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.

Just a little poem I wrote...

(Wrote this many years ago, but it's one of my favorites if I do say so myself.)

I'LL TAKE THE BOOKS-YOU KEEP THE CAT

Aeschylus crowded in the cardboard box
that still has duct tape from the move last summer, and
Sartre, sleeping in the same corner with Whitman.
Words pressed against pages against
covers against each other and I wonder
how they get along in there,
so close with no space to breathe, but rather taking
in the pulpy juice of basement must.
Grandpa’s Modern Mechanics growing black mold from sitting in the shop with
sawdust, still smelling like his tobacco caught between his teeth spit
out in the bucket under the table during dinner with Grandma screaming,
“Not in my house.”
But now it’s time to mix sonnets with soliloquies and
I think I’m not ready for this as I throw
them to their literary death, none more important than the next,
Austen sharing her final resting place with Judy Blume,
from sixth grade when my English teacher-a bitter old nag with cow legs,
told me my favorite author was mediocre, and I felt
mediocre taking in nouns and verbs and pronouns that didn’t seem like a real
language, but rather a
math equation where two trains are supposed to meet at a
certain station at a
certain time that
I never figured out or would ever care to know because I didn’t buy a ticket and I wasn’t
going anywhere,
but it was important when my knees were still knobby and scabs were cool and told stories of bike rides that ended too quickly on our gravel road by the house where the dog
never stopped barking.
Shakespeare and Yeats, Hurston and Hughes are the last to go
always hard to put down
when the candles burn
slow like the hours when sleep is in the other room and I am in
mine wondering why you stay
on your side of the bed as I sift through the pages,
reading nothing but staring at sentences and words that make a song like your breath
on the pillow with no rhyme or meter
like wind caught in the crevice of a leaf’s belly.
Into the back seat, the box with all its wisdom
just
shaking to the beat of tires on the street.

-Froggymama

Perspective

A woman with CF I know through the blogosphere isn't doing well. She's been in the hospital for a while and could use some prayers, kind thoughts and maybe a comment on her blog for her family. Her name is Lauren and you can visit her site HERE.

"We are like children building a sand castle. We embellish it with beautiful shells, bits of driftwood, and pieces of colored glass. The castle is ours, off-limit to others. We're willing to attack if others threaten to hurt it. Yet despite all our attachment, we know that the tide will inevitably come in and sweep the sand castle away. The trick is to enjoy it fully but without clinging, and when the time comes, let it dissolve back into the sea." - Pema Chodron, from her book, "When Things Fall Apart."

Good times

It's 4:30am. This has been our week:

FD worked 12/hour shifts everyday for over a week.

FD got the flu.

FD's car broke down on the freeway.

FD's phone broke.

Someone stole my ATM information and drained my checking and savings account. So the first real paycheck we've had in over 3.5 years was stolen.

Froggy and I stood in line for over 3 hours for the H1N1 vaccine.

I wake up at 6:30am with the Frog and work every second til I drop asleep at night. It feels impossible and hopeless. There are always dishes in the sink and laundry piled over the hamper.
Tonight was one of those nights I'd like expunged from my record as a human being. I ranted, I complained, I yelled, I cried, I blamed. At a time where I need love the most, I am the most unlovable. I would run away from me if I could. I would roll my eyes and head for the door.

There is a breaking point. There is.

I'm sick of being a charity case. I'm sick of needing help. I'm sick of horrible things happening to our family. I'm sick of thinking things have to get better and being disappointed when they don't. I'm sick of things getting worse and worse and worse. I am in the bell jar.

And tomorrow I have to get up (It's now 5am, I guess I am up) and smile and make up for the jerk parent, the jerk person I was last night. And I have to walk through my day feeling the guilt of breaking down, of being angry at so many things.

It seems like we're always in reach of a better life, but the second we try to grab it, it disappears. And the thing I want more than anything is for someone to understand, truly understand what this feels like, to walk through this muck with me, to tell me that big lie that everyone needs to hear, "Everything will be okay." Of course it won't. Life is constantly in flux and more horrible things will happen, but for some reason I'd settle for that big lie right now.