Presents for the Froggy Princess

If you're stumped for ideas for Froggy's birthday, I've created a wish list on Amazon. By no means does she NEED any of these things. I'm just shopping online for the future. Froggy has everything she needs and more.

We could use some clothes for fall, but I'm a huge believer in buying 'used'. We stain everything with meds or food anyway. So a stop at Goodwill or 'Out of the Closet' for some play clothes would be awesome.

Again, we don't need anything. Notice a bike seat on the list (more a present for Froggymama than Froggy). Here's a sad fact, Froggy calls my bike "Papa's Bike". Ya wanna know why? Because when my dad visits, he rides it everyday. Froggy has never seen me ride the bike, in two years, not once. So sad.

Click HERE.

Sick little Tadpole

(Not the best picture of Froggy, but a great one
of Great Grammy celebrating her 89th birthday in style, with a two year old's tiara and earings. The shoes didn't quite fit.)

In other news, Froggy has a bad cold. She's coughing, sneezing, and has a runny nose. The poor thing is soooo congested, we're doing three breathing treatments a day and one in the middle of the night. And kids with CF can't take cough meds, so this is extra fun! Send healing thoughts.

Looking for the House of Gingerbread

We scattered breadcrumbs along the path
For miles and miles

until we forgot where

we’d come from
or where
we were going.

Crossing the wooden planks
of a mossy bridge,
our feet made the hollow sound
of no ground below,

you held my hand
and said

'Be careful not
to slip my dear,
It’s a long way down
And we've wasted our bread
on the birds.

- Froggymama

The MRI

The MRI went well. Froggy was a champ. We won't know the results until the middle of next week. Oh well. I have a ton of work piling up from a week off, and a morning off. So more later...

The MRI is tomorrow!

Please say a little prayer or send positive thoughts to Froggy tomorrow at 10:30am. We're scheduled for her MRI at UCLA. I'm worried about the general anesthetic, so a lot of lovin sent our way will definitely help. I know she'll be fine, but I'm a mama, so I worry. Thank you everyone!

Happy Early Birthday!

Pee Wee and Froggy celebrating their birthdays together. Pee Wee turned 22, and
Froggy will be 2 on September 8th!

Auntie "Pigwoman" is my mom's sis. I can't remember why she is called that, she's very thin. I think it might have had something to do with a casserole, but I can't remember.

Gorgeous Great Grammy! She's 89, and still so pretty.

My sis, Auntie Arctica. Froggy LOVES her, as you can tell.

Cousin "EEEEEEE" blowing bubbles. Froggy kept talking gibberish to him for about five minutes. He listened patiently, nodding his head and acknowledging the conversation. Finally, he said, "Yeah, I have no idea what you're talking about."

Froggy and Papa Gus. Two peas in a pod.

Froggymama and Froggy riding a tricycle for the first time. Papa put blocks on the peddles so she could reach, but she's still not quite ready.

A GREAT birthday present from Grandma. It's been raining here, so we'll have to take advantage of it before we go back to the desert that is LA.

Opening presents. This was a bubble machine. Oh joy! It's a puppy that opens his mouth and spits bubbles. What more does a toddler need in life?

Cousin "Ballerina" practicing her babysitting skills.

So Green for Green

The Friendly Skies

Pictures are on their way. The flight was great. Froggy was an angel and at least five people on the plane told us what a good kid she is, and smart taboot. If that sounds like bragging, I am. I was soooo proud of her. She sat (yes Froggy) SAT on my lap the entire flight, contently, while we read the same four stories over and over and over again. I think we'll be putting "Baby Barnyard" away for the next couple years. If I have to quack like a duck or moo like a cow one more time, my brain will officially dissolve into mommy mush.

Froggy counted to five for the nice German woman sitting next to us, who happened to be a kindergarten teacher (how lucky are we!), and she loved the tattoos on the guy to our left, who was in the army, returning to his post in Frankfurt. Our connecting city was Chicago, so there were a lot of internationally bound passengers. Ohhhh so jealous!

Before the babe, I loved flying. It was five hours of uninterrupted reading and writing. No phone calls, no cleaning, no conversation. But with a kid I'm forced to interact with my fellow passengers, mostly apologizing for dropping an apple juice in their lap, or asking them to kindly retrieve a pacifier that happened to role all the way down the aisle. With a toddler, no matter what, you have to acknowledge the fact that you're part of this world. Forget escaping into a juicy novel with people much more beautiful and rich, or writing that screenplay, nope you're a mom on a plane, desperately waiting for that seatbelt sign to go off so you can change the leaky diaper that just saturated your pants. It's real life at its finest.

I thought I would miss my book, or writing pad, but it was really wonderful talking to complete strangers for four hours. I learned a lot. We discussed health care in Germany, the army, tattoos, kids, wives, boyfriends, Los Angeles, family, flying, traveling, customs, basically everything except politics and religion. It reminded me how important it is to connect with people from other places and other ways of life. I didn't get to escape, but I did get to live the experience of traveling with a great kid. And as nice as it was to talk with strangers, it was even better touching down in a place where everyone feels like family.

Going Home

This poem reminds me of leaving home, of always looking back while trying to move forward. Whether in LA or Iowa, I'm missing somebody.

Poem: "Girder" by Nan Cohen, from Rope Bridge. © Cherry Grove Collection.

Girder

The simplest of bridges, a promise
that you will go forward,
that you can come back.
So you cross over.
It says you can come back.
So you go forward.
But even if you come back
then you must go forward.
I am always either going back
or coming forward. There is always
something I have to carry,
something I leave behind.
I am a figure in a logic problem,
standing on one shorewith the things I cannot leave,
looking across at what I cannot have.

The Medication Has Arrived - Allelujah

I'm still calling the BBB and my insurance company. If they don't switch us to another pharmacy, I'm calling Michael Moore. Ha!

Monkeys running the show

The pharmacy still hasn't sent her inhaled medication. They're in Ohio. I told them today that I was calling the Better Business Bureau and my lawyer. If I go into the details, I'll lose my mind. This has been a nightmare, and my awful, horrible, dispicable insurance company forces us to use this worthless pharmacy, cause ya know they get a deal. Gee, I wonder why? I should keep a personal diary, rather than boring all of you with our pharmacy/insurance woes. I'm sure everyone has their beef. And there's nothing more boring than hearing about ours. It's either venting like this, or running around the neighborhood naked spraying people with a supersoaker screaming, "You're all gonna pay!" I figured this was a bit healthier, and I can't get arrested. So thanks for listening.

EEG Results

I dressed myself today, can you tell?

The MRI scheduler called bright and early, leaving a message that they wanted to reschedule Froggy's MRI to an earlier date. I panicked and thought this meant the neurologist had called them with bad news. But it was because they wanted to move the procedure to the hospital (rather than the clinic), as a precaution since she has CF. So now our MRI is Wednesday, August 29th at 10:30am.

I spoke with the neurologist and she said there was one spike on the EEG. A spike just means an irregular brain wave, which could be indicative of a seizure. She said that some EEG's can register hundreds or even thousands of spikes, so one is pretty good. However, it does mean that something is going on. Her seizures were not just a fluke or something brought on by a fever or a random occurance. So as of tomorrow, she'll have one more medication to take! I'm actually relieved. The fear of her having another seizure has been a big stress and this will probably prevent most, if not all of them. The doc also thinks the seizure is coming from the Frontal Lobe. So of course this neurotic mama got online and looked up frontal lobe seizures and learned way more than I needed to know. So I've vowed to stay away from the Mayo clinic and webmd website until the MRI.

We pick up her new meds tomorrow, and I have to work on getting coverage for one that is $300.00 with Medicare or CCS, but the meds more than likely will only be covered if it's directly related to Cystic Fibrosis. So it looks like I'll have to go through the red tape tomorrow. I'm so exhausted and mad, because I was on the phone today for four hours (not exaggerating) with the pharmacy in Indiana that STILL has not delivered one of her inhaled meds. I can't go into details or steam will come out of my ears and my head will spin around, and it's "mommy is having a glass of red wine time" not "bitching about life" time. Supposedly they're coming tomorrow. I'm not holding my breath.

After receiving all the important info, I asked the doc if it would be okay to take Froggy to Iowa this Friday. I told her that I wanted to do what was best for Froggy and we could reschedule, but she said that as long as we weren't camping in the deep woods without proper health care, she couldn't see any reason not to go. I said, "you've obviously never been to Iowa." Ha, ha. Just kidding.

So if Froggy stays healthy the next few days and doesn't have any seizures, we might be able to get the heck out of dodge for a while, which would be nice.

In regular-life news, I bought some birthday presents for Froggy today (at Target of course, where else?). The very second I put one of the bags on the floor, Froggy pulled out her new dress up shoes and yelled "SHOESSSSS!" So she opened that one early. And boy were they a hit. She walked around the house for an hour saying, "shoes, shoes, shoes." She's never getting a credit card, ever.

No news is good news, but it sure is frustrating.

I called the neurologist's office this morning (the moment they opened of course) and they didn't have the results of Froggy's EEG. "When, when, when?" I asked. "Uh, maybe tomorrow?" they replied. I hate waiting.

We did schedule the MRI. It is September 6th at 9am. I don't like the idea of my babe getting general anesthesia, so I'm happy to wait for that one. Cross your fingers that we get the EEG results tomorrow, and that her little brain waves are perfectly normal, if not BRILLIANT!

Wicked

Saturday night, my wonderful friend "S" took me to see the musical "Wicked" at Pantages Theatre in Hollywood. It was AMAZING!!!

We had dinner before the show with her friend "J" who teaches yoga to kids. The restaurant was 'Double Dutch' in Culver City and I had salmon with a raspberry sauce and steamed veggies. Yum.

What a lovely evening with two great girls. I missed my Froggy, but this mama needed a little night life. Thanks Grandma "W" for babysitting. Sorry she peed on the floor! As usual, Froggy believes she is part dog, and wanted to emulate Buddy. I wouldn't be surprised if she lifted her leg. It must be the baby leash.

WICKED was one of the best musicals I've ever seen. The story and lyrics were beautiful and surprisingly deep. I'm not a fan of hokey musicals like "Oklahoma" but the message of WICKED was profound and layered.

(spoiler alert) If you've seen or heard of the musical, you know it's about how the Wicked Witch from THE WIZARD OF OZ was just misunderstood. She wasn't wicked at all. But through a series of miscommunications and manipulation from the "Sentimental Wizard" and others, she is misconstrued as evil. It's a retelling of THE WIZARD OF OZ, the story behind the story and the politics of Oz. The characters were not the one-dimensional versions from the movie, rather flawed and human, persuaded by rejection and popularity. And I believe that the main theme of the musical is that no one is either good or bad, pretty or ugly in their entirety. We are defined, our nations, and leaders, by the person telling the story - the munchkins and flying monkeys, the wizard and guards, the author or playwright. And they have their own biases and grudges, their agenda that colors every word and character. They weave the story, and what they leave out may be more important than what they include.

But the most wonderful aspect of WICKED was that through friendship and love, our beauty or pointy hat does not have to define us. Our flawed and lovely friends, can see beyond the green skin, the limitations of character, into the heart of us, the pulp of our story. Are you a liberator or thief, a leader or a fraud, a witch or a woman? And when we have the whole story, the reason behind the actions, the person behind the character, only then will we know how the story really ends -- melting into the floor, or liberated by love? We all play a part in the good and wicked ways of the world. After all, even Dorothy stole the ruby slippers. But who am I to judge.

A Good Day

After a tough week, we really needed today. Froggy was in super-fun mode. We walked through the Venice canals and down the pier. She chased the sea gulls, and said "hi" to a little boy about fifty times until he finally submitted and said, "hey" back. We had ice cream and on our walk back to the car, Froggy stopped and said 'hello' to a homeless guy who seemed like his spirits were lifted by her warm greeting. I love that she is completely unaware of the facts of life, how adults ignore those men sitting on the curb with a bottle of Jack, collecting cardboard and cans, waiting for someone to walk by and notice them, acknowledge their existence. I imagine that after a while, even they wonder if they're still here. And then a kid like Froggy comes along and reminds them that they matter.

No News Yet

No news yet on Froggy's EEG. I guess we'll have to wait til Monday. But as soon as we find out, I'll post it!

The EEG

Checking blood pressure. The EEG lady is getting her computer set up behind Froggy.

We just got back from the EEG. It was a long day, but fairly painless. Froggy is so used to doctors, as long as there are no needles around, she's cool.

The anesthesiologist was surprised that we had not kept Froggy up all night. I must have looked at him like, "are you kidding me, keep a toddler up all night?" Because she was fighting sleep, they had to give her the full dose of sedative. Falling asleep was tough, she kicked and screamed, bonked her noggin on the bed rail, and finally she just crashed. The EEG was only 30 minutes, and Froggy woke up just as they were taking the wires off.

The entire day at the hospital was only five hours, so not too bad. In fact a lot of her Pulmonary visits are that long. As usual, Froggy was a doll and made the day fun. She's napping now, and I think I'll join her.

Too Fun

We had a great day with "Hummingbird" and her mama at the park! After a stressful week, this was just what we needed. Keep those prayers, and good thoughts coming. Our EEG is tomorrow and it will be a long, long day! Think "healthy, normal brain waves!"

Speaking of Sweet Dreams

Poem: "Endymion (extract)" by John Keats. Public Domain

Endymion (extract)

A thing of beauty is a joy for ever:
Its loveliness increases, it will never
Pass into nothingness; but still will keep
A bower quiet for us, and a sleep
Full of sweet dreams, and health, and quiet breathing.
Therefore, on every morrow, are we wreathing
A flowery band to bind us to the earth,
Spite of despondence, of the inhuman dearth
Of noble natures, of the gloomy days,
Of all the unhealthy and o'er—darkened ways
Made of our searching; yes, in spite of all
Some shape of beauty moves away the pall
From our dark spirits.

Froggy and Friends

Life goes on. As stressful as this is, we aren't sitting at home. Froggy needs sunshine and her friends. The first two pics are of Froggy and her boyfriend "The Bub" at his daddy's art show. And of course you all know her best girlfriend "Hummingbird".

We're all set for Froggy's EEG! It's scheduled for this Friday at 9am. We have to go an hour early to register, and they told us to prepare for an eight hour day. Yikes. After the EEG, we will wait in recovery for Froggy to fully wake from the sedative. And I believe (but could be wrong) that the EEG is about 2 hours.

Froggy hasn't had a full blown seizure in two days, so we're very happy. Yesterday around bedtime, she had the eye deviation a little, but no stiffness or shaking. Her sleeping pattern has been crazy though. Last night she fell asleep around 8pm (normal) but woke up at 10pm and was awake til 1am (soooooo not normal or fun). Froggydadda was wonderful and took her for a late night stroll, and tried to entertain her, but alas she kept yelling "MAAAAMMMMA!" So we were all awake! It was like she had consumed four espressos before going to bed. I'm not sure if she's afraid of going to bed because that's when she has the seizures, or if they are keeping her awake. She says, "eyes" a lot. So maybe her eyes are hurting, or maybe she can't control them, and that bothers her. It's so difficult to say.

Her pediatrician called today and said that all of her vitamin levels came back normal, although her zinc was a 'low normal.' So we'll discuss this with her Pulmonologist. Her wonderful, fantastic, amazing Pediatrician was very comforting and said that seizures are relatively common in kids, and the fact that they are very mild is a GOOD SIGN. Yay, it's good to hear something positive.

I must say I have not been handling this well. I am just so angry. On top of all of this, four of our pharmacies (ask our insurance company why we have so many freaking pharmacies), all four screwed up Froggy's meds. And our insurance company decided that all of a sudden they needed a 'prior authorization' for one of her more expensive medications. Gee I wonder why?That little ploy stalled her meds being delivered by a week, so she missed four doses. Another pharmacy sent her acid blocker out on Friday (even though I requested it on Tuesday), so the refrigerated medication sat on a hot truck over the weekend. It showed up in a large box with a tiny ice pack (that was of course warm). When I asked the pharmacist how they could do this, he said, "it was packed in ice." At this point Froggymama told the pharmacist that he was obviously not going to take responsibility for this, to which he agreed, and that was that. And then our nebulizer stopped working. I lost it. On top of all the 'on top of stuff' - trying to schedule an EEG and an MRI with the approval of an insurance company is like asking a grizzly bear to please part with his dinner.

Today was better. No nap, but it's 7:30 and she just went to bed. Hopefully tonight will be seizure free and full of sweet, sweet dreams.

Neurology Appointment

We just got back from our appointment with the neurologist. Froggy LOVED her. She kept walking up to her and saying, "doctor, doctor, doctor." The doc was charmed of course.

So here's what we know. The doc said she's pretty sure they're seizures. And we don't think it's related to Cystic Fibrosis. Sometimes a severe pulmonary problem (ya know, like a lung transplant, or major lack of oxygen to the brain) can cause seizures, but that's not Froggy. Nope, we're just sooooo lucky, that little Froggy has CF and epilepsy! Woo hoo. You'll have to excuse my sarcasm. Froggydadda and I are going on no sleep and super stress, so it's a wonder I'm making any sense at all.

The doc wants to schedule an EEG and an MRI as soon as possible. But getting a prior authorization through our lovely insurance company could take a week or two. Hopefully we'll get the EEG next week. She'll have to be sedated for the EEG, but the MRI requires a general antisthetic - which really scares me. She's so little. But we need to find out what is actually causing the seizures, (epilepsy is just a generic term for anyone who has had over 3 seizures). Because the seizures are affecting her right side (eyes and arms), it could be something with the temporal lobe. The doc said they also need the MRI to rule out developmental cortical dsyplasia (which involves the outer rim of the brain,) where sometimes there is abnormal growth. I guess this accounts for about 20% of epileptic seizures.

The good news is that the seizures are very short and are not causing damage to her little brain. The doc said that 50% of the time, kids outgrow seizures. And the meds for controlling them are excellent.

The big thing obviously is ruling out growths/tumors or a malformation of her cortical development. The doc doesn't see any signs of behavior or congnitive development, so that's a good sign.

Now, we wait, we call and make appointments, we deal with our evil insurance company. The next couple weeks won't be fun, but hopefully we'll get some answers. In the mean time, this sassy girl will continue showing us how she is absolutely worth every moment. Please keep Froggy in your thoughts and prayers.

Mini Update

We have an appointment this morning with a neurologist at 10:30am. Please send good thoughts our way.

Update on Froggy

I just spoke with the neurologist, because Froggy was having some more signs of a seizure. Her arm stuck out and she looked confused like she didn't know why her arm was sticking out. She's napping now, and while sleeping, her shoulder and arm jerks every minute or so.

I called her doc, who told us to page the neurologist to see if we should go to the ER. The neurologist said that it does sound like a seizure, but she doubts it is related to the fall from last week. She said that because the seizures are relatively short, that's a good sign. And we probably don't need to take her to the ER unless the seizures last more than a few minutes. If that happens, we'll call an ambulance.

Right now, I'm just pissed off and worried. This kid doesn't need anything more to deal with in life. Did you ever see that show on TLC about a woman who has seventeen kids? They are all healthy -not one with any problems. No autism, genetic disorders, learning disabilities, all bright, good looking kids. Not that I would wish anything on anyone else, but it does feel unfair. I don't believe in karma, or punishments from God, or the sins of the father, or anything. But every once in a while I think, "what else?" How much do you think we can really handle?

The good news is that Froggy is acting fine, she's her happy, funny self. And for that I'm thankful.

Say a Little Prayer for Her

If everyone out there could say a little prayer for Froggy today, that would be wonderful.

On Wednesday, she had what looked like four little seizures. Her eyes deviated to the right, and rolled upwards. It was around naptime and then bedtime, and I wasn't sure what I was seeing. We called our pediatrician and saw her yesterday. She said she wasn't sure. Froggy bumped her head last week, but it was so long ago and she never showed any signs of a concussion. They sent us to another hospital, where they took blood, checking her glucose, electrolytes, vitamin levels, liver, kidney, the whole nine yards. Most of the blood work came back, and it's all normal.

Last night, Froggy was restless. I put her in our bed and when I came in, she woke up, clenched her body tight, her arms shook and again her eyes went upwards. It lasted only a couple seconds, but I was really freaked out. We called our pediatrician to see if we should go to the E.R. She said to watch her through the night and we'd call a neurologist in the morning. And if she had another episode, to go to the E.R.

Today Froggy has been her normal self. She played with her best friend, and Daddy took her to the park while I called everyone in the entire world who has anything to do with medicine. It was a long, long, day. She didn't nap, and it's 9:30 and she's still awake. She fell asleep briefly on Froggydadda's chest, and that messed up bedtime. While rocking her a few minutes ago, her eyes deviated again, for a nano-second. I don't know what to do.

I'm too tired and emotionally drained to make sense of anything right now. Part of me wants to spend the 8 hours waiting to see an ER doc at Children's Hospital, but the other part of me is terrified Froggy will catch something worse from the sick kids in the waiting room. We have an appt. on Wednesday to see a neurologist, which in LA is not a bad wait. The neurologists at Children's Hospital have a six month waiting list.

On top of everything, two of Froggy's pharmacies screwed up her order and the meds that were supposed to be delivered today aren't coming. I really let one of the pharmacists have it. Don't mess with this Froggymama today.

If everyone would just concentrate on Froggy's little brain being healthy and normal, I would so appreciate it. I believe in the power of prayer and positive thought and this kid could use some today. Thank you.

This kid is amazing. Where did she get the girlie gene? She found my dusty heals, yes they are actually dusty, and then went looking for accessories. Froggy is all about shoes and bags. I hate to break it to her, but mommy is not a fashion diva, although I think at 22 months, she's already aware of this. Everything I own is vintage or from Target.