Sunday, November 4, 2007

the teeny halloweeny

Okay, Kim made me title it that way. I swear. ;-) But - we wanted to post the Halloween pictures of Evie as a fairy. :-)

Halloween 2007

the big syringe, redux

Well, this time - we remembered the big syringe. So we passed that crucial check-point.

The last Sunday in October, we went to church with my mom & dad. They're fairly recent members at that church, but are still reasonably-well plugged in. But, for context - "they're new there". Anyway, their service starts at 10am. This is also Evelyn's mid-morning meal-time.

I figured it would probably be easiest to just use the Big Syringe to push food in while sitting in back, instead of breaking out the whole feeding pump & bag apparatus. So, thusly prepared, we headed off to church.

Mom & dad went ahead and saved us some seats at the end of a row in the back, so we could get out easily if need be. This later proved to be a fortuitous decision, but at any rate, we went in, got settled, and the service began. We sang some songs & hymns, and many of the normal "churchly" things, and then about 10:15, settled in to begin feeding Evelyn.

It all seemed too easy - Evelyn was sitting quietly & contently in Kim's arms; I was pushing the food in with the syringe; 2.5 mL every 30 seconds or so. This Big Syringe was an even bigger syringe than that last Big Syringe (see the image above; contrasting it with a regular 5 mL syringe) - this one holds 2 oz (60 mL), instead of 1 oz like the old Big Syringe. It was a little tougher to push in, but I attributed that to maybe a slightly-narrower NG-tube (Evie has a new type of tube), and/or the fact that we were using an adapter for the syringe, as the syringe's tip was a bit too large for this new NG-tube.

In any event, other than that, all seemed well and Kim and I were both having an "aren't we a happy little family" moment. The singing wound down, and the preacher had just begun a prayer. Another 30 seconds had elapsed, so I casually began pushing in another 2.5 mL.


Recall, this is in the middle of a prayer at a church service, so it was like the "Psssssfffffft" heard 'round the world, as far as we were concerned.

We watched in horror, as in slow-motion, the adapter broke free from the tube input. However, motion & time were not, sadly, slow enough for me to release my fairly stiff pressure on the plunger of the Big Syringe. As one might imagine, this course of events ended up sending a big, fat stream of KetoCal shooting across Evelyn, Kim, my dad, and an innocent bystander seated diagonally in front of us. I'm pretty sure we also misted some other bystanders.

Taking an aside, to help you comprehend the magnitude of this Rain of KetoCal - I ran a small test at home, after all events had transpired. I loaded the Big Syringe up with water, put the adapter tip on, and shot the water from my parent's back deck clear across their back yard; a healthy 20 or 30 feet. So there's some power there.

Needless to say, back in church - time began to speed back up. Quickly. Dad, dripping with KetoCal, started to hee-haw (and grin like an animal that hee-haws) from down the row, while the poor lady in front began to process that she'd just been splattered with an ample barrage of formula. "That's strange... I'd swear I was just hit with a fire-hose. Only one that dispenses baby formula. Except I'm in church. Wrapping up a prayer. Interesting." Luckily, she was also the mom of a 1-year-old, so "she understood" - most graciously. Perhaps even more luckily, she was wearing a water-resistant jacket, so most of the would-be damage was easily wiped off.

Needless to say, after many apologies and some quick clean-up, we hightailed it out of the sanctuary to complete Evie's meal (told you that back seat was fortuitous!). While outside of the sanctuary, we ran into another kind lady we'd chatted with the prior week, who worked as a chaplain at the children's hospital. As we red-facedly relayed the chain of recent events, she advised perhaps Evelyn was just taking the preacher's sermon to heart, and sharing what she had with the world? ;-)

Anyway, being as Evelyn apparently learned last week's lesson a little too well - we skipped church this week. ;-)

Evelyn's Story: Ongoing (Nov 2007)

Since Evelyn's initial discharge from the hospital post-delivery, she's had an up, down, but overall "okay" time of it.

Her seizures started as of on cue with Aicardi; right about 2.5 months of age.  It was literally as if somebody flipped a switch.  We spent about 12 days in the hospital, trying to get the medications dialed in.  We were discharged after we and her doctors were "comfortable with things".  Over the next few months, we played with a number of medications (7 in all),  and as of this writing, are seeing reasonable reductions in seizures since having started the Ketogenic Diet.

In October of 2007 we moved from Phoenix, AZ to Atlanta, GA, to be closer to family for support and such.

Overall, we feel like Evelyn's doing really well.  Her seizures are definitely a challenge for the best of neurologists, but we've got the best ones we can find "on the case", and between seizures, Evie has been much more alert and able to play, which has been great.  :-)  She still doesn't have head control, but now that we're able to do a bit more with her in between seizures, we're working hard on that.  It could be a while; it could be soon - you never know, but we're just working on it as hard as we can.

So far - so good!  :-)

Saturday, November 3, 2007


Well, it's been a good while - over a month! - since I've posted. It's with good reason - we've been busy!

Way back in July, Kim & I decided to begin trying to make our way from Phoenix, AZ back to Atlanta, GA, to be nearer to family & such. In late September, after a ~2.5 month remote job-hunt, I received an offer for a very good opportunity back in Atlanta.

So, on October 9th, my dad flew out from Atlanta to Phoenix. An hour & a half later, Kim & Evelyn boarded the same plane (literally) and headed the other direction. Dad & I worked on the final packing & loading of things, and then headed out on October 11th to begin our 4-day cross-country extravaganza, with The Boys (Rock & Rufus) in tow.

We made stops in Santa Fe, NM; Lawton, OK; Memphis, TN, before arriving in Atlanta on Octoer 14th. We did about 500-550 miles/day over 11-12 hours (two dogs and a 26' moving truck carrying all your worldly possessions and towing a car behind it will slow you down some), but made it without any trouble - not even any rain!

After arriving in Atlanta, Kim & I were able to catch up with my brother, home for some R&R from Afghanistan. We had a week of "relaxing" (which mostly consisted of initial doctor visits, house-shopping, and all that) before I started work on October 22nd.

While we're looking for a house, we're staying with Daniel's parents, who graciously opened their home up to us - which considering that we come with a baby and two large dogs is not insignificant! ;-)

Anyway, that roughly brings us up to date. Sorry for the lack of updates, but hopefully this explains it some. We'll try & return to the previously-scheduled posting frequency hereafter. :-)