Tuesday, November 29, 2011

But still...

Thanksgiving vacation went well.  For the first time in a really long time, I felt calm enough to relax.  That's a relative calm given that we were only three days into the dietary changes and I wasn't in my own kitchen, but still...

It probably helped, too, that my husband and son drove to New Jersey separately and went home the next day while my daughter and I stayed until Sunday...

That we were visiting my daughter's favorite relatives surely didn't hurt, either...

Two loving dogs added to the package...

I thought we were doing pretty well... but still, it wasn't enough for her.  Sigh.

Friday, November 25, 2011

GFCF/SFCF

We took my daughter to a specialist on Monday.  He ordered four tests, but in the meantime, she is now gluten-free, casein-free, soy-free, and corn-free.  She is also supposed to be free of artificial ingredients, preservatives, and any salicylate-containing items, including berries, oranges, and tomato products, but I just can't do that part yet.

Part of me wishes that we could pack up and live in a remote mountain cabin for a few weeks to make this switchover (while someone else clears out and then restocks the pantry, fridge, and freezer before we get home), but it's not practical.  (Certainly not with the Science Fair coming up next week!!)

However, we have gotten halfway through our Thanksgiving week without a setback -- and only two "I hate this!" episodes -- so there's a lot to be thankful for!  I'm thankful for every GFCF/SFCF meal and snack consumed.  I'm thankful for a credit card not yet maxed out so that I can purchase these oh-so-expensive foods.  I'm thankful for the internet that lets me get started right away.  I'm thankful for a smart phone that lets me look up questionable ingredients while reading labels in the grocery store aisles.  I'm thankful for family and friends who share there knowledge and encouragement.

Here is tonight's dinner:




Rice macaroni with non-dairy cheese, salad greens with salsa, veggie chips, and GFCF/SFCF pizza, followed by a GFCF/SFCF "ice cream sandwich."  She ate it all!  So did I.

I would be so grateful for prayers, prayers that she would continue with this diet without incident, prayers that the tests will be useful, prayers that we find interventions that work, prayers for our family to function again.

Friday, November 18, 2011

Taking the plunge

We're taking our daughter to Baltimore next week to see a pediatrician who, according to other parents, can help us figure out the gluten/casein question as well as any vitamin/mineral issues.
Dear Lord,
Please guide us as we take the biomedical plunge.  Please help us to ask the right questions, to offer the necessary information, to hope without desperation, to trust Your plan for us.
Please guide the doctor to hear us.  Please open his heart and his brain to use his training and experience fully.
Please, Lord, let him not be a shyster.
Amen.

Thursday, November 17, 2011

The G-word

I have so much research to do.  My daughter has a first cousin with Celiac Disease and another first cousin on the other side of the family with gluten sensitivity/intolerance.  Is there a genetic component to it?  Could gluten/casein/other sensitivities be at least a partial cause of her issues?

How do I trust biomedical tests and interventions?

Sunday, November 13, 2011

Muffler

I want to write all the positives.  The negatives drag me down.  Her privacy muffles my voice.  Her needs tighten like a fist around my heart.  The intensity of every waking moment takes all my energy.

Though she doesn't have an autism spectrum disorder like her brother does, her issues are just as pervasive.  Like him, there is no area of her life unaffected...

We continue to live moment by moment, buoyed by the positives, drowning in the negatives.

Friday, November 11, 2011

Moments

Living moment to moment, some good, some not.

Playing together successfully stopped years ago.  Playing together at all stopped months ago.  Last night and again tonight, we -- all four of us -- played Scrabble and keep-away.  My kids have played Scrabble at camps, but we've never played it as a family.  We used the deluxe edition with turntable that my brother gave me decades ago, but we didn't use the rules.  I think this rulelessness irks my husband, but it makes for some lively tile laying!  And if I cringe with every wobble of a lamp during keep-away, oh, well, we're having fun!

Even though last night it transitioned badly, tonight, so far, hasn't become the crisis it could have been.

As I wrote the above, we moved into crisis mode.

Wednesday, November 2, 2011

Tuesday, November 1, 2011

Good place/bad place

You know you're in a good place when you say no to a child and the child doesn't hit you.

You know you're in a bad place when you say no to a child and you're grateful the child doesn't hit you.