A little rant

Froggy started showing signs of malabsorption on Tuesday, and I didn't hear back from the Pulmonologist until this morning. She's been very uncomfortable, gassy, having excessive bowel movements and all of the wonderful side-affects of the food not absorbing properly. The clinic line would revert me back to the operator, I emailed our nurse, called her voicemail. Finally yesterday I called the on-call Pulmonologist who said he couldn't access my doctor's files and we'd have to wait until today. And now it's Friday and I have to deal with the insurance company and CCS before they close for the weekend. Ugh.

Our doc said that Froggy needs to go back on a stronger acid-blocker first, before they increase her pancreatic enzymes. The name brand acid blocker is not covered by our insurance and is $200 bucks a month. Which is why we switched to the generic, that now isn't working very well.

But my doc informed me that CA Children's Services should be paying for it -because they pay for all of her other patients. She can't understand why they are denying our claim. Well neither do I!

I have dealt with our CCS nurse case manager for months and she said that the acid blocker is not a direct treatment for CF. Which is crap. And that's what my doc said when I told her. The problem is that the CCS nurse case manager knows nothing about CF. I'm beginning to question if she really is a nurse at all, or perhaps just dressing like one for Halloween. I have come very close to calling her the queen mother of all swear words for women. You know the one.

So for now, I've called our CF nurse who also acts as a social worker at times, to help me deal with CCS. Let's hope things go our way. The energy it takes making these calls, dealing with insurance companies and pharmacies, social workers, docs, and everyone else who won't give me a call back, is exhausting. And Froggy is not sleeping well, so mommy is not sleeping well.

Froggy's vitamin levels came back okay, her iron is down, even though her hemoglobin was perfect. Not sure I understand that. And her zinc levels were low, so she'll have to take yet another stinky vitamin. What really concerns me about all of this is the fact that I was the one who brought up checking her vitamin levels at our last appointment, not the doctor. And it had been a long time since they had been checked. Along with the staff not returning my calls, I'm about ready to move to Minneapolis (where the center was rated the best in the nation). Maybe they'll give me a call back.

Sorry for the rant. It's either that, or I really will call the nurse case manager the queen mother of all swear words. The good news, and that is what I need to concentrate on, is Froggy is very healthy, her vitamin levels were good, her culture was negative and Froggydaddy is back from Vegas. We missed him!!!

A Poem for Froggy

The floorboards creak,
and I try not to wake
her dreams
of milk, stars, and cat tails flicking,
back and forth
like eyes under lids.
She sleeps.
My girl, my soul mate, the hours
creep by and I see
her forehead rise above the crib
like the sea giving birth to the sun,
and little fingers
beckon the morning.

By Froggymama

Can you believe this?

Read this article, if you can stomach it.

It's about a father who starves his son, in order to convince everyone he has Cystic Fibrosis. All of this for a few bucks. Fortunately the poor boy was taken away from his dad, and is doing well.

It reminds me of those horrible people after 9/11 who pretended to have lost a family member, or the losers during Katrina who stole relief aid for a new car or sex change. Did you hear about that?

Froggydaddy and I have a googlealert that updates us on every new drug in the pipeline and article published around the world concerning CF. We look forward to our weekly "good news" about the progress of fundraising and research. But tonight this article was such a shocking reminder that for every parent concerned and in love with their child, there is another capable of abuse. It's hard to imagine, feeling hate for a child, or even indifference. Especially your own.

We would give anything to take this disease away from Froggy, and to know that a father would wish this upon his son is unfathomable, and personal. Just as it was personal for the victims of 9/11, and Katrina and all the kind people who donated. And it's personal for every family whose child has CF.

I imagine this man will be given a slap on the wrist (like most punishments for people who abuse kids). And when this jerk does get his little community service sentence, I hope it involves taking out the trash at a children's hospital where he can witness the real pain of a disease like CF.

You rob a liquor store and get 25-to-life, you starve your kid and might do a couple years, or less. Our nation needs to look very closely at what our values really are. Everyone preaches about morals and ethics, when crimes involving money are taken more seriously than crimes committed against children. Do we value our cars, and banks, wallets and clothes, more than our kids? What do you think?

Healthy Froggy

Yesterday we had our doctor's appointment at Children's Hospital with the Cystic Fibrosis staff. Our doctor said, and I quote, "If all my patients were as healthy as Froggy, I would be one very happy doctor!" Woooooo Hoooo!!!

Froggy is just above 18 pounds (a little above the 5th percentile), which is great because she was between the 3rd and 5th before. And she is very tall, 28 1/2 inches (25th %). Imagine that, and with a Froggydaddy who is only 6ft 6in.

Her respiratory function is 100%, her cheeks are pink and she had the entire staff cracking up with her amazing energy and silly stunts, like ripping up the paper on the examining table and grabbing the stethoscope out of the doctor's ears.

They had to draw blood to check her vitamin levels and liver function - both of which were really bad in the hospital (six months ago). We will learn the results of that and the throat swab (testing for Pseudomonas) next week. So say a little prayer, chant, meditate, kiss good thoughts our way for the healthy results!

When Froggy was getting her blood drawn, the phlebotomist told me to hold down both of her arms. Well, my grip on the arm that wasn't getting poked, was loose. She got free and ripped the needle out of her arm. I felt horrible and we had to poke her again on the other arm. The phlebotomist did not make me feel better by saying something like, "oh, that happens all the time," or "she's young, she won't remember a thing," or even, "I wouldn't call you a terrible mother, maybe just a mediocre one."

Nope, instead she said, "Shoot, I was really getting a good flow on that vein, now I'll have to poke her again." Poor Froggy had big tears streaming down her face and screamed when the needle went in. But as soon as it was over, she was fine. Mommy however, apologized profusely until we got to the car, and cried a bit herself. Had she been a little older, I would have bought her a pony on the way home. A little overreaction? Yep.

But it did make me think about how we can make her appointments fun in the future. Like ice cream on the way home, a little toy that will be waiting for her when we return home, or her favorite dinner that night. We probably won't have room for a pony, but maybe a little something to help her forget the sting of the needle.

Keep Froggy in your thoughts, always sending positive and healing energy! xoxox Thanks. Froggy Mama

Spin the Bottle Baby!

My daughter won’t nurse anymore. She stopped entirely about four days ago. And when I tried, she looked at me like I’d just offered her a cigarette or booster shot. It hurt my feelings. In fact, it felt a lot like rejection. It felt a lot like Jr. High. I’m sure Freud would love to analyze this analogy. But I think emotions are separate from the situations that cause them. Fear is fear, anger, anger and rejection may come at all stages of life, but it still feels the same, really crappy.

In my rational brain, I acknowledge that the baby has just weaned herself. She is an independent little free-thinker, who now prefers the fast flow of a bottle, rather than my shriveled, National Geographic-sucked dry-never-to-be-perky-again-breasts. But my exhausted, hormonal mommy brain says, “She doesn’t love you anymore. She’s growing up. Soon she’ll be dating, bringing home guys with eyebrow piercings and tattoos, instant messaging her friends and calling her poor mother a really bad word that starts with “B”. And I don’t mean, “Best Mommy in the Entire World.”

I can only relate this rejection to being a 13-year-old dork in a Middle School full of metal heads, preppy biznotches and polo-wearing jocks. I’m hormonal, desperately trying to please everyone, and a little weepy. Yes, this feels a lot like Jr. High.

Sixteen years ago I was sitting in the basement of a make-out party at my cool best friend’s house. I only had one cool friend. And she was only friends with me because we’d known each other since we were six. That, and her mom made her invite me.

Everyone was playing spin-the-bottle. All the cute boys were there, Jett, Ryan, Jeremy, Skinny Chris, and Chubby Chris, and my crush, Eric. He didn’t know I was alive. Even though I was sitting right across from him, staring at him, as if he were the new Dalai Lama, he still had no idea I was alive.

I watched (terrified) as kids giddily leaned forward across the Pepsi Cola 2 Liter to exchange a tremendous amount of saliva. I was afraid of my braces locking, someone slipping me the tongue, Herpes. Fortunately, the bottle had avoided me for an hour. Stacey made out with everyone, and they were all really familiar with her (if you know what I mean). Side note: Stacey attended high school graduation with her two young children.

When the bottle finally did land on me, I was paired with my best friend’s boyfriend. We were supposed to kiss. Everyone looked apologetically at Skinny Chris, like he was about to embark on a Homeric epic quest into a cave to slay the two-headed monster. I was the two-headed monster with braces, a Little Orphan Annie perm and clothes my mother picked out the night before. My wardrobe consisted of a lacy collared blouse, tucked tightly into pleated slacks and a tasteful pair of Hushpuppies. I looked like a doily sticking out of a 1985 Sears Catalogue. But in my mother’s defense, I graduated high school without any children. And I’d like to think she had something to do with that.

I’ll admit it, I was a big dork. But I was the leader of the dorks, the queen bee dork. My entourage was the fat girls. Together we weighed close to 700 lbs and I only accounted for 82 of those. We were thick-skinned (literally), funny, and believed that between the five of us, we equaled at least one cool person.

In a way, I’m proud of being part of that clique or anti-clique. We were unpopular, but we had personality and I’ve never laughed harder in my life than I did in 7th grade Biology with those girls, making fun of our teacher, Mr. Shively, who we swore, donated his brain to science, and it was now floating in formaldehyde in the back of the classroom. We didn’t hurt each other or vie for boyfriends, because we didn’t have boyfriends, and therefore we had no reason to hurt each other. And that was okay with us. We had fun. We loved each other and learned how to survive without long legs and blonde flowing hair.

Something happens when you are rejected as a young adult. It changes your DNA into a survivor. I feel bad for the kids who were given an easy ride, the ones picked first for the kick-ball team, the girls ogled as they walked down the hall amidst their Jr. High judges. These kids were accepted as they were, before they were complete human beings, before they had time to grow as people. And because of this, many of them were stunted, left in Jr. High, to remain thirteen-year-olds forever.

My crush finally did acknowledge who I was in 10th grade. My braces were off, glasses thrown aside, and perm grown out. I’d also decided not to let my mom pick out my clothes anymore and the doily was donated to Goodwill. Eric and I were at a party and he was following me around the house the whole evening. Finally, he cornered me and said, “You used to be a dork, but now you’re hot. Wanna go out sometime?” I swear he actually said that. At that point, I learned that it never matters what others think of you. Because no matter how big of a dork you are, the people judging you are probably even more ridiculous.

And this rejection, as a mother, will also prepare me for Froggy’s teenage years, when she does call me the “B” word and dates boys with body piercings and tattoos (over my dead body). This small rejection makes me aware of the fact that I still do not have control over anybody. In Jr. High and motherhood, I'm still just a dork playing spin-the-bottle, only this time there's milk in it. And I love the person on the other side.

Grandmas and Grandpas

I'm so glad Froggy has all four grandparents and two great-grandmas. Here are few pics of our mini-vacation to Santa Barbara. We visited the mission, had yummy clam chowder in a bread bowl (my favorite) and did some antique shopping in Carpinteria. Dad waited outside the shops with the baby. They were both very patient.

My grandparents were such a huge part of my childhood. Climbing silos and teasing the pigs on the farm and taking the bus to downtown with Grammy for a fancy shmancy lunch at Younkers Tea Room are some of my fondest memories. I can't wait for the day when FroggyDaddy and I can drop Little Froggy off at the Grandparents and get away for a nice weekend. She has a whole lifetime of memories to create with her grandparents, building snowmen in Iowa and snorkling in California.

What did you learn about life from your grandparents? How did their influence change you?

Froggy's Birthday Party

We celebrated Froggy's birthday party on the 9th at our aunt and uncle's house. They were gracious to offer their beautiful home and it was a perfect day. I am always amazed by the kindness and generosity of our friends and family. Froggy is so loved and I'm convinced that her good-health and sense of humor is proof of that love. Grandpa J. put on a puppet show with our little cousin "C". It was hilarious and Froggie had a marvelous time! The puppet show consisted of Grover Monster attacking the King and Queen, with scary music courtesy of sister Snuggiekins. Everyone was very scared! Grandma and Grandpa G. came out from Iowa and I couldn't have done it without their help. It was also Great-grandma B's birthday and we were so happy she was there to celebrate the four generations of smart, sassy girls. Thank you! What a great first birthday for our girl!

Five Years Ago Today

My Friend J. emailed this poem to me this morning. I thought it was beautiful. Get out your tissues.

Poem: "For the Falling Man" by Annie Farnsworth from Bodies of Water, Bodies of Light. © Annie Farnsworth.

For the Falling Man

I see you again and again
tumbling out of the sky,
in your slate-grey suit and pressed white shirt.
At first I thought you were debris
from the explosion, maybe gray plaster wall
or fuselage but then I realized
that people were leaping.
I know who you are, I know
there's more to you than just this image
on the news, this ragdoll plummeting—
I know you were someone's lover, husband,
daddy. Last night you read stories
to your children, tucked them in, then curled into sleep
next to your wife. Perhaps there was small
sleepy talk of the future. Then,
before your morning coffee had cooled
you'd come to this; a choice between fire
or falling.
How feeble these words, billowing
in this aftermath, how ineffectual
this utterance of sorrow. We can see plainly
it's hopeless, even as the words trail from our mouths
—but we can't help ourselves—how I wish
we could trade them for something
that could really have caught you.

Froggy's Birthday

On Froggy's actual birthday (the 8th of Sept.) Mom and I baked a carrot cake, a chocolate cake, and some sad little muffins that had to be thrown out. They were hard, sunken in and had the consistency of a dog biscuit. But as you can see, we still fed one to the baby. She only ate the frosting. Just before bed, we had a little mini party, sang Happy Birthday and opened presents. We would celebrate her big party on the 9th with the Cali. family and friends. HAPPY BIRTHDAY MY BIG ONE YEAR OLD FROGGY!!!

On Writing

I never travel without my diary. One should always have something sensational to read on the train. - Oscar Wilde

When I write, I feel like an armless, legless man with a crayon in his mouth. - Kurt Vonnegut (he went to Iowa, you know.)

This is what separates artists from ordinary people: the belief, deep in our hearts, that if we build our castles well enough, somehow the ocean won't wash them away. I think this is a wonderful kind of person to be. - Anne Lamott, from "Bird by Bird."

Writing is like prostitution; first you do it for love, and then for a few close friends, and then for money. - Moliere

Write without pay until somebody offers pay; if nobody offers within three years, sawing wood is what you were intended for. - Mark Twain (I think I'll ignore this advice.)

If I had to give young writers advice, I'd say don't listen to writers talking about writing or themselves. - Lillian Hellman (I knew I liked her for a reason)

I miss the sky

I miss the sky. Not being able to see the stars in the city is like not being able to see my feet when I was pregnant. I knew they were there, but part of my body was missing.

I feel the most whole when walking on a trail in the mountains, or by a river in Iowa. The sound of wind blowing through the leaves and tall grasses is more beautiful than any song I've ever heard. And when I haven't visited the natural world in months, I start to get jittery, like I've had twelve cups of coffee on an empty stomach.

We are a mile and a half from the ocean. But it's not the same. I love the sea and it fills me up on another level. But I need the absence of other people, a trail that goes on forever, wandering creeks, birds dancing on branches. And quiet. Oh, I miss quiet. It is the first thing I notice about Iowa. Waking up at my parents house without the noise of the fruit wagon that plays, "La Cucaracha," the corn guy with his horn, the ice cream truck, the children yelling, cars honking, garbage trucks dumping bins outside the window at 7am - Iowa is just hushhhhhh.

But I've also become a mountain girl. Hiking is an adventure in the simplest form. It is the world opening up for you to look inside. No walk through the mountains will ever be the same as the next. No amusement park, shopping mall, even theatre experience can compare to walking through wildflowers, over fallen branches, finding seashells twenty miles from the ocean. It is my church, my refuge, my shelter from the city. But the sky, I miss the most. Because it reminds me that this world is bigger than me. It doesn't care about the little things, or is bothered by traffic and angry people. It just sits up there, without an opinion or agenda. It just is.

A Little Pathetic

Tonight as we were doing Froggy's respiratory therapy, I told FroggyDaddy(FD)to watch this funny part of a kid's video. We've been watching this Sesame Street musical DVD forever and rather than going totally insane, I'm starting to find the little things funny. Like this one girl who is spacing off and then starts jumping up and down wildly on command. Her eyes roll back in her head and she totally spazzes out. You can tell that someone is coaching the kids behind the camera, and she turns on like a windup toy. So I find this hilarious and point it out to FD. He looks at me pathetically and says, "oh, you're really finding humor in the little things these days, aren't you?"

I realize that as of late, there hasn't been much discussion on Sarte's philosophy of the existential life, or the fact that Pluto isn't really a planet after all, the scare of global warming, an appreciation of theatre, films and books. But from the moment I get up in the morning, our lives are Sesame Street, lunch, naps, walking the dog, dancing to kid's music and acting silly. For now, I've lost my adult sanity. By the time Froggy goes to bed, my brain is mush. Too mushy for writing, or talking. All I want to do is zone out in front of the tube and watch some cheesy story on Primetime or 60 Minutes about how the mold in our showers is slowing killing us, or how America's Children are in big trouble unless we get rid of vending machines at once, or the fact that in 2012 an asteroid will come dangerously close to earth. This is my life...for now.

I know that someday we will have the funds for a babysitter so FD and I can go to the theatre, and we will once again watch movies where there aren't puppets or children spazzing out on command. And I still find time to read in the tub to keep my brain functioning like an adult. But what's a Froggymama to do? My life now revolves around a one-year-old who just doesn't appreciate a Shakespearean sonnet, or film noir. If I didn't find humor in a Sesame Street DVD, I would go insane. Our brains were not made to function at a Kermit the Frog and Grover level, so I've found a way to find a DVD that I've watched 436 times funny. Until Froggy is ready to discuss politics, this is the best I can do.

Everyone May Comment Now!

Since I'm new to the blogging scene, I didn't know to change the settings so that everyone may comment. Now, you do not need to be a member of blogger.com to speak your mind. So comment away!

This picture is a couple months old, but it captures Froggy's personality. Today she learned that it is freaking hilarious to drop food on the dog from her high chair. She squealed with delight while Buddy was showered with macaroni, avocado, and egg.

To make matters worse, a certain person, who will remain nameless, but we'll just call him "Grandpa J", encouraged the one-way food fight with hilarious faces of shock, and feigned disgust, screaming, "oh no, don't do thaaat!!!"

I said, "Grandpa, don't encourage her."

He said, "Ya know, I've been told that my entire life."

It's great for a girl to have a "Grandpa J" who she can be naughty with. And fortunately Buddy is happy contorting into a yoga pose in order to retrieve egg from his ear.