Four Seasons

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

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?

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

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

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

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

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.