Thursday, August 15, 2013

4/3 years old!

Thank goodness I'm cute...
Our "Maddie Maddie" is 16 months old today.

Hard to believe. The last few months have been a blur as we've doubled down on trying to get her back on track; it's still been impossible thus far to get all of her prescribed therapies in, and she's not finishing her pitchers of formula these days... which just means we have more work ahead of us.

She's 16 months; but in many ways is the equivalent of a 6-month-old. She's responsive and interested in people, toys, etc... but is stuck in a body that just hasn't developed yet.

We'll get there -- and today things are still far better than they were just a few months ago -- but just for posterity here's where we sit today:

  • She can't yet walk, crawl, hold in "4-point", or even sit unassisted.
  • Still waiting for that first real word! (by now Sydney had a 250+ word vocabulary)
  • Spending ~20 hours/day tending to Maddie, one way or another...
  • Fighting constantly to get enough food in her g-tube
  • Alternating nights "on duty"... she is on the pump all night, so you need to change the bag once around 1-2am, and also need to vent Maddie between 4 and 10 times a night. We tag out at 6am so the night person can get a three hour nap, at least...
  • In theory, we're supposed to have her in her ankle braces at least an hour in the morning and in the afternoon.
  • Should be putting her in her stander at least twice a day...
  • Should be practicing eating purees 2-3 times/day...
  • Floor time -- she needs as much as she can get. But with her tummy it's a challenge to get 10 minutes/day.
  • Poops and baths are generally a 2-person job, due to the vent tube.
  • Bubbles vent gurgle vent bubbles vent vent vent... aaaaaarch!... vent...
She clearly wants to move and do things, which means everything. And at least we are, perhaps, done with the retching at last! Nothing we did; she seems to finally be growing out of that... and it's been a few weeks at least since the last non-stop full-volume inconsolable thrashing and screaming fit at 1am. (Wow gas pains are fun, right?)

Still things are progressing, albeit slowly. One day this will all just be a memory. The day we get to purge our house of all the medical supplies that currently occupy her room and the kitchen -- well, that will be a beautiful day.

"We put one foot in front of the other..."