Cousins!

This is Bo and his next older cousin, Violet. She came over to play a few weeks ago.

Bo has his next well-baby (get vaccinated) appointment today. I hope I can find his vaccine card. It's always sliding around some pile of documents or other.

Two Cats, A Dog and A Baby- this is not the opening line of a joke

Murray officially has Feline Lower Urinary Tract Disease. It's as painful and annoying and impossible to understand as infant kidney stones. So now she needs more fluid in her diet. At least this is an easy one; give her soft food. And Prozac? We'll see...

Ming, Mom and Bumper are here. Maybe Bumper set it off.

Bo is so excited to see my mom and sister!

Milky, milky... right?

Aside from an hour's episode before bed last night, Bo has been in high spirits. We may never know if it was the yogurt, or teething (when will this kid ever get his teeth?) or residual kidney stuff? But I'm just grateful that it passed.

We had a lovely visit from good friends in town who brought Bo some new books (hooray, and thank you!) which makes reading with Bo so much better. I've memorized the first 30 board books already. AND we went to the new independent kids' book store next to our neighborhood grocer. I love our neighborhood.

What a great weekend we are having. And we somehow squeaked by without a blizzard landing on us this week! Have a great weekend!!

Three's a Charm

We think Bo passed his last of 3 kidney stones last night. He was pretty upset, but we were prepared. A small dose of Tordol and extra fluids seemed to hasten the process from several days to one. So, he had his IV nutrition (aka TPN), his lipids (the Omegaven that saved his life), and the lactated ringers (extra fluids) which meant that we had a triple splitter (Y-connector) hooked up to his catheter. The triple splitters we have are pretty cheap; made of thin plastic, so whenever he rolled over, it would clamp itself off and all three pumps would start alarming.

So we didn't get very good quality sleep last night. But it was still a hundred times better than waking up to him gagging, choking and retching. And we only had one night of this, rather than the 4-6 days the other two stones took.

Bo actually slept through all those pumps beeping. I guess he's used to it from all the nights he's spent in the hospital. He woke up in great spirits today and was so happy and cheerful all day. He is such a great guy!

Happy 9 Month Birthday!

We are officially out of the literature. Since there aren't that many recorded cases of MID, we're already working with a limited knowledge-base. But of those recorded cases, most of those stories tragically end by nine months. As of today, we have even less literature to reference for Bo. I won't say that we beat the odds, but that there are no numbers available to even calculate them now.

I went out and bought both size 3 and 4 overnight diapers, giddy with optimism.

In the Shadow of Bo

Another mom mentioned in her blog that the social worker warned her that some people in your life would withdraw from you when you suddenly find yourself with a special needs child. Another friend, who's currently fighting cancer said something similar about how some of the people closest to you suddenly disappear when you are in crisis, and some folks who might have only been acquaintances become your most indispensible companions. I've been thinking about this a lot. And grieving. I keep circling back to my last communication with my oldest (former) friend in town...

Dear Kinn,
We are really shocked and saddened to hear about this, I had no idea this happened to your family. Wife2 and I will be keeping you in our thoughts.
Buddy

RE: what's new?

Hey Buddy,
Did you go see Punisher when she was in town? I guess you haven’t heard about Bo.

So, when Bo was born in June, he was dehydrating very badly and not regaining his birth weight. He was kept in the NICU for 3 weeks, but the neonatologists couldn’t figure out what was wrong with him. So then he was transferred to the University of Michigan via ambulance, where he stayed for an additional 2 weeks. It turns out that he has an incredibly rare and life-limiting condition known as microvillous inclusion disease. Basically, he doesn’t have enough surface area in his intestines to absorb enough nutrients to live. UM docs said that he had a 25% chance of making it to 1, and <1%>

... I would trade this friend for Bo a million times over, if that is what the equation asks for. But does it? I am so sad about this loss. And so grateful for Bo. My heart still has this echoing ache when I look at Bo and think about how different my life is, the people I've lost, the goals I've modified, the empty space in my heart this friend used to live in. I am living "a life less ordinary." And now I really know what that phrase means, too. Bo has given me so much; all the world, a new life, hope, courage, friendship and joy.

Only, sometimes, breaking away from the old world into the new is just such a painful transition. And the surprising sources we find our sacrifices originate from can catch you off guard. These things all fall under the shadow of Bo. It is a little disorienting, a little lonely, a little scary... and then, this sunburst of abundance settles into your heart.

And there but for the grace of God go we.

Appetite returns with a vengance

I'm happy to report that Bo's appetite has returned with a vengance. Also, aside from the last stone, the nephrologist says that his renal system looks completely normal. His GI was delighted by his weight gain and big smiles and babbling so much so that we are increasing his volume (to ward off more stone formation) and decreasing his time on TPN.

Boo Boo was completely lovely and cheerful through both doctor visits and didn't even cry on the way home, even though he'd only had one nap. What a good boy!

Once we get the stone analysis and one more urine analysis, the GI will know how to adapt his TPN to avoid further stones. He weighed in at 16.25 lbs and 25.5 inches!