Charlotte's Journey Home

Just a Regular Kid, Sort Of


Leave a comment

Happy Birthday, Charlotte!

On May 9, 2005 darling Charlotte came into the world four weeks early. On May 9, 2006, I started my blog tradition of a letter to Charlotte on her birthday. In a perfect world, the letter would have been written and posted last night. Our world, however, is not perfect, so she’ll have to read it tomorrow!

DSCN1398

My dearest Charlotte,

My mind cannot process the fact that you are ten years old today. What a magical and frustrating age (for you and for us, I’m sure)! You still have one foot firmly grounded in childhood–as easily awed by the wonders of the world as you are amused by my (sometimes lame) jokes, as eager to please as you are quick to anger and frustrate, and as creative, strong, and kind as you ever have been. Your other foot is on the edge of your biggest journey, into adulthood. I can see that it frightens you a bit, the vast future in which you need to figure out who you’ll be and how you’ll get there.

While the road ahead may be frightening, it will hold as many wonders and as much love as you let it. And there will be potholes (the first of which we hit, literally, on the way home tonight).  You have already traveled further than many ten year olds. You have proven again and again that you are a survivor with a healthy sense of humor. Don’t believe me? Just take a look…

First Birthday  On May 9, 2005, we gave you a cupcake, Karley took a photo, and we went out to dinner (without you) to celebrate having survived a year that included premature birth, heart surgery, 49 days in the hospital, g-tube insertion, cardiac catheterization, and a cranio helmet, not to mention countless vomits, physical therapy, feeding therapy, meds, and more. You were thoroughly unimpressed by the cupcake as you were still largely tube-fed and tiny. A few years after this picture was taken, I finally realized just how scrawny your legs were and how huge your eyes looked in your head. You were (and are) our darling, energetic, bright star; we never saw what others saw–that your legs looked like skin-covered toothpicks. Only looking at this photo now can I understand the concern with which people always asked about your health.

Today’s photo says it all, and yet says nothing. You are still our shining star. And now you know it and ham it up as often as you can. We began your special day with a trip to tour Frank Lloyd Wright’s Robie House because you were inspired by Blue Balliet‘s The Wright Three. Then, instead of your regular cod with chipotle mayo birthday dinner, we took you to our favorite upscale casual restaurant, Summer House Santa Monica. DSCN1414

What this picture doesn’t show is how brave and strong you are or how similar and yet how different this past year has been from that first year. Again, you’ve had a cardiac MRI and open heart surgery. (That broken pinky is nearly forgotten). This time, you kind of diagnosed yourself and let us know something was wrong. There was no drama and you had a textbook recovery. You courageously shared your surgery with your classmates, and in turn they showed you unparalleled compassion. That’s the big stuff. On the smaller side, you went to sleep away camp for the first time, mastered long division, and proved that you can learn a hard piano piece if you put your mind to it. You’ve taken your chess game to the next level, played the piano for charity (the week of your surgery), and given your Belgian grandmother one of her best ever Christmases. My heart skipped a beat when you put change in the tzedakah box this morning, saying that you didn’t feel right keeping Jenny’s entire $10 gift for yourself.

Best of all, you greet nearly every day with a smile or a full on giggle. Ever since you were a baby you have seemed to sense how precious a gift each day is.

So, my darling girl, as you step onto this road ahead, know that you will grow back into the comfort you have with your scars. They do not define you–they decorate you much as the medals on the epaulets of a soldier’s uniform do. You have won the battle, with the help of the inestimable Team Charlotte.

This year Team Charlotte is too vast to mention, for fear that I’ll leave out some wonderful nurse or tech at Lurie Children’s Regenstein Cardiac Care Unit. Thank you all, from the bottom of our hearts.

Charlotte, may you ever grow from strength to strength. And as I tell you each day on your way to school, be calm, curious and creative and remember that I love you, all day, every day.

MFTK 2015

On May 17, Charlotte will be RUNNING a 5K, Move for the Kids, to raise money for Ann & Robert H. Lurie Children’s Hospital. Charlotte chose this race, which she’ll run with her dad and her cardiologist, to mark her full recovery. Please click on the icon to support Team Charlotte. And register to walk or run with us!

Advertisements


Leave a comment

Reflux Chronicle: Passing the First Hurdle

Look at me! I can walk in Mommy’s boots! (Picture by Karley B.)

We are nearing the one-month mark of our g-tube free trial. For the first 20+ days, Charlotte met all of her benchmarks, consistently averaging enough calories (combined fluid and solids) not need the tube.

Additionally, she has begun to run to the table at mealtime, ask if she can carry things to the table, and feed herself the first several bites if she’s really hungry. Part of this behavior is evolutionary (it was beginning at the end of last year).

Partly, I attribute it to another milestone in Charlotte’s life: she started daycare on January 7. Two days a week, while I teach, she is the warm, loving environment of a home daycare provider in my neighborhood. Janet and Ramie, her assistant, take care of 7 to 10 children (depends on the day), all under 3 years old. Most of the children seem to be within 6 months of Charlotte. So, she has some peer behavior modeling, different adults working with her, and a real sense of achievement. We LOVE daycare! (More on that in a few days.)

The first hurdle: As we got to week three of our tube-free trial, Charlotte came down with a cold which then turned into a cough. Her pediatrician diagnosed her with a-typical pneumonia and put her on z-pac antibiotics. Not surprisingly, Charlotte was pretty disinterested in food for about a week. Even the usual lure of chicken soup “with letters in it” didn’t perk her up. We didn’t force it, let her eat what she would, and tried to pack high calories into her low volume.

This is the test–can she bounce back after an illness, eating enough food and ending the two months with the appropriate weight gain. (In other words, if she loses weight during an illness, does she gain it back as effectively as “regular” kids?)

Within 3 days of antibiotics she was eating eagerly again, though her liquid volume is still down a bit.

And, according to our bathroom scale, she didn’t lose an ounce! We have an “official” weight check with the pediatricianon 2/12.


5 Comments

Reflux Chronicle: Days without…

“‘harlotte is eating a sandwich just like Daddy do.” Mommy is fklemt.

We have long been in the habit of counting DWOV (Days without Vomit). Recently, most every day has been a DWOV. So much so that we’ve lost count. Yeah, Charlotte occassionally coughs up stuff, mostly like anyone does with a cold. But when she has a cold, she’s more likely to vomit at meals or in bed. Last week’s cold involved only one bed change and a few small urpcidents. It was a huge milestone for us.

So, what are we counting these days? DWOTT–Days without Tummy Tube. In the past 14 days, Charlotte has taken 100% of her calories by mouth (drumroll, please) a total of 9 days. On the days when we’ve used the tube, it has been for only 40 mls. and only once a day. So, 65% of the time she’s 100% orally fed. And the other days she’s 93% orally fed.

Today at lunch she downed her peanut butter and jelly puree, chomped on some pretzels and blueberries, and then asked for a sanwich. She asked for it. And proceeded to eat about 1/16th of a pb&j sanwich on wholewheat.

Where were we a year ago? She was eating about 50% by mouth and vomiting almost daily, going for only 3 to 5 days without vomit.

2007 has been quite a year.


2 Comments

Reflux Chronicle: Losing Count

I have officially lost count of the number of days without vomit. We’ve definitely broken Charlotte’s world record. We’re not counting little bitty urps (wet burps, really).

Yesterday we did not use the feeding tube at all. If I remember correctly, we didn’t use it on Saturday either. And I cannot remember the last time we took the Zevex pump out of the cabinet.

Dare I say that the reflux is behind us?


1 Comment

In the Toe: A Feeding Clinic Update

On Daddy’s birthday the entire family drove up to Milwaukee for Charlotte’s bi-monthly feeding clinic visit. (An aside: Unlike our previous 2 visits, we made it there and back with no automotive events.)

Charlotte and Daddy. Or “Big and little Geyskens,” as I like to call them.

As we pulled into the parking lot, I asked Charlotte if she was hungry. Here is, more or less, our conversation:

Me: Are you hungry?
Charlotte: Yes! Eating!
Me: Where do you feel hungry?
Charlotte: In the toe!
Me & Philippe (trying hard not to laugh out loud): Where?
Charlotte: In the TOE!
Me: Oh. Where else? Do you feel hungry in your tummy?
Charlotte: No.

During her clinic visit, she ate more than a quarter cup of pureed taco and some pureed refried bean and to drink all of her Pediasure.

I guess that toe really knows what it’s talking about!

—————-

Drinking milk like a big girl. Charlotte loves her open cup. What a mess!

(Check out those biceps!)

And now for the serious part of the update (not that there is much serious about Miss Charlotte): The feeding clinic team is impressed with her eating. They expect that she might wean (or be weaned) off of the g-tube while only eating purees and drinking Pediasure. Chewing may take a while.

Dr. Long is still talking about in-patient weaning, though I dislike the idea more and more (especially during the summer). Frankly, I dislike it because Charlotte and I would be confined to the hospital for 2 weeks. Maybe that would be okay in December once my UIC semester ends, but on a gorgeous August day, yuck. Anyway, we’re on the wait list, so it’s not terribly imminent. Charlotte may make it a moot point if she continues to eat like a champ.

Her increased vomiting is something we just have to live with. Her meds are dosed appropriately for her weight. Basically, Dr. Long, Amy, and Julie (RN) said that if Charlotte isn’t upset by it and is still gaining weight, we should let it be. She’ll mostly likely grow out of it.

Charlotte’s official CHOW weight is now 28.8 lbs and she is 36″ tall. Three feet, baby! The weight gain is a bit low for a month, but we’ve had a stomach flu and a trip to Virginia, so we’ll reassess next week.


1 Comment

Foot Fetish–A Feeding Update

Play piano! Yeah!

Recently on P2P, the wonderful support website for parents of tube-fed kids, a mom asked if anyone else’s kids liked pulling off their socks. Charlotte goes beyond that. She loves to pull of her socks, yes. But she thinks having her feet tickled and “nibbled” is about the best thing ever. We have a blast singing “Boogie-Woogie Piggies.”

So, you ask, how is this crazy blogging mama going to segue from feet to food? (Well, my brother is now asking why I have to use big words like “segue” and I’m sticking my tongue out at him!)

Bummer! I’m wearing tights, so I can’t take my socks off.

Charlotte has been eating terrifically well, for her. She averages more than 600 mls. daily of her 900 mls. minimum. And she takes almost a tablespoon of solid food each meal. It’s not a lot for a regular toddler, but Charlotte is not yet regular in the food department.

Last night she drank her entire dinner, all 240 mls. (8 ounces for you non-metric folks). And, how did I get her to do that you ask? Well, that is where the feet come in. Seriously. She wanted me to tickle and nibble her toes. So, for each five sips she took, I let her pick a toe for nibbling. We did this for a total of 2 ounces. I am not sure how she managed to eat between all those giggles!
On top of that, she’s been taking all of her medicine by mouth all week. Last night when Philippe tried to put her meds in her tube, she said “mouth” and insisted on taking her medicine like big kids do. True story.

I never stop moving.

Why all this progress? I don’t know. But she has started asking to see my “tubey” and asking us to “take out tubey.” I’ve started explaining to her that in order to get rid of her tube for good she needs to eat. Our daily conversation goes like this:
C: “Tubey out” (a bit whiney)
Me: “What do we need to do to take the tubey out forever.”
C: “Eating”
Me: “Are you going to eat like a big girl.”
C: “NO!” Big smile and giggle, “Hungry.”
Me: “Let’s go get breakfast.
C: “Eating!”
Eating indeed!