Sunday, December 30, 2007

Introducing...

Charlotte's red glasses. She's had them for a week and she reminds us to put them on her. My favorite glasses moment? Last Thursday night (her first night with glasses), we sat down for storytime before bed and she said, "Now I see Iggy!" Yes, she said "I." And, yes, she was talking about her boyfriend Iggy Peck. But the part that floored me? The fact that she immediately noted the difference in her vision.

Stay tuned for the purple glasses!

Many thanks to Brandi for the gorgeous photo.

Tuesday, December 18, 2007

Charlotte Reads: Iggy Peck, Architect

(Click on the title of this entry to hear Charlotte reading Iggy Peck, Architect by Andrea Beaty with illustrations by David Roberts.)

Of course Charlotte reads Iggy Peck, Architect. She's been reading Iggy obsessively since he first took her attention away from Elmo in October. If you know Charlotte, you know that distracting her from an Elmo book is pretty big.

Mom loves Iggy. I've given at least 4 gift copies. I am one of the reasons that our local Barnes & Noble can't keep it in the store; I hand it to every person I see when I'm shopping!

Charlotte must love Iggy, too. She can repeat the entire book from memory, with no prompting, and often does so randomly (like in the grocery store). She has carried it in the stroller and had me read it to her while we walk (as Mo Willem's Pigeon would say, "True story."). It's a good thing that I, too, know the book by heart or we might have walked into a brick wall.

Why do we love Iggy? Well, to start with, he is bright, creative, and fun without being mischievous. Andrea Beaty's rhymes sing and inspire; her word choices encourage language play and vocabulary building; and her story begs the reader to pick up an encyclopedia and look up some nifty buildings. David Robert's illustrations are urban and hip. He gives just enough detail (check out the "things that one should not mention" on the page where Iggy becomes a hero) or none at all. When Iggy is crushed by his second grade teacher's edict against building, the double-page spread shows nothing but a dejected Iggy at his desk, his pencil on the floor. A whole lot of white space = Sheer Brilliance.

We first met Iggy in mid-October and it was love at first read, so we were not surprised to read that Time Magazine had named Iggy Peck, Architect one of its Top 10 Children's Books for 2007. Charlotte and I are proud to say, "Yeah, we knew that."

Tuesday, December 11, 2007

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.

Tuesday, December 04, 2007

Happy Hanukah!!

Or is it Hanukkah? Or Chanukah?
And while we're on the subject, do you pronounce latke laht-kuh or laht-key?

These are the age-old questions of the holiday!


And, in case you were wondering, when Charlotte woke up on Tuesday, she was more excited that it was mommy's birthday (was it tacky of me to mention that?) than that Hanukah was about to begin. Of course, once she opened her present, that was all over! The KidKraft Menorah had to sit on the windowsill during her bath and then on her bookshelf when we put her to bed. The minute she came downstairs this morning, she declared "Mommy brought Charlotte's Hanukah downstairs! Charlotte play with that?"
Josh Malina was recently quoted in People magazine discussing his family's Hanukah celebration:
Hanukkah celebrates a time when Jews weren't allowed to observe their religion,
but they still did. It's about being proud of who you are. I feel power in the
fact that when I'm lighting Hanukkah candles, Jews all around the world are
doing the same thing. We feel the same way.
In that spirit, I leave you all with my best wishes for a wonderful Hanukah and with the words of Debbie Friedman, "Be gracious to the ones I love and bless them with goodness and mercy and peace."

Friday, November 30, 2007

Medical Update: Opthamolgy Report--Strabismus


Charlotte had her annual eye check up on Friday. And as Gilda Radner would've said, "It's always something...."

We were a bit concerned because we'd noticed that her right eye tends to cross in when she's concentrating. Typically we could see it when she was eating, especially if she was fighting us or being super silly during a meal. By the time we got back from Belgium, we thought we could see it less, that it had corrected itself.

But...bottom line is this: Charlotte will soon be sporting a pair of bifocals. She has a minor strabismus of the right eye. (Yeah, in the photograph it looks like her left eye.)
This is not, as the website I've linked to notes, something that Charlotte will outgrow. As much as we cringe at the thought of marring her lovely face with glasses, we know that early detection and treatment is the only solution to a strabismus. Charlotte's strabismus seems to be intermittent, so the glasses are our first course of action. It is my fervent prayer that it will be our only course of action. Philippe suffered through years of ocular therapy as a child and does not remember them fondly. I sported a patch. My cousin had surgery. Hopefully, because Charlotte's strabismus was caught earlier than any of ours, the glasses will be it.
We're planning on making a family outing on Saturday to choose the glasses and then to get them on her as quickly as possible. We'll follow up with the eye doc on January 29.

I have no more answers to our myriad questions because this doctor (notice I have not named names) is the only doctor we've encountered in nearly 3 years who doesn't make a few minutes to let a parent gather her thoughts and ask questions. Because this is a public forum and I know that our medical community occasionally reads the blog, I'll say only this: Charlotte's eye doctor is one of the best pediatric opthamologists in the Chicago area and I trust her with my child's eyes. I am, however, incredibly frustrated that she does not take the time to allow me to ask questions and become as informed as I can about my child's vision problems. Philippe is coming to the next visit with me so we can make sure we get answers.
Don't be calling my kid "four-eyes"--she'll kick your behind!

Wednesday, November 28, 2007

Charlotte in Belgium

Charlotte had a grand time in Belgium visiting Nenenne (Philippe's mother), Tante Mich, and Philippe's aunts and uncles, and our friends.

How were the flights?

She barely slept on either flight. Daddy helped her get some rest


She read Olivia Counts over and over on the way there and Iggy Peck about 7 times on the flight home. She recited Olivia and the Missing Toy and Iggy Peck spontaneously several times each day.


She sang Mamma Mia on request at each visit. Imagine her delight when Philippe's friends joined her in duets!

What were Charlotte's favorite moments?

Her first piano lesson, given by the maestro Tonton Ric.


Snuggling with Nenenne. She's already asked several times since we got back if we're going to see Nenenne in the morning.


How did she eat? Beautifully. We crossed our fingers and crossed the Atlantic without the Zevex pump (because we don't remember the last time we used it). We syringed no more than 90 mls. per day. She sampled olives and pate, chowed on french fries and potato chips, and discovered curried chicken.


The funniest moment? Charlotte grabbed a handful of french fries from my bowl at lunch one day. She then dunked a fry into her bowl of chocolate pudding, stared at it seriously for a moment, shoved it into her mouth, declared "yummmm," and chewed it right up! Not only did we hold our breath as she contemplated her culinary concoction, but at least one other family in the restaurant watched and giggled.

She's transitioned back to Chicago time beautifully, perhaps because she never really transitioned to Belgian time. And, according to Jenna, she's spontaneously speaking French, answering "oui" to a question yesterday.

Thursday, November 08, 2007

Feeding Clinic Visit: Drug-induced Munchies (legal, of course)

Philippe and I took Charlotte to Children's Hospital of Wisconsin on Thursday for a meeting with the Feeding Team and for Charlotte's PIE (patient in-patient evaluation) in preparation for our January or February in-patient stay.

Weight: 13.6k (30.6 lbs).
Height: 3 feet 2 inches tall!

A year and a half ago Charlotte was barely on the growth chart. Now she registers 95th percentile for height (97th if we were to adjust for gestational age).

The nutritionist, psychologist, and SLT were happy with Charlotte's progress. According to the food journal that I did last week, she is taking 90% of her calories by mouth. They still thought that an in-patient stay would benefit Charlotte and help us get her off of the g-tube completely. We asked a lot of questions, the most important of which (for me) was "Do we really want to put a healthy heart patient in the hospital during the height of cold & flu season?" I didn't really get a response to that and we moved on to other things.

Next we saw the GI doc. She started our visit by looking at Charlotte's chart and saying, "She's 90% there and we're talking about a January admit. Are you sure you want to put a healthy heart kid in the hospital when the sickest kids in Southern Wisconsin will be here?"

Finally, I thought, someone who hears and understands my concerns!

Dr. B. went on to say that she would like to try switching Charlotte's antihistamine (currently Zyrtec) to something that will give her the munchies (I can't pronounce or remember it). She thinks that this new medication will help Charlotte wean herself off of the g-tube. Dr. B. is going to consult with our pediatrician (since she prescribed the Zyrtec) to get the Rx changed.

So, we're waiting for the munchie-inducing prescription and NOT checking into the hospital in January.

Despite my clinical report, I'm jumping for joy!

Monday, November 05, 2007

Charlotte Reads: Announcing a New Blog Feature




Charlotte's medical updates are fewer and further (farther?) between, so I've decided to add a regular feature to the blog: Charlotte Reads. I've thought about making a separate blog, but Philippe suggested I keep it here.



Charlotte Reads will be just that--Charlotte reading her favorite books with me, her dad, Karley, or whoever is there when I turn the videocamera or Zoom H2 on. The mission: To share the books that Charlotte is enjoying (hmm...obsessing over?) at the moment. It grows out of my not wanting to compete with the fabulous kidslit bloggers out there and not wanting to write more book reviews and not wanting to have a kidslit blog of my own. Charlotte's interaction with the book will serve as its own sort of "review."




And in most cases she will not be reading The Cinema of Latin America, although it is one of her current faves.



video

Reflux Chronicle: Hot Chocolate


This is the post I never ever thought I'd be able to write. It's bringing tears to my eyes as I type.

Today, Charlotte and I rode our bike to the playground (I pedalled, she tickled my tush). As we began our ride home the sun was setting, the temperature was dropping, and the wind picked up. It must've dropped 10 degrees in 10 minutes. Charlotte didn't notice until the last 5 minutes. Mommy Reynaud's, however, was literally going numb. I took me several minutes to undo the velcro straps on Charlotte's feet when we got home because my fingers weren't working.

So, I put on the kettle and set about making hot chocolate. Charlotte squealed with delight, "Harlotte have some!!" Not a request, not a command, simply a gleeful shout.

I poured an ounce of hot chocolate into a cup, swirled an ice cube in it, and handed it to Charlotte. She sucked it down faster than you can say "Skippy Jon Jones, Skippy Jon Jones, Skippy Jon Jones," handed the cup to me, and declared, "'Harlotte all done."

It wasn't mealtime. She wasn't in her chair. I didn't ask her to eat.

She just jumped at the chance. I'm so proud that it was for hot chocolate!!

Friday, November 02, 2007

Children's Memorial Hospital: New Doc On Staff?


I am sad to report that I missed the first Halloween that meant anything to Charlotte. I was busy teaching (and I let one of my students leave early so she could take her kids trick or treating because I was sad to miss Charlotte's first outing).

But, as you can see, Charlotte had a blast with her gal pal Karley. Here's what Karley had to say about Halloween with Charlotte:




We went trick-or-treating across the street, she loved it! She got a lolly pop
from someone that she wouldn't let out of her site once we got home.



I heard from Karley and Philippe that Charlotte was so excited for trick-or-treaters, too. She gave them candy and when they left, asked to see more. In fact, yesterday morning she was still looking for trick-or-treaters.
Charlotte's costume was a gift from our friends at the Children's Memorial Foundation. She's not just a doctor, she's a bubba doctor. She has already declared that she'll be a bubba doctor again next year.

All photographs (c) Karley Beery, October 2007

Wednesday, October 31, 2007

Children's Memorial (New) Hospital Update: Heliport Needs Your Help

As most of my local friends have heard, Children's Memorial Hospital is getting set to build a new state-of-the-art facility in downtown Chicago, adjacent to Northwestern Memorial Hospital and Prentice Women's Hospital.

This is terribly exciting for so many reasons. To mention just two: Women like me would be only a wheelchair ride from their child in special care, as opposed to the 3 mile separation I suffered for several days after Charlotte was born. And, as children with diseases like spina bifida and CF live into adulthood, the pediatric specialists can work with the adult specialists on research and care. As we like to say in pediatric philanthropy, it's a "terrible" and exciting problem to have--children living into adulthood with diseases that formerly killed at young ages.

Children's is a trauma center as well as the finest pediatric hospital in Illinois. Our heliport helps us save lives of children who need our services by allowing their quick, safe, critical transport to the hospital.

Neighbors of our new location are protesting and blocking the heliport. Some of their objections?
Noise at night. CMH receives on average 6 heliport transports a month. Most of them arrive during daylight hours. Think about it--many critical injuries are due to school sports and daytime events.

Helicopter accidents. Of course, given the Michigan organ transplant accident this summer, we appreciate this concern. However, the Children's Service Board Children's Memorial Hospital Transport Team has never had an accident. Medical transport accidents are rare.

What would you want to do if it were your sick/injured child or grandchild? Rely on an ambulance or a helicopter to get her the best help as quickly as possible.

Sadly, Chicago politicians are more focused on the location of our Children's Museum right now.

Please, help us refocus their attention. Take a moment to click here and read the brief page at the CMH website about the heliport. You can download a customizable letter to send to your local alderman, city council, or legislator.

I ask not for me and Charlotte, but for your children and grandchildren, your kids' playmates, and any child in Illinois. They all deserve the best medical attention we can give them and they deserve to receive it in a timely fashion.

Thank you.

Monday, October 29, 2007

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?

Saturday, October 27, 2007

Go Red Sox!

Here in Chicago we cheer for the Red Sox. Not because our Cubbies disappoint, oh no. At the Geyskens-Goldman household, we cheer for the Red Sox because we were born to do it. As my brother said when he eulogized my dad, we have Gomez to thank for the curse of the Bambino. So, for Hal, for Dad, for Cousin Eric, and all the extended Goldman and Dorfman clans in the Boston area, Charlotte has this to say.



And, in case you're wondering. We have not washed her Red Sox socks since last week.

Sunday, October 14, 2007

Eating, Singing, Growing: A Charlotte Chronicle

Eating: Charlotte is still drinking the same amount as last reported, anywhere form 75% to 100% of all of her Pediasure. She's increased her solid intake significantly, taking as much as 4, even 6 ounces of solid food at a meal. Recently, she's begun to ask for "chewy" food. She has begun to realize that her food is pureed and she wants to eat Mommy and Daddy's food or the "chewy" version of her food. Today it was sphagettios, last week hot dogs. We are loving this development. It does, however, present a challenge: She chews very, very slowly and simply cant take in any volume this way so it is an inefficient way to assure her caloric needs are met.

She knows how proud we are when she eats. A few days ago she told me to take her picture because she was feeding herself (I'll post video here tomorrow.)

An eating anecdote: Last week Charlotte and I didn't feel well so we had a very slow morning, pajamas until 10:00 a.m., no breakfast, etc. At 10:30 we went to brunch around the corner. Charlotte, whom I'd had on a liquid diet for a few hours, was HUNGRY. She practically grabbed the yogurt out of my hand and had shoveled most of it into her mouth by the time I got my coffee. Then she continued to nibble at toast and drink her milk while I ate my breakfast. She chatted, flirted with the server and bus boy, and burst into song. She was an absolutely dreamy date.

It's hard to remember where we were with feeding a year ago. Here's a flashback link.

For the record, she's vomited maybe 3 to 4 times in the past 23 days. Last week it was due to either a cold or tummy bug and was hours away from any meal (so it doesn't count in my book!). Prior to that, she'd eaten so much (voluntarily) that I think she simply had too much in her tummy.

Singing: Charlotte loves to sing. She wakes up singing. She sings all day long. She knows the tunes to all her favorite songs and will sometimes make up the words. She has a little repertoire of songs for which she knows some words and that she asks for by name (Mamma Mia, Elmo's ladybug song, Hippo Hippopotome).

This past week she started singing words to songs she's only hummed before: Old McDonald, Au Clair de la Lune, and Momma Mia ("mommy mia, here I go again"). Simply too funny.

Growing: At last weight check (Her flu shot on 9/29. By the way, she'd want me to tell you that she didn't cry for the flu shot. Her daddy says she did. You decide) Charlotte weighed 30 lbs. She's either holding steady or fluctuating plus/minus 100mg. Dr. Salem, pediatrician extraordinaire, seems unconcerned. We'll see in 3 weeks what the CHOW team thinks.

My giant baby is more than 37" tall. And as she tells me daily, "'Harlotte not a baby anymore. 'Harlotte a big, big girl."

Tuesday, September 18, 2007

Gold Star For Charlotte

Do teachers still give gold stars for 100% scores? Well, Miss Charlotte earned a gold star today. She drank 100% of her Pediasure. No tube.

Other news--yesterday's weigh in gave a weight of 13.7k (30.25 lbs). Per the pediatrician's scale, that is a full half pound more than she weighed 2-3 weeks ago. We go back on 9/29 for a flu shot and weigh in. Stay tuned.
By the way, did you ever wonder what Charlotte is doing while Mommy is blogging? I snapped this about 10 minutes ago.

(Daddy, this one is for you; your last glance before bedtime.)

Sunday, September 16, 2007

18 or Why I Haven't Blogged about Eating in a While


Eighteen is a wonderful number in the Jewish tradition. The Hebrew letters, het and yod, that make up the number 18 also spell the word "living." For that, and a variety of other reasons, the number 18 is a lucky number. Jews frequently wear its symbol around their neck, we say "L'chaim" ("To Life") when we toast one another, and we give multiples of 18 when we make philanthropic donations.

At our house today, 18 is a particularly wonderful number. Charlotte has not vomited in 18 days. This is the longest period of time without a vomit since our 15 day streak in January. And it follows a very long, terrible period of daily humongous vomits.

So, how is eating going? Check it out.


Charlotte is drinking +90% of what we ask her to drink (600 mls of Pediasure) daily. She's taking an average of 440 calories in solid food (puree mostly) each day. She runs to the table for meals instead of away from the table. She feeds herself. Well, sometimes. She's excited to try new foods and to eat fresh fruits. This week she tried (and LOVED) brussel sprouts (pureed with lots of butter and chicken broth, of course). She also loves it when we all eat together and she has the same food as mommy and daddy, even if hers is the mushy version.


I won't know about her weight gain until tomorrow, but I'm optimistic.


Best of all, meals have been fun for all of us.

Thursday, September 13, 2007

L'Shana Tova Tikatavu

Charlotte asked me to wish all of her family, her friends, and the extended Team Charlotte a Happy Jewish New Year, L'Shana Tova Tikatavuh.

We hope that you all have a sweet, joyous 5768. May it be a year in which you take the time to smell the flowers, not caring if your pants fall down while you do it.....
A year in which you find the time to explore the extraordinary....And, most of all, a year in which you stop to revel in the ordinary, recognizing & cherishing the miracle and gift of life itself....
All of you--the friends and family we know and love, our P2P online support group, the medical professionals who have cared for our darling--all of you have helped our miracle happen. You have witnessed it, facilitated it, and cheered it. We get to watch Charlotte grow and thrive every day and we are so grateful (I hope you don't get sick of me saying that) for her, and for you.

Tuesday, September 11, 2007

Jeffrey B. Gardner


I thought about catching ya'll up on Charlotte's feeding, but given the date, I think that can wait until tomorrow.

Instead, I'd like to ask you all to remember my friend Jeff Gardner who perished when the Twin Towers collapsed on 9/11/2001. I wish that Charlotte had had a chance to know Jeff. They would have giggled a lot together. At the very least, I hope she can lead a life that emulates the life he led.
I share with you this essay that I originally posted on my LiveJournal page last year:

Jeffrey B. Gardner died 6 years ago today when the World Trade Towers collapsed. I had known Jeffrey for as long as I can remember, growing up in the same town (Livingston NJ) and attending religious school at B'nai Jeshurun together.
More than a boy I grew up with, Jeffrey was a dear friend throughout my high school and college years. We were both socially conscious teenagers and active in our temple youth group and in JFTY, the Jersey Federation of Temple Youth.

Like all of the people who have signed his guest book, I can attest to Jeffrey's special qualities--his goodness, kindness, wisdom, and sense of fun. I can also recall his pride as he listened to his father sing in the temple choir on the high holy days, his clear affection for his siblings, and his love for his mother.

Jeffrey and I, along with 20 other Jewish teens, spent a special summer together in 1982. As part of the JFTY Urban Mitzvah Corps, we lived in a fraternity house at Rutgers (later Jeffrey's alma mater) and volunteered for various organizations in the New Brunswick area. We worked with the elderly, disadvantaged children, and the disabled. In the evenings we studied and played, enriching our Judaism and bonding as a group in a way that is immeasurable. Jeffrey lived his Jewish values and he taught us how much fun (and mischief) we could have within the limits of a moral, thoughtful life.

My father had a special place in his heart for Jeffrey. Not just because they were in the same business, but because Jeffrey was respectful, forthcoming, and friendly. In business, my father could count on Jeffrey, just as I could count on him as a friend.

Since Jeffrey's death, I've learned that he continued to live those values for the rest of his far-too-short life. He read the Christian Bible and the Koran in order to understand other people's belief systems. He volunteered with Habitat for Humanity throughout the hemisphere. He worked hard at his career and prospered.

In his obituary, his sister Amy noted that he had a sun tatooed on his ankle because "a good day was as bad as it got. " Jeffrey shone like that sun. Even when we weren't in touch for a long time (we hadn't spoken for about 3 years before his death), I felt his presence and the mark that he made on my life.
On that perfect sunny September morning, a day eerily like today in Chicaog, hatred hilled Jeffrey. The irony that intolerance killed a soul who embodied tolerance is not lost on me.

I dedicate today to Jeffrey--as sad as I am for his loss, I strive to live a life of which he would have been proud, to be tolerant and kind and strong as a tribute to his memory.

Rest in peace, dear friend. You are indeed Z"L (Zichrono Livracha), of blessed memory.

Sunday, September 09, 2007

28 Things I Love About 2 Years Old


Charlotte is 28 months old today. (Aside: I wonder when we stop marking months and just talk about years. Is it important that I celebrated by 501st month on the fourth of September?)


In honor of this momentous occasion, I want to share 28 things I like about two years old:


1. Stream of consciousness thinking out loud. I read somewhere that toddlers think out loud because while they've acquired language, they've not mastered it enough to think quietly inside their heads. Charlotte talks constantly, speaking all her observations out loud.

2. Narration and storytelling. In addition to her most private thoughts, Charlotte shares stories constantly. She tells us what happened today and yesterday. She has no concept of verb tense, so we have to figure out historical context. Most recently she remembered that "Mommy took Peter to the doctor," referring to a rescue mission Charlotte and I made in March when a friend was stranded at a hotel and needed to get to an emergency room.

3. Exuberance.

4. Love of books. She could read all day long. Today's favorites are Charlotte Doyle's The Bouncing, Dancing, Galloping ABCs; K. C. Olson's Construction Countdown; and Jon J Muth's Stone Soup.

5. Laughter and silliness.

6. Morning piano concerts. "Mommy get coffee and sit in green chair. 'harlotte play piano." Every morning. Guaranteed 6 minutes of hot coffee, giggles, and relaxation.

7. Hugs. Kisses. Randomly. All the time.

8. Ritual. Every night we read the same book (Muth's Stone Soup). She knows it by heart and "reads" it with me. At dinner time she always tells me "dinner time, thend Daddy come home!!!then bath time, then Stone Soup, then bedtime.."

9. Mommy can do no wrong. For now. I'm savoring this. I know this phase passes quickly and will soon be gone forever.

10. Learning to play with other children, not just next to them. Several weeks ago we went to a picnic for the Chicago Belgian community and Charlotte played catch with another little girl for about 20 minutes. The moms just watched. It was a major developmental moment for us.

11. Doing something "risky" because a friend did it first. Charlotte is a scaredy cat. Seriously. She's been refusing to go down the slide since May when she went down a hot slide. She doesn't climb much, and she's never been interested in the "big girl" swings. Until today. When she saw Sarah on the swing, she was convinced she had to try it. They gleefully swung side by side for 10 minutes.

12. Enthusiasm.

13. Teaching herself the alphabet and numbers. I realize Charlotte is not a genius, but watching her teach herself letters has been the highlight of the past four months.

14. Obsession with stop signs. We have to talk about every stop sign we see, what color it is, what letters are on it, and what we should do when we see one.

15. Eagerness to please. Again, I know this will pass....

16. Music. Charlotte literally wakes up singing. Wish I could get it on tape. Typically she wakes up singing "Sur le pont d'Avignon" or "Bon jour, Maman. Bon jour, Papa," both from her music class.

17. Her pace. Charlotte makes me slow down while she examines a leaf, checks out the texture of a wall, or just sits down. How refreshing to walk at a toddler's pace and experience her wonder of the world.

18. Growth. Every day. In so many ways.

19. "Puz" (because)

20. "Bayaya"(balloon)

21. Sense of humor. Charlotte has a typical toddler's sense of funny and she regularly melts into giggles over the silliest things.

22. "Daddy is a daddy daddy daddy daddy DADDY." " Mommy is a mommy mommy." (The highest form of compliment, apparently."

23. Acceptance. I don't know if Charlotte understands that other kids eat everything they are supposed to or that not everyone has a big scar down their chest. She troops to the doctors, does her therapy, and never complains.

24. Boo boo kisses. She gets them. She gives them. She thinks they can fix any and everything.

25. Bubba and Nemo and Kitty and New Puppy and all of Charlotte's friends. These stuffed buddies are her world. She dresses and plays with them, tucks them in, and hugs them.

26. Representational play. We recently had our first tea party. Once I had all the friends lined up and the cups out, we piled the plates high with plastic cookies. Charlotte then took my cup, went to her toy refrigerator, and got me a cup of COFFEE for our tea party. (Yep. She's her father's daughter!)

27. Pure, unadulterated, unconditional love and affection.

28. Charlotte is my hero. I read a poem recently on a mom's signature on P2P about exactly this--that our kids look at us and think (when they are two) that we are wise and strong and can fix everything with a boo boo kiss. Would that it were true! I look at Charlotte and know that I will never be as strong as she is. I know that in two years she has taught me more about what is important in life and love than any other person I know. And she continues to teach me every day.

Thursday, August 23, 2007

One Day Later

"Harlotte wearing Mommy's sunglasses" (That's what she calls herself. That or "you.")


Okay. I know I can't declare success after just one day. And I certainly can't declare success when Charlotte drank only about 65% of her Pediasure today.

But, hell, SUCCESS!!!!!!!!!! At dinner tonight Charlotte (1) willingly went to the table (2) ate four ounces of (pureed) refried beans by herself. She took the spoon from me and insisted on feeding herself. And...(3) on the way home from a playdate this afternoon she ate thirty or so Cheerios and three Teddy Grahams. She asked for them.

Yeah, she vomited after/during lunch. She was really congested. But, really, today was a sea-change.

Wednesday, August 22, 2007

Reaching Astonishing Heights A Feeding Clinic Update

Charlotte and I made the trek to Milwaukee in time for a 10:00 a.m. appointment this morning. Despite the fact that I thought I would nod off in the car, we made it on time and in one piece.

Of course, the team was running a bit late. But, as they always tell me, their schedule is a "best guess" as they deal with in-patient and out-patient kids.

"Get to the astonishing height, already," you're thinking, tapping your foot. Here it is, Charlotte measured 37 inches. Yes, 3 feet 1 inch. She had lost about 100 grams, but given her growth no one was worried about it.

The concerns we took to them:
--Mealtimes have turned into mini-battles again. She screams "no eating" and runs from the table when we tell her it is mealtime.

--Her Pediasure consumption seems to have decreased back to 65-75%. (I say "seems" because I haven't put the amounts into my spreadsheet in a while.)

--We're seeing at least one large vomit daily.

--Feeding Charlotte four times a day is beginning to take its toll on me. I end up in tears several times a week or I yell at Charlotte. None of this, of course, is good for Charlotte.

The team's response and strategy:

--We're reducing Charlotte's Pediasure intake from 800 mls. to 600 mls. per day. This will allow me to feed her only three times a day. Woo hoo!

--We need to assure that she gets an additional ten to twelve ounces of liquid daily to keep her hydrated.

--We need to get four hundred to five hundred calories of solid food in her each day.

As I have mentioned before, there is still the possibility of Charlotte and I going in-patient for what I call "feeding boot camp." (I'm sure the Feeding Team calls it something much nicer and more clinical.) She's been on the wait list for about six months. We're planning now for a January or February admit depending on the progress Charlotte makes between now and then and, of course, on whether our insurance approves this plan.

In-patient So, I'm imagining a hospital-studio apartment, something a little cozy, with a one-way mirror (for me to watch the clinicians feed her and vice versa). I'm thinking a carpeted floor, playroom, etc.

Here's the reality: A large, private hospital room with one bed. Mom or Dad get to sleep on the pullout chair (so good for my dysfunctional SI joint and insomnia). I can watch television in the room while she sleeps (yeah, right). There is wifi and a parent resource room. There is Child Life which may have a playgroup. We're confined to the hospital for two weeks.

If we need to go, we'll go. Philippe will come up for weekend(s) and, hopefully, we'll get a room at the Ronald McDonald house so we can alternate who sleeps in hospital. (Or, we'll get a hotel room.) I teach on Thursdays in the spring, so Philippe would come up on Wednesday and switch with me to the night. I'll watch DVDs on my laptop and read the three Harry Potter books I haven't read yet. And maybe War and Peace. Or maybe I'll get some manuscripts ready for submission. I'll blog. A LOT.

We'll work it out. We always do.

Stay tuned. Maybe it will all be a moot point.

Saturday, August 18, 2007

21 Years Ago Today

Twenty-one years ago today I was in Providence, Rhode Island, visiting some friends before our senior year of college began. We went to a movie (Ferris Bueller's Day Off, I'll never forget) and when we got back to their apartment there was a note on the door:

"Ilene: You're an aunt. Julie Samantha was born at...."



(I don't remember the exact time or her birth weight).

Wow! My first niece, or niecelette as I called her because she was to tiny. By the time I got in the car and drove back to NJ, she was already at home. I remember how scared I was to hold her--she was so tiny, new, and fragile.

And now? Well, now, she's twenty-one and just back from a summer internship at The Onion in San Francisco. She's pledge mom at her sorority and president of the public relations club at her college. It seems like just yesterday she was a mop-headed toddler crawling around at my college graduation.

So, from my mop-headed toddler to the original niecelette, by special request:


Happy Birthday, Julie!

Thursday, August 16, 2007

The 52nd Annual Gold Coast Fashion Show


Here it is folks:



52nd Annual Gold Coast FashionAward Show

Friday, October 5, 2007

11:00 a.m. Cocktails

12:00 noon Luncheon

1:00 p.m. Fashion Presentation

Chicago Hilton and TowersInternational Ballroom
720 South Michigan Avenue
Valet parking is available

If you're in the Chicago area and you can take a long lunch, follow this link to the online invitation to the 52nd Annual Gold Coast Fashion Show, produced by the Children's Service Board of Children's Memorial Hospital. (If you're not in the area, please feel free to make a hotel reservation and join us.)



Wednesday, August 15, 2007

Happy Birthday, Brandi!

Sending a call out to Brandi in honor of her twelfth birthday!

Tuesday, August 14, 2007

Recognizing Talent

I think Charlotte is a musical genius. Okay, maybe I'm engaging in a bit of hyperbole as my college buddy Michael might say (He has a really big vocabulary! I've added a link to the definition for my brother who has an equally large vocabulary, but chooses to make fun of big words!).

But, seriously, Charlotte spends a total of thirty to forty minutes a day playing her piano. She makes up tunes, some of which uncanningly resemble a couple of the French nursery songs we sing. More on piano playing later.


What I really want to talk about is Charlotte's percussion talent. As you can see, she's a natural. I'm thinking that instead of being a child model, she can be a kiddy street drummer!

Monday, August 06, 2007

Cardiac Update

Charlotte saw Dr. Young on Friday for her 6-month cardiac check up. Dr. Young was delighted with her progress. The short version: nothing has changed since the surgery, meaning that all of her blood flow is adequate, her TR velocities are as expected, and (best of all in my book) there is no regurgitation in the new valve.



She has been officially taken off of Lasix and aspirin. Good thing about the aspirin since I forgot to give it to her most of the time.

Dr. Young sent us home with a halter monitor to get a 24-hour read of Charlotte's heart. Here is a picture of the halter monitor (or as Charlotte calls it "little monitor") in it's "disco bag." And here is a picture with the 5 leads. Charlotte had to sleep with this. She only complained when we took the leads off because the glue was painful to remove. And she's still talking about Pauline, the technician who put the little monitor on. We're not really sure if the reading worked because Philippe noticed on Saturday that Charlotte figured out how to push the only button on the monitor, the on/off button! I guess the hospital will call and let me know. Little urchin.She is 13. 4 kilos and 93 cm., both measurements up enormously since the surgery. Prior to surgery she weighed 11-something kilos. She's gained 6 pounds since March and grown +2 cms. She's pretty tall.


Charlotte amazed me at her check up. She did not cry at all. She stuck it out during the EKG, including the tough part of pulling 10 super-sticky tabs off of her chest. She stared at her red glowing toe while we took her pulse ox (measure oxygen in the blood taken through a little monitor affixed to her toe); and she lay perfectly still (seriously) for 45 minutes during her echocardiogram. It was as peaceful and relaxing as a trip to the cardiologist with one's two-year old might be.

Next visit in six months.

Sunday, July 29, 2007

Sunday at our House


Believe it or not, Charlotte slept until 8:20 a.m. Did I use this time to get cracking on my enormous to do list? Did I prep a lecture, write a query about copy editing, or even do some laundry? Er...no. I set the alarm for 6 a.m. It awoke me from a disturbing dream (seriously, if I could do Julia Cameron's morning pages, I'd have some amazing screenplays. I even had the privilege of taking a screenwriting with her in a previous iteration of my life. Geesh.) and I decided to let Charlotte be my alarm.
Oh well.

We had a quiet Sunday. We met our friends Esther, Dave, and Sarah at a street fair to watch Chicago's Trinity Dancers. Charlotte was asked to step away from the stage as she attempted to join the show. Sarah stood at a respectable distance (though she is the one in focus in the picture--can you pick her out, Esther?).

My pals Sheri and Beth came for brunch. Charlotte was, I think, so excited about this that she didn't fall asleep until nearly 1 p.m. and then managed to sleep through most of their visit.

I was hoping to report a great-eating, no vomit day, but, alas, we had a big vomit at dinner. (Charlotte did to her credit, finish an entire baby yogurt for breakfast and a quarter cup of pizza puree for lunch.)

On the vomiting front: I don't blog about this often any more, but it's gotten worse again. We're seeing at least one significant vomit a day as well as many gags and mini-vomits. I've written a log of blog entries about this in my mind, but I loath writing about it. I am at my wits' end and end every meal close to tears. Part of our CHOW strategy is to firmly tell her "no" when she gags. I have to yell at her when she's in pain and unhappy because we can't tell when it is reflux or behavior. So, in other words, I have to scare my baby and make her cry. It's breaking my heart.
And what does she do? When I burp (yeah, I do occasionally burp), she pets my chest, looks concerned, and says "Mommy okay." She thinks it hurts me to burp like it hurts her. She is the sweetest child I have ever known. And while I would do anything to change her medical circumstances, I would not do a thing if it would alter her personality.
Gotta go before the tears soak my keyboard.

Friday, July 27, 2007

Feeding Clinic Update



Charlotte and I trekked to Milwaukee yesterday for our twice-monthly updates. Charlotte was excited about the trip and talked and sang the entire way. Bleary-eyed mom was glad of the company to keep my awake!

We visited with Dr. Long and Amy. This time, they went behind the one-way mirror and watched me feed Charlotte. I had thingy in my ear through which Dr. Long could give me direction. Charlotte was eating with gusto at first. Can you blame her? She'd had breakfast at 7 a.m. and it was 1 p.m. Also, she liked the new flavor--sloppy joe (think pureed Manwich). But, it was naptime and she was tired and eating is stressful. So, reflux turned into a massive, I mean massive, vomit, ending with bubbles of bile.

Dr. Long is whispering in my ear to clean her up, reassure her but not say "poor baby," and keep feeding. Charlotte is in my face crying hysterically. Charlotte never cries, by the way, and she's only hysterical when she's funny. I had not slept in 2 nights. So....I finally said back to Dr. Long, "I can't do this." And she came in to feed Charlotte.

We talked about next steps. Basically, more of the same: limit meals to twenty minutes; offer 2 high-calorie purees; alternate five bites of food and five sips of milk; and, my favorite, try not to let her see my frustration. Hah.

We also talked about the possibility of consulting via webcam in a Telemed pilot they're running. This would have allowed for weekly "home visits" because they understand that she behaves differently up there. Unfortunately, since we're in Chicago we're not eligible (they can't practice over state lines, even electronically because they are only licensed in Wisconsin).

For now, we're going back to monthly visits with nutrition consults in between via email.

Charlotte weighed (I think) 29.3 lbs, up from last time. I don't remember her height.

Wanna know what dinner is really like chez Charlotte? Click here for 10 minutes of fun. This is how we're working with CHOW between visits.

Wednesday, July 25, 2007

ABCs

If a picture is worth 1,000 words, how much is a video worth?



Sometimes she even sings the alphabet correctly. Often, she sings IPO IPO. Perhaps she's projecting something about her future?!

Tuesday, July 17, 2007

Sound Would Be Superfluous

A quick view of Charlotte enjoying Virginia Beach. I took this with our Nikon digital camera, thus no sound. I don't think you'll need sound to get the gist.

Thursday, July 12, 2007

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.

Monday, July 09, 2007

Where's Charlotte?





We've been on vacation in sunny, beautiful, laid-back Virginia Beach. We've had the great fortune to be able to catch up with old friends*, visit with family, and celebrate my mother's upcoming birthday.


Charlotte loves VA Beach. Good thing, too, since Philippe and I cannot ever get enough of this place.
She's eating like crazy--1/4 to 1/2 cup of pureed food per meal and often drinking everything she should.
To cut back on vomiting, we've cut the Duocal out of her Pediasure and have reduced the volume by 40 mls. per meal (with the blessing of our dietitian extraordinaire from CHOW).
She continues to vomit, sometimes small volumes, sometimes fairly significantly. We still think we may be giving her too many calories. Did you ever think you'd read that?
Stay tuned for our CHOW visit on Thursday.


*By "old" I am referring to the length of our acquaintance, not the age of our pals

Friday, June 29, 2007

Remembering My Father

Today would have been my father's 75th birthday. It is impossible to believe, even seven years after his death, that he is not with us to celebrate and be celebrated. Throughout all of Charlotte's ordeals and her triumphs, I have been saddened by the fact that she will never know my father and that he never had the chance to know her. Philippe and I like to think that he and Philippe's dad are somewhere watching over their granddaughter.

My father accomplished so much in his life--he was the first in his family to graduate from college, he started his own successful business which my brother continues to run, and he pursued a wide range of philanthropic and volunteer activities within the Jewish community. He once told me that of all his volunteer roles, he was most proud of what he accomplished while serving on the board and as president of the MetroWest Jewish News.

In his typically non-bragging manner, he never told me the details or extent of his work at NJJN. As I spend the day thinking about and trying to honor my father, I'd like to share with you the lovely obituaries that his colleagues at the NJ Jewish News published after his death.

10 July 13, 2000 NJJN – MetroWest July 13, 2000

Paul Goldman, advocate for pluralism and ‘NJJN,’ dies
by Rachel Nierenberg NJJN Staff Writer
Paul A. Goldman, a past president of New Jersey Jewish News and a strong supporter as the paper expanded, died on Friday, July 7. He was 68.

He was born in Roxbury, Mass., and lived in Brookline, Mass., Richmond, Va., and Livingston before he moved to West Orange, in May. Goldman was a contributor to the United Jewish Federation of MetroWest and a member of the William and Betty Lester Society, comprised of those individuals or families who make an endowment of $100,000 or more to the UJF. Because he was born into a family that did not have a great deal of money, Goldman recognized the importance of giving to others and shared his own success by contributing generously to philanthropic organizations.

Murray Laulicht, a past president of UJF MetroWest, credits Goldman with “being the first to present [the issue] of religious pluralism to our community.” In the late ’80s, explained Laulicht, Goldman introduced a resolution to the board of MetroWest federation,“bemoaning the lack of religious choice in Israel.”

As a result, Laulicht said, federation chose to grapple with the issue, eventually passing the resolution, realizing the importance of “solving these problems in our community and around the
world.” It was Goldman’s initiative, said Laulicht, that later enabled MetroWest to take on a role as a “national leader in promoting religious pluralism.”

Goldman served as president of New Jersey Jewish News for three years, from 1995 to 1998.

Recalling the “many mornings” that he spent with Goldman during his tenure as president, David Twersky, editor-in-chief of NJJN, said that Goldman “stood forcefully for the independence” of the paper. Twersky described him as “the strongest advocate for having a New Jersey Jewish News.” Indeed, it was during Goldman’s presidency that the MetroWest Jewish News — a single-edition newspaper for the MetroWest Jewish community — expanded and became the New Jersey Jewish News.

Two editions were added through arrangements with the Jewish Federation of Central New Jersey and the United Jewish Federation of Princeton Mercer Bucks; an increased readership came along
with them.

After Goldman stepped down from the presidency, Twersky said, he “never lost an opportunity...to push his agenda of a statewide Jewish newspaper.”

Amir Cohen, associate publisher of NJJN, said that Goldman’s leadership style was creative and unique; in fact, he “cannot imagine how a better job could have been done.”

Cohen recalled that in 1994, when he joined the staff, Goldman reached out to him at the first board meeting; he was the first board member to do so. That reaching out, he said, was quintessentially Paul Goldman.

“I think the word ‘mensch’ describes him,” said Michael Miller of Morristown, immediate past president of NJJN. Miller said that Goldman was “truly a leader — inspirational and a can-do person. He was charitable, cared about people and cared very much for the Jewish News and the Jewish people.”

David Mulgrum of Bed-minster, board member of NJJN, said that Goldman was a “gentleman to deal with and he will be missed.”

Goldman, a graduate of Brown University in Providence, R.I., was the founder of Paul Arnold Associates, an insurance agency in Livingston. Before establishing the firm, he worked for Markel Service, an insurance agency in Richmond, Va.


He was a member of Congregation B’nai Jeshurun, Short Hills, and a past president of the synagogue’s brotherhood. He also served as vice president and was a member of its board of trustees.


“He loved the temple and he loved music,” said Leslie Sporn of Short Hills, executive director and a past president of B’nai Jeshurun. “He loved to sing.” Goldman’s decision to donate a harp to the synagogue was indicative of the kind of person he was, said Sporn. “He did it to enrich our services.... It was meaningful to him and he knew it would give others pleasure.”

Goldman is survived by his wife, Pam of West Orange; two daughters, Laurie Cohn of Livingston and Ilene of Chicago; a son, Hal of Warren; a sister, Roberta Cohen of Wayland, Mass; and four grandchildren. The harp he had donated to the synagogue was played at Goldman’s funeral service, which was held at B’nai Jeshurun on July 9.

Editorial
Paul

Paul Goldman took over as president of MetroWest Jewish News on July 1, 1995. From the start he exhibited a calm and steady hand at the helm of the executive committee and board, leading the way to a rethinking of the paper’s relationship with the United Jewish Federation of MetroWest. It was Paul’s contention that the paper should be as open as possible to trends, thinking and controversies, and that in reporting as accurately as possible, the newspaper would be making its singular contribution to the Jewish community.


This was not as simple a project as it might now appear. There were certainly those who felt the newspaper should be more closely tied to the federation and those who thought its mission should be subsumed by the federated campaign, some arguing that the paper must therefore avoid divisive stories and opinions that might alienate potential donors.

But not Paul. He established strong working relationships with top staff and made clear his commitment to the professional nature of the newspaper. At the same time, he became closely identified with the effort to reshape Jewish newspapering in the state of New Jersey. During his tenure, and in no small measure due to his leadership, the MetroWest Jewish News evolved into the New Jersey Jewish News, reaching an agreement with the Jewish Federation of Central New Jersey to publish a weekly edition in that community and later with the United Jewish Federation of Princeton Mercer Bucks to publish an edition there.


The goal of branching out throughout the state in order to project a firm, powerful voice on behalf of Jewish interests became almost a personal mission. He was passionate about his beliefs and his commitments, including religious pluralism and liberties; took leadership roles in his beloved Congregation B’nai Jeshurun; was hardworking and responsible to a fault; loved his family above all; and was always a gentleman. May his memory be for a blessing — and may we stay committed
to his goals for the Jewish community and people.

Many, many thanks to Mollie at NJJN for dropping everything today to get this text to me electronically.

Both of the above texts are copyrighted by NJ Jewish News.

Thursday, June 28, 2007

780 Days

June 18, 2007

I have been a mother for 780 days, almost to the minute.

In those days, I've laughed with my child, cried for her, held her, changed countless diapers, cleaned up more vomit than I care to remember, and read many bedtime stories. I've been exuberant and exhausted, overwhelmed and overjoyed. But, I've never been bored.

I've watched my daughter recover from 2 open heart surgeries, a g-tube insertion and 2 cardiac catheters (that's 5 rounds of anesthesia, 3 breathing tubes, 2 central lines, countless blood draws, x-rays, and echocardiograms). I've taken her to a feeding clinic, an ENT, an opthomologist, a dentist, a pediatrician, a cv surgeon, a cardiologist, a plastic surgeon (for the helmet), an orthotist (for the helmet), a gastro-enterologist, and a cardiac interventionist.

She's been visited weekly by a physical therapist and a speech therapist. She's been evaluated several times by an occupational therapist and a developmental therapist.

We've been to Gymboree, Torah for Tots, Music Class (en francais), and Art Class. We've been to Belgium, New York City, Wisconsin, New Jersey and Virginia Beach.

Charlotte has taught me so many lessons.

She has taught me to slow down and take notice of the world around me.

She has given me a whole new definition of bravery.

She reminds me daily that laughter can cure almost everything. That it's funny to fall down. That sometimes it's important to say something over and over again. That it's okay to babble just to hear what the words sound like.

I could go on and on.

But today, the 2nd anniversary of Charlotte's homecoming after heart surgery and 49 days in the PICU, I just want to say that most of all, Charlotte has taught me the true meaning of gratitude, faith, and strength. She truly makes our house a home.

In Charlotte's honor, I invite you to follow this link to a search result on the Congenital Heart Information Network website and read about many other families who have been touched by a child born with truncus arteriosus.


Wednesday, June 27, 2007

Not Quite a Feeding Clinic Update

Hey, Mom, put down the camera and lemme at that pizza and those bananas. At Wolfgang Puck's in the AA terminal at O'Hare. Charlotte ate nearly all of a container of Gerber Organic Bananas and had (and chewed) about 5 bites of my pizza.


We had a flat tire in Racine and had to wait 45 minutes to help. The receptionist told us that the team wouldn’t be able to squeeze us in late (understandably) so, once repaired, we turned around and went home.

I’m trying to reschedule, if nothing works out for this week, our next appointment on 7/12 (the whole family, including birthday boy Daddy).

In the meantime, since you're all dying to know how she is eating: Charlotte is eating like crazy. She’s averaging 2 to 4 tablespoons of puree a meal and getting to 180-200 mls. of Pediasure fairly consistently throughout the day. Midge, the dietician/nutritionist at CHOW tells me that this is 1,200 or more calories a day (her recommended diet is aorund 900 calories a day) and that, based on her most recent food journal, she's taking 90% of those calories orally.


Charlotte and Nemo, the flying fish, get a tour of the cockpit from Christine, our fab flight attendant, after landing in Newark 2 weekends ago.



She’s starting to really open her mouth. I bought some The First Years Take & Toss spoons when we were out of town and they seem to do the trick.

But…she’s vomiting almost daily again. Frequently it’s fairly large (4-6 ounces). Yesterday morning with Laura she ate 2 tbls. of egg puree, 2 tbls. of applesauce, and 200 mls. of Pediasure. about 5 minutes after she finished, she vomited all of it back up. Maybe even more than all of it.


We're working (via email) with Midge and Trina (our RN at CHOW) to make sure that Charlotte's meds are the correct dosage for her weight and then to reduce her caloric intake in case she's vomiting because she's getting too much. Yep, you read that correctly! After 2 years of worrying that Charlotte was not getting enough nutrition, we're finally concerned that she might be getting too much. Hurray!

Tuesday, June 12, 2007

Fattening, er, Feeding Charlotte

Now that it's summertime, you may have noticed that Charlotte has a double chin, some little tiny fat rings on her neck and on her thighs. I forgot to mention in the feeding update that she weighed in at 28.6 lbs--a near 2 lb. weight gain in 3 weeks. She also grew 2 cms.

If you've eaten at our home, I hope you're thinking that it is my home-cooking that is doing the trick. You know, the healthy, as-natural-as-I can-make-it, varied food that I love to cook. Of course I'm not feeding my daughter high fructose corn syrup, processed sugar and flour, boxed foods or chemicals. I'm not the totally organic type (cannot fathom the $6+/gallon for milk), but I strive for hormone-free meats, local veggies, etc.

Yeah right.

Her favorite food right now is pizza (puree). I make it for her from scratch. Here are the ingredients (I am seriously cringing as I post this).:


And here's a picture of the finished product. In case you're wondering, it smells and tastes quite good.

You don't want to know what's in Charlotte's peanut butter and jelly puree!

How do I feel about this? Check out my LiveJournal essay from August 2006. I feel the same way today.

Wednesday, June 06, 2007

Feeding Clinic Visit

Charlotte and I made the trek to CHOW for a 9:45 a.m. appointment. I won't bore you with the driving details. Suffice it say, I left the house at 7:10 a.m. and pulled into CHOW's parking lot at 9:35 a.m. It's a 90 mile trip. The first hour was spent driving the 15 miles between my home and Wilmette IL. Charlotte asked me to let her out of the car, which she never does. We stopped at an oasis and "did laps" around the car!

The clinic visit went well. We met with Dr. Beth Long (the behavioral psychologist) and Amy Delaney. They had me observe while they fed her. Feeding is not Charlotte's favorite thing, so it was especially difficult for me to not be allowed to comfort her when she got upset. Amy and Dr. Beth fed Charlotte hospital food (oh joy!)--special purees of pizza and green beans, ice cream and potato chips.


We've all agreed that Charlotte has some oral-motor ability problems. She has problems fully opening her mouth on command to place food on her back molars. She also has problems elevating her tongue to touch her upper lip (to lick food off the lip) and moving her tongue from side to side (to move food onto her molars).

This explains, of course, why she sometimes "hoards" food without chewing--she is not able to move the food onto her molars. Sometimes a small swig of milk lets the food move; sometimes it causes her to spit it all out.

The CHOW team is going to work with Laura, our local feeding therapist extraordinaire, on strategies to improve Charlotte's oral-motor skills. We even have "chew toys" to give her more oral input. I'm having a hard time figuring out when to use them and how exactly, but when the folks at CHOW use them, we see marked improvement

The ride home was pretty quick, save for getting rearended by a Penske rental truck at a highway exit. If you've known me a while, you probably know that I'm a magnet for people who like to rearend other cars. As a result, I have a herniated cervical disk or two. Fortunately, I have a great chiropractor and wonderful yoga instructors, so this accident wasn't too bad.

We treated ourselves with a trip to the Chicago Botanic Garden with Miff and Susan on the way home. Charlotte gave the three of us a guided tour of the kitchen gardens.



Next trip to CHOW: Thursday, June 21.

Tuesday, June 05, 2007

Charlotte Digs Dirt

Literally.





And she thinks it's really, really fun. She calls it "Helping Mommy" and is happily occupied while I garden.



She also loves her water table or "bathtub," as she calls it. This is a little technique she calls, "Scoop it up. In the hair." We would like to thank our Feeding Clinic team for that--it's a variation of "Scoop it up. In the mouth" used to encourage her to open her mouth wide.

Other Charlotte-isms:

  • Our little miss refuses to say "Charlotte." She prefers to call herself "you" or "yo," if she's feeling really silly. She can say "Charlotte." She chooses not to and likes to tease us.
  • She likes me to sing to her. If you've heard me sing, you know that her taste is a bit off. She especially likes if I make up silly lyrics to songs she already knows.
  • Other favorite things to do (I asked her) are: atch Elmo DVD (Not a typo, that's what she said. Not that she gets to do it very often.) ; playground; play Elmo-Cookie (Translation: play with her Elmo-Cookie magnadoodle. Thanks Blackketter clan!) ; paint; unning (Again, not a typo).
  • Finally, she's a huge fan of the author/illustrator Jon Muth. The kid has kind of advanced taste! We read Stone Soup or Zen Shorts nearly every night. (Again, thanks to the Blackketter family!) She also really digs Mo Willems (okay, who doesn't?), but she's still a bit afraid of Leonardo the Monster. Go figure. Like every literate 2-year-old, she LOVES to tell the Pigeon that he can't drive the bus. Don't know what I'm talking about? Get thee to a bookstore or library immediately. Do not pass go. Do not collect $200. Go. Now. (Our friends give her the best books. Thanks to the Skopickis and Caros for Mo.)
  • She likes chocolate milk and strawberry milk. Proving without a doubt that she's our kid.
  • She's in the parrot phase of language acquisition. Now I really have to curb my truck-driver language. (no aspersions to truck drivers intended)

There's so much more that delights us each day, but I don't want to bore you with the details. Suffice it to say, she's kind of a regular kid these days. Hallelujah!

Stay tuned tomorrow for a Feeding Clinic update. (She drank 780 today!)

Sunday, June 03, 2007

Les premiers mots en francais

Charlotte spoke her first French words today! At naptime, she asked to "fait dodo," to go to sleep. Clear as a bell.

Friday, June 01, 2007

Batting 800

Everyday we ask Charlotte to drink 900 mls. of Pediasure. Since her surgery, her typical intake has been between 650 and 750. The rest goes in by tube.

The exciting part, until today, has been that we only use the pump about twice a week. We've been able to do bolus syringe feeds. And her vomiting is way down--she'll go 3 to 5 days at a stretch without a vomit. Solid food is a bit more iffy--sometimes she'll eat 2 tablespoons at a time, sometimes nothing. Sometimes she chews, sometimes she hoards.

And then there is today, June 1, 2007. Remember it well. Charlotte drank 800 mls. total today. She finished 2 entire meals! And, she ate 3 tablespoons of pureed pineapple for breakfast.

A banner day!

Wednesday, May 30, 2007

A Photo Gallery

It feels like we've been in constant motion for the past 10+ days. Or, maybe it's just that Charlotte is in constant motion. Even in her crib right now.

I finished grading papers, submitted final grades and then jumped right into a freelance writing job (my first! yippee!). After that I finished editing a book chapter for my first academic publication in 8 years. Turned that in yesterday at 6:45 a.m.

There were many, many bloggable moments that I swore I'd remember, but have of course forgotten.

I hope the pictures will help you all to forgive my irresponsible blogging!
Charlotte always takes time to smell the flowers.


We're making "appa-fuj" cake. Hey, Chuck and Julia, it did rebake just fine. And Charlotte spent about 30 minutes saying "Bye bye Chuck and Julia" after you left!


Proofreader in training. May 29, 6:30 a.m. Yes, the morning I need her to sleep until her usual 7 a.m., she wakes up as I leave my room at 6:05 with a resoundingly enthusiastic "Hi Mommy!"


Playdough! Playdough! (Mommy's first attempt at the homemade stuff!)



Sometimes she even sits still!

"Play bathtub in the back yard. Splish Splash."


Okay. Caption contest time. Philippe LOVES this picture!