Maddie Status Check @ 26.5 Months

I don't think there is a narrative to this one; just want to brain dump a bit (maybe I'll edit before posting. Maybe not.)


The Good

When nothing bothering her, she's a very happy little baby.

Babbling lots!

Reaching for things... wants to crawl...

Good at hand (fine-motor) control.

Still no real reason to think this is permanent.**

Switched to a new formula that seems to be making her much less uncomfortable.

Rigged a "cold bag" such that we don't have to refill her formula in the middle of the night... just have to get up 3-10 times to deal with bubbles.


The Bad

Still no talking, no crawling, no sitting unassisted.

Not taking any food or drink by mouth.

24 months of crying... really wears on you. She has 2 in particular that really get me:

• Nnnnnnngggg nnnnnnggggg (sounds like she is yelling with no tongue... like nails on a chalkboard)
• Huh uh huh uh huh uh huh (this machine-gun like "I'm unhappy" thing that she can do -- literally -- for hours straight. Gasp inhale, sharp whiny exhale. Repeat x1000.)

Likes to choke while traveling in the car. Always fun.

Still not taking good naps... no sleep schedule...

The new formula is thick, so we can't "run open loop" like we used to. More work dealing with bubbles this way.

Still can't seem to handle bolus feeds, currently... so we're on the pump ~20 hours/day doing continuous drips. Makes it hard to leave the house.


The $*#@!$$#

Still retching about 3 times a day... big ones too -- face turns red, sometimes gets tiny burst capillaries on her face, etc.

The retches seem to be caused by one of two things:

• Bile; after most (but not all) retches we see yellow fluid in her g-tube... seems like whenever a bit of bile hits her tummy she feels nauseous and loses it. 
• Gas; still fighting gas all the time, and when it builds up she just can't seem to burp, and eventually loses it. Or when on her back, the gas pushes fluid up into her throat and she chokes and loses it. 

At 26 months, she seems to have the development of a 10-month old. We've been seeing signs of talking, crawling, sitting for ~6 months, but progress is glacial.

Haven't shared a bedroom with the wife in well over a year now. Thatskindafuckedupisntit?

** this one is screwed up in its own right though; we still have no real diagnosis for any of this. Just symptoms.

Nachos are Magic

Had an epiphany over breakfast (yes, this was my breakfast today):

Nachos have a magical power.

Here's what I mean.

Take a couple of big handfuls of cheese... I mean more than you would possibly in a hundred years think of taking out of the bag and just eating... an amount that would certainly make you feel sick to your stomach... and add that cheese to your chips, chili, and peppers. Melt it.

Abracadabra!

It has suddenly become a perfectly reasonable amount of cheese to consume.

Delicious magic, I tell you.

Maddie Status Check

I want to write a quick note on Maddie's medical progress/status as she approaches her second birthday.

Wow, to be honest it feels weird to even say that... kind of like how using the word "wife" sounds funny for a while, and later when you have to get used to the idea that you're actually a "daddy". For some reason it's hard to think of Maddie having a birthday, since she's sort of stuck in time...

Why post this?

Three reasons, I think.

1. Get it out of my head... clear the air. (And there is plenty of air in my head lately.)
2. For us to look back at a year or three from now, to remember what things were like behind the scenes... and also hopefully see just how far we will have come.
3. One in a million shot someone else dealing with similar issues reads this and feels less alone.

Quick Status

So as she approaches two years old, we do continue to see progress; albeit at a snail's pace. We just can't seem to get the weight on, though the last week or so has been promising. She is developing though; making more babbling sounds these days, and her face is definitely less infant-like. She's stronger too and wants to move around, which is great but also makes her hard to hold... 

Unfortunately she still needs to be tended 24/7... can't set her down on the ground for more than a few seconds, or she'll retch. Can't sit up yet, so she has to be held pretty much constantly. We just spend most of the day sitting on a pad on the ground with Maddie sitting between our legs, handing her one toy after another.  Hasn't said her first word yet, which is one of the hardest things... if we just had some real communication I think everything else would be a bit easier to handle. No crawling yet; can't really hold herself up on 4-point, though when she stands (with help) she seems really proud!

She's very interested in tasting things at the table these days, but can't eat anything... so we're still just  trying to push food in the g-tube every hour of the day and night. Stomach gas continues to be more challenging than you could believe -- if she was just not 25x as bubbly as most babies, or if she could just learn to burp I feel like we'd be on easy street by comparison... 

We're still with the CDSA program until she's 3; after that we have to transition to the school system for support, so just starting to figure all of that out. Might end up getting into CAP/C or Developmental Services. A bit nervous about all that, actually.

Our Schedule

So for the time being, we're stuck in a mode of tag-team parenting of Maddie at all times... one holds her, the other can get some work done or can play with Sydney. Tolerable, though it makes it very hard to actually get anything done -- no real time for focus, unless I force an hour or two and then take Maddie for the rest of the day...

Still splitting night shifts, so we live basically a 48-hour schedule.

Up at 6am after a night's sleep. Make formula, do chores, and wait for Sydney to wake up. Maddie starts her eating schedule at 8am... Melissa gets up after a 3 hour nap and by 10:30 we're through everyone's staggered morning routines and perhaps we can start doing something productive. 

Tag-team through the day, around her therapies (M-F, 6 times per week, currently). Maddie goes down sometime between 7pm and 11pm, and it's my turn to tend her through the night... a good night has you up 3-4 times, and a bad night you just get naps.... 6am is shift change, and I get to settle in for my own 3 hour nap. 

Rinse, Repeat.

Maybe there is a better schedule, but we haven't figured it out yet. Suggestions are welcome!

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Addicted to Money (NY Times article by Sam Polk)

I'll admit it -- from time to time I've read about the million$ that young kids are making on Wall Street and I've felt jealousy. I could have done that, I say to myself... and I'd be stinking rich by now.

Somehow it never occurred to me as a career path. After reading this article by Sam Polk I'm happy I didn't try to go down that road.

http://www.nytimes.com/2014/01/19/opinion/sunday/for-the-love-of-money.html?_r=0

I hope that link works for you (with the Times' paywall) because it's a really great read. Here's one of the money quotes:

From that moment on, I started to see Wall Street with new eyes. I noticed the vitriol that traders directed at the government for limiting bonuses after the crash. I heard the fury in their voices at the mention of higher taxes. These traders despised anything or anyone that threatened their bonuses. Ever see what a drug addict is like when he’s used up his junk? He’ll do anything — walk 20 miles in the snow, rob a grandma — to get a fix. Wall Street was like that. 

It somehow never occurred to me before that money could be that addicting -- but of course it makes so many things that rich and powerful people do make more sense, once you really absorb the idea.

In any case, thanks to Sam for giving me an eye-opening look at what it's like in that world... no doubt in my mind that Wall Street would have been a toxic environment for me. No regrets anymore about avoiding that career.

Quicky: LegalZoom Cares More About $8 than a Customer

TL;DR: LegalZoom sucks.

Slightly longer version: I used them about 6 weeks ago to set up a LLC. At the time there was some wording about "wow you also get a free trial of lame-service-you-don't-want!"

There was no way to opt out of said free trial.

I did get an email 2/3 of the way through the free trial reminding me that I had only 10 days left to enjoy these *cough* benefits... but not a word about "you will automatically be billed if you don't pick up the phone, call us (there is no way to cancel via their website, even if you try), and listen to our rep reading a script designed to make you feel silly about canceling".

Since I never agreed to automatic billing, I went about my business. Lo and behold -- without a single additional email making clear what was going on -- my credit card was recently billed for $7.99.

Now, $8 is not a Big Deal, but I'm loathe to pay for things I didn't want, didn't request, and didn't give someone explicit permission to bill my credit card for.

So I called the 800 number that was provided (again, you can't cancel via the website, only buy).

While the rep was courteous, they made it clear that company policy was that there are never any refunds for "services" like this that were added (a) without my option, (b) without my desire, and (c) without my using said service during the period I'm being charged $8 for. Even if it makes the difference between a satisfied customer and one that feels taken advantage of.

Let me clarify: LegalZoom would rather have my $8 than have a customer who feels they were treated fairly.

Now... given that these cats are lawyers, I have zero doubt that what they did here was 100% legal.

But it also sucks big hairy moose dick. And it's no way to run a business.

So if I ever have the opportunity to recommend a legal service, it will not be LegalZoom.

Shit; they're treating their customers as bas as cable companies or cell carriers, but without the lock-in effects those other companies have... it's almost like they *want* to fail.

Let's help them fail.

New year, new blog, new experiments...

I'm a huge fan of Monthly Experiments.

Try on a habit for one month, like you are taking a new outfit for a thorough test-wear... try it on, live with it for long enough to understand how it fits (or doesn't) into what you want your life to be.

At the end of the month, decide whether to keep the new habit, tweak it, or let it go. With just a little experiment every month you can create an entirely new life by the end of the year. Groovy.

For January 2014 my experiment is "write every day", and I've decided to start a new blog over at ItsAlwaysMorning.com to think out loud about living more intentionally.


Here's my current writing plan:

• Personal growth experiments, inspirational ideas I come across, experiments in work-life balance, and projects I undertake (including thinking about a lifestyle business) will live at ItsAlwaysMorning.com

• Everything I learn about startups as I try to help build Coursefork (my friend Brian's company) will be shared at SteveReaser.com.

• Personal bits and pieces that don't fit into one of those broad themes will continue to land here, as I need to get them out of my head.

So yeah, this is a bit messy, but let's give it a go and see where it takes me!