Wednesday, February 28, 2007

Feklempt

Yes, Charlotte is helping Daddy put food in her extension tube. She also likes to help put her medicine in. She says "Push" while she does it!


I realized last night that the privilege of being Charlotte’s mom extends far beyond the day to day wonder that she shares with me.

Charlotte’s medical ordeal led me to join the Children’s Service Board of Children’s Memorial Hospital. Giving back to the hospital was obvious to us from the beginning. My parents provided strong examples of philanthropy and community volunteering. Joining the CSB was a way to do more than just write a check; it allowed me to participate in producing The Gold Coast Fashion Show that raises hundreds of thousands of dollars for the hospital. We raise additional funds through our major gifts and annual giving programs as well as smaller events.

Last night, I attended the annual meeting and dinner of the CSB. We had a stellar year, bringing in the CSB’s first ever 7-digit single gift (yeah Holly!) and setting records with our Circle of Care membership. As our president, Cynthia Chase, presented to Tom Sullivan, President, Children’s Memorial Foundation, a check for $1,966,000 (rounded) my breath stuck in my throat. Never in my dreams did I imagine that I would be part of that kind of fundraising success. And I certainly didn’t imagine that knowing I’d been part of it would be so emotional.

The CSB comprises an extraordinary group of women. Their passion for the hospital is matched by their compassion for their fellow members. Cynthia also told everyone about Charlotte’s upcoming surgery (rescheduled, by the way, for 3/20). Many women asked what they could do for us and made me promise to call them if we needed anything at all. Again, my breath stuck in my throat. Without Charlotte, I would never have known these women or their generosity of spirit.

Despite all Charlotte suffers and all that we suffer with her, being her parent is a daily privilege. While I would not ever have wished, of course, for her heart defect, I was reminded last night of how much more the word “heart” means.

As the CSB web site notes,
We make a living by what we get. We make a life by what we give.


--Sir Winston Churchill

That’s a value I hope to pass on to Charlotte just as my parents passed it on to me.

And I can’t resist a pitch: click here to donate online to the CSB. Our mission this year is The Bridges program, CMH’s unique pediatric palliative care initiative. While we don’t like to think of families needing this kind of support, we recognize that need. CMH seeks to support physical, psychological, social and spiritual needs of the whole child and family as they cope with decisions and feelings accompanying major health changes and challenging medical conditions. In addition to Bridges, the funds we raise will go toward our new facility.



SAVE THE DATE:
52nd Annual Gold Coast Fashion Show
Friday October 5, 2007

Sunday, February 25, 2007

Cardiology Update


Cardiology update: Charlotte saw her cardiologist, Dr. Young, on Friday for a pre-operation check-up. Luckily, we did not have to do an EKG or echiocardiogram. Charlotte was happy enough when coloring, but when the RNs wanted to weigh her (25.5 lbs) or measure her (2'10") she screamed and screamed.


Dr. Young had us put an echocardiogram holster on Charlotte for 24 hours. This is probably the only medical thing I've neglected to photograph. In any case, Charlotte had 5 wires stuck to her chest and plugged in to a tiny, lightweight machine that she wore in a little bag, kind of like an evening bag, from her shoulder. After it was put on, she really didn't know it was there, even during her nap and overnight. She did scream like crazy when I pulled the leads off yesterday.


We won't know the results for about 10 days. The basic idea is that the reading will let Dr. Young and the surgeons know if there are any heart rhythm issues that need addressing during her surgery. This lets the surgeons know what, if any, wires to leave in for the post-op period. I'm betting on there being no arrythmia, but what do I know?


Surgery update: Charlotte's surgery has been moved to 3/20 to accomodate Dr. Mavroudis's schedule. Pre-op testing is 3/19.

Monday, February 19, 2007

So Many Words


For the Charlotte's Feeding Team, I've spent several hours (so far) this week working on questionnaires about her development. I had to circle all the words she knows. Here's what I came up with:

apple
bath
banana
come
cake
down
cheese
eat
cookie
help
cracker
kiss
egg
peekaboo (boo)
hot
tea
sleep
water
up
ball
brush
balloon
home
book
clean
crayon
happy
bear
nice
moon
hat
star
sweater
bunny
byebye
chicken
excuse me
duck
hi, hello
fish
meow
puppy
nose
arm
out
belly button
thank you
chin
yes
ear
baby
eye
daddy
hand
mommy
knee
Elmo
nose
Dora
teeth
applesauce
noodle
o's (sphagettio's)
brush
hole
hippo
Okay, not all of the words sound like the ones that are logged here. But, Philippe and I (and Jenna, Karley, Eve and Laura) know what she means! (I'm sure I'm missing some words, so if you've heard her say something else, please add a comment!)
And…she has started saying “thank you” spontaneously, at the appropriate moments.

Saturday, February 17, 2007

25 pounds!


Charlotte reached 25.1 pounds as of her weigh in for her Synagis shot last week. She is officially almost 5x her birthweight. And, yes, her pants still fall down because she is skinny. She's also grown about 1.5 inches since early November (seriously, I'm not making this up). I guess that explains why she's skinny--all that "extra" weight has to fill out a lot more height.

She's currently obsessed with:
--Mr. Potatohead (Tato) and makes sure to kiss him good night every night
--Lacing beads (beads pease), though she likes to unlace them after having me lace them




--Pat the Bunny. Yeah, I know she's a bit past the age kids usually like this one. But she wasn't interested until last month. And she now has 2 three word phrases courtesy of this classic, "Pat the bunny" (duh, you saw that coming, right) and "sshhh, bunny (or mommy or daddy or Elmo) is sleeping"
--Elmo!!!!!! Another 3 word phrase "I atch Elmo." It can mean "I watched Elmo" or "I want to watch Elmo." If the latter it is insistent, urgent and repetitive
--The salad spinner. (Thanks to the Van Laer family for a wedding gift that even entertains the kinder!)
--Kisses and hugs
--Zoe and Her Zebra by Clare Beaton
--Her Princess Crown (see above). If I'd let her, she'd wear it to bed!
--Bembo (Gymbo the clown from Gymboree). What she really likes is getting her hand stamped at the end of class and having Gymbo come home with her
News from the reflux front coming soon.
(Princess Charlotte's wardrobe is provided by Her Fairy Godmother.)