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?