oh what to say

today's post is an update on b.  probably a lot of words.  but for those of you only interested in pictures, i'll post some pictures from Christmas at the bottom.  feel free to skip down there if you don't feel like reading.
i am blessed with so many friends and family who regularly ask how b is doing.  and i never really know how to answer.
on the one hand, she is as awesome as they come.

 she is joyful.  and content.  and loving.  and sweet.  and beautiful.  and kind.  and developing.  and seizure free.
and i wish i could stop here.  just focus on her awesome-ness.
but the reality is there is still this huge question mark surrounding her "health" that is not ignorable.
sigh.
in the beginning of december we visited a metabolic geneticist.  probably the best specialist we have seen so far.  the results of the meeting were:
1) two more blood tests.  still waiting for the results.
2) a declaration: her seizures and developmental delay are most likely caused by a genetic disorder.
sigh.  again.
as i drove home from the appointment i found myself not knowing what to pray.  not that i was angry and unable to pray.  i just didn't know what i wanted from God in all this.
there is a part of me (how large that part is, i don't know) that wants one of these tests to come back positive.  if it comes back positive that i can finally know the cause behind all the health issues.  if it comes back positive then i can start to understand her better: her strengths, her weaknesses, her limitations, her gifts.  (and, unfortuantely, this knowledge would probably give me a lot more patience when it comes to working with her on her development).  if it comes back positive then i can know better how to pray for her.  and play with her.  and encourage her.  if it comes back positive then we can stop testing.  if it comes back positive then we can start moving forward.  or so i think... to all the listed above.
but of course i don't want it to come back positive.  i don't want my daughter to have a label.  if it comes back positive then i have to let go of this hope that i hold onto that maybe, one day, she will wake up and it WILL ALL BE GONE.  not that the LORD can't work a miracle, no matter  the results of the test.  but if one of them does come back positive, then my hopes get shifted.  i guess.
bigger sigh.
so now, as i pray, i ask that the LORD would allow the test results to come back just as they should.  and that He would give me, and james, and the doctors wisdom in each step of this journey.  that we know what to do next.  no matter the results.  it's nice to know that i can pray like this.  that the LORD's goodness doesn't change.  that His faithfulness doesn't change.  that His plans are always for my good and for His glory.
so that's where we are, for now.  waiting.  and praying.  and knowing He is faithful.

and as promised... Christmas pics.

family sledding. loved by all, eventually.

have you ever tried putting mittens on a little hand??  requires serious concentration apparently.

b, aunt b and uncle eddie

piano with papa... and a snack

doll stroller, but g doesn't seem to mind

largest mr. potato head, e.v.e.r.

hey, at least the kids were looking at the camera