Saturday, January 24, 2009

Finally, some GOOD news!

Where do I begin?

Let's start with the good news for once! Froggy has been officially diagnosed as having Childhood Absence Epilepsy. Why is this good news you ask? Why would any parent be thrilled with a diagnosis of Epilepsy? Because for the last year and a half, we have been treating her seizures with the wrong medication, which is why it wasn't working. Duh.

Froggy's first EEG showed a spike in her frontal lobe and only one spike, which suggested that her seizures were focal (meaning the seizure is coming from only one part of the brain). So her neurologist medicated her with focal seizure meds. But having Froggy do the EEG for more than 48 hours, our new team of neurologists were able to determine that her seizures are generalized (all over the place) and that they are consistent with Childhood Absence Epilepsy.

This is great news because the new meds will most likely completely control her seizures, and she will probably, most definitely, hopefully, absolutely OUTGROW these seizures. Thus the name, 'childhood' epilepsy. Hooray! Woo Hoooooooo! Now we just need the cure for Cystic Fibrosis and we're home free. (no pun intended)

Now for the die-hard Froggy lovers. Here's the extended version of the last 60 hours....

When determining an appointment for the EEG, the lovely scheduling woman told us we needed to check in at 11pm. I kept repeating the PM part, because it was so late, even asking questions like, "Should we keep up our daughter until then?" To which she replied, "Only if you think it will induce a seizure." But later when she left a message on our machine with a casual, "See you at 11am," I thought, "Oh, she just misspoke." It's an overnight EEG, it's gotta be 11pm, right?

But at 10:45am, while in the shower, I kept replaying our conversations in my head, and it hit me that she had always meant 11am. When she said, "Pack dvd's and toys, crayons and coloring books," it was so obvious! We would be there all day and night!. I hopped out of the shower and screamed, "I think she meant AM, not PM!!! Hurry, we gotta pack!"

FD is a slow moving guy, when not on his bike. He doesn't get worked up over schedules, appointments, fires or earthquakes. So while I'm freaking out, throwing our entire apartment in a bag, he's casually dressing the Frog and rolling his eyes at my total lack of grace. "If we're not there by 12pm, they'll reschedule us, and who knows when that will be?" I yell, like a maniac, throwing books, dinosaurs, horses and dvd's into a bag, sweating profusely and ordering my family around like a drill Sargent.

"We'll get there in time," FD non-challantly, and might I add annoyingly replied.

Sometimes we're entitled to a good freakout, a good nervous breakdown, a good CRAZY MAMA PACKING THE ENTIRE HOUSE moment, when your kiddo is late for their EEG and it's your fault because the stupid scheduling lady doesn't know day from night, and now if you don't get checked into the hospital, it will be weeks before they are able to reschedule and the new neurologist (who is pretty stinkin' cute) will think you're a horrible mother who isn't capable of distinguishing am from pm, let alone taking care of a toddler with special needs. Soooo.... we finally get out the door.

I drive like a maniac to the UCLA campus, we check in and they tell us to wait in the surgery recovery waiting room. For SIX HOURS we wait. By now Froggy has missed her nap, her lunch, and is losing her sanity. Her wonderful Daddy has taken her for a million walks outside (where she sat in a puddle two times, thus soaking both pairs of pants I packed) and is sporting a total white-trash attire of diaper and peanut butter stained t-shirt and face. There is an incredibly empathetic woman who watches Froggy sobbing and screaming and says to me with those kind mama eyes, "I'm sorry." I wanted to hug her. Thank God for those moms who relate, rather than judge.

Finally the receptionist said, "The room we had for you went to an ER patient." It will be at least another hour. And instead of a private room, you'll be sharing with another patient." Now this part I'm proud of. I kept my cool. I didn't freak out and say, "Screw the ER patient, my toddler is melting down and I'm melting down and for the love of God, do you have a room for us???" I simply said, "Okay," and snuggled my screaming girl.

An hour later, a kind Neurology tech met us and actually carried our bags upstairs to prep Froggy for the EEG. His name was Conrad, and I love him. At this point I was losing my cool and said, "My daughter has CF and she has to have room with a patient without any respiratory illnesses." He said he would check, and get this, he actually did!

For the next hour, Conrad and Andrea put 23 electrodes on Froggy's scalp with glue and metal, gauze, more glue, and finally a cap. Froggy was an angel, giggling and entertaining the staff. They were enamored and said, "She's the perfect patient." I couldn't have been more proud of our girl. At one point I actually felt sad at how used to this stuff she is. A normal kid would be freaking out, but Froggy knows the routine of "poke and prod."

Our room was still not ready, so we sat in yet another waiting room for an hour until our nurse came to take us to our room. When we finally made it to our room, there was no bed, only a crib. Froggy hasn't slept in a crib in years. I put in the orders for an actual bed, so three hours later, we received one. Our tv was broken, there was no remote, our portable dvd player wasn't working, and we were all a little freakin' tired.

Froggy was hooked up to a computer (reading her EEG) and video camera recording her movements for the night. Finally, by around 10pm, the nurses brought us an actual bed, and our dvd player started working again. All was right with the world.

Our doctors told us to withhold Froggy's seizure meds, so they could register a seizure on the EEG. The excitement of the day, and the decrease in her meds, kept the Frog awake til 11pm (without a nap) and she screamed for a good hour "TAKE ME HOME, I WANT TO GO HOME, GET THIS HAT OFF OF ME!!!!" Our poor roommates were held captive while Froggy realized that we were there for the night.

The first night she slept four hours. Which of course meant, I slept four hours, her poor roommate slept four hours, and the coffee could not get there early enough.

I have to say that pediatric nurses are the most WONDERFUL people in the world. They should be commemorated, there should be an Oscar party, a Nobel prize winning inauguration for their patience and understanding, their kindness and heart. I can't tell you the times we heard, "If there's anything you need, just ask." Even when I pathetically asked for a coffee, they laughed and asked if I needed cream or sugar. Wow! And they were wonderful with Froggy. She was actually showing off for them, doing tricks and somersaults, trying to win them over. And they humored her every whim.

For the next two days, we watched a lot of television, painted with watercolors, and got to know our neighbors. Our roomy was a four year old named Mia who had Leukemia. This was her second bout, and she had eight more months of chemo to go. She was almost bald and had that steroid puffy look that we've all seen on St. Jude commercials, where you bawl and think how completely spoiled we are all with our 'usual problems.' Everyday she was anesthetized to receive chemo, and both her lovely parents and nanny and extended family were there to help her through this part of her life, the part where years from now she will emerge this incredible person who has survived Leukemia twice. Froggy of course loved her and everytime she was given a shot or drug, she wanted to check on Mia to see if "she was okay."

There was one point where Froggy, with her turban head, crept into the other side of the room and I saw these two kids who just shouldn't be in a hospital room. It was surreal, my baby's head wrapped, wires attaching her to a huge machine and camera, and Mia, with little sprouts of hair emerging from her head --these two kiddos at such a young age who are genuinely curious and concerned for one another. There were moments where I held back from spontaneous sobs, and had to concentrate on the fact that this was not permanent, in 24 hours, Froggy would be at the park swinging and sliding, and twirling on monkey bars. And in time, this other kiddo would have a full head of hair and hardly remember what chemo felt like.

After our first night, the team of doctors stopped by and relayed that they did not capture anything on the EEG, but that her brain waves were a little slow. At age three, she should be registering eight, and she's only registering a six. They said that because she's developing normally, it didn't mean anything significant. Hmmm.

At this point the doctor said he doubted she was even having real seizures, because she had been off her meds for a while, and wasn't having any activity. And I was starting to feel like a character in a Lifetime movie who has Munchhausen Syndrome - making up illnesses for their kid in order to get attention. I thought maybe the camera was actually to record if her crazy mother was slipping mickies into her milk? Had we imagined the last year and a half?

Our neurologist said, "Sometimes kids just have weird eye movements, especially while going to sleep, and maybe the twitching is just 'normal' nighttime twitching." I wanted to scream, "This is not normal!!!, I'm not an idiot, I've been a nanny, a babysitter, and now a mommy for three years, and I know normal!" But deciding not to alienate our doctors, or assure them that I am that crazy mom from a Lifetime movie, we agreed that maybe another night without meds would induce a seizure.

Having promised Froggy we would leave the next day, I had to eat humble pie and headed straight to the gift shop for some 'mommy lied to you gifts'. It worked.

Our next night was uneventful, the little stinker didn't have a single eye deviation. For the last week and a half, every time she fell asleep, her eyes would roll up in her head, but under surveillance, with thousands of dollars of equipment and a team of some of the best neurologists in the world watching, nothin'.

The next morning, our Neurologist came in and said again, he didn't notice anything out of the ordinary on the EEG. In fact her brain waves were actually speeding up and now registering a seven! At this point, I started to believe we really were crazy or something in our house was causing her to have seizures. Maybe a mold, a fungus, the lighting, our pets, or non-filtered air, the non-organic apple juice, aliens.

While packing up to go home, about an hour later, our Neurologist returned. "Change of plans," he said. Our tech reviewed the EEG more thoroughly and did in fact note a seizure. Gee thank God for techs who get paid a tenth of what the Neurologists make. He showed us a piece of paper with our baby's brain waves with a few abnormal valleys and mountains. The doc explained that one of the meds (Trileptal) could have been making her seizures worse. And a new medication (Lamictal) would hopefully be the end to her eye deviations and nightly twitchings. He suggested a couple other medications, but with Froggy's CF, the side-effects to her gi-system were not an option.

As we left the hospital with a new diagnosis, a new medication, and some answers, I thought, "We can do this." Hopefully in a year, Froggy will outgrow these seizures and she will only have Cystic Fibrosis. I never thought I would say that, "only CF."

When Froggy first started having seizures it felt like Life had slapped us on the back of the head and said, "Nanny nanny boo boo! Two incurable diseases for you!" Not-fair didn't even begin to express how hopeless and jilted we felt. Why would our girl be forced to endure two diseases, when some people have five kids without a single issue. Why would our sweet child have to explain to her friends and later teachers that she has to take meds before she eats, and can't be in preschool, and that if she has a seizure, this is what you do, and have to miss out on birthday parties because there are too many kids with runny noses, and we can never plan in advance because she may be sick, or her seizures maybe uncontrolled? Why, why, why?

More than ever I feel like now we can handle Cystic Fibrosis. One day at a time, one disease at a time. Froggy will outgrow these seizures, and soon the treatments for CF will be so advanced that her lungs will remain clear, her life will be long, and we will have been given the gift of knowing how important her health is. Like coming out of the dark, the world is that much brighter.

Thank you for your prayers and calls, emails and love.

Wednesday, January 21, 2009

EEG Scheduled

Please send us good thoughts tomorrow night.

Froggy is scheduled for an all-night EEG at UCLA. We check in at 11pm and will be there til around noon the next day. They'll hook up 23 electrodes to her head with glue and put a little cap over it. Pray to the gods of 'cooperating toddlers' that this goes well. I asked if they'd give our kiddo a sedative first and the nice woman on the other end of the phone sounded a little frightened. She said the nurses are used to dealing with energetic three year olds, but I wanted to say, "Lady, you ain't seen nothing yet, just wait for FROGGY POWER!!!"

My second question was if they had a sedative for the mommies, or atleast vodka tonics?

I want to prepare Froggy for this, but I'm not sure how to get her excited about being in the hospital all night. Any suggestions?

Monday, January 19, 2009

Slumdog Millionaire

The Grandparents babysat (woo hoooooo!) so FD and I could venture out on a date. We saw the movie Slumdog Millionaire. It was excellent. We also had time for dinner and a beer. (double wooo hoooo)

It's nice to be human again, to get out and actually have a conversation that isn't about taking out the garbage, or picking up meds at the pharmacy. FD and I go days without speaking about anything other than chores and duties, responsibilities and parenting issues. "Did you get the new prescription, did you schedule your classes, did you pay the electric bill, did the dog go out tonight, is the laundry done, has Froggy had her seizure meds, has she pooped today, had her Prevacid, did the doctor call, did you hear about the accident on the 405, take out the recycling please, give Froggy a bath, the dishes still need to be done, we're out of catfood and Froggy's supplement, I need an oil change, turn out the lights, get some sleep, tomorrow is a big day."

I think FD and I enjoy our dates more than anyone ever in the history of coupledom. And coming home to our sweet girl, dressed in a diaper and curls is the best end to a wonderful evening.

First Haircut, as told by Froggy, and photographed by Froggydadda

I'm warning you, cut my hair and I'll find a new Mommy!
Please Mom, put the scissors down!

I know you said it's just my bangs, but this is not 1984 mom. Bangs went out with the New Kids on the Block!

I thought you loved me, I really did.

Do what you like. I give up.
I'm sure you know what's best.

Nope, changed my mind. Those scissors are scary, scary, I tell you!

You cut my ear, I call a lawyer.

Don't show me the lock of hair! The damage is done!

Inauguration Day Tomorrow!

Woooooo Hooooooo!

I have an air freshener hanging from my rear view mirror with George W. Bush's head on it. And then it says something slightly offensive that I won't quote. Over breakfast this was a conversation FD and I had.

FM: Tomorrow's the inauguration. I'll have to cut down the Bush head.
FD: Yep. (a man of many words)
FM: It's an end of an era.
FD: More like the end of an error.

HA! That was a good one.

Saturday, January 17, 2009


In a tiny boat I float
down the Kickapoo

looking up
through a rock wall telescope
to god.

in the cavern,
the hungry belly,
a sidewalk crack
of earth

i float

putting all my trust
in the current.

by Froggymama

Whenever I'm stressed out, I think about floating down a river, staring up through the rock walls to the sky, feeling the boat scrape branches and shallow beach, never rowing, or caring about getting stuck or fretting about tipping over... just letting go.

I've always been a person who worried...about everything. One night when I was a kid, and couldn't turn off my brain, I called for my dad. He is a night-owl and it was a comfort to me that I had an ally in sleeplessness, someone who would hear if my brain exploded, if the world imploded, if the moon fell out of the sky. I told him that I was thinking too much to sleep and he said, "Just imagine yourself floating down the river in a boat." And since then, that is where I go. To the river. And it always helps.

Wednesday, January 14, 2009

Seizure Update and Froggyisms

We increased one of Froggy's seizure meds. So far so good. I've noticed her eyes deviating a little, but not today. So knock on wood, cross fingers, pray, do a dance that she keeps improving.

Our new Neurologist suggests we do an all-night EEG at the Pediatric Sleep Clinic at UCLA. He thinks they'll be able to locate from what part of the brain the seizures are coming from, and be better able to medicate. He also suggested that we do another MRI in the future. And he thinks the other seizure meds aren't doing the trick, so eventually we'll add a third one (Lamictal), while gradually tapering off the others.

I do notice that every time we increase her seizure meds, Froggy becomes irritable and more aggressive. Yesterday we had a tough time and it's really tough to discipline when you aren't sure if it's typical toddler behavior or a side-affect. Today she was moody, but cheered up for ballet class and a visit from Grandpa J.

Ballet pictures to come.

A Froggyism or two:

Froggy: Mommy, I need to wash my mouth out.
FM: Why?
Froggy: Cause I bit my tongue.

Froggy is really interested in the contrast between doing something by accident or on purpose. And she's very honest about it. When she's doing something naughty, she'll look up at me and say, "I did it on purpose...not accident."

We received a photo calendar from Aunt H. with photos of Froggy's twin baby cousins. Froggy kept commenting on how cute the babies were. I was trying to work at my computer and said, "Let's be quiet so Mommy can think." To which she replied, "I'm going to think too." She scratched her head like a cartoon character, furrowed her brow and really thought HARD." After a few moments, she said, "I'm thinking about my cute cousins."

Froggy is quick to correct you. For example:

FM: Froggy, put on your hat.

Froggy: It's a hood Mommy.


FM: Do you want to take your bike to the park?
Froggy: It's a tricycle.

And she's quick to finish my thoughts. If I'm stuck mid-sentence and can't remember what I was going to say, she'll finish it. Like..

FM: I can't find my....
Froggy: Cell phone? Keys? Purse?

There are so many other adorable things she says everyday that I fail to write down. I should...

FM: Carry a...
Froggy: Pen around your neck?


Tuesday, January 13, 2009

I just finished this massive book, The Story of Edgar Sawtelle, by David Wroblewski.

It was chosen by my book club and was a wonderful read. If you're in the mood for a Shakespearean drama, a Homeric epic quest, a good, juicy, rainy day read, I highly recommend it.

Let me know if you'd like to borrow from the Froggymama Library.

Monday, January 12, 2009

This is Froggy's new kitchen. It took me 9 hours to assemble. I'm not kidding. Nine hours of my life I will never get back. And don't hate me Mom, but after working on it for a couple hours, I overheard Froggy in the hallway with her toddler tools saying, "Ugh, dammit!"

Let's just say this kitchen is earthquake, hurricane, tornado and toddler proof. And with some screws missing from the box, I had to make a trip to the hardware store where I had to ask questions like, "do you have a philips flat head screw in 5/16ths of an inch?" The screws were so tiny they said I had to go to a jewelers. But fortunately the man behind the counter had a secret stash of tiny screws. It may have been code for something perverse, but I didn't care, the kitchen had to be built! And ta da, here it is! The things you go through for your child.

Friday, January 09, 2009

A Big Week

It's me Debbie Downer Again!

Monday we had our court date for Froggy's Disability case. Usually the judge decides right there, but nope. She wants more letters from our docs, more medical records, and in general more work from us. Grrr.

Tuesday I started seeing a therapist. That afternoon found out my insurance won't pay a dime of it, unless I've been diagnosed with an anxiety disorder or depression (which could be done), but then the next insurance company would be able to deny any coverage because it would be a pre-existing condition, plus my insurer would raise my rates. Fortunately, the therapist is willing to cut her fees a lot, and hopefully by the time FD gets a job in the hospitals, we'll have better health coverage.

Wednesday we enjoyed a hike with Hummingbird, her Mama and Grandpa J, and then I had book club that night, and Grandma W. babysat. So Wednesday was good.

Thursday we had our appointment at UCLA with a Pediatric Neurologist. He seems great, and the program there is supposedly one of the best. I like our other Neurologist too, so I guess we'll have to make a decision about who will treat her from now on.

Which brings us to today! Friday - I asked for a raise this morning, and signs are good it's gonna happen. Then while rocking Froggy to sleep, her eyes rolled up in her head, and her shoulder twitched.

Her seizures have been under control for the last two months, so this sucks, really, truly sucks. I'll be on the phone with her doctors all day today. I'm discouraged, but just had a gut feeling they were coming back. Her sleep schedule has been out of whack for the last couple weeks, which seems to be an indicator they'll return.

Sorry to be Debbie Downer. The good news is that we have great doctors, Froggy is in wonderful spirits and has been a cooperative and delightful toddler lately (woo hoo!), and it's almost the weekend.

Tuesday, January 06, 2009

What a poem.

by Wendell Berry

I would not have been a poet
except that I have been in love
alive in this mortal world,
or an essayist except that I
have been bewildered and afraid,
or a storyteller had I not heard
stories passing to me through the air,
or a writer at all except
I have been wakeful at night
and words have come to me
out of their deep caves
needing to be remembered.
But on the days I am lucky
or blessed, I am silent.
I go into the one body
that two make in making marriage
that for all our trying, all
our deaf-and-dumb of speech,
has no tongue. Or I give myself
to gravity, light, and air
and am carried back
to solitary work in fields
and woods, where my hands
rest upon a world unnamed,
complete, unanswerable, and final
as our daily bread and meat.
The way of love leads all ways
to life beyond words, silent
and secret. To serve that triumph
I have done all the rest.

"VII" from the poem "1994" by Wendell Berry, from A Timbered Choir: The Sabbath Poems 1979–1997. © Counterpoint, 1998.

Thursday, January 01, 2009

A few days ago, we strolled along the Marina del Rey pier and were fortunate to spy someone catching a crab in his net. Froggy was enthralled and suggested the fisherman return the crab to the sea.

I love that Froggy has no fear and casually holds a crab, pets fish, picks up snails off the sidewalk, chases seagulls and has never in her life been grossed out by anything. It poses the question as to if this tomboyishness is taught or inherited? Who knows? I'm just thankful she will be an adventurer!

Get ready Papa Gus, I think someone's ready to go fishing!!!