Tuesday, April 1, 2014

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!