Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Thursday, January 29, 2015

The Dragons Eliza Wants to Be.

I recently posted about Eliza's ongoing, and worsening, eating issues and how basically after almost 9 years of dealing with this I not only feel like the last man standing at the OK Corral, but that it is really a losing battle to ever get good nutrition into Eliza. You know, by eating, the old fashioned way, like 99.99% of the world does, enjoying a meal, maybe trying something new, or even just sticking to a handful of standby foods, which still afford your body what it needs.

Eliza has lately begun to talk a lot about her two new favorite dragons. "Unknown" and the "Night Light Dragon." 

Tonight at dinner at her favorite restaurant (yes she has one, it makes awesome Shirley Temples and they refill my wine without having to be asked) she drew the dragons below in her sketch book.

Keeping in mind that pen and ink is not Eliza's best medium, the first dragon below has a long tail, big eyes and a night light (a star, just like Eliza's night light) at the top of what looks to be a long tube.  

And it has the words: "Food Goes Here!"

This drawing depicts the dragon named "Unknown."


Unknown has the ability to generate his own food by the combination of water and love (depicted by a bottle of water and a heart).  Like the Night Light Dragon, Unknown does not have to eat.  

Both the Night Light Dragon and Unknown can eat, if they want to, if it is something they enjoy.  But they don't have to eat for nutrition or any of the myriad of things that they cannot tolerate.

I don't know if I am more fascinated by Eliza's creations or scared by them.  For her whole life I have managed to avoid having her use a G-Tube.  From giving her a bottle every two hours for years, to spending your average American's retirement fund on every kind of therapy known to man and woman (mostly woman since I have yet to run into a male feeding therapist).

But what if this is what she wants?  She certainly knows what a G-Tube is and looks like. 

When I asked her about the Night Light Dragon and Unknown she said they were very lucky because they were born with their tubes and didn't need an operation to get them.

This whole thing reminds me of two books I read in elementary school, "Karen" and "With Love From Karen" by Marie Killilea. Karen had either cerebral palsy or polio (I can't recall which).  She and her family struggled for what seemed like years to teach her to walk.  She was eventually able to walk with crutches rather than use a wheel chair. My main recollection of the books was when Karen decided that she would rather use a wheel chair since she could see the world with her head held up, rather than always looking down when she used her crutches.  I recall that her family saw this as giving up, but that Karen saw this as freeing herself from the difficulties of walking with crutches, never having her hands free and always looking at the ground, not the sky.

The story of Karen really resonates with me, because it seems to me that Eliza is reaching an age where she is starting to want to decide how she wants to live and what she can tolerate and what she can't tolerate.

We are a society obsessed by food, good and bad, healthy and pure crap. Having a G-Tube and taking no joy in food, save for Haagen Daz ice cream, popcorn and a few other treats is not considered "normal" in our culture and never will be (and certainly is not a diet that can sustain a person). 

Maybe normal though is overrated?

Sunday, January 18, 2015

So Your Child Has Truly Lost Her Appetite, What To Do?

When I started this journey as a parent of an extremely premature child I will admit I was in a bit of a fog in those early days.  Trying to figure out what the alphabet soup of acronyms Neonatologists threw out in conversation as if I had studied neonatology left me drained. Thankfully the nurses and Google deciphered them for me.  The daily ritual of walking to the hospital worrying about what I might find became numbing.  From my apartment bedroom I could see the NICU lights and would wonder if Eliza was okay and then pull on an old green fleece and walk across the street in the middle of the night to make sure she was okay, or okay as she could be under the circumstances.

The years passed and some struggles continue to this day, some struggles were overcome and new ones arose.  There were the expected pulmonary issues, gastrointestinal issues, growth issues, nutrition issues, delays in speech, gross and fine motor function and some unexpected cardiac issues and neurological issues.  But one thing was constant, the ever present, never ending, feeding issues.

I was lucky to meet a group of women shortly after Eliza came home who were all traveling on the SS Extreme Prematurity and who all had children around the same age as Eliza, who simply could not, would not eat.  All the babies lacked the skills that virtually all full term healthy children come by naturally (or which other micro preemies developed over time) and all had underlying medical issues that made eating a painful and difficult process. Combined, I think we tried every feeding therapy known to humankind.  Some small steps were gained, often followed by giant backward steps.  Some children learned to eat to a degree where at best they are "picky" eaters, others still rely on G-tubes and still others, like Eliza, have simply not mastered the art of eating, take little to no joy in eating, eat a very limited number of foods and seemingly have no sense of hunger.  It was a relief to know that I just didn't suck as a parent in the most basic, natural thing we can do for our children which is to feed them.

When Eliza left the NICU she was discharged with a list of specialists.  As long as that list was, I was prepared for her to see these specialists since they were for issues that she was already being treated for in the NICU.  But along the way in Eliza's early months home she showed no sign of hunger, had to be woken up or fed in her sleep.  She never cried for a bottle.  Eliza was referred to Early Intervention for feeding therapy.  After 3 years of feeding therapy with both occupational therapists and speech language pathologists,  Eliza had only mastered eating yogurt and continued to rely on liquid nutrition.  Sure there were the occasional days when she would take a bite of something and I was thrilled. I was thrilled the day she drank soy sauce, but it was a feat never repeated again. I remember posting a photo of Eliza taking a bite of pizza.  After I posted the photo everyone who saw it assumed that everything had been cured and Eliza was now eating like a pro.  In hindsight I suppose it was foolish of me to ever ever post a photo of Eliza and food, but like any parent I was proud of that moment, even if was not at all representative of what Eliza can and did eat at the time. Feeding therapy continued for another four years. 

The general attitude among most of the medical world does seem to be one that sort of minimizes feeding problems since, let's face it, they can be instantly "cured" with a G-Tube. This attitude of course does not factor in the huge portion of our social interaction that revolves around meals and food and that if you have no interest in food or can't tolerate being near food, or certain smells, your social interactions will be limited.

2014 started out as a promising year for Eliza for eating.  She would eat a certain type of chicken, pepperoni slices, a certain type of pizza and one or two silver dollar pancakes, nutella and some peanut butter.  None was in a quantity to provide adequate nutrition so her diet still consisted of at least 50% of protein drinks.  By some small miracle, Eliza had actually made it to 49 pounds at 8 years and 8 months and had finally grown to 48 inches tall. When she was weighed and measured at her beloved gastroenterologist in the beginning of November, Dr. L., my mother and I almost threw a party.  I had long ago made peace with the fact that Eliza would likely never be a person to delight in food, that she would probably always need protein shake supplements and that her repertoire of foods would likely be limited, but at least she was growing and enjoying some foods.

2014 was not however a good year for Eliza in other ways. She suffered greatly with anxiety for a good part of 2014 (the source of which I've previously posted), but by November and after lots and lots of therapy she was doing pretty well, had a coping "menu" of things to do when she felt anxious and overall was a pretty happy kid so long as she was within her scope of safety. 

Since Eliza was at a pretty good place at that point weight wise and her anxiety seemed to be in check, the good doctors and I thought there was some wiggle room to address her ADHD with medication.  Everyone knew that there is often a decrease in appetite from ADHD medications, but since the medications are out of your system in 12 or so hours we agreed it was worth trying.  If Eliza's appetite dropped off, I could stop the medication and presumably her appetite would return to what it was. And in theory that is what should have happened.

But there is always someone out there to disprove the general consensus.  And that someone is little Eliza.

The medication (which I will not name since it has helped many other children with ADHD) was, by week four, an unmitigated disaster.  There were some side effects that were extremely troubling (and lead to another medication) but one critical side effect was that Eliza stopped eating.  Not just a decrease in appetite but pretty much stopped eating.  And then she started to limit her liquid intake as well to about 16 ounces a day, 20 on a good day.  She also stopped anything resembling a normal sleep pattern, sleeping an average of 6 hours or so a night and not falling asleep until 2 or 3 in the morning some nights.

But although the medication was stopped, Eliza did not regain her prior appetite, mediocre as it was, despite me being assured that the effects would wear off almost immediately.  Now, weeks later, Eliza again rarely expresses hunger, does not eat the foods she had started to eat (pepperoni, chicken, pancakes) and has to rely almost exclusively on protein shakes for nutrition.

Ironically medication number 2 (which I will also refrain from naming since it has also helped many children) usually increases children's appetites to the point where parents become concerned about their children are becoming overweight. Eliza did not enjoy that side effect.  That medication was stopped for other reasons.  And still Eliza's appetite did not reappear.

It seems as if Eliza and I are back almost 8 years or so ago when Eliza was an infant/toddler with no appetite subsisting on a primarily liquid diet.  There are rare days where there will be something approaching a "normal" meal for her (a small slice of thin crust pizza with pepperoni) and then multiple days of nothing except a few GoGurts.  It is as if her internal clock for hunger has lost its normal cycle.  

Which makes me wonder, when you use a medication that has a potential side effect of decreasing appetite and the person's appetite is already on the extreme south end of normal, does it basically eliminate a sense of appetite? And if so, how do you trigger even that small appetite to come back from the abyss?  The usual appetite stimulant that gets trotted out, Periactin hasn't worked.  There are a few other stronger/different medications out there known to increase appetite, but none which, to me, seem quite right for an almost 9 year old because of the potential side effects or the nature of the medication.

Eliza is a a very creative child and she loves dragons.  She has created a dragon who does not have to eat, he can create his own hydration and nutrition in his own stomach without having to eat.  Kind of telling one how Eliza views food.

I can't blame this all on the ADHD medication.  But you would think 7 years of feeding therapy would have had some lasting effect.  But no, despite the best efforts of some wonderful therapists.

And while I also leave comments open, please do not post any comment that begins with "have you tried ___? My son/daughter loves _____!"  

Saturday, December 20, 2014

The Annual Santa Review

For those of you following our tradition of searching for the "perfect" photo of Eliza and Santa, let me re-cap the past 9 years  before I unveil the 2014 photo.

The evolution of Eliza's relationship with Santa begins in 2006 (and for those of you concerned about the germ factor for the early years, I will tell you the secret and it isn't photoshop).

2006:   Fits in the palm of Santa's hand:

2007:   Deer in the headlights:

2008:  Abject terror and she leaps from Santa's lap (scaring the bejesus out of Santa):

2009:  Starting to think this isn't so bad, but certainly not talking to Santa:

2010:  Quite thrilled with the old guy and even chatted it up with Santa:

An added bonus for 2010, the Richter Cousins in their Ugly Sweaters:j

2011:  The dynamic changed.  Eliza realized that Santa was the key to getting a Wii, and World Peace, so she ingratiated herself to him by giving him a thumbs up to everything he had to say:

The Richter cousins also took a moment with Santa, sans Ugly Sweaters, but with oddly mismatched outfits:

2012:   Now at first you may be dismayed at this somewhat angelic photo of Eliza with Santa (but do not despair dear readers...).  

Sweet, eh?

Santa invited the Richter cousins to sit and talk about World Peace and finished up asking Eliza to do a portrait of the two of them for him to bring back to the North Pole:

We took our leave of Santa and headed to the elves who will gladly give you photos from Santaland for a small donation.  

And before our eyes what wonders did appear!  

We didn't have Ugly Sweaters this year, or a wee child leaping from Santa's grip this year.  

Instead we discovered the "Give Me the Toys Old Man" photo:

Yes!  And here I thought we would break our tradition of spontaneously bad Santa photos! Perhaps Santa was aware of Eliza's unlady-like sneer before he met up with us and was simply cowed into giving into Eliza's demands?  Perhaps he wasn't as sweet as we thought, but just scared to say no to Eliza?

2013:   After 8 years of visiting Santa Eliza realized it is all about the list (which always includes first and foremost World Peace) so she insists that Santa give it a good read before the official pose.

Eliza is going for a mature look, no antlers this year.

2014:   Nine years of visiting Santa!  It's very hard to believe Eliza is only a year away from marking her first decade with Santa.   And it is also a bit shocking to realize as she sits on his lap that her list if 5 feet long!

May Christmas bring us all Peace, Love, Joy and Laughter.

Much love,

Anne and Eliza Grace.