Tuesday, June 14, 2011

Standing up

I am relieved that at 8 months, Cupcake is already standing on her own.  She pulls herself up, and then lets go of the raining and balances on her own two feet.  I mean, I don't really care if she's standing or still sitting from a holistic level (really, what's the hurry to walk, where does a baby have to go?).  But rather, if she's strong and shows lots of muscle control, they probably won't need to do full blood work at her next metabolic appointment.  At our 6 month appointment, our doctors decided drawing blood wouldn't be necessary because she could sit so well.  I'm hoping the next appointment goes similarly.  I just don't like my little baby girl getting blood drawn.  It's necessary, and I support preventative medicine, but it still makes me sad.

So far it seems MCAD has been kind to us.  One of the side effects we were warned about is decreased muscle development.  It seems it's not uncommon for kids with an FOD to have problems with their physical development.  So far, we haven't had any issues with delayed muscle control/strength.  Au contraire, Cupcake seems to be standing and reaching for things way ahead of schedule.   And for that I'm grateful.

Here a little secret, and I hope I don't ruin my good Karma by sharing it.  On New Year's eve, we played a game where you would write a wish on a piece of paper, then at midnight we all threw our wishes into the bonfire.  The usual superstitious shenanigans, and aren't those the best part of New Year celebrations?  I wished for no metabolic crisis.  At the time, Cupcake was only 3 months old, and we were terrified of what her diagnosis would mean for us during her first year.  I'm glad I made the wish; so far it seems to be working.  Maybe she would have been asymptomatic this far regardless, but the wish really stuck with me.  I wished with all my might that she be healthy, and that we would have the wisdom to prevent a crisis by feeding her.  I wished wonderful things for all the people that advocate for mandatory screening.

I know she could still get the stomach flu and need an ER intervention.  But with every passing month I feel more in control.  Our doctors said the first year could be the toughest, and I'm glad we're 3/4 of the way through.

1 comment:

  1. I've been absent from commenting as of late, so excuse me if I leave a trail of comments on your blog!

    That is SO awesome that Cupcake is so strong and has not had a crisis yet. We had 3 within about 4 months. It sucked but you get used to it (which also sucks, by the way).

    The older they get & the stronger they are, the better their little bodies can handle it if a crisis does occur. I hope you continue to have smooth sailing!!!