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.

A Good Laugh!

Someone loves having fun. Sadly, I still have to finish the taxes this weekend, and start down the road to getting Bo's medicaid renewed; which requires a lot of administrative back and forth.

For the blissfully ignorant, Medicaid is usually awarded based on strict income levels, or for the medically needy. The latter case is very rarely approved. But, as we know, Bo is a rare kind of case. So we will petition for that medically needy case. We need the approval to continue our private duty nursing (PDN) beyond August; this is covered by Medicaid, and not Michigan Children's Special Health Care (MCSHC) or our primary insurance, Blue Cross Blue Shield. Although he will most likely get approved for renewal of his secondary insurance from MCSHC, that is entirely separate from Medicaid as far as the PDN is concerned.

No Pants!

Life is not worth living unless you can post a picture of a baby without pants.

It's finally sunny enough for Bo to wear his Frubis, and warm enough to trek around in the Bjorn (which he loves).

He weighed in at 16 and a quarter pounds today! Finally beating Nurse Kathy's scale and tipping well past 16lbs. Plus, we've had two, or maybe even three, nights in a row with peaceful gag-free sleep. And he has been eating without throwing up. I really think we've turned a corner, and am desperately hoping the nephrologist has a sneaky trick up her sleeve to help lower his currently elevated level of Aluminum (the putative source of all the kidney stones and the potential source of calcium deficiency).

And not to get all God-squad on the www, but I had to mention it because it struck me as both funny and providential, but my pastor casually asked if we had godparents picked out for Bo, and when I told him the godfather was Brian, he shrieked, "I know Brian!" I was like, "no, you did not just shriek in church." Well, yes he did. Turns out this is the pastor that Brian grew up with. And then, on top of that, he knows the family of the godmother because her mom is very active in the student parish at MSU (mine is the student parish here in Kzoo). Our plan is to baptize Bo this summer. Jose remains religously ambiguous, but fully supportive of me.

Shut the F*ck Up, and Be Cool

I have to tell myself that every once in a while. This is now my new motto, even if I just have to say it to myself occassionally. The quote comes from our punk rock buddy who was describing a situation with his recently broken-up with girlfriend, where he was late to meet her. But I digress.

We spent the afternoon in the ER to see about repairing Bo's Broviac. There was a tear in it. Turns out that only the outer sheath was torn. We will probably do the repair ourselves. The surgeon was like, "if it ain't broke, don' fix it." That's cool. I was almost going to start whining about wasting three hours waiting in a cramped ER exam room. Then I remembered my new motto, and I'm glad to say that no news is good news, that Bo hasn't gagged or vomitted all day or all night (so far), and that I starting to see that we all have our own way of sporting a "Central Line." Someone might have mental illness that doesn't show a physical frailty, someone might have an emotional frailty. Maybe there is a severe asthmatic. We all have our wounds, and we all have our need for special nourishment. My hope is that Bo's is only skin deep, and that we can protect that for as long as he needs us to.

Happy 10 Month Birthday!

Bo's back up to the weight he was before that last stone, and finally, for the first time since, hasn't been so nauseated that he's woken up in the middle of the night. So he slept soundly through the night, through a diaper change, and everything. I'm hoping that this is the turning point where he starts eating and keeping things down. He gets along with Miss Colleen, and so do Jose and I. Sunday, we train/interview Miss Judy.

Bringing Back the Appetite

This picture was taken before he passed his last stone. While his appetite is coming back, his ability to keep anything down has not. So, while this photo wrongly implies that Bo is eating, I had to post it, because, who doesn't want to see a kid covered in yogurt?

Today is day 2 of nursing support!