Friday, June 27, 2014

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.