Feeding Clinic Update

We had our repeat visit at CHOW today. We went in with a steadfast goal of weaning Charlotte off of the tube by her 2nd birthday. Dr. Arvedson (feeding specialist), Dr. Long (behavioral psychologist), and Midge Kirby (dietician) re-set our expectations, once again, to what is realistic.

Here’s what we know:
--When Charlotte is hungry, really hungry, she eats whatever is in front of her. She does not seem to have a strong dislike for any particular food. But, she doesn’t finish a meal. She will stop eating after some amount—typically 1-2 ounces. This happens about twice a week. On occasion, she’ll thrill us with a 4 ounce feed.She can drink 4 to 5 ounces of water in 30 minutes when she chooses.
--She likes all kinds of solid foods--crunchy, soft, sticky, and chewy.

--She’s interested in whatever I’m eating and will taste or smell just about everything.
--Basically, she likes food. She also plays with her food, like any other 12 month old.
--She nearly always vomits after her naptime feed.

Here's Charlotte with her "sword & shield" protecting herself from bad, bad food

Here’s what we learned:
--Our team of experts is thrilled that Charlotte will eat with gusto, even if she falls way short of taking all of her calories. She has a very strong hunger drive. Apparently, a lot of kids with reflux don’t have that.
--We are letting her get away with driving when meals end, to some extent.
--We can look forward to weaning her when she is at or above 90% of ideal body mass (weight to height ratio).

Here's the plan:

--We’re going to work on “boring” her for the next week. She’ll get exactly the same meal each time we sit down to eat. For a week we’ll offer Pediasure to drink. After that, we’ll try a yogurt drink for a week, and then maybe fortified milk. The idea is to determine if she willingly drinks one thing more than another.
--We’re reducing her nap feed to avoid vomit. Hopefully that will make her hungrier at dinner, too.
--And, we’re going to be in charge of when a meal ends. Our job is to make sure that her last sip, last bite our on our terms, without triggering too much stress for baby.

If we get lucky, she'll increase her intake on her own. We won't be "officially" weaning just yet, but it would be ideal if she did a bit of weaning on her own.

Respond Instead of React

Sometime yesterday morning I realized that my inner yogini had realigned since the burglary. I'm still quite creeped out that someone broke into my home while I was sleeping. The danger we might have been in had one of us woken up is bone-chilling. But, I'm not angry at life. The truth is, we allowed this to happen by not turning on our burglar alarm (that won't happen again) and by not realizing that a window was unlocked. My life, the good and the bad, is the result of choices I've made. At least 80%, I would say. Maybe 20% is chance and other people's choices. But, for the most part, my choices.

How did I get my inner yogini realigned? Very simple. Charlotte. For her Tuesday was a regular day. There was playing to do, eating to avoid, naps to have, and lots of kisses and cuddles. She truly is the antidote.

Also, in yoga class tonight, my teacher talked about being flexible in our bodies and our minds so that when things don't go how we'd like, we can respond rather than react. Believe it or not, that's what I did. When I realized Philippe's wallet and keys were gone I immediately got on the phone with the bank, credit cards, and locksmith. Without thinking about it, I responded. Maybe it's the yoga. Who knows? All I know is that as ticked and scared as I was (and am) I knew two things 1) Charlotte had to have a regular stress-free day and 2) there was stuff that had to get done.

All this to say, if my rant put you off on Tuesday, I'm over it. Hope you are, too.

Yesterday she enjoyed a playdate with Maddie and Ruth and their mom Mary. Then she went to the park with Dillon, Nathan and their mom Laura.

Today we had physical therapy and the nurse from Early Intervention came by to do a "once in a while" check. She's also a nutritionist. We had a long talk about Charlotte's food strike. We all recognized that Charlotte can eat. She has no anatomical or physiological impediments. When she's really hungry, she'll eat. So, we're going back to Wisconsin for our follow up on 5/31 and our goal will be 100% oral feeding by 24 months. I've got to get our life into a normal mode.

If you don't like complaints, don't read this

Charlotte's week has been pretty unremarkable. She continues to be on strike from her bottle. I think she's taken it in her mouth once or twice in the past 7 days, maybe totaling 60 mls. intake over the week. Yet, on Saturday she munched a huge piece of biscuit and drank 2.5 ounces of a banana yogurt drink. Today she ate a teaspoon or two of cottage cheese. Sunday night she ate a few bites of corn and squash. Some days she'll nibble forever on a biscuit or fig newton. Other days she'll only eat salty, crunchy meltable foods. Last night she screamed just watching me lift the spoon from a bowl. It's infuriating, actually, because her refusal to eat doesn't always correlate to visible reflux or discomfort (read: vomiting). I'm frustrated beyond belief and wish someone would tell us why this is happening and when it will get better.

The real update today: We were burglarized last night. Someone broke into our basement while we slept and took some small electronics, Philippe's work laptop (thank G-d they didn't get my laptop), his wallet, cell phone and keys. Fortunately (or not), we heard nothing and he didn't come upstairs. In the basement windows, through the house, out the basement door and through the back gate (using Philippe's keys to open the gate). He did leave a very good set of fingerprints on the one piece of stereo equipment that he decided to leave behind.

I won't tell you in what order I checked on the cats and the baby. Use your imagination--I knew the guy probably hadn't been on the second floor and the baby can't get out herself. The cats could have. But they didn't and our kitties and baby are safe and sound. Our credit cards are cancelled, Philippe has a new drivers license, and the house has new locks and keys. It is, however, creepy to think that he was here as we slept and while I'm exhausted, I can't bear the thought of closing my eyes. Never thought I'd be grateful for my insomnia.


We are fine. Really. We're quite shook up, angry, annoyed--at the burglar and at ourselves for the many different things we should be in the habit of doing that could have prevented this. He didn't get any terribly valuable personal items and we were able to cancel all but one credit card before he used it. Philippe has to try to re-create several months worth of work. And, as grateful as I am that we are fine and that he took so little, I am so angry that we have to go through one more thing. Enough is enough already. I don't get why some people cruise through life and seem to get all the good breaks (not that I begrudge anyone that) and others get hit again and again. When will it stop? And yet, I feel terrible saying this knowing what terrible crises two of my friends are going through right now. Their woes certainly put ours in perspective. But, crikey, seriously, enough is enough already. I'm beyond fed up.

I'll try to get some pictures up soon.

And for you locals, don't forget The Jungle Book on June 3. Get your tickets soon!

Rudyard Kipling’s The Jungle Book
Saturday June 3 rd 1pm

Apollo Theatre

2540 Lincoln Ave Chicago

Please call Terry Spence for information (773) 880-6871

What a Difference a Year Makes

May 16, 2005

My post on May 16 last year (my email, actually) began like this:

First things first, Charlotte came through her surgery beautifully. The surgeon
told us that they encountered no surprises or complications and he was very
pleased with the surgery.

It is hard to believe that it has been a year since the longest day in our parenting lives. We spent last May and June in such a fog that we had no idea Illinois was experiencing a drought (seriously). This spring will be spent replanting the front yard that we lost to weather and bugs. I had intended to put together a photo-montage of the past year, but as anyone with little kids understands, I just haven't had time. That's a good thing.

Last May 16 we sat vigil in the surgical waiting room and then next to Charlotte in her pod. Today, Philippe is in Boston on business. Charlotte and I ran some errands and spent some time in the park with her buddies Will and Madison and Finn (and their moms, of course).

Honestly, last May I could not have imagined having my frog-baby in a swing. Okay, she's got a g-tube and she vomited up her dinner. And I'm listening to the pump feed her last 5 ounces of the day while she sleeps. But, hey, we went to the grocery store in the rain, cruised Roscoe Street seeking raffle prizes for the Children's Service Board Gold Coast Fashion Show, and met Silke and Finn at the park (Where we ran into Meg with Maddie and Will). Charlotte giggled a lot today and snuggled her head into my neck when I read her a goodnight story. We had a great conversation, though I'm not sure what we talked about (da da da pa pa pa pfffffffft to you, too).

We may have a long way to go to resolve our feeding issues (or maybe they will magically disappear), but Charlotte, you've come a long way, baby!

May 16, 2006

525,600 Minutes

How do you measure a year?
with thanks to the lyricist of Rent

525,600 minutes
525,600 moments so dear (even if forgotten due to sleep deprivation)
In daylight doctors rounds
In sunsets spent strolling
In midnight feedings
In cups of coffee



In inches: 5 lbs. 2 oz to 18 lbs. 14 oz.
In ounces: 43 cm to 76.2 cm
In laughter
In strife
How do you measure a year in the life of Charlotte?

How Do You Measure The Life of A Mom or a Dad?

In truths that we learned
Or in times that she cried
In burps that she warned
In hearts that she warmed

We do measure in love--the amazing love of a parent for a child. The overwhelming love that her community of friends and family and medical carers have shown for her.
And, above all, we measure in gratitude.

Lot's of things are frustrating still. For instance, it was kind of depressing that she ate nothing on her birthday and could not have been less interested in the cupcake. But, as Charlotte's pediatrician Dr. Salem said, the progress Charlotte and we made from 5/9/2005 to 5/9/2006 is immeasurable, inspiring and just the beginning.

You see, I started this blog as the tale of Charlotte's journey to being a regular kid. Well, guess what? She is a regular kid. She's just a regular kid with a tube in her belly. But that tube helps her be regular, helps her grow, helps her be on the growth chart (finally), and helps her get the nutrition she needs to develop normally. She's pulling up, starting to cruise, babbling silly sounds. She likes to drink water from an open cup and eat salty, crunchy food (no doubt that she's my kid!).She has this impish little grin that tells you she's up to no good.

So, I'll continue the blog as her life's journey. We'll have medical updates along the way, but mostly it's all about being Charlotte, glorious, happy, precocious, silly, gorgeous Charlotte.

She'll be walking, talking and defying before we know it. Run for the hills!!

We're Back!

Well, actually, we've been back home since Saturday. Luckily, I was able to change my (changed) ticket at the last minute and fly home on Saturday. Philippe and Charlotte were on our original flight. I was on a non-stop. It worked out well--I got in a few hours earlier, unpacked and then went back to the airport to pick up my honeys. Philippe said that once again Charlotte was a great, easy travel companion.

So, enough about the traveling part. The visit itself is what everyone wants to know about. Well, by the time I arrived on Tuesday, Charlotte and Nenenne (Philippe's mother's "grandmother" name) were fast friends. Nenenne had borrowed toys, a high chair, and a playpen so that Charlotte had things to do and a place to sit. The most fun was a little plastic car that Charlotte really enjoyed.


We made the rounds to visit Philippe's aunts and uncles. I remembered to get a picture of us with Tonton Ghislain (Philippe's mother's brother and Philippe's godfather) and Tante Joseanne.Everyone is a bit out of it in this picture because we'd just had a fabulous meal and food coma is about to set in. I'm sad to say that I completely forgot to take pictures with Tante Andre and Tonton Ric (Philippe's dad's sister and her husband) or with Tante Marie Jeanne (Philippe's dad's eldest sister). Charlotte greeted each of her great-aunts and great-uncles with big smiles. She loved being with her family. I she was occasionally crank, I'd chalk it up to jet lag and not getting great naps.

We also got to have some brief visits with Philippe's good friends--Philippe saw the Houdart family and I got to go with him and Charlotte to visit the Van Laers. Again, I managed not to take pictures. Duh. I did get this one of Charlotte sitting in Sara and Eric's backyard.
Sara's children were adorable with Charlotte, especially Femke.

I could go on and on with stories about our trip, but I don't want to bore anyone. Charlotte had a great time. She charmed her family and they charmed her. We had such amazing visits with everyone. And I was so glad that Charlotte finally got to meet her grandmother and aunts and uncles.

She also met Maria, Philippe's babysitter and a woman who has safe spot in his heart. I was very touched to find that Maria's daughter Nadine checks the blog regularly and prints out the photos for Maria. Nadine's whole family got in the car and buzzed over to meet Charlotte. And Maria had pictures of Charlotte all around her home. So touching. And Charlotte liked it too--she just snuggled into Maria's lap and hung out for a while.


It was a really quick trip, especially for me. We're all so tired. But, Charlotte has been a serious trooper. She slept through the night on our first night home. Last night was a bit rougher. She's already back on her nap schedule, so I'm hoping that the jet lag is nearly over.

I Made It

I've been in Belgium since yesterday (Tuesday) morning. The passport ordeal, while a long day, wasn't too bad. The duty officer at the State Department told me to go to the Passport Office at 10 a.m. on Monday. So, I got there at 8:40 a.m. Good thing, too. By 8:55, I had seen an officer, handed in my documentation and received a receipt to pick up my passport at 1:30 p.m. When I explained that I had to be at the airport by 3, she was very nice and told me to check early and often.

I checked back at noon and the "1:30 batch" had not been delivered. They told me to check back in 30 minutes. I did and at 12:33 pm, passport in hand, I was on the train to O'Hare. Phew.

Charlotte is totally off her scheduling--not napping for more than an hour at a time. But, she's adorable, not fussy and friendly to everyone. I think next week, getting her back on schedule at home will be harder than this week. On the other hand, we're having to stay up until midnight to give her meds and pull the pump out of the Pack and Play (it seems to small a crib to leave the thing in with her.)

More about our trip and visits with friends and family later. Next week, probably. I'm a bit too tired to make sense right now.

Sorry no pictures--the system doesn't want to let me upload right now.