my fuel elsewhere.

Until today, that is.  This afternoon, I heard an ad, a plea really, from the owner of our local BP franchise. 
I'll paraphrase:  "I live here in your community.  I employ your friends and neighbors.  It's not my fault that the BP well exploded.  BP is trying to fix it.  Please don't blame us.  Please buy gas from me." 
It was much more eloquent than that but that's how it broke down.

It made me think.  We know that the fishermen in the gulf are suffering.  We know the tourist trade is declining.  We know the effects of the oil in the ocean can be shown on computer models to be catastrophic if it is not stopped.  But what about the BP franchise owners in Pennsylvania, Missouri, and Washington?  Nowhere near the water, and definitely not on the news, but being driven out of business, loosing their livelihood and savings nonetheless.  All because people like me want BP to know, in a small, small way that we disapprove.

The excuse for inactivity is so easy to make.  My single gas purchase makes no difference and is not felt one way or another.  It is only the cumulative effect of many that makes an impact.  That's true for BP if I don't buy their gas, and for the local franchise owner if I do.  But I do have to choose.  I do have to decide if I side against the large corporation for their non-malevolent negligence or with the local small business owner and a community that has already been financially bludgeoned with the relocation of the steel industry.

Tonight I'm not sure.  I continue to struggle, and I'd love to know what you think.

Wait, it comes together . . .

When Dave and I hadn't been dating for very long at all, he got me a very special gift.  It was a mini-rose bush.  We sat in front of it as he explained that it was like our love.  Lots of blooms open but lots of buds with promise to come.
A few months later when my "green thumb" had brought the rose bush to its knees, Dave begged me to no longer think of it as representing us.

For our wedding favors we gave small "Tree in a Box" sets for planting a tree in the Jewish tradition.  We planted our own seed and the resultant tree, a flowering catalpa, has made it through 5 years.  Every spring when it sprouts new little shoots and leaves, we always breathe a sigh of relief.  This year, on our fifth anniversary, despite being repotted to a larger pot, fertilized, and even put outside, it has refused to give any green.

**********

We're certainly not plumbers but we have had a few do-it-yourself adventures in our kitchen.

When I was pregnant, we decided to replace the kitchen faucet with a fixture with a pull-out hose/nozzle.  I was sitting on the floor reading the directions and Dave was under the sink doing all the work.  When he turned on the water to check the connection, the hose, with nozzle as yet unattached, went crazy and sprayed water all over the kitchen.  The worst part, though, was that Dave had reversed the connection so he thought he was turning on the cold and instead ended up dousing me with straight-out-of-the-water-heater hot water.  Luckily no permanent damage was done to anyone or anything and we are able to laugh about it.

Today Dave replaced our garbage disposal.  The motor on the old one was dead, so instead of being able to confirm the breaker was off, we just had to turn off the entire first floor and basement.  (Our house is wired strangely enough that turning off the second floor may have made sense as well, but the electrical vagaries of our house make a post for another time.)  It could have been an easy job but there were a few hitches, including a trouble with the wiring that had both Dave and I wrestling with exposed wire.  Finally, it was all together and we were working together to get it up and secured to the sink when my shoulder flipped up the switch.

And the disposal roared to life. (OK, purred through its noise dampener, but it was the thunder of our lives flashing before our eyes to Dave and I.)  Nathan asleep upstairs and his parents blithely playing with exposed wires hooked up to 220 with only a switch between them and certain doom.

When we started breathing again, we could only laugh nervously, and Dave just turned off the whole house.  It seemed the safest even though the wiring was done.

**********

This evening, on our front porch, we noticed that our wedding tree has finally put out two little shoots of green.  Coincidence?

Trouble

- with a capital T and that rhymes with B and that stands for Bear.


Gummy Bears to be exact.  Gummy Bear Vitamins to be uber precise.
I've scoured the ingredient label, and I can't find crack, but maybe it's hidden in amongst the fancy chemical names for things like vitamin E (alpha-tocopheryl, anyone?).  Nevertheless, Nathan has a powerful need for the gummy bear.  Every morning we come down to the kitchen, and thus begins a frantic pantomine of pointing, signing "more" and "please" and then the addition of vocal choruses of "more-more", "buh-beh" (gummy bear, for those fortunate enough to be uninitiated to this ritual), "peasss-peasss" (surely you recognize please-please - in baby talk).  I think the intensity of his hand motions, pathetic pleading, and unutterable cuteness is almost enough to levitate the bottle off the counter and into his grasping hands.
Almost, but not quite.  He remains dependent of his mother and her mean-spirited, unfair, doctory, ridiculous, one vitamin per day rule.
Two days ago he resorted to rolling around on the kitchen floor in indignation, howling "please more gummy bear", tearing his hair, and beating on the ground.  And when his mother, cold-hearted woman that she is, simply stepped around him as she emptied the dishwasher and asked him to please stop shouting and refused to hear reason, he sat up and with tear-stained face, turned on his 1000-watt smile and said "peass-peass, buh-beh" in the the most pitifully pathetic tone ever given voice.
And I'll admit it.  I almost caved.  Almost went the route of "one extra vitamin couldn't possibly hurt him".  But I didn't.
I gave him dried mango instead.

Yes, I bribed him with sweets, but apparently standing firm on the gummy bear issue was enough because while we continue to have protracted conversations about my refusal to dish out more of the good stuff, there has been no more wailing or rolling (at least about "buh-beh's").

The Golden Years?

So far second year of fellowship is awesome.  I don't have much weeknight call - none at all in July, and so last night, on what would traditionally have bee the night I would have come home from work late and been on call and getting paged all night, Dave and I celebrated.
We sat on the deck, enjoying our new patio furniture, listening to the planes overhead and watching the fireflies blink.  We talked about truly deep aspects of our lives like tiki torches and Nathan's delight in his pint sized deck chair.
It was wonderful.
I do have one complaint though.
This morning I have itchy mosquito bites. 
I never got mosquito bites as a first year fellow.

Something I Love

Every night at bedtime we read "Goodnight Moon".  Nathan requests it with an enthusiastic "moon, moon!".
We have little rituals as we go through the book.  The mouse squeaks, the kittens miaow, and for reasons I have never understood, Nathan always smells the picture of the three little bears sitting in chairs.  I lift his hand up to my mouth to "shush" against it and now he puts his little hand up as soon as the page appears, and giggles with delight when I tickle his palm.

The part I really love, though, the thing I know I'll miss the most as he gets older and wiser is "Good night Air".  When we turn to that page, speckled with stars across the top and a white void at the bottom, Nathan reaches up and wiggles his ears.

Good night ears.
What does he know of air, anyway?
Ears he knows, and every bedtime we tell them good night.

Fine Young Cannibals

I think of myself as a pretty relaxed parent. 
Nathan bounces around on the ground a lot.  He is, after all, perfecting his walking/running/climbing/exploring skills and a few head bumps/pinched fingers/little scrapes are just all part of the process.
I was, however, completely unrelaxed today when my son came home with teeth marks on his baby skin. 
It's not the first time.  On his second day in the toddler room we took off his shirt at bath time and there was a perfect dental imprint written in broken blood vessels in the middle of his back.  Today, apparently the same offender got out of control and bit my little guy's shoulder.
And drew blood.
When Dave arrived to pick him up, our tear-stained boy was surrounded by day care workers, ice packs, and incident reports.  The mother, an attending I have worked with on more than one occasion, was mortified and apologetic.  Nate's teachers were similarly distressed.  They are supposed to keep "the twins"  and their teeth separate from the other kids, but today there was a breakdown in the system.
I'm not OK with this.
I'm not OK with biting.
Nate has spent exactly 3 minutes in time out and all 3 of them were after the first and last 3 times he bit anyone in this house.
I am glad I wasn't there because I am not sure I would have settled for time out if I had actually seen the little boy nearly twice Nathan's size trying to make a meal out of my baby.  Caning is still legal, isn't it?

AKA

Do you ever think about what your mob name would be?  Or your child's?
We decided today that Nathan's would be Nate "the Pit".

When his eating was at its worst, before we knew what was wrong, when we were tyring to fix him with Pediasure (Nice cold glass of allergen, coming right up!) we had daily calorie counts where his breakfast numbered 13 raisins and we felt really, really good about that.  His breakfast today would have seemed like really really good intake for a whole day back then.

Today, at 5 am he drank 4 ounces of Elecare.
A few hours later, at breakfast with mommy, he ate: 3/4 of a slice of cinnamon sugar toast, about 20 blueberries, 2 1/2 slices of turkey bacon and 4 ounces of mango juice

Just about an hour later he sat with daddy and ate 1 1/2 whole mangoes

Lunch was 1 1/2 chicken nuggets, a couple hand fulls of cinnamon sugar Chex, 1/2 cup of cereal/raisin mix, and 8 ounces of 30 calorie per ounce Elecare

For dinner he ate 3 1/2 slices of chicken lunchmeat (no nitrates!), a piece of vegan rice cheese, 1/2 a mango, and 6 cherries
Bedtime snack of 4 ounces of Elecare

Either he's gearing up for a growth spurt or he's sprung a leak somewhere . . .

******

Nate "the Fruit Bat" has also come up as a mob name contender.

Why bother to peel the mango? - More fiber this way.

Counting down and Counting up

I don't know if anyone besides me actually looks at my countdown clock over there on the right side of my blog, but I am excited to note that I have less than 2 weeks left of my first year of fellowship.
Applause. Cheering. Whooping. Excited dancing.
I am tired and ready for a new challenge.
Even more ready for a dramatic reduction in my weeknight calls.

*****

Nathan weighed over 20 pounds tonight on our oh-so-scientific method of holding him and weighing ourselves on the bathroom scale. Official weigh in and measurement to follow next week.

*****

Nathan's current favorite thing is "sneaking". Mommy or Daddy hold him and run around "sneaking" up on the other parent and startling them. Of course the whole thing is very theatrical. Almost kabuki. And he loves it. Tonight, for the first time, he toddled around on his own feet, hiding around corners, giggling, and shouting "nee-nee"! We all laughed like loons.

*****

It gets to be more fun every day.

Pavlov's Baby

Nathan is a smart boy.

He had been a dog lover. One of his first words/sound was "Ooo-Ooo" which was quite obviously the bark of a dog. With arms outstretched, fingers grasping the air, he would bark at any dog passing at any distance, reaching with obvious need toward his 4-legged soon-to-be-friend. Faced with actually touching a dog he was usually a little more hesitant. they are, after all, larger than him and very frenetic. Still, he got to pet a few dogs.

After this encounter we noticed a few hives on his face and he was rubbing his eyes. By the time we got home from the park it was gone.

Then came the incident known as Nate versus poodle. Supposedly hypoallergenic dogs, but within about 5 minutes of being tasted by the friendly poodle, our boy was red, puffy, and his eyes were swollen almost shut. the hives on his face were so big and tight they almost looked like blisters. His skin was weeping.

After a bath, some time, and a large dose of benadryl he felt much better. But obviously, he can be taught. Dogs now elicit no excitement from him. He turns his head away and ignores them. Even the dog button on his animal noise toy gets a scrunched up face and a "bye-bye, bye-bye".

One picture per blog of a hive-y boy is enough, so here is a cute picture of our little man glowing with pride at his ability to motor around unassisted.

When we took Nate for his allergy testing this week he was tested for dog allergen. The doctor was hesitant because it is so rare for a child before age 2 years to be allergic to dogs. But because he had so many other allergies, and because we had the pictures I am not posting here, he consented, and sure enough a large wheal and flare ensued.

He recommended we keep him away from dogs. Nate seems ready to keep himself away.

Clever boy.

Walk Like a Man

Mommy says: Come on bunny, we have to put shoes on so we can go bye-bye.

Nathan does:

Little ways to go before he fits in Daddy's shoes

Amendment

As an amendment to my post yesterday I would like to add Nathan's place on the growth curve.
Weight: not yet on the curve but moving toward it.
Height: All the way up to the 5th percentile% !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The Son Also Rises

Get ready to stand up and cheer.

Success is all around us.

Nathan is climbing back onto the growth curve.

Yes, I really am that crazy pediatrician mom who has been carrying around a self-plotted copy of Nathan's growth curve and foisting it upon other people. The flat line that extends out from the weight curve, past his first birthday, and steadily farther from the 3rd percentile is impressive. His height, after "falling off", has continued to increase, parallelling the curve at about the "-1 percentile". So yes, I show it off to draw shocked gasps from pediatricians, embarrassed downcast looks when they hear it is my child's curve we are examining, and not some unfortunate with a rapidly progressing brain tumor.

But now, let us discuss his meteoric rise.

Drum roll . . . . .

In 3 weeks he has gained 1 pound and grown 3/4 of an inch.

God bless Elecare and giant meals of sugar covered strawberries, oatmeal with extra (soy-free, dairy-free) butter, chicken nuggets covered in brown sugar enhanced ketchup, and Mmmmm cold and tasty Rita's Italian Ice.

Oh, and maybe this has something to do with it . . .

The Hot Stepper

Little scamp! He waited until 15 minutes after I left for work.

The Plot Thickens

The GI doctor called today.

Had I seen Nathan's labs.

No, I had not.

She thought I shouldn't look because it might make me anxious.

It did.

Nathan's blood tests show allergy to milk and soy, which we knew, but also to oat and wheat and corn and peanut and egg.

Now, I have to say that blood tests are not really the most reliable way to assess allergy. The antibodies in blood which are measured by the test, especially at a low level, may not actually translate into actual allergy symptoms. The classic scratch test is the real way to tell what the reaction will be upon exposure.

This, though is what we know.

1. His giant belly deflated within 48 hours of cutting milk out of his diet.

2. This is our Nathan on hummus:

I was trying to feed him hummus. He refused. It got on his face. He smeared it around with his hands. Hives and facial swelling ensued.Hummus is made from garbanzos, a legume and therefore a relative of soybeans. For now, all beans are out.

The milk and soy are two of the lowest blood levels he has. His level for egg is 20 times milk and soy. Eggs scare me now.

He will have to get scratch testing now, but until then we have agreed to cut out milk, soy, egg, and peanut and monitor. If we cut out everything that was "positive" by blood test we would seriously not be able to feed him anything.

The only positive is that this adds fuel to our fight to get the insurance company to help cover the expense of the formula. Since our policy specifically covers "nutritional supplements" and "medical food" we are having trouble understanding how this doesn't fit into one of those categories. But more on that later . . .

Number 7

When I was growing up my only interaction with football was watching the Super Bowl with my dad. I went to 1 high school football game and my college didn't even have a team (to my father's great chagrin). I moved to Pittsburgh in 2001 knowing practically nothing about the sport apart from the shape of the ball.


Living in Pittsburgh, however, you can't miss the Steelers. Football is the city's religion. Pittsburghers are on a first name basis with their players. The proscription against idolatry does not apply to Troy and Hines and Ben.

The team's defense has led Ben Rothlisberger to 2 Super Bowls while I have lived here, and in a town of this size, it is impossible not to get caught up in that excitement. So yes, Dave and I are Steeler fans. Not the type to get our hair buzzed into the Super Bowl logo. Not the type to stand in freezing rain to watch the parade, but the type that put our 2 day old in too big Steeler gear on Super Bowl Sunday and had a little party.

So now our quarterback, "Big Ben", has gotten caught being stupid.
Again.

It wasn't enough that he drove his motor cycle into some unsuspecting motorist while taking full advantage of the inexplicable repealing of the helmet law.
Then, he was involved in an "incident" with an unwilling girl but nothing stuck.
Now, for a second time, allegations have been made by a young woman that he made an unsolicited effort to introduce her to "Little Ben". And while in America one is innocent until proven guilty, a virtual herd has come forward to report on inappropriate things they witnessed on the night in question.

What embarrasses me, however, is not Ben. It's the response of the city.

A few days after this hit the news, I was listening to my morning radio show discuss the fact that Ben had as yet said nothing in his defense. "He doesn't have to," the guy said smugly, "once they announced there was no DNA, there's nothing to say."
OK. So no proof of intercourse but maybe an apology for the rest of the evening's behavior and for again embarrassing the team would be in order? Maybe if Steeler Nation weren't all rushing to his defense he might take a little responsibility for himself.

Many of the team's fans are more outraged by the sanctions (a 4-6 game suspension) being imposed by the NFL than by anything Ben may have done. Some, including a few I previously respected, refuse to hear anything bad said about their hero, and can muster up a lot of vitriol about "that girl".

I just don't get it. This guy is hero and role model to a lot of kids. And their parents don't care that he's running around acting like an irresponsible, unethical frat boy?
I care. I am glad he is being publicly punished. I hope he doesn't hurt anyone else before the city comes to their senses.

Caught In The Act

Yes, that's a prescription bottle.

Yes, it's empty.

Yes, he fished it out of the trash.

Yes, he took off the child-safe top.

Yes, we're in trouble.

Prophetic?????

Fortune telling shirt?

Buy stock in Abbot Labs

This weekend I was on call. I was in the hospital most of both days and a lot of one of the nights.
That left Dave and Nate alone in the bachelor pad. It gave Dave lots of time to implement his evil plan. His plan to get Nathan to drink some Chocolate Neocate.

Dave I both thought it tasted better (though not a lot better) than the EO28 that we tried first.
Nathan disagreed and spent the last 2 days of the weeks spitting it, drooling it, and cheerfully bidding it "bye bye".
Then the weekend came and Dave sent him to Neocate boot camp.
No fluids were offered except the chocolate amino acid beverage.
Nathan did not drink.
We added chocolate syrup, vanilla extract, warmed it up and poured it over ice. We tried different cups. We tried a shot glass (his favorite drinking utensil).
He stood firm.
When he hadn't urinated in almost 10 hours, was awake in the middle of the night screaming for a drink, and still wouldn't swallow the Neocate, I caved and gave him a giant glass of ice cold mango juice.
Which he guzzled.
And regained his strength for the next day's battle.
In total, over about 4 days, he drank about 2 ounces of Neocate.

We gave up and Monday he drank rice milk. (NOT an infant formula. Consult physician before using in children under the age of 5!)

Tuesday the GI nutritionist finally called back and gave me some new Neocate strategies and redoubled our conviction that he needs a milk substitute that actually contains protein and fat. He's got a lot of ground to make up and solid food just isn't going to do it.

So, with a sigh and a sense of foreboding I went down to the GI clinic and picked up more EO28, more chocolate Neocate, and some Neocate tropical.

Then, as I was about to leave, it caught my eye.
Elecare.
It was in a sexy little package with a FREE plastic shaker bottle and it claimed to be vanilla flavored. Also made by the makers of Pediasure. Seemed to be in its favor.

I had read online that some kids took the Vanilla Elecare better than Neocate. I also read that many refused it. Still, I grabbed the box and added it to my stash.

When I got home Dave and I inspected the packaging like a Torah scroll, impressed by the results of a taste test done in normal children.

We weighed the powder, added water, shook it up, and Voila! magic happened.
Dave and I tasted it and agreed that we would actually drink it. Maybe a little chalky but no sulfur to be found. Strong vanilla smell and flavor. No medicinal aftertaste. We dissected it like a pair of sommeliers discussing a fine Syrah.

And then we gave it to Nathan.
Who loved it.
Who has already drank about 10 ounces of the stuff.

Who maybe, we say with fingers and toes crossed, will actually grow.

Tribute

We met on an evening in September. When I got to the ER his mom had been crying. Someone had already told her that her 2 year old baby boy had a belly full of tumor.

He had big blue eyes, long eyelashes, and soft blond hair.
He also had persistent fevers, weight loss, and a listless expression
He had his mommy's hope and his daddy's heart in his hands.

This sweet little boy became many things to me.
The first (and God willing) only patient I gave the wrong diagnosis to.
When I corrected that mistake, I stood in front of his parents and told them that their child had only a 50% chance of being alive in 2 years. Another first.
The first time I a family the therapy wasn't working.
And the second.
And the third.


He never went anywhere without his pint sized hockey stick.
He usually traveled riding on the wheels of an IV pole.
He was a merciless and fairly eccentric fashion critic.
An exuberant hugger.
A fan of "The Price is Right"
A lover of "dip" (ketchup), "hot dip" (wing sauce), and Shamrock shakes.


He had wretched luck. Terrible toxicities from every single drug, slow recovery times, blood clots, infections, and ultimately, he was the first of my patients to fail to respond to every treatment we offered.


When it became clear that everything we were doing was making him miserable and nothing we were doing was stopping the tumor from multiplying in belly, lungs, and bone marrow, his parents decided to take him home and treasure having him and his sister together for as long as they could.


He died recently, a few months shy of his third birthday and just 7 months after he came into my life.


When I think about him, I can't help but remember the way those tumor cells looked under the microscope. Large and angry, clumping together and pushing the normal cells aside. Bullies imposing chaos and pain and heartache on the innocent. You could see them in the act of replicating. Always fresh troops to make him thinner, weaker, and to make his parents eyes more empty and haunted.


Mostly, however, I think about how fine and soft his hair was when it started to grow back after the chemo. I remember hallway hockey games and the times he would let me carry him around, dragging his IV pole behind us. I remember how cozy he looked curled up in bed with his bear of a father and how his Elmo slippers were almost as big as he was. I think about his smile and how he glowed when the music therapist came in with her xylophone. You could always tell what room he was in by tracking his mother's laugh but he was generally out of his room putting smiles on the faces of nurses and patients alike. He was a kid and he didn't like to let being sick get in the way of his play time.


I miss him. I am lucky to have met him. I wish I could have done more.
I am glad that there is no more suffering.


Neuroblastoma is a terrible disease and I hope someday we have a cure.

No Dairy, No Soy: Day 1

Food eaten today:
1 bowl of pears
1 banana
3 Ritz crackers
Small handful of Honey Nut Cheerios
Small handful of Annie's Organics Cocoa and Vanilla Bunnies
small amount of plain pasta
10 "fries" - (the day care bakes them)
1/2 bowl of oranges
3/4 of a container of mango-passion fruit coconut milk yogurt

Frightening amount of food for a 14 month old, but this is about twice what he has eaten the past 3 days.

Ounces of EO28 splash ingested since last night?
Less than 1

According to the website, children eventually become accustomed to the "unfamiliar taste and texture".
Common pediatric wisdom is that children need to be exposed to a food 8-10 times before acceptance.
So we try, try again.

The soy-free vegan who eats meat and eggs

Yep, as of today, that's our boy.

This morning our wonderful GI doctor called me to tell us that allergy testing had come back showing allergy to dairy and soy. A lot of allergy.

To dairy and soy.

Anyone want to tell me how to nourish a toddler with no dairy?
Especially my not-quite-toddling toddler who, at this point, after weeks of worsening food aversions, pretty much only eats yogurt, string cheese, Pediasure, and Chex Mix (which needs soy protein, why? To make it a health snack?).

We are very relieved to have an answer and to have something to do. We are thankful it's not something that can't be fixed.

We are ready to move forward. We are eagerly anticipating the end of vomiting and the beginning of real weight gain.

It seems, however, that we have one more hurdle.
EO28 Splash
Formula identified by serial number isn't generally stocked of supermarket shelves.
In the interest of truth in advertising, I'd like to decode some of the marketing statements made on the web page linked above.

Statement: "100% non-allergenic free amino acids"
Interpretation: "tasty whole proteins broken down into sulfur flavored building blocks"

Statement: "$115 for a case of 27 boxes"
Interpretation: "You better hope insurance covers it because that's only a 9-day supply"

Statement: "Available in 3 great flavors"
Interpretation: "It's not Pediasure. It's not chocolate. Your 14 month old will sip, smile, shake his head, and cheerfully say bye-bye as he knocks the cup to the floor."

****

Suddenly Nathan has two "tasty" medicines to take morning and night, one at lunch time, and a fairly foul tasting beverage to nourish and hydrate himself with. He's definitely going to grow up thinking "fruit-flavored" is a curse word.

*****

We'll adjust. Tomorrow we'll offer Nate some coconut milk yogurt and some vegan bunny cereal and hope he actually swallows some of it. And, of course, there's always mango.

Tummy Troubles: Update

Well, it pretty much went the way I thought it would.
Even though I am sure it was delicious mixed with fruit punch, Nathan refused the barium.
Rejected it from the bottle and positively spewed it when they tried to syringe it down his throat. So, ultimately, after three failed attempts and a bloody nose he did get an NG tube. He screamed. He sweated. He writhed. He bucked.

I wore my lead apron and held his arms and sang his favorite songs.

And his scan was completely normal.

So we breathed a sigh of relief?

Sure. We're glad he doesn't need surgery. We're also sad we don't have a reason.

Tomorrow I'll talk to the GI doctor again and find out what the next step is.

Tonight I am on call and too busy to say more.

Tummy Troubles

It's not up to us, of course.
What we will find tomorrow has already been decided. It's already there. It won't change on our word or it would already be gone.
Nevertheless, Dave and I sat over dinner and discussed what we would like them to find. The worst game of "Would you rather?".

"Would you rather they found something that was surgically fixable or something that requires long term medicine?"

Nathan has his upper GI tomorrow. After almost 6 months of minimal weight gain. After literally plummeting off the height and weight curves. After a trial of antacid, a visit to a GI specialist, an ordeal of a blood draw, and a small fortune in Pediasure.

Tomorrow we just want them to find something. Something to tell us why our little boy eats a little less each day. Something to tell us why he often vomits up what he ate 6-10 hours before. Something to tell us why his meal sheets from day care are coming home empty and at home he refuses the food he has just asked for.

He's an absolute delight. A 1000 watt smile. Big hugs. Happy songs and clapping. Many words (which at least mommy and daddy can distinguish) and a cadre of rather unconventional animal sounds. Though he doesn't yet walk, he can and does get into anything he wants. If he were a less pleasant little boy, we may have realized sooner that something was wrong. Perhaps we would have been pushier with the "wait and see" outlook of our pediatrician if he had been fussy or if his cognitive development had slowed.

But here we are, with a 14 1/2 month old sweetness who is average size for a 7 month old. With the sympathetic looks of other parents on the playground when we tell them his age. With knots in our stomachs trying to decide if we want our son to need surgery or medicine.

Tomorrow morning Nathan will most likely refuse to drink the barium and they will put a tube down his nose to get it in. Then, he'll cry and beseechingly hold out his arms, and I will ignore his plea and hold him still so they can photograph the barium moving through his intestine. Dave will probably be standing outside the room listening to the screaming. We'll probably cry as well. I'll tell him it's to make him better. He won't understand. Hopefully when he is done we'll all stop crying and only Dave and I will remember it.

Hopefully we'll get an answer.
Hopefully we'll know how to fix it.
Hopefully our sweet, sweet boy's tummy will feel better, his food will stay down, he'll absorb calories, and he'll be too big for me to carry in no time.

Transformation

Today, a week after his first birthday, my baby came to look like a little boy.

He was born with hair and it has just kept growing. For the last 2 months, or so, it has hung in his eyes. I have developed a habit of pushing it aside just so he can see. A week ago I put a barette in his hair and Nathan looked a lot more like a Natalie. We wanted to wait until he was 3 to cut his hair, but it has just become impractical. So today we gave him a little trim.

Before, in the bathtub, with long baby hair.

Shampoo mohawk

During, being distracted by Daddy and a good book.

After, a big boy eats his noodles.

A Collection of Firsts

We have been busy. Work mostly but of course some family adventures.. It's been a long time since I've had a chance to sit down with the computer but I wanted to give you an update of some of the things we have been up to.

Nathan took his first plane trip. After a long snow delay in Pittsburgh we made it to California without further incident. Nathan was a great little traveler.

Very exciting for me was that my little boy Nathan got to meet by big boy Noah for the first time. They got along well and it was a lot of fun for me to have them playing together.

Nathan celebrated his first Christmas in California. Christmas morning was with Grandpa Ken and Grandma Nancy. For some Nathan reason I do not understand he had no interest in the tree. He didn't try to climb it, pull it over (though it did almost fall on me . . . ), or remove any low lying ornaments. He did like the gifts and had a good time munching on wrappings and waving ribbons around. Christmas afternoon was with the other side of the family at Aunt Eileen's house.Nathan celebrated his first birthday with a train cake, a ton of friends and a tasty chocolate cupcake.

A week after his birthday we had the 4th biggest snowstorm in Pittsburgh history. 21 inches of snow fell in 16 hours between Friday afternoon and late Saturday morning. In a rare stroke of luck I didn't have to go to work which gave Dave the several hours he needed to dig out our cars. Nathan got to have his first snow encounter.

He wasn't a huge fan of the snow though if Mommy and Daddy had enough sense to put gloves on him it might have gone better . . .