Eat Kid! Eat!

Desperate for Froggy to gain weight, I actually purchased "Easy Cheese" today. Remember that stuff from tween slumber party fun? It's squirtable processed cheese food. We called it Sleazy Cheese. Yes desperate times called for desperate measures.

This morning for breakfast Froggy had Milk with supplement, cheerios, bran, raisins and two scoops of Nutella. She then went the entire day without an appetite. She will usually eat a good breakfast of french toast, fruit, bacon and milk. But for the last week, she's been uber picky. Yesterday she had one milk and a bite of turkey.

I'm hoping after a good poop, I can talk her into some of this Frankenstein food. The good news is we have about ten years before the Easy Cheese expires. Gotta love those preservatives! I used to have food morals, I really did. No more.

While Watching A Show About Penguins

Froggy saw a Macaroni Penguin and asked:

Why are they called Mac n' Cheese penguins?

So of course I had to look it up.

Maccaronism was a term for a particular style in 18th-century England marked by flamboyant or excessive ornamentation. A person who adopted this fashion was labelled a maccaroni or macaroni, as in the song "Yankee Doodle".

I always wondered why in the song they said, "Stuck a feather in his hat and called it macaroni." I love learning vicariously through my child!

I'm thankful for

For my family, my Froggy, my friends.

Double lattes, dark chocolate and India Pale Ale.

HBO, bubble baths, good books, all the incredible theatre and museums in Los Angeles.

The drawings and art projects Froggy brings home from preschool. I never knew a hand turkey with feathers could make me so happy.

I'm thankful for Froggy's silly dancing on the livingroom rug.

For folk music, jazz and soul.

I'm thankful for Froggy's teachers who love her and think she's hilarious.

For our pets, Buddy, Piper and Peanut.

I'm thankful for how incredibly loved and fortunate we are.

Happy Thanksgiving everyone!

Froggyisms

Froggy: Why do they call kitties fe-lions?


Froggy toots loudly and says, "That should keep you goin'!"


It's been so dry here and when it started sprinkling, Froggy said, "I guess it really does rain in California."


And not proud of this one, but...

Froggy startles the cat Peanut by screaming at her and says, "I scared Peanut out of the crap."

Auntie Honka Visits and we finally tell Froggy Disneyland exists.

Disneyland! Woo Hoo! The first time for Froggy.

In Minny Mouse's House.

Froggy did not understand who the heck the Mad Hatter was.

Meeting Mickey really was magical.

For the record, Minny's house was smaller than Mickey's and had less staff. Hmmm.

Goofy took Froggy's stuffed snake and pretented that it attacked him.

Here's Goofy running away while Froggy's snake bites his face.

Watching the parade!

At the beach with Auntie.

That is one BIG margarita Auntie.

Don't mind if I join you.

Froggy had a virgin apple juice.

What a great week! We miss you Auntie. Thanks for doing dishes and vacuuming and pretending that vacations include housework and giving meds. You're the best. oxox

Good Stuff

My sister is in town. And not only have we hit Disneyland, shopping and Artwalk, but tonight we saw Richard Thompson and Loudon Wainwright in concert at UCLA's Royce Hall.

Here's a great song by Loudon, called "Your Mother and I."

Or "Another Song in C"


And a great Richard Thompson song "1952 Vincent Black Lightning"

or Beeswing.

CF Clinic Update

Froggy had her CF clinic appointment on Friday, Nov. 6th.

She is still 30.5 lbs - the same weight she's been all year. Her height however was 100cm. She's growing up, not out. Darn. So her BMI is 10, weight 10th percentile and height 50th percentile. Our nutritionist said that because of Froggy's pickiness, coupled with lack of appetite, the g-tube is inevitable.

FD and I have been fighting this decision from the beginning. We felt like it's such an invasive step, that she could be genetically small, and would start eating more the older she became. But if anything, she eats less and is more active. Because there is a direct correlation between digestive health and lung health, FD and I have decided this is the best decision for our Froggy. We have tried EVERYTHING to get her to gain weight, milks with supplement in the middle of the night, high fat/calorie meals and snacks. We wanted to exhaust our options before the g-tube. But here we are, a year later and only a few ounces gained.

The wheels are turning and we'll meet with a GI doc soon for a couple tests before we schedule the surgery. It will probably happen in December or early January.

Froggy's throat culture came back NEGATIVE for Pseudomonas and MRSA, and all the other nasty little critters. Woo Hoo! Her x-rays showed little change from the x-ray two years ago, but did show slight peri-bronchial markings. I believe this is typical for CF lungs, but will do some research to see what this means exactly. Her blood levels were good, a liver enzyme elevated slightly, but could be due to her seizure meds. We're going to keep an eye on that, probably do another draw at our next appointment.

Despite the g-tube news (which we were prepared for) overall it is good news. Our kiddo is one healthy little frog. Her lungs are clear, even with a cold. And her preschool teacher said she seems healthier than the 'healthy' kids. Her immune system rocks! Must be all the broccoli she eats!

Halloween 2009

Blurry, but still stinkin' cute. Froggy dressed as a puppy, Hummingbird dressed as a cat and introducing "Robot Boy" as himself.


Swinging at our local park after trick-or-treating.

FD dressed as a Respiratory Therapist. Pretty clever.

Our neighbors dressed as a 1950's couple grilling with their "little sausage."

At one house we were serenaded!

We had a wonderful Halloween. I only wished I'd taken better pictures. Oh well, can't win them all!

Lauren

I've been reading Lauren's blog for years -- shortly after Froggy's diagnosis. Her kindness, faith and strength has been such a gift. She died yesterday. She was only 29.

I hate this disease.

I didn't know her personally, but it was so clear in her writing what a lovely and intelligent woman she was, how much she had to offer the world, and other families dealing with CF.

It seems only fitting that when I read her blog and her husband wrote that she passed away, my breath was taken away. I couldn't believe that someone so young, so kindhearted, could be taken, just like that. That is the reality of Cystic Fibrosis. This is why we must fight so hard for a cure.

Lauren, I hope you are breathing deep breaths of love tonight, as you leave the body that failed you, to find the weightlessness of being at peace. Your faith and trust in God has been an unreachable goal of mine, to find the certainty that you have, the absolute knowledge that even when we come to the end, we find a beginning. For the little I knew of you, I loved. And I know you of all people have found what you were looking for.

If you'd like to leave a kind word for her family, click HERE.

And if you'd like to make a donation in her name, to the CF Foundation, please click HERE.

I'm going to go into the bedroom and hug and kiss my Froggy like I never have before.