Bo Blog (the crucible...)

Loving the Gemini

2012-01-19T21:54:00.003-05:00

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.

2011-12-20T18:39:00.001-05:00

Merry Christmas and Happy Hannukah!Since the last update, Bo's line has required several applications of alteplace (TpA), and finally an ethanol lock (0.5cc 70% ethanol instilled for 4 hours, and subsequently drawn out) to clear what appeared to be an occlusion caused by his lipid. My theory is that the fibrin (gunky protein that is part of the clotting factors in your blood) formed a hairy network in and around the end of his line, and that the lipids stuck to them causing a 2-ingredient clot, requiring two anti-clotting procedures. Somewhere in there, his line broke (due to the occlusion and repeatedly built up pressure) and the surgeon was able to splice a new end neatly, and without much ado.Baby Ahn is toddling and pointing. She continues to appear typical, including her language (resistant, as she prefers sign language, pointing, and general brattiness). She has started to use her words with prompting, started potty training, and reading.I still don't understand why Omegaven hasn't been approved by the FDA. The company that makes it actually has taken some leadership of this, but apparently, not significantly more than before.There have been days when I wondered what I would be doing if Bo was not here. I wonder when and what I should say to Bo when he asks about his line. He asked me when Ahn was getting hers. I explained that she was not going to get one. I had to choke back tears during this exchange. It made me wonder what I should say to Ahn, when things do not go as planned for Bo. I speculate about all the ways they will become broken, and all the ways I can prevent that from happening. In some ways, it is a relief to think that we will bear the suffering of the world long after he has gone, and he won't ever have to face pain and death without me. But obviously, there is little comfort in any of those scenarios. So for today, I'll pursue all those things imagined in the "after" meditation, so Bo can see, in THIS life, how much his endurance has inspired me.PS I don't know why, but none of my paragraph breaks are showing up and I'm too lazy to troubleshoot this right now.

Thanksgiving every day!

2011-11-04T23:41:00.000-04:00

Bo used to be such a light sleeper that we were prisoners in our own home. I did not put laundry away for literally years. A squeak of the floor, the rattle of a dresser drawer handle, the light in the hallway; all of could lead to a blood-curling scream that might take an hour to quell. He was not only a light sleeper, but an ANGRY waker. It strikes me as funny tonight, as I am banging around, the baby sleeping peacefully several feet away with nothing between us but a wooden door, Bo getting ready for bed, humming the Star Wars theme song, loudly; how easy it is to give up the niceties you imagine as non-negotiable. And how nice it is to have the luxury of those niceties back.Speaking of which, there has been some drama in the transition to new job, and specifically with Bo's line.Yes, his line broke this morning. No, he's not in the hospital. Yes it was scary and sad. No, Bo did not cry (although Ahn did, because in their haste to get it fixed, they forgot to bring babyfood- so she was MAD). Yes, my new insurance covers all the medical stuff as my old. BUT no, the nursing coverage is a mere fraction of that. Yes, we are all nervous for the transition. No we have no idea how this is really gonna work. Yes, I still giggle at work, because I still like it that well. No, my cubicle is not any less dreary (although the live plants are a treat that I have not seen in YEARS, so I guess that makes up for the threadbare carpet). Yes, for most people the amount and quality of care Bo has had is unimaginably amazing. So no, I'm not looking a gift horse in the mouth, just sayin that we got used to the gift. But also, yes, I'm finding the gift of enjoying my job has increased my energy level by a billion, so I'm a lot more helpful with the littles.So, he's not dead, yet. YAY us. BUT, these things still send waves of terrifying panic over all of us. And the fallout can weirdly last a way longer time than I expect, because in the immediacy of the situation, we all just do what has to be done in as calm a manner as possible. And when every thing has calmed down, when you feel like your life is out of immediate danger? That's when you fall apart. So, just so you know. You know?

Shana Tov!

2011-10-03T21:56:00.000-04:00

Orientation at the new job. First exam of the semester. Nerves.My cubicle is smaller and drab. It's somewhat depressing to see in its bare state. That is not why I am there. And as long as I can keep that thought at the top of my head, I can enjoy the blessing that it is.My sister posted a gauntlet she laid down, to scare yourself, pushing past your comfort zone, once a month. She is doing it! I am doing it! It is scary!!!

ch-ch-ch-ch-cherry BOMB

2011-09-23T19:49:00.002-04:00

So I dropped the Bomb on Tuesday and packed it all in today, Friday. I get a week off (paid), that's good. I spent my whole industrial career there, so now I feel very confused, that's bad. We are covered by my old employers' insurance until my new one kicks in, that's good. It's through COBRA, that's not all bad, but I have no idea how much that will cost, so that's a little bad. I don't have to move or make big changes that will traumatize the kids or Bo's medical state, that's good. It requires a commute, that's bad. I have no gaps in employment, that's really really really good. I'm feeling very insecure from all this change, that's bad. Leaving was gonna happen, and I would be facing a change no matter what, so on the balance, this is all good. This kind of seismic change is terrifying considering the responsibilities I have towards Bo's health and wellness, and being this freaked-out can only be bad. But hopefully it's short-lived, and that's good.On the balance: it's all good. God is good.

New Job, New Maze of Coverage Q'a

2011-09-20T10:35:00.000-04:00

I tendered my resignation today with mixed emotions. My whole industrial career has been at one company. I've worked and learned about different aspects of the business, they sponsored my VERY expensive MBA, and supported Bo through an extremely comprehensive insurance plan.I am jumping into a new company and a new position. I know they have medical insurance, but I haven't seen the fine print. Not knowing makes me a bit nauseated, but there was really no other option. So jumping with a net of unknown quantity. So, now that the cat's out of the bag, the blog can be re-opened.While I considered a nationwide search, and even a change of career, as second and third options, staying put and changing as little as possible was what seemed the best option for us, while Bo is still small and fragile. Being close to family, and the known quantities of hospitals, doctors and pharmacies was the conservative call.

Thah z ah han drid dahllahs of scah ch

2011-06-15T16:43:00.001-04:00

We spent our vacation in Boston on Beacon Hill, the native environment of the reclusive Boston Brahmins aka WASP. The "quaint" cobblestone and brick sidewalks proved no match for my crazy highend stroller. HA! Take that, Boston. Plus, we spent quality time at my BFF from grad school's play palace (condo in Cambridge), where there was an abundant supply of trains, cars and garbage trucks.

Above, Bo with the guy who saved his life, Dr. Puder.

Sorry, the title comes from our neighbor who had a broken bottle of scotch in his trunk, presumably potables and comestibles for watching the Bruins. "that's a hundred dollars of scotch!" he lamented, as he held up a dripping box and carried over to the garbage can.

imaginarium

2011-05-27T14:33:00.000-04:00

he plays hospital with construction vehicles as patients.
he wants to be a crab for halloween so he can pinch people.
he wants ahn to be a sea creature. shark comes most naturally to her.

I imagined Bo grown up for the first time in my life. I could almost feel my cheek against his tux on his wedding day. I never even allowed myself to dream of that until today.

pics

2011-05-18T13:30:00.001-04:00

ok, so the sd card with all the Easter pics was corrupted and they were pressed onto a CD (nice save, Jose!), but now I'm having issues with that! Anyway, these are more recent, and you can see how much Baby Ahn adores her Bababababaabab-Bo!

Beaster

2011-04-25T09:18:00.002-04:00

In a fit of domestic creativity (which is as rare as the ivory billed woodpecker), I fashioned an Easter Egg dying activity for Bo and his toddler buddies on Saturday using stuff we already had at home (tumeric for yellow, rotting blueberries for purple and some ancient jello packets for red, orange and green). And after they went to bed, the Easter Bunny crafted up their baskets using an old pair of green sweatpants cut-up into "grass" and tied around their Spring pj's rolled up like rosebuds. Bo had a blast being the Easter Bunny all day Sunday, delivering his and Ahn's baskets to me and Jose. He was soooo awesome at mass (no children's church, doh!) and behaved through the worlds' longest service (okay, it was Easter, so like I should be surprised?)
pics will be uploaded tonight!

Easter Bunny, Santa or ??

2011-04-20T14:00:00.000-04:00

It's the week of Easter and Bo is really excited for the Easter Bunny's arrival. Instead, we got snow. And a surprise visit. Jose asked who he thought was coming.
b: Gramma?
j: no
b: The Easter Bunny?
j: no
b: Santa?
j: nope; your tio Ren.

So Easter Bunny this week, expecting a couple new cousins' due dates the weeks after, Bo's 4th birthday (yes, the one we were told to never expect), visit to doctors in Boston, Ahn's 1st birthday, Baby Wen's 1st birthday, and suddenly it will be Fall.

The baby had gooier diapers over the last week, and I had a really hard time containing my rising panic. The white noise in my head was truly blinding. And I suddenly experienced losing my car (hi, it's not like a small thing to misplace) again and again all week. I had to ask someone, how freaked out should I be getting? Because I'm crying and shaking and unable to put together a coherent thought. And after feeding her an entire banana for dinner two nights in a row (God bless our pediatrician's nurse, Fran), her dipes got normal again. PTL.

My parents are enjoying their winter in China and thinking about permanently retiring there. I'm delighted that they are so happy, but it's sad for me and Bo, especially since they cannot manage to keep our skype appointments. But I guess this is where I release my angst to the Universe, God and the angels and just say that Jose's family and all Bo's adoptive aunties, uncles and grandparents take a very active role in his life and stand guard around him, make snowmen and snow angels with him, read books to him, and have never, ever been stingy with their love. Bo and Ahn could not have a more adoring family, and I can only explain their extraordinary presence as some kind of wonderful...

Praise God that you have not been left to the darkness and ignorance which continued prosperity might have involved...

2011-04-15T13:22:00.000-04:00

I was wistfully contemplating the easy, shallow life I had been leading. So full of promise, and abundance. Unacknowledged blessings and privilege.

Now I walk around with this gaping cleft in my heart. My damn bleeding heart. And I can see the lovingkindness in the world through my new eyes.

Buy oh Lordy, the other me? I would have been a skinny enviable bee-yotch; double income, no kids. Elbowing my way into a corner office.

I wouldn't trade Bo for any of that. Just in my fantasy on the way to a meeting with the parent 2 parent coordinator, as we scheme ways to provide support to families with kids on tubies in the area. I think about my alternate life. The other me. Sigh.

Ha!

My Own Private Snow White

2011-03-24T16:05:00.003-04:00

My brain, the fragile beauty that fell into a deep dreamless sleep, awakens to motherhood, corporate intrigue and nuclear meltdown.

I'm sure there could have been better circumstances to regain my cognition, but better late than never, right?

Also, the Adventure Project exceeded their $10k/24hour goal and get the matching funds.

Water, water everywhere...

2011-03-21T14:43:00.007-04:00

www.TheAdventureProject.causevox.com

The above is a picture of Bo, only a few days old. We did not know what was wrong, only that something was terribly wrong. He looked like all the babies who die of bad water, only we knew he didn't have a waterborne illness.

It turns out that water is a subject very specifically close to my heart. Not only am I a microbiologist by training, but I did work in infectious diseases.

Water is an issue for our troops. It is an issue for our babies. It is something that Bo can only have limited amounts of, but that he craves. It is something that kills 4000 children daily: more than malaria, measles and AIDS combined. In my very sick child's eyes, I saw what those mothers are seeing every day. An unknowable and unrelenting grief.

I'm coming out of my pain for the second time. Having another baby reminded me of all we went through the first time. So for all those mothers who need a child that lives, to heal their hearts, to limit this suffering, I'm dedicating today's blog to world water day. Go to their link and fund the training of local people who will fix the broken wells in India, so their children can have clean water, so they can earn a living and fix more wells and send those children to school.

If 100 bloggers can raise $10,000 in 24 hours, The Prem Rawat Foundation will match it. Every $20 fixes enough handpumps to keep 3 people in clean water. So, here's the link...

www.TheAdventureProject.causevox.com

Kiss Them, They're Irish

2011-03-21T10:26:00.002-04:00

No really. They're maternal grandmother is a Gilfoyle. Doesn't get more Irish than that.

I love the crying pix. They just crack me up. I'm not being mean, really. It's just so funny how dramatic they are.

I'm feeling the PTSD finally wearing off, and am wondering if my cognitive function will ever fully recover. My docs claim they will, but after being crippled for so long, I am skeptical. But, if my brain is working well enough for skepticism to register, I guess that is a good sign. It's humbling to lose control over the one thing you so prided yourself, and yet remain loved, unwaveringly. I am so grateful.

More Todays

2011-02-24T10:50:00.004-05:00

When Bo was a baby, we watched and weighed every ounce he gained. I agonized over every milestone, dreading each month and each milestone that slipped or squeaked by. Looking back, I remember spending way more time soothing him to sleep than I should have. Aching feet, peaceful baby, lullabies and the sun fading in the window. I savored those moments, knowing there would not necessarily be many more. But still wishing away those baby days, wishing him to grow up. Just grow up. Don't leave us with just your baby words. I need to know you better before you go. And now he is a big boy.

And then there was Ahn. She has grown so fast that I can't believe how heavy and tall she already is. I barely remember her being a baby. She is as big at 8 months as Bo was at 16 months. Baby Ahn stood up for the first time yesterday.

The day before that, I walked into her room in the morning to feed her and she said, "EAT!" No mistaking the word. First, dadada, then momomomomom, next EAT and finally, yesterday, she said, "Bo!"

Best February Weekend Ever

2011-02-13T20:53:00.002-05:00

We spent Saturday morning at Binnslandia and Bo built his first snowman, had his first snowball fight, went sledding and even shoveled the driveway like a snowplow! Lunch wasn't bad either (thanks, Maggie!). So many things I never did expect to see. The seed of my heart has been cracked open again and a sprout of green is growing through, like Baby Ahn's two bottom teeth.

I got to cruise through downtown K'zoo with both kids strapped into my double decker stroller.

I built a snowman in the front yard for kicks and my driving gloves are still cold and clammy (so much for sponteneity).

Words for Toddlers

2011-02-08T16:23:00.002-05:00

How do you describe the difference between darkness and shadow? How do you explain the nuance of animated discussion of an annoying topic versus an actual argument?

"Stop talking grumpy, Mommy!"
"It's dark now" as we walk into the shade.

I'm no longer driving to work in what feels like the middle of the night. Soupy grey mornings seem so bright and cheery compared to the drive to work shrouded in secrecy and darkness. I'm trying to live wholeheartedly, embracing the vulnerability, finding my superpowers.

Happy Year of the Golden Rabbit!

2011-02-03T15:12:00.004-05:00

The New Year blew in with silent fury. A blizzard of icy angora rabbits littering the sides of the road in their ridiculously giant, stories high quiet. How can something so impermanent cause so much real damage? It will all be melted in a few short months. A surreal memory in our green and luscious summer days.

I think I saw Ahn's first teeth (tooth?). They are barely in, reflecting the light, but just. She is drooly and only as fussy as she ever gets, not much.

I saw the top of my foot and got a little weepy. Firstly, my foot is almost always covered in this weather. But more importantly, I saw again, the scar where my "lunar" had been. The one that matches one on Bo's foot. It was a reminder of how permanently he is tied to my heart, and how these bodies that are so precious are so fragile. And it may be considered a bit of vanity to prize them so highly, but it's the only existence I know. And my faith is imperfect. And I know that when we are parted in this world, my heart will ache with the combustion of a million suns.

I look up to pull Bo's hat and mittens off to, "Just BoBo do it!" Unless we're talking about putting his boots on, then it's, "Just Mommy do it!"

I go to the links on my sidebar a lot, maybe obsessively. I witness their suffering. It reminds me that my own troubles are both behind and before me. It is like licking a healing lip. Ouch. Yup. It still hurts. Don't forget. Don't forget what that feels like. Don't forget what it felt like to rock him to sleep, shifting from foot to foot, singing about spiders and suns and rain. Don't forget how funny she is slowly collapsing from sitting up- crying out with indignity. Don't forget how delighted she is with his too-pretty lashes, how she is in wonder at her sweet babbling. Don't forget his fervent bridge building- across generations, cultures, this life and the next.

As another part of my heart belonging to my dear friends is wrung with grief for their mother who passed last week, I am reminded that this brokenness I feel is the place where the weld will be stronger than the untested fibers of my being.

And the life that swept the breath out of me for months, continues to take my breath away. She eats with gusto, lunging at the spoon, incapable of waiting the nanosecond it would take to travel from between us to her mouth. She is the Spoonabomber. Joyful, jolly, gentle. Peace.

The Other Experience

2011-01-20T21:39:00.002-05:00

Bo was our first child, so a typical child like Ahn is like having a first baby experience all over again. So many things we never dealt with: food in the hair, putting things in the mouth constantly, trying new foods by the bowl, using the stick blender.

Today, Ahn started smacking her lips. Her made-up sign language for "Solid Food!" So I popped her into the Bumbo and started shoveling blended green peas into her mouth. She had peas all over her cheeks, chin, hands (from sucking thumbs while eating- we have to roll her sleeves up!), and a runny nose (thank you Winter). Between bites she made the sign for Eat. Yes, I know. Then when the peas got too thick, she signed for milk! Then more Eat. Smart girl. Then, she signed, All Done. And with eye and nose rub, the natural sign for "sleepy," we went upstairs. And she went right to sleep.

And now, it's my turn. Good night.

Couer is the heart of Courage

2011-01-07T10:51:00.004-05:00

"Vulnerability is absolutely at the core of fear, and anxiety, and shame, and very difficult emotions that we all experience. But vulnerability is also the birthplace of joy, of love, of belonging, of creativity of faith." Dr. Brene Brown

It's taken over 20 years, two children, a career change and a life-threatening medical anomaly for my heart to catch up with my head, which is sad, as that head was precocious in high school, but simply on par at middle age. But, it's a blessing that it happened at all. I've seen the dark side that is left unbalanced *it's not pretty. Finally, I can embrace vulnerability and let the fear and anxiety and shame and difficult emotions turn to face me with their joy and love and belonging and creativity and faith.

Because, who is more vulnerable than a child? A medically fragile child? And who is more joyful than that little baby girl? Her brother in the rain (the week before the foot of snow we just got).

Babies, Sleep and Restive Drooling

2010-12-28T09:39:00.003-05:00

Somehow they just seem to get bigger and learn more complex things just long enough for me to note them, but hardly long enough for me to linger and savor. They just seem so much more goal oriented that I am, anymore.

We are not alone

2010-12-22T21:07:00.003-05:00

I have had too much to say and not enough words. So first, let me encourage you to click on any of the pics I loaded in the last update so you can get a larger image. The one of Ahn is representative of her nature. Exuberant and joyful. Peace embodied. And let me say, that her joyousness is infectious.

I had a friend say that after a medically fragile child, the typical child can heal your heart. I was foolish and too contrarian to agree at first. I guess I expected a choir of angels to burst from the heavens with a "You're Healed" certificate the day I gave birth, and when that didn't happen, I doubted. But, even with my imperfect faith, I did believe that the clouds would part, eventually. Today, after almost as much time as it takes to earn a bachelor's degree, I am proud, stunned and grateful to say that my brain has resumed functioning.

I want to point out, at the risk of sounding overly self-conscious, that these essays of self-reflection serve a purpose beyond narcissistic navel-gazing. I want to communicate that living with, surviving and thriving with a medically fragile child has its pitfalls beyond the physical threat it represents. It is a threat to every marriage, friendship and family of origin. It should not be understated the tremendous impact a medically fragile and chronically ill baby often has on families, individuals, and the parents' families of origin (ie my family and Jose's). I have had friends and family commend us for beating the odds, but most often it is those individuals who have witnessed our fight, who have also buttressed us in our greatest need. We did not walk this path alone.

For me, I came to realize that there were relationships and people I needed, I craved, I longed for, that had never been and would not now materialize. That the perfect words from the perfect people would never be realized in this life. But that the imperfect world, the one I did not find enough comfort from, was the only one I looked to. And like the rain, it comes slowly and seemingly from an unimaginable height. And even though it does not come from where you hope, or seek or expect, you do get exactly what you need to fight another day.

I cried all the way home, listening to the radio, where the author of a book talked about this thing he invented and wrote about as a response to his cancer in the face of his recent parenthood to twins. He formed a Council of Dads as a safety net, in case he wasn't there to raise his twins. And I thought, what about me? Where is my council of children, in case my son isn't there anymore for me to parent? I prayed and coveted more and more babies during that first year of Bo's life. But the reality I came to understand was that even if I converted to become a Quiverfull mother, there would be no council great enough to absorb the tsunami of grief that threatened to drown my essential being.

And even though my parents will never be the parents I hoped they would be, and I will never be the child they imagined I would be, I am satisfied that my love for them is great enough to supplement my shortcomings, as I know that the roar of their love is more than enough to drown out theirs.

God is with us, in the form of our family, our friends, our steadfast hearts. Burning the midnight oil for far longer than eight nights. The reality of this magic outlasts our own doubt, our own fear, our own terror.

long overdue

2010-12-13T16:11:00.001-05:00

Four Seasons

2010-11-02T14:25:00.000-04:00

My husband would rather not see winter again, ever. Or Fall or Spring. Me, I'm a Michigander. And while I can appreciate the marvels of nature in the Southwest, the Grand Canyon, the oceans, the deserts and the redwoods, I get a kind of peace here that has remained unmatched. I love the confetti of color the falling leaves make as the trees turn colors. I love the smell of earth and minerals when the spring showers quench the flowers. And I do, I love the quiet when the world is coated in a blanket of snow. I look out of the bathroom window onto the street. So quiet, even with cars shushing by. The tree limbs hanging their down around the house. I can't wait. I know it will be a long, cold season. And it does grow tiresome when it's muddy and cold as far into the year as April. But even three months of quiet, dazzling snow. Cold weather keeps Bo more stable (less likely to dehydrate), and so I look forward to the freeze as Bo's springtime.

Living, Waiting, Hoping

2010-10-05T15:54:00.002-04:00

My life is full of love and hope.
Bo: We are having a conversation!
Me: Yes we are.
Bo: Once upon a time, there was a little steam engine. It crashed. Into Miss Jeanine's store. And there was a fire. And Corbin was hurt. He had to go to the hospital in an emergency vehicle.

He's three. He's amazing. He has a chronic, life-threatening condition. Every time his pumps start beeping, my heart races, I break out into a cold sweat, and I think how close we are to losing him. Then I think, well, any child could walk into traffic. Or fall off a bike. Or eat a battery. But. It is like I watch Bo walking down the centerline of an undivided highway. Every day. Every. Single. Day. His chances of disaster are much higher than your average toddler.

So I put my existential panic in perspective. Readjust the focus. And soldier on. One slow foot after the other. Feeling, and re-imagining the feel of his soft hot hand on my arm. The small, sweet kisses. The weight of his body as I carry him down the stairs. Those irreplaceable sensations drifting onto my heart everyday like Christmas. The sound of baby Ahn's newfound giggle. Her whole-body smile. The feel of her soft, cool cheek against mine. I will never get enough of that. Please let me have these presents every day. Every day is Christmas here. And I step one foot in front, then behind. forward, backward. Lingering in This Today. Slowly. Luxuriating in the Today we have Today. Only touching the edge of our sea of Tomorrows.

Why Do It?

2010-09-24T00:18:00.002-04:00

There's Just Do It, and Why Do It. Blogging seems so 2001. A pet-rock type phenomena. But I am stalwart in this project. I am dedicated to the off-chance that someone searching the huge junkpile of the internet looking for hope after an infant's diagnosis of microvillous inclusion disease will stumble upon us.

While it might seem that we are more or less a regular family, it cannot be overstated that Bo's existence is an outlier, a miracle if you will. He wasn't supposed to live past 1. He is now 3 and in preschool. The magic here is that this good health IS reproducible. Just add Omegaven, and voila.

Maybe that's why I have such a hard time documenting Ahn's infancy. It is so different from Bo's. When Bo was 3 months old, we were in Boston, trying to get Omegaven, fighting for his life, staring down the barrel of a rising-biliruben (~9)/liver failure gun.

This week we celebrate: my mother's birthday, our 10th anniversary, Ahn's baptism, her 100 day birthday and my sister's birthday.

Happy September!

His Last Days, as an only child

2010-09-08T23:57:00.005-04:00

As is my wont, I'm posting pix 3 months old. Besides lazy, my other excuses include: paranoid that my medically fragile child meets a most unfortunate turn in the road, ditto newborn, ditto older home. Two out of three since these photos were taken have occurred (see the janky line issues, and the not-mentioned hole in the ceiling incident).

These are from the weekend preceding Bo's big #3 birthday, the one the docs in Ann Arbor insisted we would never see, at least not without transplant and huge medical complications. They were wrong again. Each passing day is a testament to their utter wrongness, on so many levels. I'm not mad, I'm not hatin', I'm just sayin'.

Don't get me wrong, I love our house; it is built with old water-tight wood, plaster, brick and apparently the thickest cast iron tub our plumber has ever seen, but why our plumber knows about the thickness of said tub is part of the story. There was a patch in the ceiling of the living room, under the tub. During my maternity leave I noticed the paint bubbling at that site. My MIL matter of factly stated that it was a moisture issue, so required plumbing before plastering. In fact, the previous owner had smashed/discovered a hole in the ceiling, and instead of fixing a slow drip, shoved half a dozen towels up into the ceiling and patched it up. Still leaking. The tub was leaking down the back into the ceiling, and out the front with a noisy dripdripdrip. When we replaced those fixtures due to the drip, I guess the new fixtures leaked even more (thus reinforcing my notion that older homes are better, as it took nearly 80 years for those original fixtures to give up, and less than 3 for my new ones to do so; I digress). So, bubbling paint. So the plumber smashed a hole, fixed the new fixture, replaced the old tub drain, and removed the moldy towels. The handyman ("Joe the Builder, to you, if you are a toddler) patched up the hole better than when we bought the house. And Jose will paint it this week. If I ever run into that fool who owned the house before us, I think I will give him a hard punch in the nose, or at least a string of obscenities. But, even with that ordeal, I'm glad we found the mysterious source of the occasional musty odor we'd detect in the house after a long weekend away. And as a microbiologist, I am every which way but grossed out, and totally relieved to be rid of those grungy mold/mildew towels.

The Real New Year

2010-09-01T00:19:00.002-04:00

I always thought of Fall as the real New Year. This is more true than any Fall. In two weeks, I will return to work from maternity leave. The same week, Bo will start preschool! There were many dark days, strung together, end to end, like one jagged tooth after another that seemed to say this day would never come. So when someone asked me if I was going to cry, yes, but not for the reason most parents do.

The Insurance Tango

2010-08-25T14:37:00.002-04:00

I don't know why it is that anything more than touching base with Bo's case manager gives me a serious case of the chest-tightening stop-breathing feeling. With a complex case manager, everything flows through her. I don't have to wait on hold for hours at a time, and I don't have to explain Bo and our situation over and over. In fact, I highly recommend getting a complex case manager for your child if your insurance company has such a program. That being said, we are trying to get a preauthorization approval. If that sounds like double talk, welcome to insurance. I won't go into it further than this, because I'm getting bored and frustrated just typing, so imagine you are already onto some other *CLICK* page.

Let's just say that Bo is feeling well. We are back to bi-weekly lab draws. Ahn weighed 12.46lbs, and we are craigslisting as fast as we can take pictures of stuff. Trying to figure out pre-school and part-time infant care programs. Wish us luck.

Dr. P called the other day (why is it that I feel like Ed McMahon has just called when this happens? Like, OMG! Celebrity!! Can't breathe. What do I say? Really, he knows my name?) and said that he has SEVERAL MID patients on Omegaven now.

No Admission Required

2010-08-22T11:57:00.002-04:00

You might call it coincidence, or you might call it faith. You might say the prayers and positive energy affected the outcome, or you might say it was already in the works. I know what I believe. Faith is not something datasets or spreadsheets can confirm, but for me, its effects are tangible. Let me just say that at the beginning of what looked like our third hospital admission in 6 weeks, I sent a call out for prayers, and by the time it was Bo's bedtime, we were tucking him into his bed at home. I'm just sayin'. Whatever works.

Angels among us. The Spirit at work. Our hearts and our hands. There are very real people doing very real work that keeps our Bo healthy and alive. They do things that are not listed as "goals and objectives" of their job requirements. They do these things because they are angels among us.

Thank you.

Janky Line

2010-08-20T13:42:00.002-04:00

Since Bo's last admission to fix his line 2 weeks ago, his line stopped three times. Twice in the early hours Tuesday morning 10 days ago. And once today. The first 2 times, Jose was able to get it going again. Not today. He and the nurse took Bo to the surgeon's office. Please send prayers that they can fix this without admitting him to hospital.

Close Call

2010-08-10T15:14:00.002-04:00

Thursday morning, everything looked fine. The site where Bo's line exits his body is something that is visually inspected daily. It looked fine that morning. I had noticed that it was pinker than I like it when we were inpatient at DeVos after we did a dressing change there the Saturday before last, but it looked fine as late as Thursday morning. By the afternoon it was weeping. I started panicking.

My mind was racing: what if it's a line infection? what if he is septic? what if this blows up so fast we can't catch it? how do you raise a child in the shadow of her sibling's early death? I couldn't stop. We did a dressing change and Bo was crying that "it huwt." I nearly cried myself. I was so freaked out I forgot half the things we needed for this sterile procedure. Thankfully Bo's dad was fully functional. We decided to look again the next day, do another dressing change if needed and possibly go to the hospital. We monitored his temperature every half hour till he went to bed and once when we changed his Omegaven bottle around midnight. It went up to 99'F and came down to 98. All Friday morning it was 97 and some change. We called the surgeon who ordered cultures from the drainage and from his blood, as well as antibiotics (abx) to start that evening.

We were happy to treat from home. Bo had other plans. Saturday after his second dose of abx, his line stopped. It had been difficult to draw blood from for cultures over the last 2 months, which was why we had Altapase (TPA) in the house, but it had infused beautifully until that morning. Then nothing. Pffft. Hard as rock. Again. My brain stopped. We packed up the car, the baby, the kid and a few bags of stuff. As we're headed to the hospital my husband asks if I've called the surgeon so we can go straight to the floor. DUH. No, I didn't, but I would have had my brain been working. So we did, and he did, and we got there in time to watch some movies from Child Life's library, and take a nap.

The transport nurse used the hospital protocol for TPA and worked on his line for 5 hours. A little bit of junk came out of the line, but the clot didn't soften much. So the surgeon put Bo on the schedule for Sunday morning. With a slim wire not too stiff that it would puncture the line, and not so floppy that it would not penetrate the clot, the doc threaded the wire through the line and back and was able to get the line drawing and infusing in 23 seconds. Surgery averted; a simple plumbing job saved the line. We were discharged within 24 hours of admission.

AND yesterday, Monday, his cultures remained negative for bacteria, so the abx have been discontinued. PTL! Ahn was very cooperative throughout, and since the hospital is 2 miles away, I went home with her and slept, fitfully. God is good, all the time. All the time, God is good.

coming of age

2010-08-01T16:36:00.003-04:00

Bo has been very stable and our plan is to knock back hours on the pump once we are sure his electrolytes are stable. But we're happy to report that his emesis has stopped and he is full of energy and love. Ahn continues to be very cooperative. And we each continue on our paths.

Firsts

2010-07-27T13:31:00.003-04:00

Ahn has outgrown her first set of clothes. She has experienced her first family hospital stay after being born. Bo has had his first admission in almost 2 years.

The heat, the increased activity, the excitement, all led to Bo's dehydration that we tried, unsuccessfully, to manage out-patient. The docs were able to stabilize him enough to send us home in record time. A great way to spend the weekend.

This has been going on since the week Ahn was born. We originally attributed this to adjusting to the baby. Bo was suddenly retching and dry heaving. This went on all afternoon until bedtime, ending with a little boy so lethargic and exhausted he could barely sit up for bedtime stories. Anyone who knows Bo knows that I am not exaggerating when I say that the first time I experienced his behavior like this I wanted to rush to the ER. I should have followed that instinct. Turns out that his potassium was dropping to a critically low range (too high or too low will lead to seizure or heart failure), low sodium, low chloride, high BUN, rising white count. Good Lord.

His beloved nephrologist left our home hospital and I was paralyzed with fear that the remaining docs in the practice would not be up to the challenge of managing Bo. And while I am still committed to following this guy, once we find out where he's gone off to, I am happy to say that his clinic does just fine managing Bo, thank you very much! And, I have to admit, I was highly skeptical at having an effective and efficiently managed stay that started with a Friday afternoon admission (who is even on service, will they bother to round, let alone look at the labs?) and in July (bring on the goat rodeo: new interns, residents, nurses, nursing techs, PAs, etc.).

Having a newborn and one in the hospital is not a relaxing weekend program I would recommend, but it was a LOT less sucky with the support of my MIL who graciously dropped everything to pinch hit for us. It also helps that DeVos has a hospitality house attached to it that had vacancies the day we were admitted straight from clinic. With all that gratitude, I have to say that I am out of practice cowing interns, residents, hospitalists and nurses. Usually the nurses I'm all good with, but I cannot get with the ones who insist on drawing labs or taking vitals on Bo at 4am. He is not the kid who falls back asleep. So save that part of your plan for some other baby.

Bo's nausea has been resolved, we can sleep through the night again (only punctuated by late-night nursing), and I can marvel at the speed with which my maternity leave is disappearing. The end.

Bo has a baby sister as of June 19th

2010-07-18T19:45:00.006-04:00

It has been too long since my last post. The days come and go. The hope, the paralyzing fear, the exhaustion, the mind-numbing heat. These thoughts come and go and I rarely have the heart to post them, hoping the dark days will soon be supplanted by joyful ones, and fearing the joyful ones will be overtaken by disappointment. But the reality is that heartbreak is never-ending. We don't just experience it once and say to the Universe, no thanks, I'm passing on seconds. I already got my ticket punched. So I live between heaven and earth, touching reality, anxious of heartache, grateful for grace.

Ahn Tsuen Andrea Velarde-Chan was welcomed into our family on Juneteenth, 2010. Although her labor was induced, with a mild medicine, the rest of the labor and delivery was completely drug-free (like Bo's). Labor lasted ~15 hours, with only 5 of it being active. Ahn was born midday with her father, midwife and nurse present at Bronson Methodist Hospital. She was quietly placed on my chest after birth and remained there for quite some time as we drank in her peaceful entrance into our lives. She weighed 7 lbs 6.7 oz. and was 20 inches in length.

Her Chinese name is Peace River. Peaceful, tranquil river. Her middle name is in honor of our dear friend, Andrea Rosenberger.

Bo has better and worse days during this time of seismic transition from being an only to being a sibling. It is everything I had hoped for and everything I had dreaded. When we came home from the NICU to contemplate the darkness and uncertainty of Bo, I dreamed of another baby. One to take away the heartbreak waiting around the corner, at worst. One to temper Bo's only-child status, at best.

Happy 3rd birthday!

2010-06-03T23:25:00.004-04:00

Shot Nerves

2010-05-11T15:11:00.004-04:00

Written 5/11/2010, posted today 6/2/2010

Bo's first line lasted 20 months before he outgrew it. He is on his second line: it is now 15 months old. While it has been infusing beautifully, we could not draw blood for labs on Sunday. So the nurse came back Monday morning. Still no draw. So, all day Monday, I coordinated with his GI's office, the infusion company, the nursing company and the hospital that runs the labs to get supplies to get the line to draw and to get labs run. We instilled TPA (aka CathFlow, Genentech's Altapase) for 30 minutes. Nothing. We waited another hour and a half. Blood! I spent the day on pins and needles and when it finally drew at 8pm, we were all so relieved. It's not like Bo wasn't in the hospital for his first 7 weeks of life, and we were told he wouldn't live, and that he needed a very risky transplant that would itself kill him, and that we should consider hospice if we refused transplant. It's not like we had an easy time setting up diaper service, a nursery and layette supplies, wondering how long we would need them. It's not like I didn't have a convertible car seat that made me cry every time I looked at it, wondering if we needed it at all. Or that every time he refluxes my hair doesn't stand on end, leaving me to wonder if we will be getting admitted back to the hospital. It's just that yesterday was a brutal reminder of all those things at once. Without being able to draw labs might mean the need to replace the line, or a line infection, or no new TPN or using the last week's TPN formula (best case scenario). But we got lucky. The doc had no problem calling in the order, the infusion company reassured me that they sent this out to homes all the time, the nursing company was comfortable having our nurse instill the enzyme, and my brave husband did the final aspiration and blood draw. Besides working the phones, all I did was try to keep the toddler from bouncing up an down to the Wiggles. That's all, good night.

Rinse lather repeat while they were at DeVos for an infusion just a week later. Thankfully, the next scheduled lab draw was a total non-event. And Bo will turn THREE tomorrow. I cried in the car all the way to work this morning. None of his diagnosing physicians expected him to make it to this day. I wonder if this is what other parents feel when their troublesome teens finally walk across the stage and grab the diploma? High school, college, grad school, wedding, grand children. Those will all be a non-event compared to today.

Intestinal Failure/Rehab 2010 Chicago

2010-05-07T10:01:00.002-04:00

Hopefully, the new baby's temperament and my ability to sleepwalk will allow us to attend this conference in Chicago in September!

Unprepared

2010-04-20T10:33:00.002-04:00

I am unprepared to divide my time between 2 kids. I am unprepared for Bo not to be the favorite anymore, and even more unprepared if he is? Oh, therapy. I see years of it ahead, which I am also unprepared for. I am unprepared for night nursing (I did pump around the clock for Bo, and I know I really like sleeping through the night, as a result of that). I am unprepared for, but anxious to have a "take home baby." I am unprepared for the cord blood registry expense, but reallyreally think it's something we need to do (any comments from our community of the medically fragile?). I was totally unprepared for gestational diabetes. I'm totally unprepared for another Gemini, but am resigned to the fact that this child will not make it to its original due date, and will be, like Bo, an air sign. God help me.

Somehow, with a double stroller in the garage, I feel calm and hopeful that we will have another natural birth, that maybe I can avoid insulin by swimming more, and that my pelvic pain (symphasis disorder) will abate. It's already feeling much better. And I am oh so grateful to the gods of fashion that flats are back "in."

Bo, by the way, has a drippy nose; hoping it's not allergies. He is into playing tea parties and shopping, learning about currency and horse-trading. He is naturally a better negotiator that I. "One more book before bedtime." Who could say no to that?

Premonitions, Discretion and Doubt

2010-04-12T22:07:00.002-04:00

I've had trouble writing anything lately. Shortly after my last post, we had a sudden death in the family, and the ominous foreshadowing of that missive contained all the emotions I would have included anyway. We went to the East side of the state to be there for the bereaved. Not that there is anything I can say to take the bewildering absence away. In fact, I'm sure I said a lot of things that were the opposite of helpful, but with the best intentions. I'm not so good at the "shut-up" part of consoling. Hopefully Bo's cheerful demeanor and charm were a source of solace, if not distraction.

We were able to make it out there with a wagon full of medical supplies and still forget a few essential things: power strip, enough saline flushes, paper tape, enough heparin, germex, detachol. We were able to supplement or replace what we had forgotten at the local pharmacies, and have an additional delivery from our infusion company. Additional, because we had our week's supplies sent there, before we called for the additional stuff we forgot to ask for. Oops. Luckily, this location was actually a good hour and a half closer to them than our house, so they were able to oblige promptly and with little complaint.

Whereas the odds of a crisis arising for Bo would certainly have been higher than this particular incident, I can't say that facing all this during Holy Thursday, Good Friday and Easter felt anything less than putting too fine a point on an essentially human condition. That this life is one destined for and designed to encompass death and dying, healing and rising, rebirth and hope in the face of cruelty and pain. Miracles despite, and really because of, the travails that we face on our paths full of stones and roots, predators and pain. The hope for sunshine, the succor of a light rain, the reinvention of life itself. And we keep walking. Partly out of hope, partly entitlement, partly out of lack of anything better to do.

And turning the prism of that drive to move forward in my hands I can see sunlight streaming through this notion of entitlement, changing it, reshaping it into its refined self: faith. Faith that there is a tomorrow. Faith that there will be something better for Bo. Faith that I am the recipient of unconditional love and adoration. Faith that I can be the source of unconditional love and adoration. Faith that this love will drive us to be better than our basest selves, and do better and live better and help better. Hope. Love.

Faith, hope and love. And the greatest of these is Love.

Building Faith

2010-03-23T10:20:00.004-04:00

Everyday, we dodge the bullet. Each day is another miracle. Sometimes, our miracle has become so ordinary, we wonder at the insult of the world's sense of normal. And somehow, it is so hard to remember that just because we lose our friends or family members anyway, just because we and those we love may stumble under our personal demons and afflictions, and just because we feel our hearts breaking over those losses, that our broken hearts still have the capacity to fill with awe and love at the miracles we continue to be blessed with.

One of the major downsides of all this information accessibility faces us when we unearth obituaries that we would have otherwise known nothing about. In years past, someone disappearing from our lives from long ago would leave us to wonder. Maybe create imaginary adulthoods, alternate lives for our long lost friends. Now, once or twice a year, it occurs to you to try and find someone. And you don't get anything. And one day, there it is. And even though it's seven years after the fact, you read that she died at 29. And because you are just finding out, it is exactly like it just happened yesterday. And the immediacy of that grief and heartbreak is so foreign and so close. Maybe that is what it is like to actually unearth an artifact. An old fragment of pottery. Someone's hands formed this vessel, carried it, held it. Their lips touched it and received succor.

And when this happens, I never know what to say or how to feel. The truth is that when someone you love dies, no matter how young, how old, how accomplished, how haunted, how close or distant you have become over time, there is grief. And after the heart break, there remains an ache. With all the aches and pains and scars on our hearts, it is an astounding trick that our hearts continue to beat and fill with love and hope.

Comment on Japanese Regenerative Medicine: Intestines

2010-03-16T09:58:00.002-04:00

While I see hope that medical advances may provide, if not a cure, a partial reprieve from some of Bo's medical complications from his condition, I felt a need to comment on the recent publication that seems to be making the rounds. This technology is great, and may prove to be a cure for those with gross anatomical short gut: kids whose intestines were removed due to NEC, or volvus, or even pseudo obstruction. However, for those of us whose kids are on TPN due to genetics (MID, Hirschsprung's, tufting enteropathy, etc.) this technology's usefulness only comes into play when a second step can be successfully accomplished: gene therapy. I for one don't think Bo needs more centimeters of the same non-absorbing surface that he currently has. And really, if that second step is possible, you might even hope you could bypass that step of needing additionally created artificial intestine and just apply the gene therapy directly (like the gene therapy that has returned some vision to blind patients whose conditions were genetically caused http://www.reuters.com/article/idUSTRE57B5PN20090812).

7-10 days

2010-03-04T15:43:00.001-05:00

Well, Bo seems to slowly be recovering from his cold, and Jose seems to be getting worse. Hopefully we all come out alive at the end of the weekend. I'm already exhausted. Those pre-natal vitamins have kept me healthy all winter (knock on wood).

Throwing up all night

2010-03-03T13:32:00.002-05:00

We are again sleep deprived and a little panicked. Took the boy to the pediatrician, who listened politely to our concerns. And with a completely straight face told us that a teaspoon of honey has been shown to be more effective than medication for toddlers with colds at night, and sent us home.

Just a cold. An ordinary toddler cold. Go home to your sleepless, coughing boy, and rest in normalcy.

I suppose it's just as well, seeing that I'm too uncomfortable to sleep much anyway.

Pain Appetizer

2010-03-01T13:50:00.002-05:00

The hormones from post labor and delivery are in favor of evolution and against my personal comfort. Which is to say, that while I can intellectually tell you that 30+ hours of labor was a long time, those hormones make you forget the visceral part of the experience. I'm not even close to that experience. I'm just trying to get and stay asleep. Without excessive protest from my lower back. Ugh. I'm sure it was worse with Bo. But I don't remember this real-time, persistent ache.

Please help the pregnant lady!

Nuff said.

Preparing the Way

2010-02-26T12:05:00.003-05:00

I remember when Bo was still very unstable and it was still questionable whether we would have to say goodbye to him before he would even be old enough to remember us, before he was old enough for us to actually make memories with him, long long long before we would even know what it meant to be ready to say goodbye. It was very hard for me to be around others' pregnancies. It gave me the irrational longing to be pregnant, the condition that kept Bo the safest. In my grief-striken reveries I would imagine having child after child, like each was a layer to buffer the pain. Insurance. Talismen. A continuous hormone high.

And now that we are more than halfway through this second pregnancy, it is a struggle to keep a lid on the hysteria. And I just can't stand being the exhuberant, joyful expectant mother- so much the thumb in the eye of who I was just so recently. And certainly, to any of those other mothers waiting to be mothers.

Maybe that's why I still follow and have so much empathy for the families I follow on the links included on this blog. They all walk paths that are the alternate universe we may have so easily been on, that we might find ourselves on again any day, that we feel we are on some days more than others, still. Saying goodbye, struggling with hospitalizations, searching for therapies, for answers, for support.

Life is uncertain. Anyone might be faced with these realities, but having been so close to them so long, breathing the same air, sharing the same bed with anguish, night after night. It can be paralyzing. And then this child, always on the move, gives a kick, tumbles, morning, noon and night. And we keep moving too. Grateful for the chance.

Maybe that's what they mean when they say someone "found religion." That you've found your stronger self emerging from the broken bones and ashes. I've seen the bright white of extra calcification where a broken bone has mended, stronger than before.

Week 22

2010-02-19T10:49:00.003-05:00

The Baby Present is more than half-baked!

Housekeeping: I'm moderating comments now as someone's spambot found blogger, and I unlocked those videos in the last post. I'm not the most technology-loving person and I wasn't sure how to do it. But it's done. Also, I don't think there's a solution to the blogger layout cutting off the right side of the video, so if you want to see the full frame, you'll have to click the link in the vid after it's done to go to vimeo and see the whole thing.

Enjoy!

Hawaii on the Brain

2010-02-05T17:16:00.002-05:00

Thinking of our Hawaii families expecting very soon!! Can't wait to meet you!

Gestation Redux

2010-01-29T15:21:00.004-05:00

All told, I am feeling well, and continue to marvel at how lucky we are. Above are 9 and 10 week shots of "Baby Present," as Bo affectionately refers to it.

But the day-to-day behind my gratitude is a cascade of complex emotions: conflicted, anxious, exhausted; hopeful, grateful, contented. I see this picture of myself, 6 weeks pregnant with Bo, fit, happy and expectant. Today, at 19 weeks, there are times when the worry and fear leave me breathless (well, that and just the sheer size!). An age has passed.

It is scientific fact that I am and have been bathed in a sea of hormones which certainly has an effect. But it is also true that the gauntlet we have travelled from that sunny regatta day to this has been fraught with its own set of unforseen and unimagineable anguish and triumph. And that time's accompanying elevated cortisol levels. And sleepless nights, and tearful days. And moments of wretchedness and relief. While I wouldn't trade a moment of this life, I certainly wouldn't recommend it as a way to preserve your youth.

We are changed forever. And I have lost forever those days of unfettered, carefree joy. I have finally arrived at my adulthood, burnished, polished, glowing.

All Quiet

2010-01-14T22:28:00.002-05:00

So, I'm having a mental block and just can't get pictures up. I figured a shout out to the world that all is quiet and well would be good just about now. Bo is sleeping peacefully. We've been approved for another 3 months of nursing care. Jose's got a sculpture entered in CCS' alumni show. And all the pre-natal testing has come back so far as normal. I'm at 17 weeks (but as big as 25!!) and am past the morning sickness and terrible fatigue. Now I'm just hampered by my size.

Pix From Hawaii (Oct)

2009-12-30T13:33:00.002-05:00

I know, I'm behind on posting pix. Sorry. But to ally anyone's anxiety about the last post referring to inpatient infusions: no worries, this is just a precautionary measure in case Bo experiences an allergic reaction to the infusion. As with all medications for children, the toxicities and dosing are usually done off-label. The liability and study design to include children on a label are just to high and complex for any pharmaceutical company to openly pursue out-right. So, what usually happens is the pediatricians and pediatric specialists just have to guess and hope it works. I know. Scary. But what can you do? Anyway, by the time a product is on the market in the US, those safety issues are usually very well documented. And then, after it's been used in the pediatric population for a long time and there's a lot of data from its use on the market, a company will THEN apply to include children on the label. More to the point, Bo's infusions are so low risk that we usually just check into the floor, get him hooked up and go straight to the playroom, returning only to watch some Thomas Train DVDs that Child Life has brought by. They only do vitals before we hook him up and right before we leave. But it's a good precaution in case something does happen. And, hopefully, after the 6th one they will let us do these from home.

Merry Christmas!!

2009-12-24T09:34:00.001-05:00

Eating is still sporadic, but sometimes, Bo is quite enthusiastic!

The Hugeness!

2009-12-23T16:02:00.000-05:00

Sing Along

2009-12-23T09:54:00.000-05:00

Gearing Up

2009-12-21T10:11:00.003-05:00

How is it that I'm gearing up as the year is winding down. All the anticipation of the holidays has me paralyzed this year. While I appreciate the mellowness of Hannukah: candles, potato pancakes, one simple prayer; trying to explain to a 2 year old that the every-night-a-present thing is over is a bit trickier task. Thankfully we are deflecting that with the promise of Christmas. Which probably means nothing to a person who has no sense of time (see bedtime rituals, and pushover parents; jk). I have to admit that I'm a little afraid of what 2010 will bring. When Bo was born, we were told that he would not be here by now. And I just could not bring myself to plan past 2009 in any concrete way (outside of my obsessive financial planning- which also hit an existential crisis: how many dependents go into our assumptions? what about a college fund? we started one, but it was half-hearted and a little thin to start). Our whole over-doing it with toys and books had a certain urgency, with the dark underlying thoughts of impending silence. Where my girlfriends were buying clothes a year in advance at clearance sales, I did not have the heart to shop for things that might go unused. Now we are paying for our prudence, wading ruefully through trains and puzzles clogging the living room, finding all his pants have become high-waters, reassessing the thinly funded pre-school saving. Now we are scheduling pre-school tours (my god, they are expensive!) and re-prioritizing home rehab/maintenance projects. I am dreading the trip to Ann Arbor; they just royally mess with the kid's sleep habits. But excited for Bo to spend the day with his GungGung and PoPo. I am being scolded for not dressing the boy in clothes that fit, but find delight in the good fortune of everyday parenting that I was warned would not be ours to have.

As usual, our Xmas cards will be late. I'll just have to post and send e-cards this year. Or something. I admit, if it weren't for our desire to show Umich how well Bo was doing, the last 2 years' cards may never have been sent at all. The same feeling is probably driving the production of this year's, too.

These pix are from our visit with the F-squared family in Hawaii. They are so awesome. We are so glad we got to spend as much time with them as we did!

Bringing out My Best Me

2009-12-18T16:30:00.002-05:00

Hawaii is sunny and warm. The days are full of crisp contrast between objects and blue sky. This surreal sense of optimism-made-flesh seemed to have a somnomulent effect on me. It was just a dreamstate. A week-long dream. The hospital on the otherhand is a manmade environment of highflow HEPA air, drying and cold. Staff working on 12-hour shifts and artificial lights. I am at a heightened level of awareness. Those monthly infusions remind me of the dread at being admitted urgently or emergently for unidentified distress. I am grumpy, but alert. Thankfully for all of us the 2-hour infusion never went past the 5 hour mark. I was not happy, but happy enough to be going home the same day.

Say Cheese!

2009-12-11T16:01:00.001-05:00

I like watching this one, especially as I brace myself for what Dr. Doom predicted as "it" getting worse before getting better. "It" being Bo's level of discomfort. And the solace comes from the thought that he's gotten rid of all his kidney stones and is on the medication to prevent new ones from forming.

Sunday Morning (10/25) AM, before the wedding

2009-12-10T15:40:00.003-05:00

The good news is that huge stone that had been banging around his kidney is no longer there. In fact, there was no evidence of stones at all in the ultrasound he had yesterday (was that really just yesterday?!). The bad news is that we think he is in the process of passing it, which explains the sudden increase in reflux that kept us all up the last few nights. But thankfully, that is tapering and we are all catching up on sleep. And more importantly, the dude is feeling much better.

As usual, Dr. Doom was as doomful as he could manage. He didn't even mention the fact that no stones were visualized, just that he thinks it is plugging a duct in that kidney. Way to downplay any good news. Good work. But he was totally amenable to contacting the guy in Detroit for us (who might have suggestions regarding monitoring Bo's bone density and maybe, please, maybe, some solutions?). In fact, this was the least tearful or anxiety inducing visit we've ever had with this group. Bo was downright cheerful. And with as much doom as he could muster, he had to concede that "Bo is not a sick kid." Say it with me: Miracle! This was the first visit he didn't insist that transplant was our eventual fate. He didn't mention it at all.

But we had called in a panic about all the throwing up at 5pm Tuesday night, and got an ultrasound appointment for 9:45am the next day AND a clinic appointment with Dr. Doom at 10:30am. Doomful, yes. But also reassuringly dedicated. I send him Koo's info that afternoon and he drafted and sent his query on our behalf as of today. Compassion, dedication and love. Seriously, if this guy moves, we will have to follow.

Santa, Candles and Rodney Reindeer

2009-12-07T14:29:00.002-05:00

There is a carousel in the mall, but the minimum age is 4yrs. We're not so much the consumers, but we're already grasping at straws for what to do in the evenings to get out of the house, now that it is getting dark so early, and now that Bo is napping like a toddler (one monster nap that consumes the bulk of the afternoon). Fortunately, we have Rodney the Reindeer (a book given to Bo by one of our fave family members, thank you!). I hope he helps take the sting out of being "too little, right now." This book has also made the prosepect of Santa and reindeer especially appealing this year. Hopefully, Bo's sleep schedule cooperates and we can get to the Xmas tree farm that has both this weekend (wooHoo!).

Cruising

2009-12-04T12:11:00.000-05:00

Trains Trains Trains

2009-12-03T09:05:00.000-05:00

Working on the Mac

2009-11-27T10:53:00.002-05:00

Thanksgiving

2009-11-24T14:00:00.001-05:00

Watching Thomas DVD's after work.

Studying Thomas

2009-11-23T15:28:00.001-05:00

People take their reading very seriously.

The 2nd of 2 Casts

2009-11-20T13:27:00.002-05:00

The second of 2 casts was blue. It was removed less than 24 hours before our trip to Hawaii. Here at DeVos Children's Hospital, he is getting a pamidronate infusion, watching Thomas the Tank Engine DVDs (thank you Child Life!) and mugging for the camera in his Pensacola Beach Tee (thank you, Grandpa Bruce!)

IEPs and 504s (IHP, too?)

2009-11-19T10:27:00.002-05:00

So the bad news is that Bo's teachers will no longer be coming to the house and he will no longer be eligible for tutoring. The good news is because at our annual IEP assessment, it was determined that he had met and exceeded all his goals and he is now academically at or above the skills expected for his age. WooHOO! However, because of the gross motor set-backs resulting from his broken leg, he still has some catching up to do in that area, and he will continue to get PT services for that area of development. On a PT note, he continues to make strides in feeding clinic, showing greater tolerance for tooth brushing, and we are setting the goal of complete tooth brushing in 3 months.

We were able to get his H1N1 from the pedi, too. Hooray! Bo was not too happy about that, but quickly came around when I found the reward sticker stash. He's starting to express new ideas, not just what he literally sees, and not just parroting back what he hears. It's pretty hilarious. We are so blessed.

View of 1st cast

2009-11-17T13:59:00.001-05:00

More Stills from Hesston

2009-11-16T12:50:00.001-05:00

Stills from Hesston

2009-11-16T11:57:00.001-05:00

At Hesston Steam Museum (Labor Day Weekend)

2009-11-13T10:54:00.003-05:00

Heartbreak Hill

2009-11-06T12:46:00.003-05:00

One of the beloved children I follow; suffering is coming to an end. Send them your energy, your prayers and your love. An unimaginably heartbreaking day. www.gavinowens.com

Breaking Radio Silence

2009-10-29T00:16:00.001-04:00

We wanted to surprise my sister at her wedding, because she was essentially trying to elope, but wanted my parents there. So to preserve the surprise, I couldn't bring myself to update in the fear of spoiling the surprise. We successfully surprised the bride and groom, and got Bo to Hawaii and back in one piece! The only downside was that I ended up getting h1n1, but thankfully it was mild for most of the time I was ill. Still recovering in Michigan, but delighted that we had such a successful long distance trip. Bo's cast came off less than 24 hours before our departing flight. What a crazy month.

Killing Me Softly with Raffi

2009-10-12T13:53:00.002-04:00

We're a little behind on cool music for kids. My girlfriend has been feeding me her children's hand-me-downs culled from their collections while they sleep. I suspect she gets rid of, ahem, gifts, these gems to me because they have caused her enough brain damage, I mean, joy. Her boys are 9 and 5, so some stuff is as much as a decade behind. This, apparently, has no effect on Bo. He loves Raffi. Did I mention how much Bo loves Raffi? And the Wiggles. And Wonder Pets, who I thought I'd love because there is a duck named Ming-Ming. Except I discovered said duck has a "cute, childish" speech impediment. I wuv dat. No, wee-wee. I wuv it. Without music, driving the 100 miles to my parents would be hell. So, here's to you, Raffi!

And thank you, Ms. J for the Percy and James trains. Yes, I know all their names.

Baby Aunt

2009-10-09T14:25:00.002-04:00

Bo's great aunt, my mother's only sister, passed away suddenly this week. Not enough tears were shed. Are they ever? She would have turned 59 in November. There is not enough solace in the world to comfort the unmooring of reality.

Ready to Celebrate

2009-10-02T16:12:00.001-04:00

My self-imposed travel restriction ends next week. I just feel so relieved and joyful. Still a few things to wrap up before the finish. But so close. Bo will be out of his cast in 3 more weeks and we will celebrate that, too.

Love Gramma

2009-10-01T10:45:00.002-04:00

This and the following (previous post) pix are from August visit to Great Gramma's and a campsite nearby.

More Face!

Overdue Update

2009-10-01T10:31:00.002-04:00

Bo got his new blue cast Tuesday. He was not a fan of the cast removal process. A motorized pizza cutter attached to a vacuum cleaner that sounds like a muscle car. And even though the x-ray didn't hurt and we talked about it before hand, this was also not a desired event. Nonetheless, his tears all dried up the moment the worst was over and said, "all done!" The nurses gave him a ton of toys and a Thomas Train sticker. We will return for a follow-up in 3 weeks, and hopefully that will be then end of that.

Yesterday we spent the bulk of the day on 7South at DeVos in Grand Rapids for observation during infusion of Pamidronate (the bisphosphonate product that should help keep the calcium in his blood so the bones can grab it. If it works, then we will add an additional IV medication that will actually drive the calcium from the blood into the bones (a thiazide). The infusion was uneventful (yay) and we just watched a ton of Tommy Train vids, played in the playroom and hung out. The Nephrologist is such a gem, and I appreciate his care, knowledge and intelligence more with each clinic. The GI doc had clinic today and could not get away to see Bo, but sent her nurse. But since she and the neph are in close contact, it's all good. We will come back for clinic with both in 3 months.

Looking Through the Hole in my Heart

2009-09-22T15:18:00.004-04:00

I told my friend who is going through the rough patch that I had a hole blown into my heart a few years ago. And just when I think it's healing a surprising reality snags it back open and just that little bit more. The world through this window is full of magic, miracles and angels. I want him to look through the hole in his heart and see the all the angels with holes in their hearts surrounding us, too. Magic doesn't just fly into your heart. Windows into other worlds don't just open to your eyes. The magic winds that brought our friend back to us blew a hole in his heart, too. It is the only thing I am ever greedy for anymore.

Too Many People

2009-09-17T22:33:00.001-04:00

Our house today saw: mother in law, contractor, appliance guy, 2 teachers, 1 new nurse, father in law, neighbor, us. Too many people, not enough napping = early bedtime. Aside from no-nap, Bo was in high spirits.

Good News from Sir Topham Foot!

2009-09-16T15:05:00.003-04:00

The best news possible: the break is expected to heal like any 2 y.o, and is not expected to cause any problems with his growth; and we are accelerating our plans to start Bo on the Pamindronate (bisphosphonate infusion that will drive Calcium into the bones) by a couple weeks. The initial acute pain is subsiding and STF is getting inundated with hours of Thomas and Friends. I never thought I'd sit my kid in front of the TV for hours of undisputed entertainment. But then, I never thought watching him eat a cheese puff would bring me to tears of joy.

I can do nothing but surrender to the strange, joyful and unpredictable blur that is Now.

Working the Phones

2009-09-15T00:10:00.002-04:00

I worked the phones today, calling: nephrology no less than half a dozen times, orthopedic surgery 2x, GI 2x, primary insurance, secondary insurance 3x, infusion company, nursing company 5x, kindermusik teacher, music together teacher, children's boston billing, appliance guys for dishwasher and fridge, salon for hair appt, Bo's godfather for update, my parents, my sister and returning other calls. These are 2 of a 3 part series.

we see the "real doctor" tomorrow, as we only saw his resident in the ER on Saturday.

Broken leg?!

2009-09-13T19:08:00.001-04:00

You heard it right. Fractured both bones below the knee. Cast from above the knee to toe. Hopefully get into the ortho's Monday and have a plan from there.

Wrastling with Tio from our trip to Chicago in July.

Situation Normal

2009-09-11T15:48:00.002-04:00

We did go to Indiana (82 miles from here) to see the steam museum http://www.hesston.org/ on labor day. It was a hoot. Although I reinjured my ankle. Which made everyone mad. And tense. Because Bo was also not doing so great. Although he did enjoy the day.

At first I thought it was because we forgot his second dose of Previcid 2 days in a row. Then I thought maybe he had a site infection brewing. There have been a rash of them in the kids with central lines community, and his site was a little red, on top of his scratching at it. Or because of it? Then we thought maybe he was passing kidney stones? Well, either way, he started throwing up Sunday night (5x), and got worse Monday (every hour! Jose is a champ). Tuesday less but still too much for us to be happy (5x). Wednesday, he had thrown up 3x before lunch. I was on the horn with GI and nephrology. And we went up to GR for an ultrasound, additional blood serum testing (aluminum, uric acid, and I suspect calcium in a few different forms). His nurse dropped of some pee to the local hospital to run a urine study.

At this point, the most reasonable assumption is that it's kidney related. Either the allopuranol is working and the stone is moving around and hopefully getting smaller. Or it's not working and it's getting bigger. From the imaging perspective, they did not see any additional stones from August, nor growth from that big one in the left kidney. From the blood study, the uric acid level has decreased. We are still waiting to hear the results of the urine study, but 2 out of 3 leads us to believe that... wait for it... the orally administered allopuranol is working!! Even if its efficacy isn't as high as a typical kid, it sure beats new stones forming. Okay, so we wait for the urine studies to come back and go in to see the docs in a couple weeks.

Last night he only got up once. So I'm hoping we're on the tail end of this disturbance, and that the allopuranol can do its thing without additional pain. And to reward those of you waiting patiently for pix and updates, here are some vimeos. And I am still under the gun. So unless something significant changes, you may see new images, but not much else for at least a few weeks.

Deliciousness

2009-08-28T10:15:00.002-04:00

The first thing I hear is, "ah la so mah!" as a small soft hand reaches over to turn my face to his. "I love you so much, too, Bo." What a way to start the day. Even with the rain. It doesn't seem so gloomy as luscious and delicious. I start my day in the green haze of bursting leaves and grass and rain, covered in the sweetness of my darling family. I can't wait to see the rest of the family in the afternoon, bursting with succulence.

Comfy!

2009-08-22T12:06:00.003-04:00

Bo loves his new big boy bed. It is so comfy, he just passes out as soon as you get him in it. But the transition isn't quite complete, as he has been waking up once each night, and in light of the kidney situation, I haven't had the heart to insist on self-soothing. So there's usually a parent squeezed in with him upon waking each morning. I have not regretting springing on a super-good mattress at all these last 2 weeks. I wake up refreshed, even with a 2-year old draped across my head.

Busy Busy

2009-08-13T11:24:00.002-04:00

Bo's big boy bed gets installed tomorrow. Woohoo! AND just saw an effective gene therapy http://www.nei.nih.gov/lca/blindness.asp Maybe, maybe this will get developed and available for Bo and other single-gene diseases in the next 10 years?

I'm swamped with work through the end of October, so updates will be fewer and farther between.

Conclusion: Left Kidney Stone

2009-08-06T23:17:00.006-04:00

So Dr. Doom wanted to see Bo as soon as we told him what was going on Tuesday night. Sorry to keep you all hanging. And we went up for a morning of hospital stuff Wednesday: UltraSound, X-ray and clinic with said Dr. Doom. Although he seems happiest issuing statements of Doom, Jose and I agree that he is probably the best dr Bo has, besides Dr. Puder and Gura (Omegaven team from Boston). Doom runs the pediatric nephrology, dialysis and transplant centers at DeVos, so he's used to complicated kids whose kidneys are part of a multi-system event.

Unfortunately, this doesn't change the fact that I always leave this clinic tearful and stressed out.

So Bo has a stone in his left kidney that had shrunk from winter through spring, but has since grown again. The plan is to attack it with an oral drug called allopuranol, despite his MID. Since we know the Versed, previcid, Tylenol and Motrin work orally, we're going to try this. And if it works (please, God!), then we can start addressing the calcium issues (always a risk for TPN-dependent kids).

They've increased the volume in his bag, and I'm not even going to ask if its temporary, or ask again about weaning hours. I realize now, that if he's stable at 20 hours, and he's a 20 hour guy, that's certainly better than being in pain and retching and not sleeping and the general misery that all represents.

So, that's life.

Sleep Deprivation is a Crime Against Humanity, pt 2

2009-08-03T21:22:00.004-04:00

Well, the good news is that he didn't spike any fevers in the 72 hours after his line repair. The bad news is that he has been on nap-strike all week. At first we thought it was too much vacation time with both parents followed by both of us at work full days, then he started to have some pink in his diaper and patting himself saying, "peanut!"

Then I finally asked, "Does your peanut hurt?"

"Okay." Which is his way of saying yes.

So we're still monitoring for fever, will run some blood tests tomorrow, and run some extra fluid tonight. It could be those pesky stones that he's just now passing, or a UTI, or a (God forbid) line infection presenting like a UTI. Nephrology, pediatricians, home care nurses and pharmacy are all apprised of the situation. If we're lucky, it's one of the 1st 2 options. And once it is resolved, our good sleeper will return to us. But... I can't shake the sensation that a line break followed by "off" behavior cannot truly be a coincidence.

Send us good vibes. And more sleep, if you can! Above: sleeping on the plane to Oley. Note: plane sleeping is not good quality sleep. But I'll take it over what we've been getting this week.

Boring is Good. Therefore...

2009-07-30T22:21:00.005-04:00

I'm getting double vision doing this task at work and I feel this vibration through my keyboard. Looking over my post-its pile, I see my cell blinking and shimmeying across my desk. Bother. I see Jose's number and sigh as I take off my headphones.

"What." I say flatly. It's just past 4. I told him it'd be between four and five, closer to five. "Yes. What is it?"

"What are you doing?" He asks.

"I'm winding down."

"When are you coming home?"

"Shortly. I said between 4 and 5."

"Well, Bo's line has a hole in it."

Shit. Can't think. Can't hear anything. Lights get brighter. Must be my eyes dilating. "I'm shutting down my machine. I'll be there shortly."

"Should we meet you at the ER or go to Leinwand's?" he asks as I'm googling Bronson Leinwand thinking, I can see myself handling his card and putting it down by the card catalog right by the door, even just last night. Why didn't I slip it into my handbag instead? Why? Was I feeling overly confident? Smug even?

"I'm calling them right now. I'll let you know what they decide." As I hang up, I shoot an email to my group, vaguely urgent, but no "!" or flag, poor punctuation, probably incoherent. Command the machine to shut down, and wait on hold for the surgeon to tell us where he will see us. I feel my eyes stinging. Where did those fucking tears come from. Come on, give me a break. It's close enough to the end of the day, why am I getting that look? Who cares. Get to the car. Get a file in case I need stuff to do. Movemovemove. Shit, forgot all those printouts for working at home...

The minute I step in the door, I get a wall of words. Why is she talking in Aramaic. Why aren't they in the car and turned around in the drive?

We bring our own sterile-packaged repair kit. Bo gets a dose of oral sedative (Versed). He gets loopy and plays with Tom Trains in the playroom on the peds floor as we wait for the surgeon to come back. No one wants him screaming the way he did last time. I explain that his broviac is broken and Dr. Downing is going to fix it.

"Dah Doew-nee."

"That's right, Dr. Downing."

We get home in time for some Thomas & Friends and a decent bedtime.

So... it goes.

Chicago Update

2009-07-29T16:19:00.003-04:00

http://www.feldenkrais-shelhav.com/home_en.html
This link is if you want to know more about Child'Space than it is a Feldenkrais musculoskeletal experiential type of physical therapy for children with developmental delays, and for encouraging higher skills in typically developing children.

We spent a long weekend in Chicago at Tio and Auntie's in Andersonville. THANK YOU! Bo napped well the whole 5 days/4 nights, but woke once each of the 1st 2 nights. Then when we got home, he decided on a nap boycott (!). I know.

He is working on jumping, hopping, skipping and walking up and down stairs. He's still climbing stairs on all 4s and going down them backwards, likewise. Other milestones seem to be on track or ahead. YAY!

We weren't successful in our recent attempt to wean his hours. We jumped back to 18 from 20 hours. So we will try again in a few weeks to wean just by a half hour this time. I was quite disheartened at first and felt myself sliding back into depression, but with some carb-loading, meditation, prayer and lovingkindness from friends and family, I think I turned that back around.

I discovered a Saint who likes to heal children through what can only be described as a destined meeting: Padre Pio. So if you feel up to praying for Bo, or if you've already been doing so, asking for his intercession and a cure would be appreciated.

Since Bo hasn't been putting on weight or height, we will get an endocrinologist consult Friday to see if his treatment is missing something. We're also going to try to catch the sp4449 steam engine on its way home to Oregon, that day, but the schedule is hard to determine.

more pix tonight!

The Evil Train Table

2009-07-28T20:48:00.002-04:00

Love/hate relationship with the Train Table at B&N. So many trains, and so many products...

2nd haircut following the 3 hot days we had all summer

2009-07-20T18:13:00.002-04:00

I follow the kids on the right so closely, I can see them in my sleep. Maybe it is obsessive. I should ask my counselor what she thinks. Except I don't think my behavior would change regardless of her feedback. But each of their triumphs give me a little more hope and each of their setbacks reminds me what is at stake.

Our friends from Wisconsin are finally home.

And it makes me want to go and prune the hell out of my fb page, and all the insidious "before" it represents. But. I can't bring myself to do it. Because the before and the after are still the same me. So I work on reconciliation.

Father Ken's homily somehow made that word both much bigger and much more accessible than my jumbled thoughts here. But I left mass convinced that it was something worth trying. Something I may not succeed at, but something worth doing.

Wolverine!

2009-07-19T17:57:00.002-04:00

All done.

2 Birthday Parties for 2 year old Bo

2009-07-18T18:06:00.002-04:00

These are pix from Bo's 2 birthday parties on and the weekend after his birthday (June 3).

Oley Minutes, Part 1 (no sterile dressings in EU?!)

2009-07-09T11:49:00.002-04:00

I ran into these Dutch researcher who basically reduced line infections to near zero with Taurilidine locks. Their paper was presented at Oley, received the research award. This looks like a good option for those of us either: 1) not a fan of ethanol and its corrosive effects on lines, 2) not a fan of heparin and its freaky possible contaminants, or 3) still experiencing too many line infections with whatever protocol to be happy.

But more interesting to me was the conversation I had with them regarding AV fistulas and dressings. Apparently, none of their 100+ TPN-dependent patients (The Dutch population is in total ~16MM) use dressings at all. They claim that they have a much lower rate of tunnel infections because of this. Yes, the line is just hanging out there in the breeze, or shower, or pool, or whatever (!). I know, right?

And not to sound like I'm maligning the UK, but I've been in contact with a family from there who was trained to clean the site with normal saline and then stick a tegaderm on top. The child is 8 months old and has had 5 site infections. Sounds like the worst of both worlds to me. Yikes.

And as for AV fistula, they say that it's up to the patient to decide if they want a port, a broviac or an AV fistula, but that the fistulas have a lower rate of line infection, and that when the needle is removed for the day, it's just, well the arm that is there. But that the decision really depends on the patient's dexterity with the other hand and so forth.

Quiet = Good

2009-07-08T23:07:00.002-04:00

I'm still digesting and savoring the sweet Oley week we had. I'll post my minutes here in a formal blog in the next week or so. Let me just say, that I had a weirdly resonant moment when someone asked me if I learned alot, and what. I flashed back to a job interview for a project manager position and one of the team members asked me what the most important time in a meeting was. Even though I had never been a PM, I instinctively said the gathering and commencement moments before and after the formal meeting, "That's where you hear the most important information, see the most important interactions (verbally and in body language), and sense the life of the project." Still true.

Spending time with the Cyrs, the Brogans, the Nobles and all the amazing long-timers both young and old was uplifting. I nearly cried into the lap of a younger hipster with a G-tube. He was so self-sufficient, so matter of fact, so aloof, yet so compassionate. Someone I hope Bo will be able to look up to for a long time.

Rennie and Jennie kept Bo amused so I could attack multiple sessions each day. And even though it poured rain every day but the last, with threats of hurricanes, and even though we ate way more hotel food than I had hoped, we all had an amazing time. Bo was already aware that the other attendees had lines of their own. He pointed to his line and showed it off to a 15 year old, who in turn, showed Bo his line. So he had no interest in the daycare (too young for it to be amusing for long)? He had fun chasing Rennie and Jennie. He slept through the night each night, took nice naps daily and only cried for a few minutes for each airplane's descent. Good Boy!

Summer ramp up has kept us busy. 4th weekend with my parents, this weekend is my niece's 3rd birthday and family from Detroit and NY are visiting here, Bo's godmother and her husband will breeze by the following week (which will be a grueling combination of kowtowing and chauffering our Japanese agent and customers), and the following week is a Childs'pace workshop in Chicago. Whew! It'll practically be August by then. Where did the summer go?!

Oley, Here We Come!

2009-06-27T15:28:00.003-04:00

We're headed to the Oley conference which is in St Pete's, FL this year. And depending on how Bo travels, we plan to be in A2 for the 4th weekend. It's going to be extremely hot, and Bo gets overheated very easily, so I'm a bit nervous. But we buzzed his hair off (these show of his now defunct Bruce Lee mullet), and it seems to help. The heatwave here has lightened up a bit and instead of unbearable, it's just a little hot at midday.

Medically, Bo remains stable (knock wood). His GI was very pleased and said he's just on maintenance right now. The nephrologist said as much in March. Bo will see both again in October. His feeding therapist is making very nice progress with his toothbrushing goals, and we look forward to more Feldenkrais lessons in July at a Childs'pace workshop (if not sooner with his teacher). His gross motor skills are still lagging, but everything else seems good!

On the home front, the garage is now standing tall- we will re-roof it next year. The window replacement project was itself replaced with a window trim/sill rehab project (much more affordable, thank goodness, and justified with an energy audit). And we've added an insulation project to the tree trimming project for this fall. Yikes. But considering we did nothing to the house these last 2 years while we were so focused on Bo's health, I guess it's time to pay the piper (the home maintenance piper). Sigh.

We celebrated Father's Day Eve at the 4 diamond restaurant in town (yum!) and drove to A2 on the fly to spend time with both our fathers. Can't wait to see Jose's brother and his partner in Florida! And finally meet all our cyberfriends in person!!

youtube addict

2009-06-25T14:21:00.001-04:00

youtube addiction from Kinn-Ming Chan de Velarde on Vimeo.

Dog Study (mucosal transplant) and, Pig (stomach and intestine)

2009-06-23T14:33:00.004-04:00

Correcting myself, Stelzner's group recently published a paper where dog's were the animal model for curing something like MID (problems with the mucosa), "Intestinal Stem Cell Organoid Transplantation Generates Neomucosa in Dogs." They had cured rats with malabsorption with this experimental design several years ago, and just published this dog study. The next step might be pigs, unless they jumped right into people, which they can now do, since Lgr5 was finally identified as the human intestinal stem cell (these other animal models have well established intestinal stem cell population).

The pig study was a triumph for group effort from Mass Gen and UCLA, "Tissue-Engineered Small Intestine and Stomach Form from Autologous Tissue in a Preclinical Large Animal Model." Basically, mashed up intestinal cells, schmeared this paste onto a bioscaffold they stuck into the pigs' belly cavity, and ta-da! Stomach and intestines formed, including muscle and nerve structure.