Tonsil Sale - Everything Must Go!

We're really not selling their tonsils. We're just having them removed because apparently, they're ginormous and need to come out before they acquire identities and apply for citizenship.

And yes, it's for both boys. You didn't think only one of them would need surgery and not the other, did you?

If you're thinking this surgery sounds familiar, that's because we did almost the same thing this time last year, but then it was for adenoids.

Surgery is this Friday, so keep the boys in your thoughts. It shouldn't be a big deal -- we've been here plenty of times before, and for more major operations -- and we're not expecting recovery to be too bad either.

We'll update after Friday. In the meantime, if you want to be blown away by how much the boys have grown in recent months, check this out...

Chillin' with Grandpaw.

I really think William is laughing at
John-Raven's Donald Trump-esque hairdo.

GI Joes

Soooo we're getting ready for a little GI procedure for testing purposes to see how bad the boys' reflux is affecting them, if much at all.

Looks like we've graduated up from the purple gowns to the blue ones. Guess that's what happens when you're growing this much.

Double Vision

Eye surgery went off without a hitch. We have a couple of groggy boys with bloodshot eyes, but all went well as far as we can tell. When they came back from surgery, they were seriously zonked, and stayed that way until...well, they're still that way.

Mom tried to give John-Raven something to eat. Still preferring to sleep, he and his brother wouldn't take anything until early afternoon.

Eventually, we got both of them to wake up and eat a little bit, so we were given the go-ahead to take them home. Recovery shouldn't be too bad - they don't need eye patches (although that could have made for some good pirate jokes...fear the Dread Pirate William! Arrrrrgh!). Once their strabismus is fixed, they'll be seeing more clearly and with any luck, will no longer be seeing double. I can't say the same for their parents, though.

Alphabet Soup and an Updated Diagnosis

The biggest news we can offer now is the boys' revised diagnosis, which sortof has us swimming in alphabet soup.

Their diagnosis of HPE (holoprosencephaly) has been changed to ASP (absent septum pellucidum) possibly resulting from SOD (septo-optic displasia). Although ASP/SOD still could present some of the same developmental issues as less extreme cases of HPE, the new diagnosis is a better one overall. (In fact, I understand that ASP/SOD used to be listed as a mild form of HPE.)

We're glad for the new diagnosis, and especially thankful to its source, the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations. We took the initiative to contact the nearest location of the Carter Centers (located in the Texas Scottish Rite Hospital for Children in Dallas) after the boys were dismissed from Harris Methodist. We sent over the boys' MRIs, and we were told that the Carter Centers couldn't help us because the boys don't actually have HPE. But that's a good thing -- with their rejection came a very detailed and helpful explanation of WHY they couldn't help us and why they don't have HPE. We've since been able to take that explanation to other doctors.

A couple of things we've learned about doctors and hospitals:

1) NEVER assume anyone is communicating with anyone else. Maybe they are, maybe not. Our first meeting with our neurosurgeon is a good example of that. (That story was pre-blog, so maybe I'll have to revisit it.)

2) A single doctor's diagnosis can have a lot of inertia and may rarely get challenged. The HPE diagnosis, which occurred in the NICU, had enough momentum to carry it along to every other specialist we've seen. Until, that is, the Carter Centers' diagnosis became the outside force that acted on the thing in motion. Challenge assumptions.

3) You are your best (and sometimes only) advocate. Do your own research. Join an online community/forum. Get second opinions. If your doctor doesn't specialize in your or your child's condition, find one who does.

So over the last few weeks, we've had our fair share of visits to/from healthcare professionals, including the neurosurgeon, the neurologist, the early intervention specialist, the occupational therapist, the geneticist, the pediatrician, the butcher, the baker, and the candlestick maker. (Some of these visits were scheduled, but one wasn't -- We had a little scare one day that John-Raven's shunt was failing, but thankfully, it was a false alarm.)

The boys have an improved diagnosis, they're putting on weight, they're happy (er, most of the time), and they're still cute little stinkers.

Speaking of cuteness...without further delay, I bring you CUTE BABY PICS.


Shirts read: MY MOM RULES and MY DAD IS RAD.
(Thanks, Deneise!)

John-Raven rockin' the horizontal stripes.

"Really, Mom? No Ed Hardy footy-pajamas?"

John-Raven comforts William. "It's okay, I don't think she'll eat us."

Daddy attempts to drink a beer while holding pacifiers. Epic Fail.

Obligatory baby-with-beer-bottle shot.

(Come on, I had to do it.)

I'm so excited, and I just can't hide it...

No caption necessary.