Monday, September 10, 2012

lila update.

ohhhhhh kay!
i keep forgetting to update you all on sweet lila.
chromosome test came back normal.
praise God.
hearing test came back perfect.
praise God.
my attitude came back weird. happy and sad at the same time.
i want an answer. just anything. a label? no? waiting?
ok, God. what's happening here?
you have a plan, right?
(lila at one of her countless doctor's appointments and not too happy about it)

i know that He does have a plan and that's why it's called faith. you can't see the road in front of you but you know that He's directing your steps.

anyway, all that to say, she's in a phenomenal developmental preschool getting therapy every single day for 2+ hours. and compared to the 30 minutes a week of speech therapy and one hour a month of occupational therapy, this is much more intensive!
we figured out that in the first week, she received 6 months worth of therapy. boom.
and we received a bill worthy of that in the mail shortly after. sarcastic YA! 
all worth it, though.

her therapists have lots of hope for her and are thinking that she'll be able to attend kindergarten or first grade, catching up with her peers over these next 2 years.

and it should be noted that lila is happier than ever. not potty trained, but happy!

so you can imagine our emotions and thoughts have swung to and from extremes...from chromosome disorder to catching up normally. and i will say, pressing into what that means for our family has been sanctifying and good and really hard. coming to terms with your inability to control situations is so good. in a slap-you-in-your-face-repentance sort of way. sometimes i need that.

and that's where we sit right now.

honestly, i don't think we're out of the mud right now. there could be something that pops up later that they can diagnose her with or perhaps it is simply a giant developmental and speech delay that needs some serious therapy.

but i feel good finally... like i can breath. she's in the right place finally. and i don't feel alone, nor do i feel like her treatment is up to my untrained self. i would be a terrible special needs teacher, i've discovered. you therapists out there are amazing and you have a gift. while i have the spiritual gift of impatience.  sigh.

i've been alone in fighting for treatment for lila for 2 years and now i don't have to do that at this moment. so that feels really relieving. i am able to step back from the situation and rest and watch lila improve in little bits and pieces every single day.

thank you inter web world for praying for my daughter, a complete stranger. i am proud to be among a community of believers that carry my burden with me.


 now we're off to buying a pony for the princess! NOT.