BFFs

In the lastest thumbwar between the GI and the nephrologist, the GI won. It was the more conservative call of the 2, and really a pretty reasonable compromise. Nephrology suggested increasing the volume and decreasing the cycle time of his TPN. Instead, we are staying steady with both time and volume of TPN (was really dreading an increase of volume), and a decrease of calories. While the cheeks are cute, he is simply too heavy for his height. So, we will see what we see.

Miracles Like Bo

Bo, of course, is the person who pitched a tent in my heart, just like the miracle of Christmas has pitched its tent in our collective culture. This miracle is here, living among us, whether we believe it or not. He's here. And it's because of all the greater direct miracles which I've already chronicled, and the supporting, or more easily overlooked acts which together make the miracle of an environment that can continue to sustain the likes of him (Bo).

I am no wonderwoman. I would not be the mother, worker, wife or daughter you see on these pages without a little help from: Jose, Bo's incredible nurse who is family to us, my chosen family, my coworkers, my parents, my sisters, the support networks that sustain and nourish them, antidepressants that keep my sleep schedule more manageable, my therapist who is helping me through this new territory, the team of healers and professionals who have committed to sustaining and supporting Bo, and the many scientists, doctors and nurses who may never know us, but whose work make Bo's life possible.

Happy Christmas.

Holiday Cheer!

Some of Bo's favorite people. The feeling is not always mutual (see Bumper Dog, aka Bahmpoo Dahgoo Dahgoo). Bo continues searching the guest bedroom for Po-Po!

Early Christmas with the Chans

Bo cannot wait to see all the Chans! He had appointments from 9:30am-1PM in Grand Rapids today. The nephrologists and the GI were very happy with the trend of perfect labs. We are going to try going back down to 18 hour cycles. The only change is increasing his volume to keep up with his size, and to see if flagyl will help with the reflux.

Packing all the medicine, auxiliary supplies and baby accouterments has taken me over an hour and counting. Still need to throw in my own stuff! Jose is exchanging diapers at the service. It is so awesome having them in town!

Desperately Seeking Po-Po

Bo had his first visit with his alternative medicine doc, and his first teacher and OT visits today. The reports were all glowing, and that everyone fell in love with him. And even though he had a rotten night last night, he was a prince among babies all day. At the end of the day, he was missing his Po-Po and kept walking into the guest room calling out for her. I had to keep telling him that we would see her, "tomorrow, tomorrow, I promise!"

Kissy Face & Belated Halloween Post

Bo has been having reflux on and off since he was only 3 months old, but since November it really ramped up to almost once an hour. We increased the thickness of his wedge to a medical wedge with 7" height, added a cool mist humidifier to his sleeping environment (thanks, Yee Yee-Ma!), and had the Zantac increased in his bag. So his episodes have decreased both in volume and frequency in the night from a high of 12x/night to 3-6x/night (a little more than we are used to). We were at the end of our ropes at its worst. The walking dead, really. And now just the sleeping paranoid.

I'm terrified of going to sleep earlier than midnight, because waking up to a coughing and gagging baby causes an almost visceral shock of pain in my head and heart. I'd rather be exhausted and awake when it happens. But then, I spend the better part of my day panting from the sleepiness and terror. God knows the last thing I need to do is have him get pneumonia in the middle of flu season.

And between weaning himself, teeth slow to break-through, kidney stones and dehydration, Bo has developed the oral aversion we anticipated with dread. One step forward and two steps back is what it feels like sometimes. I know that he's relatively healthy and developing, and in the grand scheme it really is more like two steps forward, one step back. But it doesn't always feel that way. Whereas before he would suck down an ounce of milk or slurp up a half an ounce of yogurt or rice cereal, now it's all we can do just to get him to taste things.

On a happier note, his days are filled with walking with assistance, playgroups and a ramp-up of at-home visits. He goes to playgroup with some local babies on Wednesdays (usually in the morning), visits the disco (discovery) center and visits the babies there on Tuesday and Thursday afternoons, goes to the playgroup for FIT (families, infants and toddlers) sponsored by the school district at the school adjacent to our neighborhood Tuesday and Wednesday mornings, gets a visit from his visiting nurse on Sunday mornings, goes to feeding clinic Monday afternoons, drops into one of the 2 libraries closest to home at least once in the week, and has either his teacher or physical therapist visit each week (they alternate weeks) and gets a visit from speech therapy and occupational therapy every 6 weeks or monthly. He goes to see his specialists in Grand Rapids every other month. Most days there are at least two things going on and on the weekends we stay busy with visiting or getting visited by family. And always, there are the books. The Wheels on the Bus is the current favorite.

We are so rich. Rich with family, love, blessings... Family chosen and given.

Thanks Giving

This year's Thanksgiving missive was delayed to accommodate Bo's 18 month birthday. I know it sounds superstitious coming from a highly trained scientist, but I didn't want to get all thankful for something that had not yet happened. While Bo continues to grow and develop despite his condition, I gladly swim in the River of Denial.
Although I've gone so far as to forget to hook him up to his artificial nutrition. No, seriously. That is serious denial. I'm too superstitious to jinx his 18 month milestone by celebrating it without at least a week between it and posting about it.
I just remember asking Anna about the other MID babies she knew or knew of and she wistfully recounted that the only 2 she knew outside of the CA boys were both from Maine, and both passed away by 18 months. So after Bo was born, I had this mantra of birthday milestones: 100 days, 6 months, 9 months, 12 months, 18 months, 2 years, and 3 years (the longest amount of time UMich would acknowledge as a realistic lifespan). And while I am amazed and grateful and happy and my mouth is full of honey, my heart has a bitter root knotted around it. Five milestones down and 2 to go. So much can happen in that time. And maybe after those last 2 we are home free? Free from what? Not from TPN. Not free to get pregnant without a lot of thought and scientific intervention.
In the last 2 years, I lived through an enormous pregnancy, an intense labor and delivery, a devastating neonatal period, and a schitzophrenic infancy. I don't want Bo's toddlerhood to be marked by his mother's melancholy, but how do if face these celebrations with what may seem exaggerated festive emotions when their Janus face is one of escaping death or other unknown tortures?
And the darkest torture that I have endured may have been at the hands of my own hormones. Those first months after Bo's birth, all I wanted to do was get pregnant again. It was so biological and so counter-intuitive. And the thought of never ever being pregnant again. Of having and losing Bo so soon. Of being some crazy old lady who once had a baby. It made me so delirious with grief. It made other pregnancies and babies and family planning sting my heart with the cruelty of sunshine on a sunburn. Too much life. Too much emotion. Too much loss.
Some days I feel more sane, like I can talk sense to myself and come to terms with our situation. Other days, I just want to believe that everything will turn out fine. If I just believe blindly, Bo will miraculously fix that broken gene and we will have more babies who are healthy and unaffected. But that's not faith, it's just wading in the River of Denial. And I have prepared my heart well for the Thanksgiving of this bittersweet. Without Bo there is nothing to be thankful for. With Bo everything for which I give thanks reminds me of the bittersweetness that springs from this River. The River that I now live. The River of Preciousness and Treasure. Bo Tsuen.

Tia Sarah, Prima Violet and Bo

Reading is second to walking these days.

Crammed into the Kitchen Sink

We haven't gotten the nerve up to start giving him baths in the actual bathtub. I fear for my back more than his dressing.

Mommy & Me

Monster Nap in Progress

Bo like the drums, cars, and throwing things. He is such a little dude.

Still Bouncing

Mommy's slipping. I left 4 separate appointments off the calendar. The Passat is in the shop. I can't get ahold of the United Behavioral Health case manager and I'm late returning my US Census form (got an angry roboreminder). But, Bo has plenty of energy and is not into taking his nap today.

Not a Fan of the Swing

Adoring Fans

BFF's

This Hat is TOO SMALL!

Brush teeth 2x/day?!

No pants strikes again. Sometimes buns get a little chappy, and there's nothing like a little "wild and free" time to cure what ails. Plus, who doesn't love squeezing baby buns?

Hats Off!

Gearing up for the winter. We just had our first real snow. Wednesday we'll brave the roads and head to A2 for Thanksgiving Part 2!

Must Get Walkies!

Rockin' the hat-hoodie combo. Both gifts from beloved aunties. As well as the retro wooden wagon. Lovin up the aunties. Mmmmm.

Batman Takes Grand Rapids

He took his first independent steps this weekend at my parents' house. My whole family was there to see it. How cool is that? Bo, our miracle baby, strikes again! An early Thanksgiving to remember. He loves family weekends!

Swingin'

He's swingin'. But not so much lovin' it. He's pretty sensitive to motion. And while I have to admit that he is GOOD in the car, like not crying or screaming, he does get carsick pretty easily. Which is what we will be doing to get to my parents' tomorrow.

Catching Up Slowly

Cold chillin' in DTW on September 21st, waiting for our connection home.

So far so good. We will be in A2 for a long weekend and to celebrate my dad's 70's and an early Thanksgiving with the Chans!

Big Headed Muppet Monster

Bo's head looks bigger than Jose's. Currently this is only an optical illusion. I won't be surprised if it shortly becomes reality.

Warm Days Past (September in Boston)

Bo is going to take off any day now. We are not prepared. These are from our trip to Boston at the end of September. Bo is now almost 26#, 30 inches tall, 49cm head circumference, and learning new words every day. He is a joy.

The 80's Are Back

Mesh asymmetrical vest, no pants.

DeVos Children's Hospital from early September. Seems like a million years ago. We hope to keep it that way.

Cheeks v Nose Recount!

In a race too close to call, we resubmit the data and ask for a recount.

Too Many Teeth!

Yes We Can, and Yes We Did!

Happy Birthday, America! What a gift.

This is what it feels like when all your molars are trying to come in at the same time. Ouch.

Chan Weekend Upcoming!

From my mom's (PoPo's) last visit here. Bo can't wait to see PoPo and GungGung.

His molars are trying to come out, but he's not chewing on hard enough toys. I guess the finger doesn't count.

His IEP is next week. His weight dropped slightly to 50% for age, his height increased slightly to 5% for age and his head, you ask? 85% for age. That's my kid. Big head. Big brains.

Aunt Andy

Andrea Rosenberger, beloved Aunt Andy to Bo, chosen sister, artist, potter, designer, daughter and all around nutter. Strong, professional, driven and responsible. Riotous, literate, inquisitive. We shared a worldview. We are devastated.

We found out that she died from a massive aneurysm this passed weekend. She was the youngest of 3. Her brother passed away several years ago and I think of her heartbroken parents.

The heart is a funny thing. It just keeps breaking.

Glasses!

Bo did great at Feldenkrais lessons today! He is so smart and such a fast learner. I love this guy.

From our August Stay at Bronson

It always takes me a while to recover emotionally from Bo's hospital stays. I always try to keep the blog updated, especially when he is in-patient, and especially about the critical information regarding his health. But I get the classic "hospital hangover." It's this crushing depression that sets in. It's not even like I'm thinking so much about the whatifs, but more the physiological aspect of the sustained surge of adrenaline wearing off, and leaving me exhausted and seratonin-deprived.

But here is Bo, skeptical of being back in the hospital, and me, making a go of it.

Happy Weekend,
Kinn

Beaver Teeth!

His molars are coming in and he actually has more teeth now. But I'm bad mommy and publishing from my archives. Although I will say that I've only been posting chronologically. I'm just behind. What else is new?

We are in Chicago for the second of 2 child'space (Feldenkrais) workshops. Bo responded so beautifully last week that I could not deprive him of the last set of lessons.

Other than his molars causing cysts to form, and all the discomfort around that, Bo remains stable and cheerful, learning new words every day, and increasing his comprehension of language. We are so amazed by this guy's capacity for learning and loving life.

With a heart full of thanks,

Kinn

Weekend Recovery

Sleepy! Bo had a great weekend visiting with family. He loves his cousins so much. They taught him how to dance!

Aunties, Grandparents, and dogs!

On the Murray front, she has been AWOL. Not a very impressive first week on the job. I'm nervous and worried, but am holding off on the worried-sick till the freeze sets in. So far, I believe she is having fun with her freedom.

Despite the Economy, She Found a New Job

Murray is part of the miracles that lift our family up. A friend of a friend was "low on barn cats." But far from burning through cats, theirs is a small hobby farm half an hour south of town with four horses and several acres, a tidy house and lovely family with a few older and special needs cats patrolling the barn and pole barn.

This is her first week on the job, and I miss her dearly, but they were cool with me visiting. So I will go and see my girl next week with treats and maybe some supplys to show my gratitude for a new, animal loving family.

Thank you, God! For even watching out for the least of our furry family.

Feeling So Free

A new tooth has appeared and 3 more have just broken through. Bo is doing great and has been in high spirits. His visit with the nephrologist on Monday was great, and Jose and I met with the maternal/fetal medicine group in town regarding the new findings identifying the MID causing gene. Since the information is so new, and the technology has not been developed for commercial use yet, we are making things up as we go. As per usual, for us.

No More Fever

Must've been a cold. He's still getting too much fluid, by my estimation. But that's way better than not enough. He's a little puffy.

But no more fever, and his antibiotics end today, so that should make his output decrease and his butt feel better.

Can't Wait to See You!

We got to have dinner with the O'Connors Friday night, and the Nwankwos on Saturday. What a great weekend. Although Bo was a bit of a bully and kept plucking the pacifier out of Sam's mouth. Not very nice. We were so excited to meet them; and delighted with how great Sammy s doing, and that they were going to get to fly home and be reunited as a family, too!

We had a crazy busy time getting everybody home yesterday. Bo was a great traveller. He slept through both flights. Passengers and crew both thanked and congratulated me in turn; as if I had anything to do with it.

We were all whipped and had deep sleep in our own beds. While Bo seems less gaggy, he ran a temperature last night, which as recurred this afternoon. So they drew labs and he missed his feeding clinic, again.

My knee-jerk reaction would be to crawl under my desk and hide. But since I am an adult, I will get through my email and go home to do laundry. Sigh.

It never ends.

Back Bay Boston!

We love being in the Back Bay: walking Newbury and Boyleston Streets, watching ducks in the Public Garden and cruising into the Commons, grabbing supplies at Trader Joe's and Walgreens (constantly- what would we do without them?).

This is Bo getting ready for a walk on our dining room table at home. Home! Boston is glamorous in its own preppy way, but home is so much nestier.

Thank you for visiting us, Dawn! And bringing gifts and treats. It is such a blessing and a relief to see a familiar face under these stressful times. Especially a familiar face we haven't seen in 10 years!!

And we even got to see new faces: The O'Conners! We love them already, and are so excited they are flying home the same day we are; Sam's bilis are in the 2's range already!! Hallelujah!

And, we had a great (but 2.5hr long) visit at childrens' for the short gut clinic. I showed Dr. Lo the article in Nature Genetics that identifies the gene that causes MID (published only this past August!); turns out his fellow works for the 1st author on that paper!! And Dr. Lo pulled some strings and got us a consult with one of the nephrologists TOMORROW. Wow. What a day.

Not exactly relaxing, or vacation, but rewards and blessings covering us from head to toe; can't complain.

Bad Mommy

Am I a bad mom for putting random things on Bo's head? But it's so cute! Who can help it? Really?

We are all here, in good health, and happy to be together again.

Anyone in Boston we so callously forgot to contact, please do email, because we really do want to see you.

Love,Kinn

Made it out of the Zoo!

The boys are in DTW laying over! I can't wait to see them!!

I am so not at my best without them. When I got into Boston on Saturday, I was tired and confused. I fell into deep blackness of sleep on both planes, thinking briefly as my subconscious registered the whir of landing gear that I would never be able to rouse myself out of these exhausted naps. Then when I got to the hotel, they couldn't find Bo's medicine. And on Sunday, between conference sessions, I took time out to scream mercilessly on the mailroom boys. Because no one could find Bo's box. Not even the kid who spoke with the pharmacist, and told him that they had it. Not very gracious behavior for a Sunday. I specifically remember missing last mass in favor of fuming a these impotent youth.

God save me from myself.

But thankfully, the box was located before the end of the night, and now we have not one, but TWO refrigerators in the room.

Reunion, Tonight!

Today is my last full day of work. The boys fly in tonight. We've got a crib from the hotel, borrowed some toys, books and a full sized stroller from some close friends, and can't wait to finally be reunited.

The bad news: Murray peed on Bo's luggage when they got home from hospital, yesterday. I am beside myself, as this is really the last chance for her. And it's clear that she does not want to live with us, if the us includes Bo.

More later.

Exhibit Toy

Toys that are not toys. Please see the exhibits presented here.

They are getting discharged today, and should be flying into Boston tomorrow night. I am slowly being poisoned to death by conference food. I think, in the long term interest of everyone involved, I have to shake my frugal dedication to eating the free food, and go find something that was actually grown in the earth.