Thursday, August 30, 2012

Sweet Sounds

This past Monday, we went to see Dr. Miller up at Shands in Gainesville. Dr. Miller is Aerin's endocrinologist and is truly a stellar example of how doctors should practice medicine. It is obvious that she has a real heart for her patients, some 500 babies, children and adults with Prader Willi Syndrome. She was thrilled to see how much Aerin had grown and celebrated all of her achievements with us in such a way that we could tell that Aerin was almost as much "hers" as she is "ours". To have a doctor that is so much invested in your child's future is priceless.

We talked about starting solids soon (ack!) and getting going on more aggressive speech therapy since Aerin hadn't started babbling yet. It is one of the strangest features of this syndrome, this near silence. I set my alarm each night to wake up for feedings and have to crank up the baby monitors to hear her shuffling in bed when she wakes up from a nap because she makes no noise otherwise.

Speech delays are a common issue in PWS. Many children develop speech apraxia and remain nonverbal for a long time.  It is another hurdle that we face, not knowing if it will affect Aerin or how severe it might be.

And, as always, the Lord met us at that place of fear, hesitation and uncertainty. The next day she spent "talking" her little heart out! It's so precious to see her trying out her lips and cheeks, working against the low tone that weighs her every muscle down to form sound. When she watches us now, she intently watches our mouths as if to crack the code.

I'm just so proud of her, I could burst!

1 comment:

  1. Oh my goodness, that is the most adorable thing I have ever heard!! It brought tears to my eyes, what a precious darling. William keeps saying "lets see it again". She is always on his little mind and prayers for her constantly. I love it!
    We are keep lifting you guys up
    Love Hannah~
    PS She looks adorable on her little blanket ;)