Three Big Things Before the First Birthday

I'm posting three pictures; two are designed to take the sting of panic off of the third. That last picture is not for the short gut parent who is faint of heart. Buyer beware.

Practicing standing, two bottom teeth, and a spliced line. That last addition was something we were expecting at some point. I guess that point was yesterday. As luck would have it, the surgeon who is applying for Omegaven here at Bronson was the one to splice Bo's line. And the leak the original sprung was really really tiny. And it all happened during the window when he's off his TPN. Not that we ever enjoy a trip to the ED, but we had Nurse Colleen with us and all the other fortunate things mentioned above. Bo was even good enough for a bit of a nap while we waited for the surgeon. And now I have both his cell and home #'s. He and Puder trained under the same guy; needless to say, they both believe in a level of medical practice I like to call Real Medicine. Thanks, Doc!

Taking Stock

This pic was from a year ago, today!

Bo will be a year old in less than a week. He has not had to stay overnight at the hospital since December. We're looking forward to the annual NICU reunion the weekend after his birthday. His two big teeth make him look like a beaver, sort of. He's doing a lot of standing and practicing walking! I hope he is walking by the time my parents see him in July.

We're having a very low key birthday with his Grandma Holmes on Tuesday, and bigger belated birthday party to coincide with his Baptism. For those of you who are in the area or will be able to stop by, this will be at St. Toms here in Kalamazoo on July 5th, Saturday night, 7pm.

Medical update: One of the world's experts on Aluminum toxicity, Dr. Winston Koo, is at Detroit Children's. He did not seem as excited about Bo's Aluminum level as the Nephrologist (Dr. Bunchman, aka Yosemite Sam, aka Dr. 'Stache- he has a giant bushy mustache). I'll get a referral to him from our GI. We started eating meals together, where Bo gets to see us eating and talking. He has reluctantly started eating with us. Actually opening his mouth for a few bites of yogurt or even a cheerio! We'll see the GI next Friday.

And last but not least, we spent this week with his Yee Yee-Ma, my sister Tung, who had a week break in between meetings here on the mainland treated us with a visit. Bo loves Tung. They got to spend time reading, walking, playing and having fun together. What a great birthday present! I even got a mother's day spa day! Thanks, Tung! Bo is going to miss his aunty. Hopefully we will see her again in October (can we please set a date?!).

Waking Up, Happy!

Maybe Bo is finally starting to move? I was mid-diaper change the other day, and turned around to get a fresh diaper. When I came back, there was a wet spot by his line, right by his shoulder. I thought for sure that his line had finally snapped. Then I sniffed it and realized, thank goodness, all this requires is a fresh blanket! He had peed a trajectory up to his shoulder!

Tio Ren is here through Saturday, and Yee Yee-Ma (Tung) arrives late tonight for a week's stay. And Grandma Holmes will be here for Bo's first birthday!

Murray doesn't seem to notice her naked, tail-free butt. She is in high spirits and wants to escape from her kitty-cat condo. If anyone knows someone who is a "caretaker," Murray still needs a home.

Bunny Hat!

Bo has been wearing his Bunny hat (made by nanimal) that matches his quilt. I remember when she gave it to us in July, when Bo was so so tiny, and I thought, my God, will he ever grow into this? Will he be with us long enough to fit this?

Thankfully, the answer is yes. And although some of the 6 month olds in playgroup are as big as he is, he is approaching his first birthday very medically stable. He wears his hat every day.

Murray came home last night and is in isolation in the sunroom until her stitches come out in the next 10-12 days. Poor thing. Her beautiful tail. I'm just beside myself, because we still need to find a home for her, but I'm thinking that a barncat job would be too much for her.

Surprises Abound Down There

Murray will have her tail-docking surgery today. She was doing so well yesterday that she walked out of the kennel on her own to greet me. She will recover 2 days in-patient.

While I was letting Bo air-dry the other day, I ran to get a wipe and when I got back, there was a wet spot by his shoulder near his line. My heart skipped a beat and I was certain that his fraying CVL finally sprung a leak. Then I sniffed at the spot and realized it was just more laundry and yet another new diaper for Bo.

He weighed in at 18.51lbs and 27"! Good Boy!

He started shaking his head, "No!" yesterday, and saying, "MeMemememememe."

Jump! How High?

Bo is jumping and bearing weight on his dumpling feet. I am having a hard time picturing him running by the end of the summer (or is it that I am having a hard time picturing our house child-proof by the end of the summer?). But then, this time last year, he was still in utero.

We just went to see our friends' new baby, born Wednesday and weighing in at 7lbs, 13oz. She seemed so tiny and only barely human. I remember Bo fighting to get to that weight after a month and a half, but barely remember the feeling of holding someone so small for so long. Now it is eighteen pounds of wiggle-toes and laughter (like, ha! you think I'm taking a nap?! Crazy mommie).

Send Good Wishes for Murray

While we are actively looking for a new home for Murray, she got in a terrible accident last night and is in hospital for the next 5 days for observation. The best case scenario will leave her with a bobbed tail. The worst case scenario, is the worst case scenario. I am so crushed and devastated that Murray may have to lose her beautiful tail, or more. I love that fat, furry little girl. And Bo may never rembember her, but she loves dominating/sitting on (and under) his stuff.

Sleeping Beauty

After Bo is asleep for the night, one thing I often find myself doing is scrolling through the most recent pictures we have of him in our camera.

Happy Mother's Day!

Cheek. Too. Big. Can't. See. Past..

This was my first Mother's Day. I was so happy to be out and about with the family, unable to believe our good fortune, and that in less than a month we will swap out the infant car seat for the forward-facing Britax. Aside from the obvious, sobering reality around Bo's condition, since he has been so stable for the last month or so, my brain is now able to stretch around other issues: finding a new home for Murray (she's not adjusting to the new balance of power), getting some tile in the kitchen, scheduling yoga classes and time at the gym, that huge mountain of laundry in the basement. I've never been happier to do laundry.

Happy Mother's Day!

Magic

It is so true and maybe this is why it feels so cliche to write, but it is from those hours which are our darkest that our hearts allow us to fathom the furthest reaches of our own compassion, into an infinity of empathy. Each stone we gather for shelter from the winter cold, and each story we share to keep our fire of compassion burning is another step towards our most evolved selves.

Maybe that is the explanation for my obsession with lurking on the blogs of other sick babies. Or maybe its because each of these websites is a testament to the miraculousness of life. The infinite strength and hope we parents find each day; surprising, I suppose to no one but ourselves.

To quote a recently penned letter to my chosen family,
"Life is miraculous. Full of miracles, great and subtle... We are too lucky sometimes to know it. Maybe that is the blessing of our riches, those moments of luxurious, unselfconscious living."

I'm not always clear, myself, what the driver is for this blog. I mean, besides Bo. Is it a place for me to vent? A place where my scattered given and chosen family can see Bo's progress? An unabashed parade of gratuitously cute snapshots? Is it a place for me to posture, putting forward our Strongest and Most Presentable Selves? Maybe to convince myself of Bo's ability to kick the statistics? It is a testament to my Faithfulness in the Universe and its goodness. God is good. All the time. All the time. God is good.

The one gift from one of the few hopeful hearts among our doctors at UMich said, "There is always room for magical thinking." Amen.

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.