It's the Most Wonderful Time of the Year!

I've probably used that title each December since starting this blog. The sentiment remains. But, irony aside, Bo IS doing really awesome.

He had a skin infection at the site where his line exits his body. They can be serious and very dangerous if the bacteria travel into the tunnel around the exterior of the line. Because of that snug location, and the limited vascularization, if bacteria get in that tunnel area, it can cost the line, or worse.

We were very lucky that Bo is as sturdy and healthy as he is. His strong little body was able to slough it off with less occlusive dressings (sterile gauze and paper tape). It also helps that as sensitive as he is, now that he's 7, he can be reasoned with; so getting him to cooperate for showering off the site was way more feasible than it would have been at any time in the past.

We remain, gratefully yours,
Bo and family.

Dahlias, Babies and Sleep

I prefer dahlias to roses. I'm pretty fond of a long night's sleep. I'm not competitive, but I am extremely combative. Children were a necessity, as far as my brain stem was concerned; a sunk cost in the face of cold logic. I'm pretty open to new ideas and pretty driven to do better.

In summary, I am not doing enough. And then I collapsed.

Whilst this is Bo's blog, I think it's fair to say that his cares, even when we're on cruise control, are pretty complicated. So when I'm working like a maniac, and my spouse is keeping the ship from keeling over, and our nurses are coming to take up the slack with Bo's medical needs. Eventually, all those things combine into one dramatic ambulance ride.

Since I'm obviously well enough to be somewhat coherent in the retelling, here's the spoiler: I'm home, working again, and feeling much better. The moral of the story is: I need to take better care of myself. It's such a boring and annoying and obvious necessity, I've just fallen asleep typing it. BORING

And there you have it. Bo is doing so well, that my body decided now would be an ideal time to fall apart (from kidney stones). I promise that his wellness is not an excuse for me to physically regress any further. We still have a few weeks of summer left. More family to visit. More weekends to plan. More school-year nursing schedules to figure out. More Math Camp (Bo) and Tumblebear Camp (Ahn) to attend.

And now it's time for bed....zzzzzzzzzzzzzzzzz

Liebster!

First, I would like to thank Jane Thrive  who nominated me for the sweet Liebster Award.  The award is for the smaller blogs. Sometimes a niche is just what you need to feel like you're in the right place.
The Liebster Award is given to bloggers with less than 200 followers. The goal is to help people find these blogs that are worthy of a bigger following. In German “Liebster” means kindest, beloved, valued, and welcome.

The current rules for accepting this award are:

1.    List 11 random facts about myself.

2.    Answer 11 questions from the blogger who nominated me.

3.    Nominate 11 more blogs who have less than 200 followers and let them know they’ve been nominated.

4.    Post 11 new questions for those bloggers to answer (if they wish to accept the award—it’s completely optional).

Random Facts About Me 
1. I enjoy and excel in the humanities, which is why I majored in Biochemistry and got my MS in Microbiology
2. Endless summer (Florida, Hawaii, etc.) just seems like forced cheerfulness to me
3. I went to some very fancy schools, but the most famous person I know was a kid from public school
4. Because my parents seriously raised us 3 girls as their sons, I have never questioned my rights or abilities
5. My grandmother had an arranged marriage and bound-feet; she and my grandfather loved each other, madly
6. I minored in dance
7. There wasn't much religion growing up; I became Catholic after Bo was born
8. I didn't groom my brows until my wedding day, and only then because a friend insisted and did it for me
9. I gave myself such a severe cavity that 2 baby teeth fell out and one super-tooth grew back (aka janus tooth)
10. I wanted my father's approval, so claimed his favorite color as mine; I still don't know what my favorite is
11. I'm obsessed with real estate the way some guys are obsessed with sports

My answers  to  Jane's questions…

1.  Who is your favorite character in a book or a movie?

Wittman Ah Sing from Maxine Hong Kingston's Tripmaster Monkey because both the male energy and magical nature of a Chinese-American bicultural protagonist and his thoughtfulness resonate with my own sense of self

2.  Why did you launch your blog? 

I wanted to provide updates about Bo for our given and chosen families, and as a resource for other families, or friends supporting families of children with the same rare congenital disorder as my son, or whose children require the same therapies and interventions

3.  If you could wave a magic wand and change something about your life, what would it be?

I would cure my son's disease

4.  If you could change one decision in the past, what would it be and why? 

I would have let my son keep his pacifier as long as he wanted. Since he doesn't eat for nutrition, he has developed an oral aversion, and that in turn has led his parotids backing up with saliva. If he was still chomping on his paci, his salivary glands would be stimulated enough to produce the appropriate volume of fluid, instead of requiring more OT

5.  Who do you admire and respect the most in the world?

my spouse for patience and kindness surpassing my greatest expectations, and my parents whose loyalty and admiration for each other for nearly 50 years is truly a monument to behold, and President Bill Clinton (it would take too long to explain; maybe in a subsequent blog post)

6.  What is your biggest dream?

That a cure for my son's disease is available in my lifetime

7.  If you were stuck on an island and could only bring three things with you--what would they be?

A solar-powered desalination device, one of those never-ending graphite pen things, and swiss army knife

8.  What is your ideal vacation? 

A vacation rental by the ocean with lots of friends nearby for daily cook-outs

9.  What do you want to be when you "grow up"?

Able to fully live in my present and fully communicate my love and appreciation to each and every soul whom I have the privilege to encounter.

10.  What advice would you give your teenage self?

Take advantage of anything that provides an opportunity for new experiences, except for meanness. Being mean's only result is regret.

11.  You've just been arrested for protesting, what was it for?

Trying to access medicine, medical care, or getting in a health care professional's face for subpar care

My Nominees for the Liebster Award (although apologies if you have more than 200 followers, I can't tell!)

http://beatrixnz.tumblr.com/ because even though we weren't best friends when we had the chance to be, she always had an uncannily mature stick-to-it-ness that appealed to me, even in middle school, and the most magical honey-streaked blonde hair as a perfect counterpoint to an incredible intelligence. Those lucky Kiwis.

http://under-the-sun-365.tumblr.com/ she actually was my best friend (almost 40 years ago, seriously. shut-up)

http://mimismartypants.com/ because she is hilarious and I want to be her best friend

http://caringbridgeclassic.org/pa/malisa/ because of the honesty, heroism and heartbreak of parenting and chronic illness

http://www.anurbanstory.com/ because he is so funny, I actually cry

http://caleighscorner.com/ Caleigh is about the same age as Bo, and like him, is both medically complicated and super smart; her mom's pretty cool, too (I <3 designers="" font="">

http://curbcutsandcocktails.blogspot.com/ meeting Mallory's parents saved both my life, my marriage and Bo; she is kicking a$$, and happens to be the oldest living person with the same condition as Bo

I can't go to eleven. Sorry Liebs.

My 11 Questions for the Nominees

1.  Do you identify with the fish or the school of fish, and why?
2.  Why did you launch your blog? 
3.  If you could wave a magic wand and change something about your life, what would it be?
4. Where are the Snowdens of yesteryear, and what is the best Snowden joke you've seen/heard? 
5.  Do you have to be good to do good (ie does Miles Davis' art become invalid because he was misogynistic and violent)?
6.  What do you think about the Meritocracy?
7.  If you were stuck on an island and could only bring three books--what would they be?
8.  What do you think about books on "tape"? 
9.  What kind of extrovert wants alone time, and do they really need it?
10.  What advice would you give your teenage self?
11.  You've just been arrested for protesting, what was it for?

7 years ago today, I was mad, because I was supposed to have 2 weeks of prenatal maternity leave

Exactly 7 years ago today, I was in sluggish labor. I was supposed to be pregnant for another month, and have at least 2 weeks of maternity leave that did NOT include a newborn. Instead of having a Leo, I ended up with a Gemini. Because I've spent a lifetime avoiding crushed expectations, I decided not to dream about this baby, but just meet it (we didn't know the gender ahead of time) head on.

This person came into the world, surprising me, and everyone he meets. He is as much an enigma in person as he is in medicine. Sometime in this life we will know how his genetic defect came to be, but I am certain that there will never be a way to quantify or trace how this human has changed the world, least of all, mine.

While Bo and his sister are peacefully sleeping in their room, we're planning their joint birthday party at the Y.

15 minutes and 3 seconds to spare

I was at work yesterday from 7AM-12:20AM. So, yeah. I pulled a 17 hour day. The irony was, I wasn't any more tired than I am on a normal day. Our children are 3 and 6; and really high maintenance. So my long day, on the heels of a family-filled long weekend was only a source of torment to the littles, for whom re-entry into normalcy strikes like terrible jetlag. There is a lot of weeping to account for.

And the most complicated and valuable ANDA my Sr. Director has seen in her 17 years with the company was filed yesterday night, with 15 minutes and 3 seconds to spare. Within 20 hours, we were able to procure samples, turn testing and data around with quality checking and management approval, and drop data into my 4000 pages + ANDA. The submissions manager hit send at 10PM. The submissions gateway validated the document at 11:15PM and we received receipt of submission at 11:44:57PM.

I took a meeting on my cellphone from home, took Bo to school, went into the office for a short day, came back early to get the car (because the brakes stopped working at 7:01AM, yesterday, as I was rolling into a day I _knew_ would not end before midnight), gave the 2 sweaty kids baths and put everyone to bed ON TIME.

Bo got a sponge bath whilst still running TPN, a dressing change and stories. Ahnnie got degreased and three bedtime stories. Everyone was ready for bed, at bedtime.

Tomorrow, I will attempt to make a dent in the summer program registrations and plan a short vacation to the beach by my grandmother in-law's house.

The Unreality

Spoiler: Everyone is OK!

I've been getting run down, so was in bed immediately after putting the kids down. Roughly 8pm. I went to bed that early the day before, too. Felt yucky.

Suddenly this loud whooping seal-like barking erupts in the middle of the night. It is not coming from me. Is it a seal? It is not? Is it Jose? It is not? What is it? Who is it?

Bo: Be quiet!!!!!
seal-barking! and loud crying
Bo: Be quiet!!!!

Oh. My. God.
It's Ahn.

She is crying.
She cannot breathe.

All the lights, I run her into the bathroom. Maybe she is choking? I sweep her mouth, but only retrieve saliva. And loud sobbing wracked with the seal-barking. It will be faster if I drive than if I have to wait for 911; we are literally half a mile from the fire station.

I run out to the car. With Ahn in my arms. Jose throws her shoes and coat at me. I am wondering how I am going to make it to the ER in the dark rain, middle of the night panic. Oh please. Don't let her stop breathing. What do people do who live far from the hospital? There is not a single spot to park. The whooping and barking have stopped. I keep looking in the rear-view mirror and calling her name to make sure she is still there.

We run into the ER. I can barely sign my name. I am trying not to cry. I don't want to put her down on the scale, but they need her vitals.

Nurse: It's croup. It just sounds scary.
Me: uh-huh (thinking: that's a _thing_? it's like saying someone has consumption. that's still a thing???)

15 minutes later...
ER doc: It's croup. Two of my five kids had it. Some cold air is all she needs. Just have her breathe in the air of your freezer if it happens again. The steroids should do the trick, though.
me: ok (thinking: when the hell did you have time to have 5 kids whilst in medical school and residency?? You have a haircut and look actually tidy, how is that possible???)

15 minutes later...

Jose: you forgot your phone, and your coat (hands me both)
Me: you forgot our other kid
Jose: Paul's at the house

15 minutes later...
We drive home. Ahn sleeps with her feet on my neck, all night.

This morning...
I arose early, cheerful, delighted. So relieved and happy that we were all in our beds in our home. So blessed we all arose, happy in our home, together.

GOT IT!

Yessssss!

Got a text that Bo's regular shipment will have his Omegaven, as well! Expecting delivery tomorrow morning. Whew!!!!

Easter Miracle

He [Omegaven] is not here. He [It] is  Risen [in transit].

After Critical Care was unceremoniously dismantled by Walgreens, Bo's medical supplies started getting substituted with cheaper versions and their pharmacy seemed unsure of some really basic concepts around TPN. So we decided to switch to an infusion company that many of our TPN friends use.

It is a company we have been in touch with for years, and one whose customers have been a reliable resource for me and my many questions. We spent the better part of 6 weeks working on our supply list and ironing out details to ensure a seamless transition. When the time came to switch, it turned out that the best laid plans were not sufficient to ensure Bo's Omegaven supply.

Holy Thursday was Bo's appointment at DMC (it went well). But we were also told that his Omegaven, while clearing customs, had not yet received FDA approval to leave the port authority. Many phone calls, emails and texts later, it was determined that the FDA manager had not yet assigned an agent to our case. Over the Easter weekend, we were getting hourly updates regarding his shipment, possible work-arounds, and building contingency plans. Today we got word that his shipment was approved and on its way to the home care company.

Once the chain of custody is with the infusion company, I can relax, knowing it will be here within a day.

Chapter 5: The End, For Now

The surgeon's medical assistant sent us an appointment for surgery. I left them a message that the non-surgical interventions seemed to be working. The lump is now about the size of a pea or chickpea.

The surgery was cancelled. You may return to your regular programming. The program "SPING" crashed. Rebooting Spring. This action may require additional action.

See you on the flip side!

Chapter 4: slogging through 46 days in the desert

A sweet friend from high school has a tumblr project for Lent, and pointed out, in a recent post, that Lent is 46 days. You get back to 40 by skipping the Sundays. It's so much like the 40 weeks of pregnancy. Everyone calls it 9 months, but it's really more like 10. Everyone uses the smaller number to make you feel better. It just makes the whole business seem an eternity.

So with Bo's cheek. It seems like this lump has been there, worrying us all, for eternity. In reality, it's been a month. AND, it's getting noticeably smaller. WOOT!

I can't recall if I mentioned it already, I've worked 10-12 hour days the last week, so if you're trying to message or call me and I'm ignoring you, it's because my phone drowned. Revelation: the only thing I miss about it is messaging and bluetooth headphones/music. But connectivity is a must for Mr. Bo, in the case of untoward events.

Chapter 3: spring forward

The ENT gave us a surgery mitigation plan that has a slim chance of working: aggressively pursue feeding therapy (ie oral stimulation program) to get higher rates of saliva flowing, take a course of antibiotics to get the plugged ducts less plugged, and encourage less mouth-breathing.

So far, the results are good! The lump in his face definitely feels smaller, praise the LORD! And he seems to be in higher spirits. Although we spent bedtime looking at his junior human anatomy book, per his request, discussing facial anatomy and what we think is going on with his face.

In other happier news: there are no longer frost-bite warnings, Bo's glasses came in and they look great (he wears them ~60% of the time at school), he's finally outgrown his 4Ts and some of his 5T clothes, and his bone scan shows age appropriate density (this is REALLY good).

Our long-time infusion pharmacy was acquired by Walgreens and the transition has been only "OK." The next shipment needs to be perfect, or I will unleash the screaming rage I've felt about this neverending winter on their pharmacist manager, completely unrepentantly. I'm thisclose to doing so.

I dropped my phone in the (clean) toilet. Looks like I bricked it. I can still retrieve my vm's, but I have to go through the web-widget and I'm lazy, so it might be a while.

Happy LENT, all!

chapter 2...

The ENT was so in love with the kids, she took pictures of their big cheesy smiles before getting down to nitty gritty. Who knew she'd be obsessed with the batmobile and Ahn would waltz in with her batman T and cape!

The good news is that, "it's not some scary, weird cancer." I love to be able to quote a surgeon in words that give so much relief and make total sense. The bad news is that Bo may be facing surgery to remove his adenoids. Tho, anyone in the know, will know that this is about as quick and routine a surgery as they come. It's the '70's version of our new millenial ear-tubes surgery.

As I was putting him to bed, we went over the clinic visit and the very probable surgery. Bo got a little misty, which I found perplexing, although not quite as strange as his not having followed every word of the clinic visit. For a guy who has memorized every word of every book he has ever read, and who spends so much time eavesdropping on my conversations, he pretty much zoned out at an appointment that was both FOR and ABOUT him. Sigh. Thanks, 6-year-old-obsessed-with-fart-jokes brain.

So we talked about some basic facial anatomy, about the brevity of the procedure (it helped that we've read "What do people do all day" a zillion times, because I was able to reference the pages where the rabbit family goes to the hospital and the bunny gets her tonsils out- which aren't the same as adenoids, but close enough to satisfy Mr. Bo), and about how his sister has stinky feet. That got some big laughs. Then I turned off the light, Ahn fell on her head and cried, and everyone went to bed.

The end (:

Sucker, Punch.

I'm sure it wasn't there long. My kids are used to my constant hugs and caresses. They brace for impact when they hear the door slam shut as I enter the house. So, I'm sure that lump on his cheek couldn't have been there more than a day. I noticed it on Saturday. It seemed bigger on Sunday. He winced as I palpated it, to check if it was hard, lumpy or immobile (all really bad things). It was none of those things.

But it was tender, and seemed to be getting bigger. So we called for an appointment Monday, saw the doctor today, got referred to the otolaryngologist today and added an ultrasound of his cheek to his already scheduled radiology appointment on Friday. I'm hoping the specialist can see us sooner rather than later. Because all I can do while I'm working on the Company's most important Application is weep silently in my cubicle.

While it's true that we don't know what it is or what Bo will have to endure, it is also true that I am prone to catastrophic thinking (because, why the hell not?). And anyway, who doesn't like a good cry? So now that I've been sobbing, weeping and leaking tears for hours, I think I will collapse into bed.

Pray for me (selfish to ask for me 1st, but hey, Lent doesn't start for a whole 'nother week!), pray that Bo's cheek lump resolves without intervention, pray that my spouse can put up with all my weeping, pray that Ahn decides that the last year of potty training was not a joke.

But hey, Bo's line turned 5 this week! so we went to see the kids' 1st run theatre movie (LEGO movie) to celebrate. We all loved it! And having such a fun, refreshing weekend definitely put me in a power position when faced with this new plot twist. Now, for bed.

Merry Christmas, Happy New Year and Happy Year of the Horse (a little in advance)!

When I am struggling with fear, uncertainty and pain, I remind myself that the person whose body is affected with a life threatening condition is my child. It takes my breath away. But before I discount my own pain, dismiss my ability to understand what my son or my daughter are experiencing or the excruciating discovery how this disease impacts our lives on the daily, I want to share an embarrassing moment, I know everyone can relate to.

There were no conference rooms available, and I had the misfortune of quiet morning with my coffee, Pandora and laptop destroyed by meeting invitations. They piled into my calendar with silent efficiency, one after another, back-to-back. But it was snowing and short notice. So my boss and I hastily regrouped in our senior director's office. She was out sick, and her office had a door. But this meeting had been called by a scientist, and she had forgotten to send a dial-in number. So I tried calling the conference room. At this point, we were 12 minutes into a 30 minute meeting, and I had another meeting lined up. So I called IT for the number. After more minutes of back and forth, she still could not find it. I spent a few minutes asking WHY WHY WHY she couldn't find it, after which, my gentle giant of a boss started pacing. After a pause he quietly stated that he did not understand why I would speak to anyone in that tone. And as the thoughts of protest formed in my mind, I flushed with embarrassment. There is really no excuse for poor behavior.

Horrifying.

Yep. Never too old to learn. Not even a simple lesson I thought I had nailed. Nope. Never too old to fail.

So, you got that one, right? See, putting yourself into my shoes isn't that hard.

So when Bo decided he wanted to participate in the Children's Christmas Eve Mass, I did not say no. Having a little skin in the game builds empathy. And practicing Active Love, only means he will get better at being an Active participant in our church family, and the greater World Family. After a long day of celebrating and the excitement of reading Prayers of the Faithful to a packed parish, I was a little sad to see how exhausted Bo was, but not overly surprised.

We hustled the kids to bed and started frantically wrapping gifts. We were scheduled to fly out at 7AM, and were looking down the barrel of an all-nighter. But by this time Bo was thrashing around, moaning in pain. And it went from the most beautiful night of my sweet boy leading our parish in prayer, to me on my knees, praying he was not being attacked by bacteria in his blood stream. I took his temperature, cursed myself for not having a blood pressure cuff in the house, and took his temperature again. We made the call to stay home at 2AM. He was in pain, and we were not going to travel under those conditions, clinical signs (all normal) be damned. Turns out, he had a massive ear infection that burst the ear drum on Christmas Day (Oh, Merry Christmas to you, too).

But the miracle, the Christmas present that no one counted on, was that even though we had to cancel our trip, we would celebrate a cozy Christmas at home. The kids would get to their stockings on Christmas morning. And Bo's every morning vomiting would stop. Just. Stop. Whatever it was that changed (there were several changes that the doctors prescribed all at once in the interest of managing Bo's pain and stabilizing his blood chemistry), he has been emesis-free for the longest period of time in three years.

So let's break it down. We cancelled our trip to Disney (boo). Bo had an ear infection (boo). We went to Brown Couch after all (yay). We got to celebrate Christmas at home (yay). And my son volunteered to participate in Mass (double yay). And after all the dust settled, Bo's vomiting has ceased (oh, please! Let's all Praise the LORD!!). I'm most grateful for something that most parents will never ever experience (daily vomiting), which seems foreign, until I tell you that it's like potty training. You spend years wiping someone's rear-end, every day (in fact, multiple times a day). And then one day, you realize that you are doing it less. And then not at all. And you are all about Praising the Lord! See? Not that hard to relate to.

And while we're on the topic of eternal gratitude, I'm reminded by actively participating in a Facebook support group, that Bo's Omegaven status, his private duty nursing, and the school nurse hired to shadow him are incredible gifts. There are kids out there who don't have any of these life-sustaining medicines or support, not because they don't need them, but because they don't have the same resources that we do (my job's private insurance, my state's Medicaid Waiver, our school district's awesomeness). So if you've read this far, or have been following us all these years, please join me in sending a prayer, or positive vibes to the Great Universe, or meditating in Peace, that the other kids who need love, support, nursing and Omegaven get all those things and more. We couldn't do it without you.

PS, as shout out to the Save the Waiver (Illinois)! The Medicaid Waiver was SAVED and medically fragile kids can continue to receive private duty nursing and support at home.