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.

Can't wait to see Tio and Aunty!

These are from Bo's last visit to Chicago 7 weeks ago. Neither is staged. Just happened that way. He just happens to be mischievous.

Terrible Two's? Moi?

English: A drink of water. Another book. Downstairs. Frogs. Guitar song. Not that song. The other song. Nooooooooooo! No-no, noooooooo!

translated from Bo:
A-gah! Agah! Boo. Dow!!!! Hop-hop. 'tar? (mommie singing) No. Nooooooooooooo!

I'm looking forward to the escalation of protests, vocabulary, volume and variety of stall tactics. Not. Let the games begin.

3.5hr nap!

More face! Back by popular demand.

And... still napping 1x/day. Usually down btwn 12:30 and 1:30pm; waking up btwn 3 and 4pm! The extra long naps are certainly due to all the abx, but I'm hoping they won't disappear all together as he starts feeling better.

The Prodigal Son

Dear Reader,
Please view exhibit "B" (as in BoBo). God has found the perfect person to return my faith to me. How could such a one as this exist but for God's own design. Notice the perfectly round button nose, and the buns perfectly balanced by the baby pooch. mmmmmmm.

First Haircut

PoPo: He got haircut.
Jose: Yes, he did. His first.
PoPo: Did he cry?
Jose: Yes...
PoPo: Don't do it.

This was from a few months ago, and the baby mullet is growing back in. We've all noticed it, but no one has had the determination to make another haircut happen.

The Disco Center Babies

This is Bo playing with the babies at the daycare he visits Tuesday and Thursday afternoons for playdates. He loves the babies! And hopefully asks for them any time we put him in the car. The Discovery Center is a Montessori-influenced 0-6 year old day care where the liberal and academic tend to send their kids. So they do cloth diapers, "follow the baby," have extensive food lists for each child, et cetera. They are so lefty, however, that they can't just follow one pedagogy. Most of the care givers are Education people, and have been there for over 17 years. And lovelovelove babies. Bo is a little rock star there. All the ladies love him. Babies, toddlers, teachers. What's not to love?

Chubmaster

notice the sleeve of fat covering the wrist.

Great Visit

This is from Bo's visit with Gung-Gung while he was in-patient at Bronson a few weeks ago (for heart attack). Both guys are doing well. Both had drs visits today. And both were good, so far. Bo will need his quarterly visit with his GI in a few weeks for us to feel good, and my dad will need his echo cardiogram results interpretation next week for us to feel good about that.

Dr. Doom was happy with Bo and said he looked the best he's ever seen him. He had an ultrasound and the bladder looked clear (nothing suspicious in there) and his kidneys looked as good as they did 3 months ago with no additional stone formation.

He does have a site infection, but the blood cultures came up negative, so the antibiotics are just to treat the site, where the line enters his chest. It got a little red and puffy. Tomorrow is his last day of antibiotics, and hopefully this will be the end of that.

Pantless Wonder

In his dude shirt my girlfriend from work gave me. It's 3T and I wasn't sure it'd fit a 21 month old, but I guess he's husky. And a dude. And in true dude fashion, would rather not wear pants.

Never a Dull Moment

More news is usually complicated news. I'm very annoyed to not have any pix to post. Jose gave our old camera to his niece and it was so old that it wouldn't accept the new SD card he bought her. So instead of downloading the pix we had on our card, he just handed it over. Needless to say, all those pix are gone forever. Growl.

AND we didn't even get to have the visit we planned. AND I'm scheduled to take vacation tomorrow, but instead of visiting with family, we are in Kalamazoo. No family, no nurse, antibiotics and a potentially scary site infection (much less scary than a full on line infection, but we won't know for sure until the cultures come back tomorrow and the next day).

Sigh.

Deep sigh.

I've been experiencing bouts of high blood pressure (I wonder why), and dizziness/faintness. And I'm avoiding seeing my doctor because I'm afraid of what he'll say (yeah, stupid, I know).

BUT, at least the surgeons were cool about letting us treat Bo from home instead of in the hospital. And we had an awesome datenight Saturday. My girlfriend had her birthday party at Fire and it was soooo fun and cool and lovely.

PLUS I just went through the Rite of Sending and the Rite of Election at St. Toms and the Cathedral, the former of which was WAY more emotional than I expected and the latter of which was WAY more annoying. Note to self, I totally picked the right parish; no WAY would I ever be able to sit through a mass at St. A's. It's just too impersonal for me.

Epilogue: Jose is at sculpture class, and aside from sadly not really vacationing, I'm looking forward to 6am(!) pilates, and bonus, baby was asleep by 6:30pm.