Friday, February 27, 2009

A Good Day for Froggy

I had actually forgotten what it looked like to see Froggy putting food in her mouth. She's been snacking and drinking milk, but not eating meals.

Today, she had her supplement/milk for breakfast then a big lunch and a big dinner! And this is probably too much info, but she also had a big poop. I know, I know.... but this is a huge deal when your kid stops doing those basic functions we all take for granted.

I emailed Froggy's neurologist, and there really isn't an alternative seizure med, so we'll stick with the Lamictal and hope her body adjusts. In the meantime, FD and I are waking up a couple times a night to give her a milk/supplement to help add some weight to our skinny minnie!

Froggy, FD and I played hookie today and walked down to the Santa Monica Pier for a ride on the carousel. It was another gorgeous day in California-land. And Froggy was an ANGEL for her first Tobi treatment tonight. Whew. I love this kid!

Since her treatments are so long now, I bought a bunch of 99-cent store presents, and when she finishes a treatment, she gets to reach in a bag and pick out a toy. So far it's working. I realize bribery isn't the best parenting tactic, but how DO you keep a three year old cooperative for two hours a day? I'm also renting/buying videos to keep her busy for the long antibiotic haul. Wish us luck!
I am soooo pumped for knocking out these nasty lung bugs!!! We want Froggy's little lungs to be perfect when the cure comes!

Iowa and California -- Searching for the Cure.

Some incredible research from the University of Iowa and Berkeley. See, I knew the midwest and west coast would one day be friends.

For some very promising news on CF research click

Thursday, February 26, 2009

Froggy Update

Froggy is not blocked!!! She actually gained a few ounces - and that was with an empty belly. We will not have to admit her, but we do have to figure out why she isn't hungry and what to do about it. Our Pulmonologist thinks her seizure meds are contributing to her appetite loss.

She's 41.5 months and is 29lbs 2 oz. That's 18th percentile in weight.

She's 38 inches tall - that's 45th percentile for height.

Because she's tall and skinny, her Body Mass Index is 14.2, which is only the 10th percentile.

Genetically, Froggy will probably have to fight her BMI for life, because FD is so tall and skinny. Which would be great for you or me, but we need some meat on this kiddo to help her fight off respiratory bugs. Ideally her docs want her in the 50th percentile.

Froggy was an angel at the docs. She was still for her x-ray, and took deep breaths for the doc. So proud of our girl!

Wednesday, February 25, 2009

No Poop, No Eat

Froggy hasn't been eating. We decreased her laxative by a smidge, and I mean a smidge, and she stopped pooping for three days. She started poopin' again but... for a week, her appetite has been nil.

So today we meet with her doc at 8:30am for an x-ray. If she's blocked, we'll probably be admitted. I'll post an update as soon as we're home. Hopefully, we'll be home soon!

Friday, February 20, 2009

Velveeta Fortune

You know me, I don't believe in meant-to-be, but I do believe in irony, and coincidence.

Let's preface this by saying, life has been tough lately, not normal tough, but tough with a capital T that rhymes with P that stand for Pseudomonas.

So like all beginnings to a story with irony or coincidence, I'm sitting in a Chinese restaurant slurping hot and sour soup and reading a book called "Stumbling on Happiness," by Daniel Gilbert. The author is explaining how these conjoined twins Lori and Reba swear by their happiness and confess they would never want to be separated. The author says that most "normal singleton" people when hearing of conjoined happiness, justify it by stating, ---Oh, they only say they're happy because they don't know any other way, or ---They're not really happy, they're just happy with the crap life they've been given.

We assume these woman are merely making lemonade out of conjoined lemons, or they're delusional about what happiness truly is. They've settled for Velveeta, because they've never tasted brie.

And without giving away the entire book, because you really should read it... he says, who are we to judge happiness, ours or someone else's? Maybe those conjoined twins are living a more fulfilling life -- having a partner, someone who understands exactly what it is like to be in their body, someone who has been there from day one. Isn't that what we are all looking for in life, someone who truly understands what it is like to be YOU? A person who gets it, who can finish your sentence, wipe your tears away and laugh the loudest at your jokes? They may not have a spouse or children, but they have this perfect replica, a mirror image, a friend who no matter what will never leave.

Many a year ago, I was part of the deaf community in Los Angeles. And before that I studied American Sign Language and Deaf Culture in college. One of the difficult problems my deaf friends faced was not their lack of hearing. It was their parents' inability to accept their deafness --because as hearing parents, they couldn't imagine their deaf child's happiness in a silent world. So instead of immersing them in deaf culture, and people who shared a common, visual language, parents main-streamed their kids, keeping them away from other deaf people in the hope their child would learn "how to be happy in a hearing world." Being happy in a deaf world wasn't an option. The parents assumed that deaf-happy was not the same as hearing-happy. And as you can imagine, these kids were incredibly lonely, felt misunderstood and longed for a community, where someone understood them. It's hubris isn't it? Assuming that only we "perfect ones" could understand happiness?

I haven't finished the book, but I've started thinking...

I'm jealous, green with envy of people who have healthy kids. Sometimes I think potty training and pacifier weaning and all of those 'normal' milestones that parents fret over are silly. It's hard to relate. I think, if Froggy were normal, if she'd never been diagnosed with CF or Epilepsy, if we were just dealing with these silly little frustrations, we would be happy. But because of these diseases, because of the struggles, we weren't given a fair shake at happiness. We were screwed, short-changed. What chance have we at the SAME kind of happiness our friends enjoy? With what we've been given, do we have a claim on happy? When our kiddo has hours of respiratory therapy, chronic diarrhea, when she has seizures that aren't controlled, when we are struggling financially, when we are exhausted beyond exhausted at the end of the day with our pharmacy runs, medicare calls, insurance woes, when just keeping our kiddo alive is a full-time-draining job, where is there room for happiness?

So I finish my meal at the Chinese restaurant, my garlic chicken, soup and rice and I open my fortune cookie. And it says: "Look around; happiness is trying to catch you."

I dropped my chopsticks and sit there stunned. I think "if only, if only, if only...." and that's the thing. There isn't an "if only." If only doesn't exist. And it doesn't matter. Because it's an illusion, a trick of the eye, an aberration. We don't need 'if only' to be happy. We can say if only Froggy were healthy, but it doesn't change a thing.

I'm not underestimating the sorrow of CF. I cried today hard for Froggy's lab results. Her dad and I are having a hell of a time struggling through the mucky waters of CF life. But there in the Chinese restaurant with my book and my fortune, I thought, "even with a shitty diagnosis, even with shitty lab results, even with Epilepsy, and no money, and a scary California economy, I think that in the midst of it, HAPPINESS, like a bull dog, a missile, a hug, is still trying to catch us.

I'm beginning to think that 'perfect' has absolutely nothing to do with it.

I'm not going to lie, our life is more Velveeta than Brie...but honestly, I hate Brie. That's right, it tastes like a musty basement, like an old man's dirty socks. And Velveeta, well, it's smooth and sweet, like butter, like happiness... like life. It may not cost a lot, but smear it on a Saltine and it's as good as oysters and caviar. It's just perspective. That's all. And maybe that's all you need to let go and let happiness catch you. Who knows, but I'm tired of running.


Froggy cultured Pseudomonas again. I'm beyond bummed.

We'll treat it with a month of oral Cipro and two months of inhaled Tobi - then a year of Tobi on/off monthly.

For those of you who aren't familiar with Tobi, it adds on another 40 minutes to Froggy's inhaled treatments in the morning and pm. So she'll be hooked up to her nebulizer over two hours a day. Tell that to a toddler.

I can't believe it.

Tuesday, February 17, 2009

Desperate Times Call For...Nutella

When Froggy was born, I breastfed. When she started eating solids, we gave her only organic, nothing processed or sugary. We did organic milk, juice, eggs from cagefree chickens who were also fed organically...

Three years later, she eats Nutella from the jar.

I think all CF Parents can relate, am I right? Anything for those calories!

Friday, February 13, 2009

Happy Valentine's Day!

I'm not a fan of Hallmark holidays. I would prefer a card or nice gesture "just because" rather than a commercially motivated day of forced mass love. Okay, enough bah hum heart, here's why I love my husband, Froggydadda....

FD is a wonderful father. He's a jungle gym, a soft shoulder, a big kid, a love, a leader, a coach and I know that Froggy will always be able to talk to him, at 3 years, at 13, and into adulthood. He will listen without judgement and love Froggy and Sissysnuggiekins with all his heart.

FD is an incredible photographer and teacher. His students are forever changed by his guidance and love of viewing the world through a lens.

FD makes me laugh everyday. His jokes maybe low-brow and involve bodily noises, but still, I laugh.

Everyday FD tells me I'm beautiful, or calls me Pretty Mama.

FD tells Froggy to give her mommy kisses.

When I'm out running errands and call home, I hear hysterical toddler laughter in the background and I know that Froggy is having a BLAST with Daddy.

FD makes me think about life differently. He has never focused on Froggy's CF. He's focused on Froggy and her health. His positive attitude about her life gives me strength. If he believes it, I do too.

On our first date, FD showed me pictures of his daughter Sissysnuggiekins birth. Who does that? I knew he was one of a kind. And when I couldn't wait to meet his daughter, he was cautious and wanted to make sure I was worthy of meeting her. Turned out, I was.

For a long time (fifteen years) FD was a bicycle messenger in downtown Los Angeles. It was a job that brought him joy and freedom, but when Froggy was in the hospital after her diagnosis, he made a big decision. He decided to go back to school to become a Respiratory Therapist, so he could support his family, and become educated about Froggy's pulmonary care. It was such a huge step. He suffered and I mean suffered through two Algebra classes. And in June of this year, he will be DONE with his RT program. I know that this is not his life-long dream, but a sacrifice to support his family, to provide his daughter with excellent health care, and be informed about new treatments, and the best doctors/centers in our area. And that's love, giving up some freedoms for someone else's life.

FD is good at everything he does. He's an athlete, kicks my butt at Trivial Pursuit, and is incredibly creative and artistic.

We've been together nine years, and it hasn't been an easy road. We've had huge challenges in our lives and marriage. We've been through more in those nine years than most people face their entire lives, but we are strong because of it.

We squabble, we bicker, we love, we tease, we delight in one another, and can't imagine how we ended up here, this life, and yet... it's worth it. It's why I think at the end of the day, "Okay, I can do this tomorrow, even if it's tough. Because you're there." And if you weren't, I couldn't.

FD, I love you, truly, wholly. I don't know if things are 'meant to be' but I know that we are learning through eachother. And when we leave this place we will know a hell of a lot more than when we came. And I wouldn't, couldn't choose a better daddy for our kiddo. I love you honey. So there, a Happy, Cheesy Valentine's Day to All!

Ya Take The Good, Ya Take The Bad...

So the excellent news is, Froggy's lungs are clear. Her Pulmonologist said that her lungs sound PERFECT!!! Wooo Hooooo! They did a throat swab, so the culture will be ready to read sometime next week. Keep fingers crossed for normal lung flora!

The not-so-great news is that Froggy hasn't gained any weight in three months. I believe it's due to her new seizure med affecting her appetite, and she barely ate for the three days we were in the hospital for the EEG. She did however get taller! Of course.

One of the nutritionists we met with today had some helpful suggestions. So we'll try those - adding more fiber to her diet so we can wean her from the Miralax, adding a probiotic, and adding Duocal to everything! FD and I also have to get better about her night bottle with supplements. Sometimes we fall asleep without giving it to her. Speaking of bed... zzzzzzzz.

Thursday, February 12, 2009

Friday the 13th

I've always been a believer that the number 13 is actually quite lucky, and just given a bad rap.

Tomorrow, Froggy has her CF Clinic Appointment. It means...blood drawn, a weigh in (and I know she hasn't gained, so our Nutritionist will be pushin' the g-tube again), a meeting with the case manager, social worker, pulmonologist, a throat swab and possible x-rays. I'm tired just thinking about it.

Send us lucky Friday the 13th thoughts.

Guess How Much?

Guess how much Froggy's EEG in the hospital cost?


$10,000! Okay, not quite, just $9,840.

It makes me want to have octuplets.

Monday, February 09, 2009

The Long Beach Aquarium

My mom and dad have been in town this week, so today we met Grandpa J. at the Long Beach Aquarium. It is such an incredible place and Froggy loved every moment.

It's hard to believe we only have one more day with Mom and Dad. Time always goes by too quickly when they visit. And once again, with my mama around, I haven't washed a single dish all week. Wow, how cool is that?

Monday, February 02, 2009

Only in LA

I'm not kidding. I just saw two cops chasing someone down our street, guns drawn. And then, seconds later, sirens.

In the last few years we've had two deadly shootings and one deadly stabbing on our street. Woo Hoo Los Angeles!!! I'm ready to move.

Right now, about twenty minutes later, I'm looking out the window to drug sniffing dogs and cops. Come on.

Send Good Thoughts!

Please send good thoughts, or say prayers for two of our little CF friends....

Garran, who is seven and receiving new lungs today, and Blake, who is two, and just received his g-tube.

We are always hopeful, but also realistic that this disease doesn't discriminate or pardon. So please take a minute to send their families a prayer or good thought. Thank you.

A Pain in the Neck!

Last night Froggy complained of a neck ache. I thought maybe she meant her throat, and we were embarking on a cold.

This morning, she woke up, again saying her neck hurt. I asked her to point to the pain and she pointed to the back of her neck. My first thought was of course Meningitis. Because rather than it being a sprain or swollen lymph node, I go right to the worst case scenario, searching webmd for neck cancer, and spinal meningitis and the other 10,000 pains in the neck than mean sudden death, rather than just an actual pain in the neck.

After talking to our optimistic Pediatrician, we thought we'd give it a day, since she had no fever and was eating, drinking, and acting normally (other than some pain). But in the afternoon, we noticed the left side of her neck was beet red and spreading. So off to the doc we go...

When you 'walk in' to our busy Pediatric office without an appointment, it's like walking into the DMV with a suspended license- expect a wait, a big wait. Almost two hours later, we made it into the exam room. Froggy and I played "Race" with her horse, zebra and giraffe. The horse always won, by the way (guess who played the horse?) and I suspect the horse cheated.

In a restful moment, I took a look at Froggy's neck. It was even more red, and now reaching to the other side of her neck and back. Just above her hairline, I noticed something black, like a mole, or cut. But then, it started MOVING!

I gasped and totally freaked out my already nervous toddler, who strangely remembers that this is in fact the room where they pull out needles and lollipops in the same sadistic breath.

I ran out into the hall and found our doctor. "Dr. K, Dr. K!!!! Froggy has a tick embedded in her head!! And it's alive! It's ALIVE!!!"

Our doc grabbed a tweezers and I held down the Frog while she pulled the sucker (literally) out. It was disgusting. Feeling like a horrible parent who didn't notice a parasite on my child, my doctor says reassuringly, "Wow, I've never had to do that before!"

Great, so no other parent in the entire Los Angeles area has ever been soooo negligent! I explained, "We went on a hike yesterday," in a desperate attempt to restore my parental credibility. Like, "Look doc, fresh air, green pastures, aren't these essentials for a happy childhood?"

What must our doctors think? CF, Epilepsy and now Parasites? Do they think we live in a van down by the river? That we let our Pomeranian handle the parenting? Geez!

Well Froggy was a trooper, got her lollipop, and hopefully no one will report us to Children's Services.
What's next, rickets?