Bo Takes Chicago

Bo models his SuperHero Frubi's in anticipation of sunnier days.

Our first non-medical trip was a great success. Bo was an inspiring addition to the Oley Foundation's regional conference, he crashed the APSPEN professional conference, and attended a GSB alumni brunch! He did have a virus that made him gag and retch with nausea (and his mommie very anxious) at night, and we drove home in a white-out, but we got home in time to hook him up, and we even got to squeeze in a visit with his favorite docs from Boston, Drs Gura and Puder! They agree with Nurse Kathy that Doc Cloney is doing a fine job with his weight; not too skinny, not bloated with TPN. And he even said Puder! Well, it came out as, "puh-puh-puh." But he has the right idea.

Once again, Tio Ren and Auntie Jennie provided invaluable help getting us both settled in and packed up, as well as general Bo-duty.

Medical update: He weighed in this morning at 14.78lbs, and his labs have been reduced from weekly to biweekly! I have mixed feelings about this, as we love being able to consult with our rockin' visiting nurse weekly, but the reduction of draws means a reduction of opportunity for his line to get contaminated, and it also means that his GI thinks he's stable enough to not need to see weekly lab data.

Kinn's Computer's Current Wallpaper

I love this picture. What is he thinking, with that doleful look on his face? He's covered in rice cereal, and we had to take a break because he was too darned cute not to photograph. I'll close all my windows in the middle of the day, just to look at my wallpaper, this picture, and I just fill up with so much love at the sight of him.

I am of two minds when I think of Bo's medical condition. On the one hand, I am so baffled by the rarity of his disease. It is so rare, that its pathology is still completely a mystery to the medical community. On the other hand, the pediatric gastroenterology conditions that would have led us to Omegaven that are better defined can often be much more severe. At the end of the day, I remain grateful that his intestinal microvilli are the only things affected. He is not on a ventilator, he does not have seizures, his other organs work great. It is a funny thing to be grateful for, but in the community of parents of special needs kids, I am finding out that we are as lucky as we feel tonight, and every night.

Did I really harbor such shallow thoughts as material envy, or vanity? The only thing I find I am envious of anymore are the parents whose kids become TPN-independent. The perfect physique of my yoga teacher or personal trainer no longer give me pangs. That perfectly turned out contemporary of mine at the market no longer causes me to catch my reflection in the door of the milk aisle with remorse. The gorgeous engagement ring on the chemist's hand doesn't embarrass me with lust, anymore. The guy at work, less educated but better compensated, doesn't even get a second thought. But the blogs of babies who are decreasing their nights of TPN makes my eyes sting with tears of jealousy. I'm not phased by normally developing children or their parents. They're in another world, not pertinent to mine and Bo's. But these short gut kids whose intestines miraculously adapt... my eyes are brimming with jealous tears, right now, as I type... even as I cheer them on, these brave, stalwart babies, and their brave, stalwart parents. And my first day of the new year, I am exercising my unpracticed art of forgiveness, clumsily, awkwardly, with love, and the grace of God.

And still, like every other night for the past eight months, we gleefully toast each other to another great day with our best friend, Bo. And finally, I understand in my heart, the notion of "there, but for the grace of God, go we."

Calling All Grammas

He was screeching when Gramma Maggie came to visit today. Pictured left: before he learned to screech, during a visit with Granny Holmes. I hope Bo's apparent rudeness didn't scare Gramma M away for another month! He does love him his grandmas, he just also loves to talk loudly (yes, a Chan, we know).

Also, I've been madly weeding out all the scary-toxic baby products in the house. Who knew this stuff was toxic?! http://cosmeticsdatabase.com/browse.php?maincat=babycare&nothanks=1

yikes. I am that crazy mommie.

Long Life Noodles

We are so excited for the New Year. We will be taking our first non-medical trip this New Year Weekend to Chicago to participate in the regional Oley foundation meeting. Hopefully we will learn new things about Bo's care.

And the icing on the cake is that his Omegaven doc and pharmacist will be there!

By the way, we made it through the month of January without having to be admitted to the hospital! January and November. I can't wait for the day when the hospital-free months out number the other ones.

Reflections on the Year of the Pig

As the Chinese Lunar New Year approaches, I have been reflecting on the last year and all the miracles we have witnessed, along with all the forgiving I need to prepare to do to clear my emotional register for the new year. Forgiving myself for being too hard on us for not being perfect. Forgiving of the U of M doctors for operating from a place of sobriety due to experience, instead of soaring hope (what we needed). Forgiving of Bo for being so cute that we are spoiling him out of control. Forgiving of Murray the Cat for getting sick amidst all the Bo frenzy.

Now that Bo is stable and developing, it is hard to remember how terrifying it was walking into the NICU every morning those first few weeks. Wondering if he would still be in his crib, or if his room would be empty. Wondering if we would still have a need for the carseat sitting empty in our back seat, and how I would have the strength to remove it, if I no longer had a Bo to seat in it. Wondering who else would have the strength to pack up all the baby gifts and clothes and furniture, because I knew if it came to that, I wouldn't. Those were the longest, darkest nights. And I know our stays in the hospital are far from over, but none will contain the mind-crushing terror of those mornings.

I am so grateful to have Bo with us for another amazing day. I am so grateful that we had those mornings to remind me to be grateful. I am grateful I never had to take the carseat out, or find someone to pack the nursery. And grateful it was only 5 weeks in the hospital and not 5 months, like a lot of other short gut kids, or 5 years, like the older MVID kids. And as I pray that Bo does not develop additional pathologies, I am still grateful for these last eight months. And I know that now I do have the strength to face the future, whatever darkness or sweetness the days ahead hold for us.

I just cover his big chubby head in kisses till it stinks from my saliva. I kiss and smooch and blow raspberries until he yells. And I noticed I only just started doing this after Christmas. I don't think I really kissed him all that much before then. I think all those terrible nights and terror-filled mornings just made me try to harden my heart. Those early months, we just did not know if he would actually make it to his hundred day birthday, or Christmas, or January 1st, or his first birthday. We are actually planning his first birthday. What a miracle.

Thank you for joining us on this new path that Bo has led us towards. Thanks for reading.

A New Hat! Thanks, Tung!

Although it hasn't made it even close to freezing today, and I had to fight to get into my car because the doors were frozen shut, we had a great day together. Jose built a fire at noon, and Bo and I played tummy time games, sitting up games, and ate cereal.

Bo loves his new hat. My sister in Hawaii made it for him. He looks like a little goblin in it with two puffy ears on top. I had to include a goblin-face expression. We are so lucky to have another great day with our little goblin.

PS thanks for the comments; this love and support helps me be the best mom for Bo, and Bo and I really appreciate it

Eat This, U of M

Finally, fresh new pix. We have tentatively started Bo on solids these last 2 weeks. UMich docs threatened us with increased diarrhea to the point of dehydration. No such thing has occurred. In fact, ever since we left their care in September, I have been regularly breastfeeding him, albeit in much smaller volumes than his peer group eats, but breastfeeding, nonetheless.

And, his WBCs were in the normal range today (16.7). Though his bilirubin was up slightly, 0.1 is still awesome, and pretty darn close to last week's 0.0. Another great day with our new best friend, Bo. We are so lucky.