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.

Finances

I was doing a little light reading when I found a scholarly article that showed that people under emotional duress make financial decisions with less consideration of the long term. And I can back this up with my own thoughts: I want to pay off my house in the worst way. It's not the "smart" thing to do, because the interest I pay (currently and for the foreseeable future) are tax deductible (Uncle Sam gives me a credit/refund for that). But I can't shake the feeling that, what if I die? What if my spouse dies? Eliminating that burden would be great, so if that happens, then the monthly costs would be very manageable on a modest income.

So, here's my plan. First, I will paydown our credit cards, then beef up the emergency savings, then, and only then will I snowball into the "good debt." I KNOW a lot of the money people think it's stupid to pay off a house early. I know some very fiscally conservative folks to feel this way too. I also know that when that debt burden is paid off, should something untoward happen to me, there will be many more alternate plans that will accommodate our needs.

And, now that I have a plan, it won't drive me batshit crazy.

Baseline bliss

Didn't want to update till I had results. Finally, after 2 months of antibiotics and laundering everything in sight, Bo's line and his blood is clear of bacteria! Can I get a Hallelujah?

Amen.

I'm too tired from enjoying my active family and demanding job.

More later.

Blessings to all!

A Broken Heart Starts with a Single Papercut

It finally happened. Not the unspeakable existential horror that I don't really have the choice to ignore.

Sits down next to terrible 8-eyed monster with green skin and large sharp teeth.

"Good morning," sigh.
"@#N#$! heh heh heh."

But the little things that will eventually pile up into some mini-me of insurmountable. It will be the fraction of infinite pain that Bo's death would carry. It's still infinity.

The babies were dashing around the rooms as we were trying to get them to bed, and Jose finally was getting Bo hooked up, and he wanted to keep running.

"I want to keep running!"
"Not while you're hooked up."
"But why?"
"Because you're hooked up and it's time for bed."

The four week course of Bo's second round of antibiotics is finally over (the 1st was only 8 days long). But the combination feels like forever. And repeat cultures next weekend will hopefully confirm that he is finally infection-free.

Beneath the Surface

Beneath the surface of our outwardly typical boy is an epic battle between microbes in the wrong place and poison. He plays, sleeps, reads. He has his antibiotics at 7AM and 7PM.

Beneath the surface of my constant-motion, we decided to switch rooms between the children. Bo would get the larger room and we would move his medical preparation and storage stations into his bedroom. As the furniture moved back and forth, I felt happy and satisfied that it was going smoothly. But when I saw the desk with all his supplies in his room, I cracked. I wasn't ready. Wasn't ready for him to stop napping entirely. Wasn't ready for his supplies to NOT be in our room. Wasn't ready for him to see all the things and all the time that goes into his every-day ho-hum.

I know he knows that TPN is a different way of "eating." I know he knows this. I know he sees his IV pole every day. That he drags his backpack around. That he has to wait for us to hook-up and un-hook his IVs. I know. I know this. But I can't. I can't bear the idea of this little human seeing a table piled with equipment and supplies, several-times his size in volume. This mountain of medical- the first thing he sees every day? These things, dominating his space, dominating the landscape of his little boy's room.

I think I just need a storage unit that obscures these things from view. And a glass of wine. Or three.

Happy Fried- Day. Uh, yeah.

Re-entry's a Lady Dog (as our sitter would say)

The wedding was fabulous. The vacation day was well-spent. The visiting with family given and chosen was tremendous.

We're all a little fried from the travel, but everyone had so much fun. These kinds of calculated risks will always be worth it. And now, I get to drive into the weakly breaking dawn.

I'm thinking we may need to start taking Bo to OT; he just can't seem to figure out a way to protect his hands when he falls, but also protect his head. Man, he has got this enormous goose egg on his forehead that is turning 50 shades of bruise, and has spread a little to his eyes. Imagine the most doleful furless raccoon and you just might get the picture.

Have a magical day, everyone!

my kinda town!!!

We are about to go to Chicago for a wedding. Bo will be on antibiotics for foreseeable future (read: 4 weeks). It's good, because his docs take this seriously and want to knock these bugs out for good. It's bad, because it's an infection that persisted through a 7-day course of treatment. But it's good, because the travel is less scary, since he's on antibiotics :)

And it's really good because it's the wedding of Bo's Godfather, one of my besties from college. We always joke that we are thisclose because we are almost the same person. Our birthdays are only 3 days apart, and now our wedding anniversaries will be only a day different.

The joy, hope, love and gratitude I am feeling may be the euphoria of sleep deprivation, or near-death, or simply relief of twice daily antibiotics instead of 4 times. Perhaps it is the anticipation of being in the same room with my chosen family who are so dear to me, who have supported me and my little family so long. Maybe it the glee of living such a rich life, despite, but with so much struggle; and finally realizing that we all have struggles- just with different names (MID, dad with alzeimers, best friend with cancer, sister with infertility, the list goes on), but that those struggles make our friendships that much more precious, that this life becomes highlighted in the light of the golden hour for much longer than an hour.

Bo's line infection happened at the same time as the final stages of my ANDA, my first. The same time my niece came to Michigan. The same time kindergarten started.

But life does not wait. And life happens. And we just carry on, because the alternative, or any of the alternatives, do not leave us better off.

And so, I spent the day polishing my 3000+ page document (I am not exaggerating: 12 three-inch 3-ring binders, full), rocking out to boy band singles, wishing I _was_ a boy band (I don't wish I was a boy, or a popstar, or in a boy band, I just had this overwhelming wish to be the entire boy band). And then thinking, if I was a Bollywood movie, that would be an easily acceptable substitute. Then thinking, I have a fighting chance of having this damn thing in good enough shape that I just _might_ get permission to take Monday off.

Two line infections in 5 years is a pretty good track record. 2 central lines in the same amount of time (and the 1st was only lost due to out-growing it) adds to our confidence that we have pretty good technique. But none of that takes away the fact that we live thisclose to the other side. And then again, who doesn't?

So we carry on. And remain grateful for all that we have. Reliable TPN deliveries. Washers and dryers. Good employment. A leafy neighborhood, and great public school. Books old and new. Friends, baby friends and baby frenemies. Family and hanai family. Beginnings, endings, love and endurance.

Let's get married!
I love you, snuggle down!

amazeballs

At the last minute, angels swept in, did the blood draw the midnight before school started, and Bo walked into school with all the other kindergarteners. I cried. I did not think I would, I'm sure my cry was very different from other parents', but I did, I cried. To see the school district's head nurse, Bo's schoolroom nurse, our good friend (also a nurse), and Bo. It was overwhelming to see and feel so much support. So many people who helped in so many ways, both visible and invisible, to achieve something that so many said was impossible.

And today, the first weekend after the first week of school, Bo's infection is officially clear. I am back to laundry and facebook. Bo is back to Lego's and libraries. We are as back to normal as we will ever get.

I have deadlines, and surprises at work. Jose has plans and art to create. Ahn has yogurt and rice to splatter across the house.

We get another tomorrow, together.

detour

Vancomycin levels were lower than the surgeon wanted, so the pharmacy will compound new doses and deliver tonight. Instead of  the 1st day of kindergarten, Bo will get to go to the hospital for a blood draw. The laboratory studies from this will: ascertain that the new level of antibiotics are strong enough to kill the bacteria (and not Bo), that the other components of his blood are stable, and that there are no longer pathogens living in his circulatory system. I guess that is a little more important than standing in line for the bell to go inside.

First the Pinch

As you apply pressure with the needle, first there's the pinch, then the tug.

The stitches. Each pinch remains a surprise, in its inevitability, in its staccato repetition. With multiples of these filigrees, suddenly these ephemeral wisps bind together with a certainty.

Bo is on the 2nd day of a (hopefully) 7 day course of IV antibiotic treatment for the 1st confirmed line infection since starting Omegaven. He had one before. While I know this is a VERY low rate of infection compared to what the literature suggests, it is no less life-threatening.

So before your freak-out. Remember, we live this every day. The very real and imminent threat, and the very normal. Bo, for better or worse, is acting well and has no obvious signs of illness. No fever, no lethargy, no real change in demeanor. Something was a little off, and we had cultures run. As it turns out, he has MRSA(!). But it is currently vancomycin resistant, and we are hoping that the vanco does the trick.

Last week Bo was in a fashion show with 2 of his surgeon's kids. I stayed home with Ahn, who was napping. But we had not seen Dr. L since Bo's last line breakage over a year ago. And as it happens, Jose was able to chat with Dr. L as another dad at the Chalk the Walk. Then a few days later, we are asking him to allow us to treat a line infection from home, call the infusion company at 4:45pm on the Thursday of a long weekend.

Between his antibiotics and his TPN, he still has a 4 hour window of unconnected time. Which is exactly as long as the kindergarten day lasts. So he will start school on Wednesday. Hopefully he will finish his antibiotics on Thursday.

We were disappointed to learn that labs must be run on Sunday, cutting short any plans to visit my family across the state for the long weekend.

But we will be able to go to a friend's 5th birthday party, visit some friends at their lakehouse, and maybe even go to the local Pow Wow.

Finally!

Kindergarten starts the Wednesday after Labor day. Bo will be in the AM class at the school down the street. There was no fanfare in that announcement from the school district. Just a matter of fact letter stating that we lived too close for bussing.

Send in the clowns.

I started the process for Bo's placement in January. We had 3 meetings, countless emails and several terse phone calls. I consulted a lawyer, other special needs kids' advocates/parents, and sent reference literature.

There will be a 504, and IEP will be written if needed, a nurse will be in the room. We will get an emergency medical supplies kit to have on campus.

We will start going to bed earlier and waking up with more structure. I am still a little dazed.

Send in more clowns.

The Unsettled Indecisiveness of ThisMoment

I keep waiting for things to be settled. For things to be known before I send another post of electrical impulses into the universe forever. A Morse code of pixels and punctuation.

School starts in a few short weeks and we still don't know where Bo is going to school for sure. But really, do we know anything about tomorrow for sure? I want guarantees. I want to be pandered to. I want someone to sooth my anxiety and fear. I'm certain the superintendant is not really qualified for that.

Happy Trails, Laura the Elephant

Turns out that Laura retired, so I didn't have to face the question of whether or not to ride the elephant. Bo enjoyed all the carnival games, and Ahn enjoyed all the sno-cones. The company carnival was a blast and they will be sure to enjoy it even more next year.

My Peace, I Give to You... or at least, my toes

There's a part where the priest quotes, "my peace, I give to you." I am rocking A and singing lullabies when I look down at her leg draped across me, and her toes, parallel to mine. And I realize that my joy at seeing this resonance in the smallest feature  between us, our toes, is not about seeing myself in her (since we really look nothing alike).

It is the comfort of knowing that she can see me in herself. For as long as she has those toes, she will have a part of me. She may never feel the same way about Jesus as I do. She may never know how I feel about my toes (grudgingly appreciative, they are not cute, but are so so important for balance!). She will probably think my ideas on politics and literature a drippy. But she can look down and know KNOW that there is a very literal part of me that she will carry with her until she too returns to dust.

Of all that is seen and unseen (toes, and DNA, in this case).

My toes, I give to you.

We Love a Happy Ending

Bo had his DEXA bone scan and GI clinic today. I didn't go. I know! I was paralyzed with anxiety, even with all my meds, but I refrained from going. And guess what, guys? No one is dead (well, in my family)!

I thought I might be dying of breast cancer, but then I realized that since I only weaned my daughter 6 months ago (don't judge, ok? she was eating solids, and quite a bit, I might add, but was still hanging on; then, suddenly, she was over it!), that milk action was still hanging around.

So Bo is doing great, Ahn is completely boob-independent, I get to sleep through the night (bonus!), and Jose's started playing music again. Yay! I'm not dead. Probably can't do that cash-out refi to finance the anxiety-inducing plumbing thing, but, meh. That's small potatoes. Since I'm not dead, I can continue to work, get paid, and pay all the contractors to keep my house from crumbling into a pile of dust. AND... the weather won't climb above 90 degrees this week!

No drama, friends. That is a glorious thing.

Is it inhumane and colonialist to want to ride the elephant at the company picnic? Don't answer that.

Normal and neighborly

We have made it through these white-hot days. I pray this is the worst of it. The reality of another hospitalization is sobering, to say the least. But we celebrate today, literally, and turn a blind eye to the misfortune evaded, again.

Neighbors comment how fast you and your sister have grown, admonish us to enjoy. Both true. But I cringe, because both infancies were years that I do not cherish, and try not to remember. Days full of mind-crushing fear, exhaustion, anxiety, sleep deprivation, bearing witness to and not having the authority to stop any of the pain or fear you lived through. And waiting, in terror, for your sister, to maybe develop symptoms of the same. For two years. The pain of those excruciating days may be some kind of foreshadowing, the culmination of which I do not look forward to, nor do I cherish. Those days are behind us now, like the sweet springs that feed our lakes.

I only have an appetite to enjoy each moment now. Each hot, sweaty moment. Each long-winded story. Each non-sensical pun. Each punchline-less joke.

How about this? I cherish each beautiful moment of your infancies for the wonderyears we are now enjoying. But I do not long for any of those days. Luckily we can't, and I wouldn't, wish them back.

Our secret: 200 cc of half normal saline to be administered at the hot and sleepy siesta, or earlier, if needed. Lots of air conditioning. A fan at night. And baths.

a four letter word

HOPE
This was imprinted on the mellon colored band. Aside from these interest-group rubber bands, I haven't been able to wear necklaces or bracelets for the better part of 5 years. So I put it on and glanced at it, remembering the sweet family whose child, not much older than Bo, graciously gave it to him.

We were flying back from our first and only Oley conference, a conference for consumers and medical professionals of TPN. The airport was a nightmare with Bo and his diapers, and lines, and vomiting and sensory overload. He was screaming or uncomfortable, and I was sweating and trying to manage his discomfort. We were trying to get dressed and put back together after being frisked within an inch of nudity and fully unpacking. This activity seriously took the better part of 20 minutes.

As I kept an eye on Bo while trying to compose ourselves, another family came through the scanner to retrieve their things from the conveyer belt. Their child came close enough to Bo for him to see her bracelet. She immediately took it off and offered it to him. There was no hesitation. I don't think he was sure about giving it back, and she was uncertain about giving it away, but when she reached to retrieve it, Bo protested and her parents asked him to keep it. Only after they had disappeared down the concourse, when I remarked how kind they were, and what an unexpected reprieve from our TSA experience that was, as I was sending up thanks for the small kindness, did I see it was embossed with "HOPE."

Can I Tell You a Secret?

I really don't want more children. Really. When we were fighting so hard for Bo's life, when every night was a series of beeping pumps and sounds of agony, when each morning seemed the beginning of a sea of pain, I went to bed each night thinking about the Duggars, Jon & Kate and Octomom. Full of envy.

Finally, we had Ahn. And she is truly her brother's opposite. Exuberant, extroverted, unafraid.

But I know enough science to know that a genetic test that was only used in a research setting for a disease whose gene was only just mapped can only tell us so much. While Ahn's results in utero told us she did not have the same tragic genes as her brother, I was not convinced she would be spared the same fate. So her entire first year of life was spent. Waiting. For the other shoe.

It did not drop, and I finally have begun to regain bits and pieces of my sanity. But a year ago this month was certainly a dark time.

And now, while we continue to generate mountains of recycling and amass yardage of cool-packs, I'm more worried about Ahn jumping off the couch when I'm not looking, or running to the playground before bedtime. I work hard, and I play hard in my work clothes. When they say day-to-evening wear, that is what I'm thinking about. And as long as you don't mind, I don't mind going down the slide with the toddler, in my work skirt, especially if Bo says he "will be there to catch [me]."

Hot days, cool nights and late sunsets. There really is a Kalamazoo. Happy Summer!

Dirt Eater

I'm not saying my daughter is, for sure, a dirt eater. I am saying she has hand, foot and mouth disease. This is a highly contagious mix of mostly viral, but sometimes a splash of bacterial, pathogens; a lovely tonic of germs if you will.

Ahn had this stippled rash on the tops of her feet. And she didn't feel like eating (!). Then, after our walk, I noticed she was hot, and her palms were stippled!

She was running a high-ish fever, and a mom on the FB support group mentioned her daughter on TPN having HFMD. Groan. Highly contagious and a semi-permanent IV are not a great combination. Not to mention my lack of familiarity with "regular kid illness." We will do everything short of solitary confinement during Ahn's contagious week, to try an keep Bo from getting this. I must admit, I'm feeling a bit defeated already.

Of course this all happens early Friday evening, the most perfect night of the summer. I have to be THAT PARENT who calls the pediatrician on call. Yeah, they're getting the big bucks to talk a microbiologist down about the unlikelihood that anyone can help a mostly viral, common childhood ailment {crazylady!}.

Good thing I get children's ibuprofen and acetaminophen for 20 cents. Cuz we are gonna be dosing around the clock. While I'm all about minimizing toxins for babies (hello, natural childbirth), there is a time and place for everything. And there is neither a time or a place where risking my daughter's brainfunction is ok. High fevers = bad news. So we will be alternating the liver toxic and the kidney toxic fever reducers (those are regenerative organs, the brain is not- so brain trumps filter organs), bleaching every solid surface multiple times, and germexing anyone coming within 100 feet of the house. Be warned.

Although she wouldn't eat a proper dinner, which the doctor kindly DID warn me of, she did eat THREE popsicles (ok, it was frozen pedialyte, that's ok; she can be mad and traumatized when she finds out in middle school). And with her fever reduced, she happily went to bed.

The end!

Wedding Bliss

We missed the wedding. Well, the maniacs and I did. Jose went.

Then we all went to the reception long enough for the lovely couple to register our presence and for baby Ahn (who really isn't a baby anymore) to grab the berries off the bite-sized cheese cake hors d'oeuvres, eat all the grapes trimming the brie, spit out the brie that I fed her, dance in front of the cool jazz pianist's awesome retro-y keyboard, get hot, sweaty, flushed and cranky, and smell the pot roast under the heat-lamp; namely 30 minutes.

It took the better part of Friday business hours for the nurse to pack Bo's things. She thought all she'd have to do was construct his bag, then I gave her a list of about 200 items to pack that were all Bo-medical related, and she was impressed. Like it isn't enough of a PITA to go anywhere with a pair of maniacs. WE insist on going every where with them, in spite of the 200 item checklist for Bo.

I love weddings.

Bo slept in the kids room (normal enough), Ahn slept in the master bedroom in her pack and play (she cannot be trusted, and must be confined), we slept on the lumpy pull-out (which is apparently superior to sleeping on the couch in its couch form) because we are sleep nazi's. As a parent, wife, homemaker and home owner, I let a lot of things slide. I don't cook, I barely clean and the house generally has the appearance of being ravaged by herds of feral capybara. But those kids WILL sleep undisturbed. They need to get smart enough to find paying jobs and move OUT of my house.

Every one is sleeping in (which means 9:20AM- the toddler's equivalent to sleeping till 2PM as an undergraduate). I've made a pot of coffee, updated the blog, run a load of laundry and started filling up the dishwasher. I only complain about not brushing my teeth because now I am starving, but my toothbrush is in the master bathroom. And I'm not about to wake up the tazmanian devil.

I love weddings, and now, I've discovered, I love Traverse City (because it has a disproportionately large independent bookstore for a town of its size).

A Perfect Birthday

I'm not bragging on myself when I say we had the perfect birthday party. As you know, the most valuable takeaways from my adult life all involve doing less: "it's not your problem, Kinn" (?!... :)), "if it is not your (company's) core competency... outsource," and something snarky about "superfans" and inappropriate emotional investment. So we had a local artisan craft cakes, my BIL made the pinata, my SIL and MIL did so much prep work it take its own blog to document.

But I digress.

What I wanted to say was, Happy Birthday, Bo! You have become an awesome little kid. Your ridiculously long eyelashes and super velvety soft skin still make me think you are a baby, but your insatiable appetite for knowledge and your supernerdy proclivities challenge me.

What _is_ a Mandalorian Jetpack, anyway?

We had a handmade robot pinata, chocolate leaves on the cakes, games and children, family and chosen family, babies and beer. The sun dappled the lawn, and it was warm but not hot.

Baby Ahn got to celebrate her birthday a little early, and she loved running around with all the other littles.

I look at you, Bo, and I cannot imagine the black hole that would have engulfed my head had you not lived. The intense joy and privilege of parenting you is a result of that moment, when I was with you, alone in our hospital room, as you were dying. And I looked at you and thought, I don't know you yet. They say a mother will give up her life for her child. I don't know you yet. But I need to. So I am going to fight with everything I have to give you the time to become. To be. I don't think it was love, at that point that drove me. I just wanted the chance to get to know you, and for you to remember, even if it was just the slightest impression, me. You can't go, yet, I thought. We haven't even started. You won't remember me. You will only remember pain and fear. I want you to remember being loved and cherished. We need more time.

The longest-lived intestinal transplant patient died, recently. She was 22 years post transplant. I look at your face and think, 22 years is not enough. That is not good enough. That is not long enough. It's not long enough, dammit!

For now, you are running and jumping, reading and rioting, exuberant, defiant. I hope you know that we celebrate every day you are here. We are so blessed that we got to keep you here by our sides, just a little bit longer.

Summer Begins

It has gotten progressively warmer all week and was officially hot today. The nights have been cool, and perfect sleeping weather. But we're finally into summer, and I get nervous about that. We can't seem to keep Bo out of the hospital more than a year at a time, and he invariably ends up inpatient in the summers. Which is great, because there are fewer respiratory infections, but is less great, because all the residents are brand-spankin new.

Anyway, I'm hoping we can forgo the annual admission this year. But Bo got completely wilted yesterday from being out in the heat, and today, our outing was a walk around the block. When he gets too hot, he will get dehydrated enough to become nauseous and vomit. He gets frighteningly pale and lethargic. And nobody likes that. Thankfully, the fluid bolus we started giving a few months ago has kept his excruciating thirst and dehydration at bay, but it may get hotter yet, this summer.

His biannual visit to the nephrology team in Detroit was great. Two years after stopping the kidney stone medication, he remains stone-free (yay!!). And they are suggesting changes to his TPN that may alleviate some of the thirst issues (too much sodium; it had been jacked up from his last bout of dehydration and never inched down, as his blood levels remained stable, but urine levels started to rise as he recovered, but wasn't getting those scrutinized as frequently). Once the appropriate sodium levels are determined, Bo's remaining thirst (if any) can be addressed by further volume added to his midday bolus.

Since everyone woke up early this morning, we actually made it to the earlier Mass. The play room was open, but there were no scheduled activities, which meant Bo had free reign of the giant toy box. I tried to dump both kids with JVC, but Ahnnie totally melted down, so I took her into Mass with me and she was surprisingly good! Aside from saying "all done" and bolting to the doors right before Communion, she was totally sweet (and silent!).

Summers are so incredibly luscious, here, they really are like vacations. I am feeling completely rested (can I have an amen for date night? We haven't had them in a while due to nursing personnel changes, and boy did I miss them), and even with the trauma of re-carpeting the basement from sewer back-up (entirely our fault forgetting annual roto-rooter), and planning the 5 and 2 year birthdays coming up shortly, I am just so grateful for our friends in deed (Paul!!).

May you experience the Joy and Love infused in this very Life.

Regular People Angst

The today litany, gateway to tomorrow, paralyzed me. I wasn't the deer in the headlights. I was the headlights.

And when all the little people fell sweetly asleep, grimy and contented, I remembered.

Until my fist clenched at my purse, screaming something angry about scarcity, as I softly ascertained after-hours plumbers' fees. I wanted to call my mom. My heart, gripped, constrained. tight tight tight. My brain scans for an answer. I feel a dull ache. I try to think about the end of the Easter season.

I will prepare documents for hand-delivery tomorrow before jury duty. Contentment glows from upstairs. The sun kept shining.

You don't mind if we stop over, do you?

I don't think anyone ever gets used to us. Even I don't. My friend/neighbor who is like a dad to me looks at the pile of "stuff for our trip" and is incredulous.

"I can go 2 months with a small duffel," he slurs. He's like a dad to me. No. Not the one I always wanted. An old guy who comes over and says inappropriate things.

"I can too, without these hooligans and all their stuff. What do you suggest? Wiping their butts with paper napkins from McDs? Improvised TPN with Mountain Dew? They do look the same."

He back pedals just enough to not look idiot. We finish packing and go. Then we get to our destination, and the hurriedly masked look of horror on our hostesses face leads me to the conclusion that my fearless co-pilot did not warn them that: we're moving in.

I know it's just 4 nights. But the mini-van is packed tight, front to back, top to bottom. It's almost as dense as the end of the school year and moving back home with all your shite.

And these are the Mother's Day gifts that I will cherish I'm guessing into my amnesia filled alzeimery old age: the nephrology fellow's follow-up phone call to tell me that we aren't just "good keeping up with Bo," but "damn good;" being invited back by the friends whose house we invaded and fully took over; seeing the heartwrenching creatives from CCS and their new digs (I did cry at the fine arts exhibit: they may not always have the most sophisticated ideas, they _are_ mostly around 21/22, give em a break), but they have been trained to the most rigorous level of complete execution (polished, dazzling and layered); and the glee my maniacs expressed on our return to our gingerbread house on top of the rainbow, next to the herd of unicorns.

Love to all the mommas out there. May your maniacs sleep in. May your spouses allow your craigslisting to go uncommented upon. May your new HE washer/dryer set's happy chime send a thrill down your spine (no, I still don't cook, but I DO love my new set). May you all wake up to fight another day.

I love you all.

Haircuts!

Everyone (except me) got their haircut yesterday at Suzanne's new fabulous space downtown. Bo sat so still and quietly, even though I could tell he was nervous. He flinched each time she sprayed water on his hair. Still, what an improvement on the screaming he used to do. I think it helps that Ahn went first and she did not cry at all. She did get bored, though. Somehow, I ended up with more hair stuck to my clothes than anyone?

Executive Summary

This blog is primarily to provide hope and understanding to families (including mine!) affected by life-threatening diseases resulting in the need for Total Parenteral Nutrition and Omegaven, especially those affected by Microvillous Inclusion Disease.

  Orbiting the realities of TPN/Omegaven and the physical needs of the child, equal consideration to the health and well-being of the caregivers is essential (especially when said caregiver has a propensity for space exploration). The way I see it, if my spouse or I fall apart, no one else will be able to advocate for Bo as forcefully. Likewise, the care and feeding of our support networks are the third leg in the tripod, the minimal number of legs required to support another object (said object being our family unit). These updates keep friends, family and our MID families in the loop with the medical, psychosocial, emotional and financial (insurance) peculiarities of having a kid with a life-threatening condition, who also happens to be gifted (the term is "twice exceptional," groan). Topics feathering out to my job search (yay, got the new job!), my angst (PTSD is nobody's baby), and the relentlessly NON-Keyensian way the world refuses to give us more hours in the day when there is CLEARLY a HUGE demand (I spent more hours a week working out than some people do at their jobs, now I don't have time to brush my teeth some mornings- don't worry, I have the spare toothbrush at my desk)... these are all topics that were introduced by way of new parenthood and MID. They are by no means exhaustive of the inner workings of my chattery brain, nor a comprehensive update of all the goings on of the household. It just seems that way, because MID touches so many aspects of our lives. 

Today's report is: great (nursing, labs and school) for now! Bo was serially: eligible to apply for medicaid, approved for medicaid and approved for private duty nursing. AND, his labs were virtually unchanged from last month and the several months preceding (= he's very stable, yay!). Yesterday I meet with the school district to set up the plans and strategies needed to keep him safe at school (IEP, IHP, 504)- more meetings for this summer.

Medicaid Primer: While each state has different criteria for medicaid eligibility, all are under a federal law (IDEA) to provide an education to each child in the least restrictive environment. Michigan's medicaid is income based, and before switching jobs, we didn't have a need for medicaid. The new job does not provide the necessary nursing, so to continue his care, we needed medicaid. I had expected denials all along the way, but was fantastically surprised. And now, we have it (till it gets reviewed again by the Michigan medicaid medical director in 2 months). The school district may be confused by Bo, but I am hopeful.

School Plans:
IEP- tied to federal funding and tons of paperwork for the schools, for adaptive curriculum and academic modifications
IHP- tied to health, less legally binding, no $$
504- what to do, medically, if... legally binding, no $$, a must for fragile kids

 As for me, I am struggling with some avoidance, time management and anxiety. I used to be very athletic and fit, then I had kids, Ahn finally stopped nursing a few months ago, and now I'm feeling pressure to lose weight and get healthier. I'm too stubborn to care about twisted normative values being shoved down our popular-culture throat. I'm more worried that I'll spend time at the gym and Bo will horribly die in childhood and I'll be standing at his graveside thinking what a waste of time that was. The very next thought is equally horrifying: I keel over or compromise myself and have a heart attack or stroke, and the whole family will have to pay for my less than stellar cholesterol and waist circumference. Both scenarios kinda suck and I'm paralyzed. My only solution is to wake up early and go to the gym when everyone else is sleeping, but that means going to bed as soon as the kids do, and I won't have time to mellow out after all my commitments have been met for the day. See. I need a few hours there.

 I did, in fact, wake up crazy early today. But that's so I can do 2 years' of taxes (last year I was in outer space, remember? No I didn't get an extension, so we'll see what happens) and finish that TPS report (snort). Wish me luck, or send me any spare minutes you might have found under the couch cushions.

Breakin the Law, Breakin the Law

I'm generally not so much a rule breaker in that rebellious eff-you everyone sucks kind of way, I'm a rule breaker in a "I'm here to meet Hans Clevers, he's giving a talk at noon, "meet the pioneer;" I'm meeting the pioneer" kind of way. So I crashed the largest scientific conference in the world, to meet the biggest name in Cancer, the guy who is going to cure MID. With a baby on my back, a four year old holding my hand, my bewildered spouse, and no official identification or admission, we walked through the gate, past the Pfizer booth, down the cavernous carpeted concrete exhibit hall, and up to the lecture hall with 4 security coats trailing us, worrying about insurance liability, children under the age of 12, admission, identification verification, etc. I am pretty sure a host of angels (or jedis?) stood their ground with us, "these are not the unregistered and underaged children you are looking for." We met Prof Dr Clevers for the 15 minutes between his arrival at the hall and the MC's shepherding him to his seat on the dias. I think this really was the only time I've been star-struck, and the only time I've legitimately stalked someone. HC: How did you find out about my work? Me: I've been following your work since you discovered the intestinal stem cell Lgr5 (3 years ago). I read your Tokyo group's paper on colonic stem cell transplantation. It's amazing that all you have to do is shoot the stem cells up in an enema... HC: and they stay there. It's been eight months already, and they are still there. Me: But how can you get cells into the small intestine, past the ICV? HC: easy; an NG tube that goes all the way through the small intestine with perforations along the way. Me: stunned. It was 15 minutes, and enough hope to last a lifetime. I finally get what groupies are all about. It is connecting to your dream incarnate, to hope and love and a dream come true. We may never meet again. We don't know when they will start clinical trials in children. Those first trials will probably use immunosuppressant protocols like those for surgical whole-organ transplantation. The second generation (if they get there, with funding and longevity) will be the one with self-cells genetically transformed. And who knows when of if THAT will ever happen. But whatever is driving this venture capitalist, MD/PhD, the new Chair of the Dutch Royal Academy of Science, I believe he will press on until this thing is cured. All I can offer is Hope. All I can be is Hope. All I can trust in is Hope. There is no world without end, without Hope. There is no world worth living in. There is no future. There is only Hope. You think that something that is broken cannot be re-broken, especially if it has never been fixed. You can't imagine that something like a broken heart can get more broken, because the pain is unfathomable. And you really can't foresee something as small as a newborn and as full of hope as a baby would be the instigator of that excruciating pain of a re-broken heart; the one that was never fixed. I think the worst year of my life was the first year of my second child's life, because all the wonderful moments were sharply barbed reminders of the exquisite pain and deprivation I didn't know I was missing with my first, affected child. My mind was blown that year. My daughter was beautiful, exuberant, voracious. She rarely cried, she ate with gusto, she smile so hard her dimples popped and her eyes disappeared. I loved her deliriously, I was so full sorrow. Somehow, the resumption of delirium, disorientation, fatigue and pain simply jettisoned my being into outer space. I was catatonic with grief. And then, I began my descent back to earth, the thaw, the flash, the burning ozone refined the sting and suddenly, I was back on our home planet. With a new human, a new job, a new life. I did not expect that. I had heard secondhand that a second child was healing, after having a child with special needs. And it sounded so vague, and veiled. I couldn't have guessed why. I couldn't have guessed that the healing required a break so sharp and searing that my whole being would be blown miles into the sky, into outer space, to freeze and thaw, to orbit and crash, to burn-up in a flame so hot it turned white. But I did, and it did, and I am. Back on earth, grateful for the ride, stunned by the views, happy to be home again. And as always, I write to you because I love you. Because you might be looking for me to tell you that there is Hope. Because this isn't my blog, about my feelings for my feelings, but because it is for you to find, because you are looking to see what will happen when you find out your child or nephew or grandson has MID. We are always here, steadfast. We will always Hope. We don't know what is coming next, we never expected the world to blow up and then get made whole again. There are diseases so rare that prevalence and incidence cannot be estimated (MID), there are unnamed syndromes, there are things that cannot be fixed, but might have work arounds, there are things that aren't fatal but profoundly affect quality of life. There are the affected and those who love them. There are caretakers and those who love THEM. This blog is Bo's blog. It is a light in the darkness for anyone looking. It is hope, it is information, it is armor, it is love. My story is incidental, I am only a supporting player, a narrator. I'm just telling the story of my son, because he can't (well, at least not at the technical level). If you have questions, need help, want recommendations, want to shout out, send us love or give a high-five (or fist-bump if you're from Chicago), never hesitate to do so.

My turn

Bo was struggling with extreme thirst. We were worried that he was getting dehydrated. But, his labs turned out perfect. It was excruciating telling him that we would not give him any more water. For every sip he took, he spit up twice that. The risk of dehydration was getting very real. I cried, he cried. We were all very distressed. The pediatricians were nervous about changing anything. The GI was nervous because of his history of kidney stones. But finally, they agreed to let us administer a bolus of saline in the middle of the day. They took out 200cc from his TPN and shifted that volume into the day time bolus. And bingo, the thirst is no longer an issue, or it was back to normal. He is growing taller. I had to let out the hems for several pairs of pants. And it amazed me. I've been in bed all day with the stomach bug that Ahn had. Bo somehow didn't get it (thank God!), but the rest of us three were laid out. Although I have some time to update, I'm feeling so crummy myself that this is really as much as I can do.

Loving the Gemini

They are both Gemini's. They both love life. Everyone they meet is a friend. They find the person looking back at themselves in the mirror delightful. They are Gemini's, I realized with a startle, because they each have a duality. The living, breathing child that is warm to the touch, and a delight to see. And then there is their other. The child who almost was not. And so, when I see them, hold them, feed them, scold them, pick up and put down for bed/time outs/car seat adjustments/high chairs, I remember this. I often wonder if I'm simply morbid, or a grief monger. But preparing them (me?) for the future, the unknown, the likely disappointments, grief, loss and pain to come requires arming them with joy, compassion and love today. That means giving them structure, assuring they have enough sleep, trying to acclimate their palates to good/whole foods. Because one day, when their twin looms, or mine, or that of someone they love, I want them to be prepared. I want to be prepared. On the one hand, US culture and society wants us/me to pretend and strive for eternal youth. But my child is young, and has a much higher probability of death than most of us. On the other hand, Bo is fairly stable, and I certainly don't want to point out the shadow of his twin, looming over my head. And that is my reality. It is real. Death. His. Very real. More real than mine. And then, there's Life. Very much alive. Tantrum-ing. Reading. Hamming it up for the baby's giggles. While every day may be one day closer to the twin. I also know that every day is a victory. Every day is a gift.