One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Tuesday, March 07, 2006

exploding heads

This post should really be about Annika, and how amazingly, awesomely well she's been doing. Her gait is still off a bit, but she's gaining speed and is now bending her knees nicely as she moves. Just a bit of a penguin waddle is left to remind us how far she's had to come. And it seems to me that she's always leaning back a bit, as if she needs to counterbalance her bulging tummy (not that the bulge is fat - far from it - I think maybe it's still residual swelling, and maybe some fluid still sloshing about in there). She's able to get up and down the ladder of her bunk bed by herself, and she took her Big Wheel out for a spin last week during the much lauded Spring Weather Preview. She's been doing so well, in fact, that yesterday she managed to be downright difficult. It takes a lot of energy to be such a huge pain in the ass, you know. So I really should write a lovely tongue-in-cheek entry about the joys of misbehaving children. About how much independence and strength is exhibited when you tell your child, "No, don't put those galoshes on your feet. They are covered with mud and guck, and they stink." And your child responds by smiling sweetly and shoving both hands into the boots and running (waddling) around the house waving them in the air with the celebratory air of a baton-twirler leading off a parade. And then when you, it's true, yell, "Annika! What did I just tell you?" she responds with a totally unbelievable air of innocence, "What? You said, 'Don't put them on your feet'!" But really, even though scenes like that repeated 36 or so times that day (most of them playing out in far more banal fashion), Annika's behavior (and Frankie's enthusiastic joining of the whole "Hop on Pop", I guess "Glom on Mom," melee) wasn't what made my head explode at the head of the day. It was the conversation Jörg and I had over the latest in insurance news that evening. Because the day was so long, and because the news was so hard to comprehend, we discussed it over dinner. Usually we reserve dinner conversation for lighter topics, like Annika's explanation of why her heart's fondest wish lately is to be magically transformed into a rubber doll, or Frankie's deeply held belief that my age is actually 15 ("Well, I used to be 15, but now I am 35." "No! You 15 years old!" said with all the disdain a 2-year-old can muster, which is an awful lot of disdain.) As I began to ask questions in rising disbelief, Annika jumped in: "What are you guys talking about?" asked, of course, with all the disdain a 5-year-old can muster, which would probably rival that of Queen Elizabeth, asked her opinion of Britney Spears' nipple slip after the Grammys. "Just insurance stuff, sweetie." "Well, can we not talk about insurance? Can we talk about something else? Like...princesses?" So we saved the rest of the conversation for after bedtime. Really, we have no idea what is going on, but it's clear that something is not quite right. And I don't mean the "not quite right" of denying coverage to a lovely, spirited 5-year-old (because that's, after all, what insurance caps are all about and I see that they have a purpose, from a business perspective, even if I think the whole damn system needs to be overhauled). I mean that something is really not right. The word on the street (the street of highly paid medical administrators) is that Children's is offering to re-run our bills at a higher discount than our insurance company has negotiated in order to stretch our coverage through 2006, or at least to have enough money to allow her to be listed for transplant. The only catch is that Children's wants to see, in writing, the part of our insurance contract that says that the annual maximum benefit is determined by the date bills are received, rather than by date of service (remember, this is what has gotten us into this whole surprising mess in the first place - many of the bills from November and December were evidently not received until January and therefore went into figuring our 2006 benefit usage). In other words, they want some contractual proof that denying Annika coverage is legitimate, before they go giving all sorts of discounts that our insurance company hasn't actually negotiated. It seems a reasonable enough request (and it's a request that Jörg himself made at the advice of the helpful lawyer/reader, Genevieve). But the request is being met with outright refusal. That's right - total stonewall. Which makes absolutely no sense, unless the contract does not, in fact, say any such thing. But here is where it gets very complicated. The way insurance is run in this country is already incredibly complicated, but the story of IWU's health plan reads like something Rube Goldberg would have created, were he inspired by the world of finance and business management. That's not to say that IWU's health care plan doesn't work -- it does, and provides better coverage in the least expensive fashion possible.'s complicated. The short version is that there are at least two different contracts in play here. One of the contracts is between Illinois Wesleyan and OSF health plans, our regular insurance provider. But OSF health plans is not passing out their own money when a claim is made; they are only disbursing the funds pooled by a group of small universities. But for any claims greater than $10,000 (i.e. perhaps 1 or 2 days in the PICU at Children's Memorial Hospital. Yup, that would be us.), the claim is passed to a reinsurer, which has its own contract with the trust, the group of people hired by the coalition of universities to oversee their healthcare fund. That's the short story, and I'm not even going to attempt the long one because my head is still a little bit exploded. But the fact is that, somewhere in this 72-layer-cake of contractual obligations, someone (we're guessing, anyway) has forgotten to actually specify how the annual maximum on benefits is figured. But it's not like we can just bounce around on our toes shouting, "Woot! We win, suckas!" Everyone is in a bad position here. Our insurance company can't really pay the bills, because the trust that oversees the funds is adamant that the annual maximum is figured by the date the bill is received, and it may in fact be true that this is the way they've always done it, and it may in fact also be true that they have a contract with the reinsurer that says that this is the way the maximum benefit is determined. But they also can't deny any bills, because there (apparently, anyway) isn't any such stipulation in the contract with Jörg's university. If there's been some sort of omission in the university's contract with the insurance company, or with the trust's contract with the reinsurer, we're not really sure who would be responsible for continuing to pay Annika's bills. Obviously, that's not the kind of money that Jörg's small university has just laying around. So we are kind of in insurance limbo right now. Or maybe insurance purgatory. The bills are neither being paid nor denied. Needless to say, I don't think "insurance purgatory" is an acceptable explanation for collection agencies, so we do need to get this figured out one way or another, and soon. Of course, I could have this all wrong. I'm just guessing right now, but that's pretty much where we are left since no one who actually has a copy of the contract is talking. So getting to go home last week was super-fantastic on so many levels. Right now we have no idea what the insurance situation is, and we can't even apply for the one public program we've found that Annika qualifies for until someone figures out whether she's hit her annual maximum or not.
Annika had her repeat labs today, so we'll find out tomorrow whether the vaccine theory was right or not. If her labs haven't gone down, we'll need to head back to Chicago this week for another go at solving the mystery, most likely with a biopsy. I think they're going to look better. She was way too sassy yesterday to be getting sicker. Meanwhile, I ran across a rather unfriendly reaction to our situation published on another website. I'm not linking to it because I surely don't mean to send lots of people there to complain on our behalf, but the points she made, at least the ones that weren't just factually wrong or mean-spirited, have been banging around in my head a bit, and I've been trying to think of a good way to explain and, more importantly, justify the kind of visceral protect-your-child-at-all-costs feeling that times like this inspire. I need a few more days, though. More productive would be to thank all those that have participated in the casserole campaign that PPB inspired or the raffles that Andrea has organized, thanks to the generous donations of lots of crafty and talented people, and to Badger, who auctioned off this lovely piece by her late husband on eBay to benefit Anni's COTA account. And to all those that have made contributions, and to those lovely people here in our town who have offered to help set up local events. All to ensure that, however it happens, Annika will continue to have access to the medical care that gives her a chance to keep being the girl that makes my head explode in frustration some days (and I want to add to that sentence, "and my heart explode with love every day" but I know that that is way over the top, even if it is true).


Blogger Sarah said...

Oh Moreena, I am so glad to hear how well Annika is doing! Are you going to Children's Thursday? We have clinic Thursday, and ultrasound too. I hope to run into you guys, or set something up. Anna is having her ultrasound at 9:30am, so we won't go to clinic until after that. We are healthy too, you know I would tell you if we weren't.

Anyway, I can't even begin to try to understand all of this insurance stuff, and I don't know how you can either. I just hope that it all gets figured out soon for you guys, and Annkia.

3/08/2006 12:10 AM  
Blogger Jennifer (ponderosa) said...

Here's to children who are well enough to be a pain in the a**! I am going to carry that image to sleep with me tonight -- Annika dancing around the house with muddy galoshes over her head. What beautiful defiance.

3/08/2006 12:30 AM  
Anonymous Kristennn said...

Did you say SHE ? and when you said it did you mean it in the non-gender specific I don't know what gender this person is sort of way?
Because if that is a SHE, I am feeling a little bit floored.

3/08/2006 12:46 AM  
Anonymous Beanie Baby said...

I"m glad Annika is doing well enough to make your head explode, and I just can't believe how an insurance situation that couldn't get any worse actually got worse.


That's unbelievable. So their denial of Annika's coverage isn't the result of contract or policy, just habit? Unreal.

I'm also sorry you ran across some unfortunate comments. Let me know if there are any changes to the site I can make to make that less likely. It's the last thing I want to encourage.

3/08/2006 6:20 AM  
Anonymous Crystal said...

Moreena, I am sorry you are having such insurance woes, but I am SO glad that Annika is feeling better. I know there are days when I get frustrated with Trenton getting into every little thing, or crying everytime I walk out of the room, but those are the same days when I thank God he is alive! God bless you and your family! Headaches can sure be a blessing from God!

3/08/2006 6:59 AM  
Anonymous Becca - Natalie's mommy said...

We'll be there too..we hope...somedays the scheduling at CMH is frustrating.

We think of you all, all the time. And now I am smiling thinking of mudd dripping off of the boots on Anni's hands!!! How lovely!!

3/08/2006 8:58 AM  
Blogger liz said...

Hooray for healthy naughtiness and boo to stupid insurance companies who stonewall you and double boo to anyone who makes nasty comments.


3/08/2006 9:08 AM  
Blogger Phantom Scribbler said...

The insurance limbo is enough to make anyone's head explode. I hope it is resolved soon, and you can go back to appreciating Annika's newly recovered ability to be a huge pain in the ass.

You were very kind to the nasty person, in that you took her rant as something that deserved a response. I won't say the fundamental question she raises isn't a valid one; on a population level it certainly is. But anyone who approaches it as she did -- without some empathy, rather than hostility, for the human beings who find themselves in such situations -- is not worth debating with.

3/08/2006 9:29 AM  
Anonymous Jamie said...

I'm so sorry that some negative old wind bag has rented space in your head. :o( You reall don't need this now (though I wish to heck you'd link to her so we can give her what for).

I don't know what to say about your insurance situation. I have no idea. It's hard to be in a position where you don't know what to hope for or what the best case (and therefore worst case) scenerio is.

I hope, at the end of the day, you're getting the support you need. Enjoy your girls.

3/08/2006 9:42 AM  
Anonymous Sheryl, Justice's mom said...

I'm so sorry that your insurance woes are so unique that there seem to be no pathways to quick resolution. MY head nearly exploded jusr reading about it!

And I'm impressed at your ability to remain calm with someone who obviously has no sense of compassion. I'm also glad you didn't post the link because I'm not that nice! Anyway, I'm glad that I'm more amazed by the amount of love and support I see in the world involving sick or even well children. I'll cling to my warmfuzzy thoughts...

Here's hoping Annika and Frankie stay well enough to keep you on your toes without turning all your hair gray in the process!!

3/08/2006 11:09 AM  
Blogger Yankee T said...

Yea! For Annika's feisty-ness!
Boo! Insurance company nightmare.
Double Boo and Flip the MIddle Finger to whoever might make nasty comments to/about you. Let me know if you need someone to rearrange their kneecaps.
You're all in my thoughts.

3/08/2006 12:38 PM  
Blogger angela marie said...

Just try to remember that while there may be people who have hurtful things to say, WE outnumber them, and will forever be on the side of a little girl and her family.

I never did understand that reasoning of when the bill comes in. Shouldn't it all be dependent on date of service?

3/08/2006 2:09 PM  
Anonymous Anonymous said...

I know you've already said you've emailed Michael Moore. Just wanted to note for you and others that he is specifically doing a movie on Health Care and soliciting HealthCare Horror Stories:, see link on top right.

3/08/2006 2:28 PM  
Blogger Rowan said...

I am so exhausted just thinking about your situation. The insurance crap continues to floor me. Annika could be physically inspired by their [ins. folk's] ability to run circles around you.
Speaking of Annika, I'm so glad that she seems to be feeling better, and hope that all the labs show great improvement.
I, too, am glad that you didn't post the link. I'd be so tempted to go over and read her the riot act. I try to be polite, but that just makes me so hot around the collar.

3/08/2006 3:03 PM  
Blogger Rev Dr Mom said...

I am so glad that Annika is feeling so much better.

As for the insurance mess--it reminds me of a John Grisham novel about an insurance company that decided to just flat out deny all claims over a certain amount. The whole time I was reading it I was thinking that it could actually happen.

I don't know what it will take for the powers-that-be to realize how badly broken our health care system is, but it has to happen. I don't know either what the best solution is--some sort of socialized medicine? A single payor system? but what we have now is not working.

Your grace under pressure continues to amaze me, Moreena. Take care.

3/08/2006 4:27 PM  
Blogger Mike said...

I googled around a bit to try to find the crazy lady with the mean things to say, but I couldn't find the needle among the haystack of people sending love and links your way.

Frankly, I was a little surprised, since I generally assume that the world is full of almost as many bastards as angels, and that people rarely hesitate to be mean over the Internet.

3/08/2006 4:58 PM  
Blogger art-sweet said...

delurking to say that:

as someone who grew up with a chronic illness, I thought I had seen all the dumb insurance tricks out there.

I was wrong. You have my deepest sympathies.

3/08/2006 5:32 PM  
Blogger Elle said...

I'm thrilled to hear that Anni is doing well. I can't stand those pesky labs. Grr.

Have you guys considered getting a lawyer? I know it may be like adding insult to injury, but I think it's important for someone to be legally advocating on your behalf. I'm afraid that when and if the insurance company finds away to snake out, they will. Just a thought.

3/08/2006 7:32 PM  
Blogger moxiemomma said...

very excited about anni's spunk this week! the insurance business is a nightmare. i hope it can be sorted out. my husband deals with insurance, but a different kind. i'll ask if he's got any advice for you. he might know something about health insurance.

i, too, went in search of the nasty poster, but couldn't find her. i'd love the chance to comment about whatever it was she said.

3/08/2006 8:18 PM  
Blogger Amanda M said...

Hope that Annika continues to do better! Gotta love that.

As for insurance contracts, hope it gets sorted out soon - can the hospital's legal dept. help out? Awfully nice of them to be trying to help as much as they are - wow. Impressive.

As for mean people? They suck and don't deserve the time of day. Good outweighs the bad and poor behavior doesn't deserve attention.
Karma will get them.


3/08/2006 11:39 PM  
Anonymous peripateticpolarbear said...

oh, my, my, my....
Good mys, bad mys...
just oh my.

3/09/2006 8:20 AM  
Anonymous Irene said...

I'm so glad Annika is up to shannanigans! Wonderful!
I think you shouldn't even bother coming up with something for the "off" person who doesn't understand a parents obligation to their child. Just becasue they cut the umbilical cord when our children are born doesn't mean we seperate. I still feel we are one. I wish I could take all the pain. My heart does. So in my heart we are one. So when we fight for the life of our children we are also fighting for our own lives. You do not need to justify saving the life of you child.
I can't wait to meet Miss Spunky one day at a CLASS picnic or an olympics. She'll think I'm crazy for the giant hug i'll bestow upon her!

3/09/2006 9:46 AM  
Anonymous Mary Owen said...

Although we only met you once, (last summer at the liver picnic) I follow your story religiously. I feel so connected to you! I am the mother of two, 5 and 2 years old (boys). Danny, my oldest has BA but is very stable. Your stories always give me flashbacks to his first year, and pause to give thanks for the last 4 good years. I want you to know lots of people are thinking and praying for you every day! (not a newsflash, I'm sure)

I can relate to the kind of day you had with the kids, and I know it's hard to make yourself appreciate those days when you are frustrated with them:) Long ago, when Danny was really sick, one of the nurses said to me "One day you will find yourself saying 'Dammit Danny, behave!' Everytime we have a day like that, I have to stop and laugh because she was so right!
Enjoy those silly days :)

3/09/2006 10:42 AM  
Anonymous Anonymous said...

As others have noted, you truely have a gift with words. This blog is just fantastic. i am enjoying it wholeheartedly. Not just to keep up with Anni, but because it is a joy to read. Tears, laughter, joy, and anger. It has it all. Why not put it in book form. Send it off to a publisher and use the proceeds for Anni's care. I think this is great and would go over great.

3/10/2006 10:23 AM  
Anonymous kathy a said...

the insurance mess -- oh, it just boggles the mind. if something is NOT IN a contract, though, i fail to see how the company can deny on that basis. i can easily see how having 2 insurance companies in the mix makes the whole thing twice as insane.

glad annika is doing well! that is the big thing.

i have no idea what some mean person said elsewhere, but it doesn't involve you. some people think they are cool and smart because they blast on other people, whose shoes they do not occupy -- it is all about them.

parents care for their kids; communities care for their own; and that does not put us in conflict with larger goals. if the journey of 1000 miles begins with a single step -- so also does lifting the bar of public caring.

3/10/2006 4:12 PM  
Blogger Jessica said...

Hi, Moreena - just wanted to let you know that after the "Best of the Bad Art Contests" votes AND auction, we have raised $277.21 for Annika's COTA account. I am so excited to be apart of her important cause.

3/10/2006 10:49 PM  
Blogger Casey said...

Hurray for five year old sassiness! I'm so glad Annika is doing better.

3/11/2006 10:45 AM  
Blogger Jessica said...

Correction - the woman who bought my painting told me that, although she won it at less, she wants to pay the amount she was prepared to bid up to - that means we're sending Annika's COTA account $300.00.

3/12/2006 10:55 AM  
Blogger Moreena said...

kristen - no, I meant it as "she" as in, really, "she." I know what you mean, though. I, too, believed the writer to be male, at first reading. Then I was a bit ashamed at myself for my assumption, of course.

Mary O. - Of course I remember you! Danny is an adorable and great kid. Annika had a lot of fun playing with him.

Jessica - Thank you soooo much!

Everyone - yes, I know that it's not worth expending too much mental energy on one negative reaction - it's my own guilt magnified, I suppose. I know how lucky we are that the reaction has been mainly a positive outpouring of support.

3/15/2006 7:47 AM  

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