Teething, for real!

Bo has been waking up in the middle of the night from a dead sleep to full-scream crying. He didn't even do this with kidney stones. But it's nice to know it's just his teeth (the 2 bottom ones). And he goes right back to sleep after I pick him up. What a good boy!

He's been saying "Good," and "Dada" for a couple months. He is finally saying Mamma, with great clarity. And clapping! Jumping in his Johnny Jumper! Waving his hands up and down. He even tipped the scale just past 18lbs. So much has happened in the last few days.

Oh, look at those angry red eyebrows! Poor little mouth. Dr. Puder was trying to convince me that Bo would really get his teeth, and that he'd never heard of the genetic condition that resulted in a toothless baby. I guess he was right again. I was doubtful, I admit.

Reality Check in the Face of Cuteness, Literally

I know I'm biased, but I just cannot get over how cute this guy is. It's simply unbelievable. But I guess it's the same incredulity at Bo's cuteness that keeps me full of gratitude, and angst. While he is truly a delight, intelligent and literary, he remains medically fragile. This is the reality of Bo's condition. I try to keep all the "typically developing" aspects of Bo's progress highlighted in my mind and Bo's. I don't want him to put his condition in front of him, as if it were bigger or more important than he is. I certainly don't want him to have to define himself by his condition.

But, I have to emphasize to the authorities that his progress is truly the unexpected for a medically complicated child.

And I try to convince myself that while I emphasize it to those officials, it is only a minor thing in Bo's life. But, it's not. And he has lost all interest in eating. And I am beside myself with grief and worry. It's probably because they increased the fluid volume of his TPN, which is good, because all the kidney issues have seemed to resolve themselves with this change. But now he doesn't want to eat. And I know it's more important that his kidneys function than have him love eggplant. But I just can't get over the notion that eating is the only road open to us for another miracle. That second miracle that I feel guilty praying for, but that I can't help but lift my heart up to.

More Face, Less Talk

Bush was right about the stimulus package, like Clausius was right about Entropy

Restrained optimism and the 2007 tax rebate/stimulus package have conspired against my natural state of frugality. I went online and bought a bunch of side-snap/kimono-style onesies for Bo.

I spend a lot of my time these days lurking on the blogs of other short gut kids. It gives me a sense of community and takes the edge off the isolation I feel in my real life. I follow their ups and downs; their line infections and high jinx. Sometimes they are blessed with miracles of their own: Omegaven, naturally decreasing bilirubin, no longer necessary TPN. With each tragedy, my heart breaks a little more, and with each miracle I learn to embrace the unknown within.

I spent my entire pregnancy reading the saddest books I could find. Every night, Jose would rub my swollen legs and I would cry until my eyes were swollen. Then Jose would read another segment from "Journey to the West" to Bo, and we would fall asleep, so happy, to the kicks and somersaults of Bo-in-utero.

After we were given his diagnosis, I would cry, wishing he was still in there, safe and warm, free from his disease. Just another baby. And all those months before Omegaven, just waiting and watching and wondering how many days or months we had left together, I would wonder if maybe it was intuition that had drawn me to books like, "The Year of Magical Thinking," where I had to ask myself what it would take to endure such grief. I thought a lot about entropy.

The second law of thermodynamics is: entropy is ever increasing. And the myth around its author's clarity is that his mother and wife died in the year before he wrote it. And I would think about the dark place you would have to be to conclude that this was more than a theory, but in fact something that could be proven mathematically, and eternally. That forever and ever, things fall apart, more and more. Amen.

So now I read about some child's miracle tempered with another's demise, and I am humbled. And I am awed. And I receive both the blessings of hope and compassion, wondering if Bo's Omegaven is the only miracle we get, or if we can hope for more. Knowing that my greedy optimism is something that is both shaming in its greed, but relentless in its need. Knowing that entropy is ever increasing, but that its march forward is also marked by the unmappable lulls and edies of each moment of this life.

Bo's first 2 teeth came through, Monday!

Bath is a four-letter word

He doesn't always cry when he takes a bath. And he doesn't always spew his milk after he nurses. In fact, after that last stone/episode at the end of March, he did really well keeping stuff down and building back his appetite from nothing. But, he's not back up to his highest volume tolerance, and he's started up with the spewing again. Though, thankfully we haven't had to revisit the repeated episodes of gagging, retching and vomiting.

I was supposed to go to bed early tonight, but between a recently discovered timesuck (Facebook), and wanting to post a relatively new picture, it's time for my real bedtime and long past my "early" bedtime.

Bo is gaining weight nicely and is very close to the 17lb mark (16.93lbs as of this morning)!

Waking Up, Slowly...

Great news! I just talked to our Medicaid case manager, and she said that Bo's Medicaid goes until January 2009! So we have way more time than I thought, before we have to apply for the TEFRA/Katie Beckett Waiver. Whew. That makes 6 case managers: primary insurance (BCBS), secondary (CSHC), Medicaid, home infusion, nursing, DeVos Children's. Bo is so blessed to have so many competent professionals looking out for him.

Dualities

I am both Chinese, and American. I am both deeply spiritual and skeptical. I am both a mother and a patient advocate. Bo is both a baby, and a chronically ill person. While mentally understanding and emotionally accepting the dualities that life presents is part of being an evolved human being, that last one pains me more than the others. Maybe I have already had plenty of time to emotionally work through the others. But I imagine that last one will leave me feeling sore no matter how many months have elapsed. I hate to think about it when we have had the restorative weekend together as a family that we got to enjoy these last few days, but it is a reality that I have to insist on detailing when reapplying for medicaid.

But this weekend, if only for two seemingly endless days, we got to act like a carefree family. We had a wonderful visit with Gramma Maggie and Grampa Bruce (thanks for the new book, Auntie Heathie!), had an impromptu wine and cheese party after the baby went to bed, met a new family (potential friends) for brunch, and took a brisk walk to the store on a sunny Sunday afternoon.