Friday, April 08, 2011

Day 96: Airplane! (and an anniversary of sorts)

At 2 years and almost 22 months, Miles spotted his first airplane in the sky today (which is really Day 97...I'm just cheating and trying to catch up!).  It was super cute.  Super SUPER cute.
We've also got an anniversary of sorts to "celebrate" right now.  It was a year ago (at Spring Break) that we were told that Miles' genetic testing came back with some "holes" in it.  A week or so after we got back from break, we went to the geneticists office and met with them to discuss the new information about him and what that might mean for his future.  It was one rough visit.  So many answers...and yet so many more questions.  In the last year Eric and I have become nothing shy of "experts" on the 18th Chromosome- specifically the long (q) arm of that chromosome and what happens to a child when they aren't given all the genes that they need to form a complete chromosome.  We (I?) have been to more evaluations (sometimes I feel of me...more than evaluations of Miles) and doctor/therapist appointments than I thought possible for a child- yet we know that we are extremely blessed to have Miles in our lives, appointments and all.

Miles will be evaluated in the upcoming weeks for Early Childhood Special Education.  When he turns three (June) he will transition out of Early Intervention and into ECSE.   We're not worried about the eval at all- which is a complete turnaround from how we felt for his initial eval at 14 months- but we ask that you would pray for the service coordinator that he is transitioned to.  His current coordinator is really wonderful and super supportive and a great friend/teacher to Miles.  We pray that his next coordinator (who he could have all the way until he starts Kindergarten) would be the perfect fit for him...and us as parents.  It is an interesting experience having a mandatory reporter in your home observing your interactions with your Special Needs TWO YEAR OLD weekly (yes, I know Eric is a mandatory reporter too....but I don't think he counts on this one).

Just practically- please pray that Miles would show great progress  from last time on his eval.  I have personal hope that he will be about 20-24 months old on paper at this eval.  I don't think I'll be crushed if he hasn't made progress to that point, but I would be so happy for him if he did!!

Okay, if you read this far- you're a star.  Thanks.  And if you are curious:  Miles is 18q- (or Distal 18q Deletion).  More info can be found here if you so desire.
;-)

3 comments:

Mars said...

I love this. I love Miles. He's just so awesome. Seriously. You guys ARE so blessed to call him your own.
You have done so much with him, too, it's overwhelming for ME to think about. I get such a small taste of all the "therapy/appointments" stuff with Charlie. I can't imagine having MORE therapies and appointments...plus 2 more kiddos to coordinate all of it around! Anyways, it's obvious that all your hard work is paying of for Miles. :) What a little sweetheart.

Kate said...

Definitely keeping you guys in our prayers! (always, but particularly this month!) We SO enjoyed meeting Miles last fall and love to see how God is growing all of you!

Tracie said...

Guys, you are always in our prayers- as well as being on the prayer chain at church always.
Leah, my heart goes out to you-- you are such an excellant mother, and to have to live under the microscope of a parent with a special needs child- has to be such a challenge. Sunshine, you I know are strong enough to handle what comes your way. I so admire you!
My love to all,
Aunt Tracie