From Feb's Broviac Replacement

The lag in posting pix is one part foot dragging and one part emotional. I just can't bear to post anything scary while or too soon after it's happened. While I know this frustrates many of you kind readers who would appreciate very current photos, I just can't do it. These pix, for instance are from February's broviac replacement surgery. So the pix I posted around that time had nothing to do with this, which was soothing for me, and allowed me to look at pix of baby that didn't increase my blood pressure. And posting these pix today, a month and a half after the fact only make my heart skip a beat a few times, instead of stopping it entirely. All's well that ends well.

SNOW!

I knew we wouldn't make it out of March without one last crocus-killing snow. Pictured here: the peace dove at church (forgot to post last time), and Gramma!

Holy Week, Cuz It's a WHOLE WEEK!

I just checked the calendar and I'm scheduled to be at church 6 times in 7 days for Holy Week. Talk about Catholic hazing. I was joking with my friend who is a minister's daughter and was like, "so after all that church for Holy Week, does that mean I don't have to go to church again for a year?"

She was all, "Uh. No."

Bo and Jose wander around while I'm celebrating mass. Here he is admiring the kickin' stained glass peace dove.

BFF: Nurse Colleen

Our not so secret weapon to keep Bo healthy: Nurse Colleen!

Mmm... Sleep...

Bo was good enough to sleep all the way to my parents' and most of the way back. How he slept while we were there for a long weekend is a whole 'nother story. Let's just say sleep disruption did nothing for my disposition.

Family Time!

We just had an amazing visit with Uncle Bruce and Gramma Maggie. This pic is also from the Chicago visit at the end of January. Here, Bo is working on Uncle Brian's mac. We love family time. Tio Ren and Auntie Jennie are meeting us in A2 tonight and coming back home with us on Tuesday.

Hopefully we get to trade the loaner back in for our wagon on Friday. That's not to say that I haven't enjoyed cruising around in a red 1992 Taurus full of stale smoke and a "Please do not smoke in this car" admonision penned onto yellowing masking tape sign.

It's Potty Time!

The potty experiment started in January, earlier than some think efficient, but we're not shooting for efficient. While I understand that if you're timing and the child's personality are right, and you sacrifice a 32 day old goat at the new moon with the foot of a female chicken tied around its neck, the kid will eschew diapers for potty overnight, I'm not really interested in those odds. And I'm not interested in depleting the earth's mines of zinc in the next 6 months. We're talking about approximation, people. So, I'd say he's at about 70-80% good with the potty action, and that makes the diaper rash challenge more of an annoyance than a serious medical hazard (it was, believe you me).

Wt: 27lbs and a few ounces; ~50% adjusted for age
Ht: 78cm; less than 5%, even adjusted for age
Head circumference: 52cm; over 95% adjusted for age

Nephrology, gastroenterology and feeding clinic were all delighted with his progress and concur that this is the best they have ever seen him. We are not going to rock the boat on anything, so he stays 1800cc/20hrs of TPN daily. While fewer hours are more convenient, I'd rather stay out of the hospital than risk dehydration.

We plan on checking trace elements, B12 (and MMA and homocysteine) in the near future. GI doc will ask endocrinologists when we need to start worrying about early onset osteoperosis. And if you didn't notice my tweet: FOUR separate posters are being presented at this summer's ESPGHAN in Budapest on Microvillus Inclusion Disease! And one of these posters will be presented in Chicago's Digestive Disorders Week in the beginning of June!

Miracles! God's love is amazing. The Universe is listening attentively.