Tummy Troubles

Froggy is in the hospital. We were admitted this morning because for the last two months she has had chronic lower abdominal pain. She had a rectal impaction which we cleared, and we thought she felt a little better for a while. But this last week she stayed home from school, was just not herself and has hardly eaten anything. Last night during her tube-feed she projectile vomited. This morning, I brought her in.

Here's a rundown of today:

We arrived at 11:30am. Our nurse care manager (who is a Goddess) got Froggy a private room right away. Our GI doc met us quickly and we talked for a while. He isn't sure, but thinks this could be a hiatal hernia. We also found out on Tuesday after a rectal exam (poor Frog) that her perineum is short so her rectum can only expand down -which means she has strain to have a bowel movement and this condition can cause constipation and impactions. Woo hoo!

Tomorrow am, they're going to give her heavy sedation and scope her (colonoscopy and GI endoscopy). Which means, they're going in her through her bum and down her throat to look at her GI system from both angles. Lovely.

I am so glad we are finally here. As much as I hate having my baby go through this, not knowing and trouble shooting this pain for months has been miserable. I can't wait to have some answers, and some relief for her!

The procedure should take about an hour. And hopefully by tomorrow afternoon we'll have some answers.

It's been a very long day for babygirl. She's had blood drawn, an IV inserted, 3 fingers pricked, dozens of GI, Pulmonologists, nurses, phlebotomists, poking and prodding. Tonight, they've given her magnesium sulfate through her g-tube so hopefully she can get cleaned out before the procedure tomorrow.

Everytime someone walks into our hospital room she says, "What are YOU going to do to me?" Poor kiddo. The good news is our hospital is amazing and I know she is not only in good hands, but some of the best hands in the country. Please send good thoughts and say some prayers for our little Frog. xoxo

Froggyisms before they are lost into my mommy vortex that was once a brain.

Froggy: Mom, when are we gonna have that oddball soup again?
FM: Oddball soup?
Froggy: That chickeny soup with the big oddball in it?
FM: Matzo ball?
Froggy: Yeah, matzo ball soup!


Froggy: If there are silly straws, does that mean there are serious straws?


Froggy and I were reading a book about animals in zoos across the world, when we came across an aardvark this was our dialogue:

Froggymama: I wonder what the difference is between an aardvark and an anteater? Are they the same animal?

Froggy: No, the anteater has smaller ears and a longer snout. The aardvark has a nose about this big (shows me) and very large ears. And I think anteaters can eat more ants faster.

So of course I look it up and the little stinker is right! Where does she get this stuff? I'm humbled by my smart kiddo, she is way smarter than I was at her age, and maybe even now. Should I admit that?

Team Froggy's Legs 2013

Froggy's First Poems

A Good Day

The sun is shining
and the morning glories are blooming
and the birds are singing,
Oh, what a good day.

- Froggy


Love is great

Love is good
love is great
love is everywhere
love is in the air
love is even
in your hair.
 
-Froggy

Makilda the murdering gremlin

Froggy's new pretend character is named "Makilda, the murdering gremlin." She has an incredibly creepy voice, but is also kinda cute. And...I'm a little afraid of her. Actually I'm a lot afraid of her. She's a mix between the red-rum kid from "The Shining" and Smurfette. Creepy...very creepy. If I'm ever found stabbed to death with barbie legs and hog-tied to my bed with a jump-rope, you'll know who did it - MAKILDA, the murdering gremlin!!!

Froggy has always been funny, but her comedic timing lately has been spot on. I however have been terrible about writing down all those funny moments. Other than Makilda, and that is mostly for a written alibi.

Froggy and her new BFF love playing 'teenager.' Froggy says "We're teenagers with dwarfism, that's why we're so short for our age." Well that explains it, so glad she clarified her imaginitive play with some realistic disclaimers.  (note to self, we're watching way too much TLC).

Froggy had two blood draws today to test her blood sugar levels. Kids with CF (a majority) eventually get something called CFRD - CF related diabetes. Just another lovely component of CF. She was... better than the last time. When her mic-key fell out a few months ago, I believe it took 4 nurses and myself to hold her down. This time, only me and one very strong phlebotomist. Afterwards, we went to the Long Beach Aquarium. It's become a tradition and makes those clinic appointments and blood draws not as macabre. We go so often now that Froggy has become quite the expert on marine life. She was telling a woman next to us all about coral reefs and how otters have a million hairs per square inch, and German Shepards only have 100,000 on their entire body. She pointed out the sea slugs, anemones, and leafy sea dragon. She knows the Mexican lookdown fish, and giant sea bass, and thinks the eel is pretty because of it's purple-blue eyes. While visiting the sea lions, she took a penny and tossed it along the curved glass of it's underground aquarium. For twenty minutes a crowd gathered around while Froggy played fetch with this sea lion and her penny. A mom came up to me and said, "She's gonna change the world." I need to remember this when she's whining in the back of the car singing the, "butthole, poo poo, wee wee," song.

On a quick healthnote, Froggy has been having lots of tummy aches, and the school nurse calls me at least 2 times a week to come pick her up. Poor girl. We're working with GI on it, so I'm sure will figure it out. It's always before or after eating. Definitely digestive, not bladder/kidneys. And I also think the second her stomach hurts at school, even if it's gas or reflux, she just wants to be home. Don't we all?

I'll update on the bloodwork soon and will post more photos soon. (my phone won't upload to my computer, and all my pics are on my phone.)

Kicking CF to the curb

At Froggy's last CF clinic appointment, her pulmonologist, nutritionist and GI doc all said the same thing, "Keep doing whatever it is you're doing!"

She's gained 3 pounds in 3 months (just 2 ounces shy of 55 pounds), her FEV1 was 102 (with a cold) and her BMI percentage is 66.

I can't tell you how wonderful it is to hear that this hard work is paying off. And I understand as a CF mama that it doesn't always and diligence makes no promises. But man it felt good to hear we are doing something right.

Froggy gets a g-tube feed every night, so I'm up 2 times to give enzymes and then unhook her. And then a couple hours later, she wakes up to pee (750mls of formula will do that to ya), so I'm usually up again. We've tried giving her enzymes only at the beginning of the feed and that caused malabsorption, so it works better to just get up. It's been our routine, our normal. But there are nights where an uninterrupted snooze would be heavenly.

Being a mom is thankless (worth it, but without alot of pats on the back, more like whiny slaps) so to see results, to be part of working towards my kiddo's health and seeing it make a difference, having confirmation from her docs, is a great validation.

Froggy is taking charge of her own care more. She answers the doc's questions and actually asked our GI Doc at what age could we remove her mic-key? I love our CF specialists. They are honest, but kind. GI  told her that they would want to keep it atleast through puberty. Froggy looked defeated, and told the doc she hated her mic-key and she can't wait to get rid of it. She then gave her reasons why.

"I can't go down the slide on my tummy!"

"It sticks out when I wear my bathing suit."

 "None of my friends have one."

I'm proud she made a case for herself (even though it was shot down by mommy and doctor). She's more outspoken and independent at seven than I was at twenty seven.

The mic-key has been a love/hate relationship for all of us. It has allowed us to lighten up on meals,  and let her eat when she's hungry because we know she'll get those extra calories at night. She's also grown from the 5th percentile to above the 50th in weight. So I can't imagine not having that g-tube safety net.

Froggy has adjusted wonderfully to her new home. We have four cats. Four. Four cats. For the love of God, four cats. And they all get along. Although Peanut hisses at June, because she's younger and thinner. But that's to be expected. I've never seen Piper happier (she's pushing 17). They have a patio, so these indoor-all-their-lives cats are able for the first time to soak in the sun and feel the wind between their whiskers.

We have a bunch of neighbor girls on our block who are Froggy's age (give or take a year), and Froggy loves running out the door saying, "I'm off to C's house!" The freedom has transformed her. And it's made my life easier. Less, "Mommy, play with me!" and "I'm bored!" The girls run from house to house, playing American Girl Dolls and climbing the rubber tree, swinging on the tire swing and terrorizing our quiet neighbors. They own the neighborhood now, and love to play "spies" where they hide in the bushes and spy on the passerbys. I caught them spraying unsuspecting walkers with a squirt bottle and found out later it was filled with toilet water. Oh my. They are the girl versions of Dennis the Menace. Denise the Menice of Venice!

Life is good. Hard, but good. As I write this, it is my first weekend in 3 weeks sans kiddo. Atticus and I walked to breakfast (with mimosas of course!), piddled around the house, wrote a bit, went for a walk on the beach, hit the book store, and are now settled in for a marathon of Downton Abbey. After the holidays and struggling with a defiant but sweet Froggy, this is just what the doctor ordered. For both of us. Time to regroup, get some rest and get ready for my rambunctious and rowdy little Frog.

Fly on the wall

I am moving. For the first time in 10 years. There is something about packing your belongings that makes you face who you really are, what you have accumulated, kept. What matters most. 


When I was pregnant with Froggy I purged her room of my college belongings. There was a grand purpose to this purge, the nest needed to be free of old text books and posters, my life as a single-20-something. Beer bongs and mardi gras beads made way for burp clothes and a diaper genie. I had a child coming and it was easy to throw away chatzkies and memorabilia because I knew what mattered was this person about to enter our world. My purpose was the future - the space yet to be filled.

There were small interim purges, ridding our tiny closets of baby clothes and books read about how to be good parents and good partners (in retrospect, maybe I should have kept some of those). But when you live in an apartment, there isn't the luxury (or burden) of storing a bunch of crap (mementos) you'll never look at again. I finally, after 2000 miles and 15 years donated my cross-country skis to Goodwill. And even they didn't want them. The employee actually laughed and said, "Oh yeah, we'll just throw those puppies in the garbage." Because who, after all, uses cross country skis in Los Angeles? But they meant something to me dammit. Skiing after dark in a college town with a light snow fall, a sky full of stars and a good friend. How could anyone throw that memory away?

After our divorce, I purged again. It was in the letting go of actual things that life went on. In the empty space I was able to breathe. And able to see that there was indeed a future. Nothing bogging us down, except for 3000 stuffed animals, sippy cups and plastic party favors leftover from 2 million birthday parties. I hate goody bags. Nowadays that plastic made-in-china crap goes right into the recycling before Froggy knows what hit her (I do this while she's still high on blue frosting and pinata loot). And so far it's seemed to work. Erasers and parachutes, sticky hands and balloons, basically choking hazards for the cats and something to pollute our glorious earth. I have never and will never buy goody bags. In fact, at Froggy's last birthday party a little girl asked, "Where's our goody bag?" And I replied, "You don't need a goody bag kid. The fun is the gift." She looked at me like I'd just inhaled a wee too much birthday candle smoke. But where were we? Moving. Ah yes.

Boxes and boxes of our past donated, baby clothes, crib sheets, bottles, wedding gifts. Put into cardboard and placed in someone else's care.

"Here, take this. I don't need it anymore. But be kind. It meant something."

So, we're starting anew. Kind of. Because when you have a child it isn't just "packing up and movin' on up" (cue The Jefferson's soundtrack). It's checking out school districts and neighborhoods, preparing a little person for a big-arse change. We're not starting over, we are starting wonderful. That's how I'm looking at it. Starting wonderful.

We've been preparing Froggy for about six months that this change was afoot. And we've let her design her bedroom, with a brand new trundle bed that in her words is "very French and very fancy." She picked the colors for the walls (pink and purple of course), and we've met the neighborhood kids. One girl is a Froggy clone. They are sure to wreak serious havoc. We're within walking distance of the beach, coffee shops and trendy clothing stores (a bit too hipster for my second-hand tastes, but what are you gonna do?).

This apartment has seen Froggy's first steps, first giggles, first words. First everything. I brought her for the first time through the door of our blue-walled living room. Her nursery that I had so carefully set up with baby pictures of her extended family was never actually lived in. Because she settled right into my bed and has remained there for snuggles and nursing, tube feedings and lullabies. I rocked her to the song of the creak of our hard wood floor, every night. Chirp, creak, conk. Chirp, creak, conk. Chirp, creak, conk.

The thought of leaving these walls has been difficult. I've been preparing Froggy, but hadn't prepared myself. This was my home too. My wonderful, sweet, good-vibed home. All our furniture, collected from friends and family, goodwills around the city. People, just like me who left these items in my care saying, "Here, take this, I don't need it anymore.  But be kind. It meant something."

Our park at the end of our street, our crazy and kind-hearted neighbors. The dogs, Diego, Rocket, Spike, Dexter and Disco. You'll be missed somethin' awful.

It's hard to let go even for something better.

To be fair there are plenty of bad memories within these wall as well. I stood at the screen door and wailed as the doctor told me Froggy had Cystic Fibrosis. I walked the halls with worry when she started having seizures and sobbed on the cold tile of our pink kitchen floor. The bathtub where I watched my daughter dance in my belly was also my escape in a bad marriage. There were many tears shed and fights where no one won. It was life here. Real life. And despite the drama, it is not an easy stage to exit.

The other night I was sitting on our second-hand sofa with both cats at my side. Froggy was sound asleep, and I could hear the hum of her feeding tube and air purifier. I looked around the room and thought, "I'm ready. I'm ready to go." It really was the first time I'd felt that. I hadn't prepared myself for this huge transition even though I knew it was coming. And it came, like all things good, naturally. When it should.

I'm ready. I'm scared. But ready. This has been a good home. But we have outgrown it. And now it is time to move on. Time to let go. Time to see what is behind door number....?

A year in pictures. It's about freakin' time.

Mommy and Froggy on one of many hikes.

Froggy getting a birthday "spanking" from her Kindergarten teacher last year.

Froggy has become quite the fisherwoman, catching big bass and catfish.

She is SUPER fast!

Hanging in trees with friends.

Catching butterflies at the cabin in Missouri.

Great grammy and the Frog snuggling together.

Buddy, sweet Buddy.

Best pal Mr. O.

Climbing haystacks at the cabin while getting loved by the farm beagles.

Grandma S. was telling a GREAT story.

This kid will climb mountains.

Froggy and Atticus. My two loves.

This Halloween we painted the town orange.

Watch out, she will skate you down!