I regret being well-rested, said no mother, ever

And yet, here I am. Surfing, listening to the shushing of the cycling baby monitor, up waaay past my bedtime. There are 6 loads of laundry waiting to be folded (the sitter folded a grand total of ONE), and all sorts of administrative things I could be doing (last year's taxes, oh... and the year before's), besides the most pressing of all (sleep).

Although Bo has stopped growing (no one knows why, but we are going to find out, dammit!), as in not a centimeter in many months, and the constant IV drug shortages are nerve-wracking, the truth is, the kid is full of vinegar (as in, up at 6:30am, jumping on my bed and demanding we "watch my jig!"). And the other truth is, while all that may be contributing to my poor sleep hygiene, I would most likely be ding-ding/dong-dong late into the night, anyway. Also, the drug of biggest concern has returned to the market just in time (BIG sigh). Although, who knows which one will be in shortage next?

We had our first glorious first real day of spring. After a breakfast of donuts and coffee (NOT for them! they had milk), we spent the entire morning outside, goofing around on the lawn, cleaning up the lawn and doing a little tidying up. We ducked inside for a quick lunch, and maintenance of the marathon laundry (see above) event for me, while the kids had an hour of quiet time. We went BACK out to the playground, got a hurried dinner and shuffled my fresh-smelling littles into their fluffy beds.

My best friend from my last office stopped by, my guy is driving home from a great gig, and I even got to drop off the plastic bag recycling at the store (in my attempt to be doing enough). And the nerdiest thing that has filled me with glee is discovering that the caremark.com service spits out a report of ALL the prescription meds for each of us in whatever timeframe I request from ALL the pharmacies we use, so I never have to chase BPA-filled receipts to file my FSA claim forms, ever again. The close runner-up of nerd-alert? I just realized that the bottomless pit of cardboard boxes from Bo's medical supplies can be used to contain all our yardwaste for the city's monthly brush pick-up! Laziness score + recycling avoidance (the time and effort required to breakdown boxes for recycling is almost insulting) + freecycle avoidance + lawnwaste/kraftbag frugality savings $$!!

So, a red-letter day, full of sun, fresh air, and newly discovered efficiencies. Corny jokes, and made-up song lyrics to nursery rhymes. Goldfish crackers and secret gnomes (there's a small village in a huge knot in the tree around the corner from the house, which Ahn demands to "sthee gnomz?!" like 8 times a day). Lush green grass, crisp evenings, hot tea. The next 8 months always make up for the last 2 (because January and February are beloved because of their winteryness; whereas March and April are ALWAYS that way, and scorned for it). Maybe will put up a tree swing!

Maybe I'll read my bookclub book. Night, all!

Waiting to see what my Senators are REALLY made of

Just sent both senators modifications of the below. If you want to help (or stop my incessant whining), you can write your senators, too. Tell them that my whining keeps you up at night. That me and my kid are (or are like) family. That we matter. And that a sucky painful and slow death will just make everything suckier.

I know people are freaking out about the bombings. But see, that wasn't preventable. IV drug shortages? Those are kinda preventable. And what a lot of folks don't realize is that LOTS of people will be impacted when the well truly runs dry (even, for instance, all those injured in the Boston attack; tiny babies in the NICU, their families; anyone who gets in a car-crash and needs IV supplementation; cancer patients who need the same; you see where this is going).

So you have something to crib from, this is what I wrote. When I'm feeling ultra-creative, I will try and post a letter you can just copy and paste and not have to edit one bit. Until then, let this be your muse:

Dear Senator:

I left a voicemail on your office phone a few weeks ago regarding my dismay over the IV drug shortages. Your office hands were kind enough to remit a letter acknowledging receipt of said message, and declared you would need further details.

Here they are: 

I live in xxxxxxxxxxx with my family of 4. I am the primary wage-earner, and a native Michigander. I have 2 advanced degrees and choose to live in Michigan. 

My son has an ultra-rare (there are fewer than a dozen living in the world) disease (microvillous inclusion disease) whereby he absorbs nothing through his gastrointestinal tract. He is alive by receiving all his fluid and nutrition requirements intravenously. His infusion company has been heroic in their efforts to meet his nutritional needs through many of the shortages, until now. 

The current IV phosphate shortages have almost stymied us. There are only 2 products with this as their salt: potassium phosphate (also known as "K-phos") and sodium phosphate. There are only 2 FDA-approved manufacturers of this product (as many other companies made the business decision in the '90's up till now, to exit this business for not generating any profit): American Regent (Luitpold), and Hospira.

Apparently Hospira's enormous 483 compelled them to fire their CEO and hire one who promised to fix it. They poured $125MM into it (probably a bunch of charlatan "consultants"), and got reinspected by FDA. They received a scathing additional 483, the new hotshot CEO was replaced, and we are still in critical shortage situation.

When I say critical, what I mean is, my son already has bones that are not as dense as they should be. He is FIVE years old. He should not be getting osteoperosis. But without phosphorous, the calcium has nothing to hang onto, and then the bones fall apart. His bones will start dissolving, little by little. He will start to get fractures. Many, small hairline fractures. His growth will stop. He will be in chronic and unquenchable pain. He will be in a wheelchair. At some point, if this goes on for long enough, this bone disease will progress beyond fixing, even if this product comes back online to full volume of supply.

I need your help. I don't know what you can do. Maybe help us source from Europe? Maybe help these companies get compliant? Maybe send a few bucks to FDA to get these places reinspected sooner? I really am at a loss, which is saying a lot, considering I trained as a mircrobiologist academically and spent my first 3 years in industry working to get a big pharmaceutical company out of its sterile injectables' 483.

To see how far we have come with my child's health only to face this long, dark tunnel of uncertainty lined with threats of suffering and pain seems excruciatingly cruel. UMich doctors told us he would not live to see his 1st birthday without a multimillion dollar multi-visceral organ transplant. And that without that, he definitely would not live to see 5. He has never been transplanted. He has not died, yet. His 6th birthday is this coming June. He goes to the public school around the corner. He reads at a 6th grade level. He loves to do robot dances. And antagonize his 2 year old sister. He loves to find science books at the library. And play board games with his nurses.

Please help my son. 

Respectfully yours,

Kinn

PS I have voted at every election, no matter where I was living, and always voted for you at every opportunity. I'm only slightly pandering (you can see why), but honestly, it's because I believe that you are truly putting Michigan's best interests first.

It's a Nailbiter

For most of my youth and young adult life I felt like a girl waiting for a cause. With the energy and drive of ten men, I could have been the next Buddha, given the right initiative. Sadly, I was a bit, um, emotionally underdeveloped, and fortunately for me, I was privileged enough to have very little troubling my mind (thank you  to the Women's Rights and Civil Rights activists who made my laconic teenage years possible).

Right now, the IV drug shortages are threatening Bo's health. If we cannot get enough IV phoshphates and if the oral pills (which technically shouldn't work, but appear to be helping, but whose helping is nearly impossible to quantify because he doesn't absorb like a typical kid...) they want to admit him to the hospital. Theoretically, they would maintain a supply when infusion companies have run out. Except that the shortages are so severe, our hospital has also run out.

This is a big deal because his bones are already not as dense as they should be. Missing phosphorous would turn his underdense bones into brittle twigs. It would suck and be very painful.

So write your senator. Because no matter what the infusion companies, pharmacies or even doctors do, it's the voting citizen that the senators' lackeys are counting when they are deciding on legislation that needs more teeth/enforcement.

Other than that, just another day in paradise (40 degrees, grey and rainy with a high of 39 tomorrow).

Singing Off Key

My mother did not sing to me very often, that I recall. What I do remember was the one lovely lullabye in her childhood tongue, sung, certainly wobbly with emotion, and a bit off-key. I tend to sing it a bit the same way; my register doesn't reach as high as my throat used to be able to reach. And each slightly sharp-ish note makes me a little maudlin, and in-love.

I love the feeling of music coming from ME. Resonating through my chest, my daughters skull and into the very fiber of her being. Shakey notes and all. It reminds me of singing lullabyes, all manner of nursery rhymes and made up verses to Old MacDonald to Bo, in an effort to coax him to sleep.

This invariably brings more tears. But I am so happy. Because now, he pretty much goes to sleep and stays asleep until morning. And he's just sleeping, and not in THE BIG SLEEP.

In fact, he is so stable, that instead of burning my adrenals out wondering if my kid will still be alive in the morning, I sleep, too! And then I wake up stupid early. Because I actually can convince myself to do so. And I work my tail off at work. And one day a week, I work for free at the hospital for half a day. And Thursdays, as long and grueling as they are, can only in the smallest way, show the nurses and doctors who saved Bo's life that their ho-hum long shift jobs are so much more than that to me. That they are magical beings whose every touch were the difference, literally between life and death.

And I wonder if they know that there was another person whose life they saved during those long summer days in 2007? That this Lazarus had laid down for so many years that it seemed permanent. But one day, after a long time, the faintest flutter became, after many more days and weeks, an eruption of life being lived.

And today, I came home to help Bo with homework. I took the hair ties off of a stuffed caterpillar's antenae. I listened patiently to my favorite scientist delight in the surprise of his own brilliance. I sang about rainbows to my daughter and I read about germs to my son. And after the house grew silent in its contentment, I dutifully popped open my laptop to finish some work that the VP wanted.

It has been a very long week. Full of hard work, discipline, tedious chores, bad manners, tax preparations (which are not complete, still!) and laundry. But it is an exhaustion that I am so grateful for.

2013 Year of the Black Water Snake

The dark waters and stealthy energy of the snake are upon us. I cannot wait for the surprises this year will bring, I can only offer this: a long and patient welcome. With the planning and organizing that years of formal education and corporate employment has trained into instinct, I will bring my best preparedness to the table.

And I'm pretty sure that once seated, it becomes clear that we are not at table. But maybe a zeppelin in outer space. Or in a castle of unicorns. Nonetheless, the preparations will serve me well, I'm sure, in the least expected dimension.

There are some years that I wasn't sad to say goodbye to, or were so entrenched in mental-emotional fog that I remember little. 2012 was a beautiful year for me: I got my brain back. We will remember it fondly. And 2013 will be its own exciting adventure.

Traditions

People ask about traditions, and all I can say about them is that ours are mostly intangibles. Or maybe we're just slobs. Probably, since having Bo, we've been too distracted by his very fast-track to death (which clearly was obviated), to worry about pinteresting crafty Christmas tree linens out of the dryer lint and apple cores (jk, that is NOT a real craft).

Mostly, I'm looking for ways to minimize Bo's pain and discomfort, and prevent him from contracting a communicable disease that would shorten his life.

Also, it turns out that he can get bacterial overgrowth. Not really sure I was convinced that someone who seemed to have hypermotility could, but he can. SO we are now trying to cycle through various probiotics (to minimize use of and developing resistance to, antibiotics) to keep that at bay. So far, the old stand-by, Flagyl, has been great. But now it's time to cycle something else, so that doesn't lose its effectiveness.

We'll keep you posted. Till then, carry on.

I don't cook

No, really. It's Ok. Don't assure me I'm a good cook. THIS is not part of my affirmation. You won't offend me, and it does not hit a nerve, and it does pretty much zilch to my idea of my "womanhood."

Southwest Michigan is so heartbreakingly beautiful and abundant. The dramatic sunrises sandwiched between melancholy grey days. The deep and drifting snow in the winters, and the sweet and verdant knolls of grass in the summers. Cicadas and bbq, hickory wood fires and melted snow on wool socks. Popsicles, bubbles, icicles, eagles.

The one thing I still startle at: 19th century norms in the face of my 21st century reality. I'm not one to trouble myself with cultural norms. I've lived too far outside of them to really care. But when they are imposed on me mano-a-mano, I really do have to laugh in your face. Yes, it is rude. So is suggesting that the womanly art of cooking is one that I have ached to master.

No, I don't cook. But I'm sure you do. Be a dear and fix me a Manhattan.

PS Bo is excelling in school, but needs OT to get his fine motor skills up to speed. Ahn is learning to play catch and chase, do somersaults and find hidden candy.