Maddie is Turning Three
April 4, 2015
Maddie will be three years old in a week or so. Wow that’s depressing…
Mainly for my own easy reference, here are all my old blog posts on the topic — wow I was naive two years ago when I said “hopefully this will all be over soon”. Really could not imagine at the time that we would still be in basically the same situation at age 3.
June 2013 — one year into the ordeal:
August 2013 — Maddie hits 16 months…
September 2013 — We switched to a GJ tube and for a brief while I thought we were getting somewhere:
November 2013 — Can you believe this is all because of stomach gas???
April 2014 — Checking in at ~2 years old
June 2014 — 26 months; just had to do a brain dump…
So now here we are at age 3. We’re still just trying to get through each day. Still no real progress on any of the major things: can’t talk, can’t eat, can’t stand — hell can’t sit up unassisted.
Still feeding her through the g-tube 22 hours a day, and dealing with painful tummy gas every 15-30 minutes. Still retching a few times per day.
It’s fucking groundhog day over here.
She doesn’t look like a baby anymore; her face has developed into that of a sweet little toddler. But no toddling… just holding her for hours on end, including lots of thrashing around and crying.
What is Going On???
Something isn’t right here. We still don’t have a diagnosis; but more to the point — nobody else that I’ve ever heard of (we’ve asked doctors) seems to have had this kind of tummy gas problem. In theory we’re supposed to just push in a couple ounces of food every hour or two and unhook the g-tube extension.
If we could do that, we’d be in heaven.
We have her hooked up to an expansion tube literally 23 hours per day. She’s only off for therapies and perhaps a bath. Holding a toddler with an open tube of tummy contents all the time just doesn’t work.
Has anyone else out there experienced this? I would truly love to find out and compare notes.
Nursing Help (through Medicaid) is Saving Us
Thank goodness for our nurse aide; we have help about 24 hours/week now, which is the only way I can get anything done at all. And she’s great… she actually suctions the tube just like we do to relieve Maddie’s stomach bubbles. No way I would ask anyone to do that; as a parent you just do… but Silvia has just adopted whatever she has to do to make Maddie comfortable. Wow.
Her nursing and therapies are being paid for by Medicaid. Fuck anyone that goes around hating on government and wanting to cut everything… real people are helped by these things. Real people are hurt when you cut them.
The thing that’s really bugging me is that Sydney has started shutting Maddie out more and more. Rarely interacts with her, and always resists giving her a goodnight hug and kiss. Resists hard. Very sad to see. We had those two close together (~18 months) on purpose so they’d have each other… but they don’t.
Here we are at 3, and I hope I can write something so much happier at age 4. Until then, we just keep on humming “Carry On” and keep trying our best not to give in to the urge to strangle her.
Her birthday is coming up, so we need to have a little party — for Sydney to feel like things are normal more than anything else.
But to us, each birthday is a bitter reminder of how far we have not come. She still feels stuck in time as an infant, and three years of having an infant crying in your ear starts to get tiresome.