Thursday, October 25, 2007
Poor FD was left behind, to not only deal with California fires, but midterms as well. I'm sure he'll enjoy a quiet house and the lovely absence of his wife yelling, "Take out the recycling!" and "Scoop the kitty poop!" That reminds me, I better call him. On the plane Froggy said, "Dadda? Dadda? Where's Dadda? Where'd he go?" We miss you Dadda! Whether or not you scoop the kitty poop.
We surprised Papa Gus and tried to have Froggy call his name when we got to my parent's house, but she would only say, "Helen." Helen is their cat. The girl loves animals. Papa Gus was still elated.
Today was an adjustment to the 2 hour time change, and the sleep deprivation from our first night. But we're finally settling in. I'll post pics soon. But wanted everyone to know we are safe and breathing free!
Tuesday, October 23, 2007
(Photos taken by Aunt Jo and Uncle D's family in Stevenson Ranch)
Sissy Snuggiekins and her family were told to evacuate their home. They remained in their house, and the fire is no longer an imminent threat, atleast for their street. There are fires in Malibu, Orange County, all of San Diego County, Lake Arrowhead, and Santa Clarita. The air quality is horrible, and the American Lung Association has told everyone to stay indoors. Poor Froggy only left the house for two minutes, while we walked to her best friend's house. They ran around the house, but Froggy kept yelling "SIDE, SIDE" - that's code for outside, by the way.
We were supposed to keep all windows and doors closed, but it was a scorcher today, and we were frying. I also can't imagine how, without air conditioning or purifiers, the air inside our apartment is any safer, than the air outside.
The sky is stuck in a continuous sunset. Over one million people in CA were told to evacuate their homes, and six people have died. Thankfully many of the fires are almost contained. But with the heat and wind, there are bound to be more.
Saturday, October 20, 2007
Bathtime...where she splashed the majority of tub water overboard.
Dinner...where she dumped an entire plate of rice and lentils on our dog Buddy, then managed to rub the rest in her hair. This was post bath, so guess who went to bed with food in her hair? I thought I was being smart by removing her pajama top for dinner, but it just encouraged her to finger paint her belly with spinach and potatoes.
While wetting a washcloth to clean up the green-bellied-lentil-headed monster, she pulled off her diaper and peed on the rug.
While getting paper towels to clean up the pee, she poured my glass of juice on the sofa.
While wiping up the juice on the sofa, she picked up the towel that was soaking pee, and ran around the house swinging it over her head.
Respiratory Treatment...didn't happen. I couldn't physically restrain her for more than three minutes. Storytime was a bust, and I had to sit on her to brush her teeth.
There was a point in the evening when I looked at her and said, "Froggy, just stop being naughty for one minute. Do you think you can do that?" To which she replied, "no, I don't sink so."
The little tadpole went to bed early, for my sanity mostly. As she was falling asleep in the rocking chair, I could smell the rice and lentils pasted to her head, and felt her body relax into mine, and all of a sudden, she didn't seem too terrible after all.
Friday, October 19, 2007
Right now, Froggy has five respiratory treatments! We do two in the morning, one in the afternoon and two at night. Altogether, Froggy is hooked up to a nebulizer about 3.5 hours a day.
This week I reached out to friends, begging for kids videos, to help entertain Froggy. Our lovely friends dropped off about 45 dvds! And tonight our DVD player broke. I just love the irony.
When Froggy refused her hour-long treatment, I pulled out some books. In the past, it has been difficult turning the pages and holding the nebulizer cup, but Froggy complied and held it on her own. We read about 10 books and the break from Barney and Teletubbies was great. If I can keep up the momentum of "Mommy doing funny voices," and if Froggy continues holding her own, maybe we can cut out tv altogether!
But I'll swing by Best Buy tomorrow, just in case.
Wednesday, October 17, 2007
Froggy's Grandma picked it up from the pharmacy downtown and brought it all the way to us tonight. So tomorrow, our anti-pseudomonas regime begins!
Thank you everyone for your kind words and support. And thank you Beverly for suggesting the CF study. I guess the first two months are covered by CCS, but after that, we may need to join a study to get the next six months supply.
I can't tell you how thrilled I am that it took only a few days, rather than weeks. Nothing is ever easy, so this feels a bit surreal. I think we should send flowers to our caseworker, or perhaps a case of wine, so that in the future she'll rubber stamp that APPROVAL with every new medication.
FD watched Froggy tonight, so I could catch up with my good friend "Gorgeous Hair". We went out for pasta, wine and bread (does it get any better than that?) and discussed the sad state of politics, which was far more uplifting than the sad state of our health care system. And somehow, with carbs and wine, I feel like we'll get through this. We'll eradicate pseudomonas and eventually CF. Someday!
Tuesday, October 16, 2007
We're in the process of getting a prior authorization, if that doesn't work, we'll send it to CCS, if that doesn't work, we'll send it to Medicare. If that doesn't work, guess who is selling a kidney?
Her oral med is $49, also not covered. But somehow I'm not freaking out about that one.
In the mean time Froggy has no meds. I'm sorry, what was the point of insurance? Who exactly are they insuring, other than themselves? I'm thinking about writing a screenplay about a mother who loses her mind, and holds the executives of a major health insurance company hostage until they agree to pay for her child's health care. A kind of "Falling Down" meets "Lorenzo's Oil" film. What do you think? It sounds like a Lifetime movie, doesn't it?
I'm off to make more calls. Say a prayer that someone at Blue Cross has warm blood running through their veins.
Monday, October 15, 2007
The good news is that with the inhaled antibiotics, as well as an oral, they can usually eradicate Pseudomonas. And the doc said that Froggy only cultured a small amount. So the little critters haven't completely set up shop.
The bad news is that we will add another 45 minute nebulizer treatment 2 times a day for the next two months. After those two months, we'll do the inhaled antibiotic every other month (2x's daily as well).
I'm bummed and I'm not sure how in the world we are going to do this. With treatments, nap, meals, and my job, it just seems impossible. But everything at first seems impossible. Then you get a routine and realize it's not so bad.
We also had an appointment with Froggy's neurologist today because her meds aren't controlling her seizures. She suggested we increase her dosage to the max, and if that doesn't work, we'll switch to a new med.
Fun, fun. To take a look at Froggy, you would NEVER know anything is physically askew. She's the most energetic and happy kid, and even with the myriad of treatments and meds, life is just plain normal to her. What a trooper.
Friday, October 12, 2007
the moment the lights come up on a theatre stage and you see for the first time the world you are about to enter
the last page
driving in the rain
pruny bath fingers
reading The Sun
finding a new song that I listen to over and over again, until I can never hear it again
making someone laugh so hard their eyes water
my husband's smile when he walks through the door
coffee brewing in the early morning
starry starry nights
Going to the movies, eating the entire bucket of buttery popcorn and drinking Sprite out of a cherry licorice straw.
the feeling of accomplishment
writing a poem that just flows out, where my brain isn't really present, and my fingers just write
the smell of Froggy's hair after a bath
laughing until my stomach hurts
dark chocolate and raspberries
the sound of leaves crunching under boots
oatmeal raisin cookies
when Froggy says, "ohhhh mama"
swimming - where the world becomes a slower and muffled version of itself
waking up an hour before the alarm goes off and enjoying that next hour of sleep more than the entire night
hearing live music
Law and Order marathons
being alone and realizing how wonderful it is to not truly be alone
staying up late with a friend having a conversation that is just too painful to end, over pie and coffee, and all of a sudden it's three am, and you still aren't really tired.
watching Froggy leap into her daddy's arms at the end of the day
getting lost in a song, dancing like a dork and not caring at all what anyone thinks
canooing and feeling totally at the will of the river
reading an article or watching a play and feeling completely humbled by someone's talent
waking up in a tent, where the air is so wet even the sleeping bag feels like it soaked in a cold bath
opening a letter from someone you love
watching the expression of pure joy on Froggy's face when she plays with her best friend Hummingbird, because I can relate to that wonderful first love you have as a child, where your best friend is and will be the best friend you've ever had.
Thursday, October 11, 2007
Why, you ask? Because while scrubbing the shower, FD called. I was annoyed that the phone was ringing, and I was up to my elbows in softscrub.
When he asked what I was doing and I gave him my bitchy list - sterilizing nebulizer equipment, scrubbing the bathroom, vacuuming the rugs, swiffering the floors, etc, etc. He said, "Thank you for all you do."
And just like that I felt appreciated. It's amazing how with that one kind acknowledgement, I turned from crabby overwhelmed mama to energetic, positive wife and mama. So call your spouse, or partner and tell them "thank you" for all they do.
Wednesday, October 10, 2007
Froggy's little lungs are perfect! The x-ray was blurry, because it's impossible to take a good pic of a moving toddler, but from what they could see, her lungs look great. They took a throat culture to check for pseudomonas, but we won't hear the results for another week. So say a prayer, do a dance, send positive thoughts, that Froggy's lungs are clear.
We had a little setback in weight. Froggy dropped to the 10th percentile (she was in the 25th last appt). The nutritionist was concerned because it's important for her lung health that she remain atleast in the 25th percentile. They ideally want CF kids to be in the 50th, but Froggy has her genes stacked against her for weight gain. FD is super skinny and tall, and I was small as a kid.
If Froggy isn't in the 25th percentile by January 2008, they want to give her a g-tube. I can't even let my mind go there yet. The idea of Froggy having a hole in her belly makes me sick. We're going to fatten this little tadpole up, so it won't even be an option.
The difficult part to accept is that even if Froggy did not have CF, she would still be a small fry. I'm 5'2", and was always petite. FD is 6'6" and barely 185lbs. How can we expect our baby to conquer genetics and pancreatic insufficiency? It just seems unrealistic to expect her to be in the 50th percentile. I don't want to fight what our doctors believe to be the best for her, but my heart tells me that after her toddler stage, she'll start gaining weight at a faster pace. Right now, she's stubborn, hates meal times and fights everything. Gaining weight will be a tough road, but if it means waking up three times a night for a milk bottle, we'll do it. Anything to gain those pounds before January. FD has started a regime he calls, "Operation Peanut Butter." With every meal and snack, Froggy will be required to eat atleast four spoonfuls of peanut butter. We'll also start her on a supplement once a day to help boost calories.
I know we will meet our goal by January, because we're determined. And I'm going to start the g-tube research now, so I can make an informed decision. But even with the discussion of the weight battle, and g-tubes, the important thing to remember is that her oxygen is 100%, her lungs are perfect, she's a healthy, tough, strong little Froggy. If anyone can beat genetics and pancreatic insufficiencies, it will be her. She's one of a kind.
Froggy calls my belly button, mommy's belly butt.
Yesterday, while Froggy was pretending to eat her lunch, she picked up the salt shaker and shook it over the dog, saying, "Salt the Buddy."
We have a book called "Peek a Who!" Froggy loves it and while playing peek-a-boo with herself had this conversation:
Froggy: (very deadpan)I'm not here.
Some new favorite sentences:
I don't think so.
Whatever you do, don't drop the baby! (this is a game I play with her, where I hold her and say, "whatever you do, DON'T (and this is where I swing her to the floor, swoop her up again and say) Drop the Baby!
(regarding shoes, clothes or puppies) It's soooo cute!
Buddy shush! Buddy beat it! (I won't tell you where she learned that last one)
(pointing at her diaper) There's poo poo in theeeerrre!
The other day at Target, we overheard a group of teenagers, and one of them said, "Ohhh f*ck it man!" About five minutes later, we were standing in the shampoo aisle next to an elderly woman, when Froggy decided it was time to try out her new phrase. She dropped the toothpaste she was holding and said, "Ohhhh, f*ck it man!" I turned about ten shades of red, forgot about the conditioner I desperately needed and ran to the checkout line. In the mean time, everytime she said, "f*ck," I said "pumpkin". For some reason it worked and she eventually started saying, "Oh, pumpkin man!" Whew.
Froggydaddy: Froggy, how old are you?
Froggy: I'm four.
Froggydaddy: No, you're two.
Froggy: I'm six.
Froggydaddy: No,you're two.
So with four fingers in the air, she says,
Froggy: I'm two. (a nice compromise)
Froggy has no concept of personal space yet. She'll walk right up to a toddler on the playground, stand one inch away and say, "Hi, hi, hi," until the other kid replies. Toddlers are totally comfortable with another little person standing an inch away and are usually delighted that she's so close. Anyone older than three is deeply, deeply offended and looks up at me like, "aren't you going to do something about her, geeshh!"
The first time I put Froggy in her bicycle seat, she looked up at me and said very seriously, "Go fast." The kid has never been on a bike in her life and was already anticipated an exciting ride. She is definitely her father's girl.
Monday, October 08, 2007
Saturday, October 06, 2007
Some Froggyisms for your pleasure:
As you know, Froggy is a dancing queen. She's such a dancing diva, that many times while doing her treatment, she has to take a very dramatic DANCE BREAK! Tonight we were watching "Angelina Ballerina" and she yelled through her nebulizer mask, "DANCE!" She jumped up onto her stage (the living room rug) and kicked Buddy out of the way and said, "sorry Buddy." Now usually I don't condone animal abuse, but it was a light kick and he was in her artistic space! Buddy looked at me like, "where is the love?"
FD had to work all day, so I took Froggy to the Santa Monica Pier. When we got to the top of the Ferris wheel overlooking the ocean she looked at me very seriously and said, "what are we doing?"
The other day Froggy was in the room while I dressed. I put on a skirt, and she said approvingly, "cute mommy, cute." She never says that when I put on sweats.
A week ago, I was in her bedroom sorting the diva's wardrobe, when I heard a gush of water. It took a moment to register that it was water, and I was trying to imagine how she could have climbed up to the sink in the kitchen. I ran in, and found Froggy standing in a pile of water, under the drinking water jug. She had completely opened the tap and was wading in it. I asked, "Froggy, what are you doing?" She said, "water," and splashed about. I threw towels on the floor and while wiping up the flood waters, she climbed up on my back and said, "Now I climb Mommy."
Whenever Froggy does anything that she thinks warrants a laugh, she says, "I soooo funny."
Tonight, after treatment, Froggy took her monkey "Bubba" and put him on her pillow, covered him up with a blanket, gave him a kiss and said, "Bubba so tired." I took that to mean it was bedtime.
Froggy blames everyone else for her flatulance. She'll toot and say, "Peeeuuuuu mama." Last night Grandma W. babysat. After she left, Froggy tooted and said, "peeeuuuw Grandma." Her timing needs some work.
Froggy's best friend lives down the street. For our walk yesterday, she was taking her sweet time. To speed things up, I said, "Where's Hummingbird? Do you think she's in her yard?" Froggy started running down the sidewalk and said, "Who loves "Hummingbird?" I do, I do!"
I'd like to say that Froggy has grown out of her 'eating dog food stage' but it just isn't so. She's just gotten smarter about getting away with it. I can always hear her reaching for the kibble (it must be a mommy six sense thing) and when I grab her hand, the baby magician sneaks the kibble into her other hand and into her mouth. I basically have to wrestle her to the ground to get it away. Most of the time it isn't worth it.
There are a million other froggyisms, like her scary lion growl, or elephant bralooooooo, but like the retelling of a joke, sometimes you just have to be there.
Friday, October 05, 2007
We had our reception at the zoo, which was fitting, because there were a lot of monkeys in attendance. It was a great day.
Tonight we had dinner at the Indian restaurant where we had our first date. And I think for the first time in months, we had a conversation that didn't involve diapers, meds, or bills. It was wonderful. I'd forgotten how much I enjoy my husband's company. The waiter was surprised we've been married five years (this is LA, ya know) and he said that we looked like newlyweds. Okay, okay, I'm sure he wanted a good tip, but still it was nice to hear. Because we go out so rarely, we are just thrilled to be in public without a box of cheerios and a diaper bag. I actually wore a dress, and FD opened the car door for me. Sometimes all I need to remember how great life can be is a mango lassi, vegetable korma, some fresh air, and FD making me laugh.
Thank you Aunt "N", Mom and Dad and Grandma W for treating us to dinner and babysitting the Froggy.
Thursday, October 04, 2007
Froggy is having seizures again, and on top of that, she's not eating. The second we put her in the booster seat, she says, "down." Food has suddenly become unimportant. And it's making this mama sick with worry.
Tonight, she was awake til 11pm, because of her eye deviations. I was finally able to rock her to sleep, but she twitched and her toes tightened, and her brow curled and it just breaks my heart to watch something else 'wrong' with our sweet girl.
I'm to the point where I'm just angry. I'm angry Froggy has CF, I'm angry she has seizures, I'm angry she isn't eating, I'm angry that I can't do anything about it. I'm powerless and angry that I'm powerless. I'm angry that this feels unbearable, and I'm angry that I'm not stronger.
I'm angry at God and at myself and at my husband, because none of us can make anything better. I'm angry that nobody can fix this, I'm angry that our little girl has CF and now seizures, and some kids are just perfectly healthy. I'm angry at those other kids. I'm angry that we are so far from my family. I'm angry that I'm feeling sorry for myself and I'm angry that I am the only one who is angry.
Most of the time I can focus on the positive aspects of our lives, the fact that Froggy is so wonderful and such a joyous person. Everyday, I laugh out loud at least 200 times because of something she does or says. Tonight, after treatment, I was trying to do her percussion, and she was running around me in circles screaming, 'Rosy mommy, rosy, mommy." I realized that she had taken the song "Ring around the Rosy" and modified it for her mommy.
I'm angry that at night, when she has finally settled down, I can't just find solace in her loveliness, because I'm still too angry about all of the things I cannot change.
I'm angry because other people have things worse, and other people have things better, and neither point makes me feel any different, because it doesn't change anything. It doesn't make me feel any less angry that there are people starving, or people driving Hummers. We're still where we are, and they are still where they are, and misery doesn't really love company after all.
I'm angry that Froggydaddy isn't angry, that at the end of the night when I'm losing my mind with exhaustion and worry and feel like our lives are falling apart, he says, "she's going to be fine." It sounds good, and you'd think it would make me feel better, give me some hope, but it really just makes me angry, because nobody knows. I'd like to be positive about everything, but it doesn't feel right anymore. I've been positive, I've believed that everything would be okay when she was diagnosed with CF. And as soon as we adjusted to CF, the seizures started. And there comes a point where you have to look at the situation and say, "it may not be okay." We were never promised anything.
I'm just angry. Tomorrow, I'll feel better. The sun will come up and Froggy will snuggle into my neck and say, "Mammmmaaaaa!" And all will be right with the world. It's just as the day wears on that I feel the weight of things. I wish I had the hope and positivity that FD has, that Froggy will be okay. And in my heart I believe that too. But right now, I'm too angry to be satisfied with hope.
Sometimes I just think, "okay, we're ready for the good news." That big check that eleviates our financial woes, the call from the doctor that they found a cure, a medication that stops Froggy's seizures. If only. I read somewhere that you'll never be happy if you keep asking, "if only". If only I had this, I'd be happy. Yet, every night I find myself asking the same question, "if only."
Wednesday, October 03, 2007
(Sissy took this picture, and the next one too!)
It was a tough job picking out pumpkins. I was pooped. What a fun day!