Thursday, May 24, 2012

june 19th

IMG_0703We are home from our post sleep study check up with Joya's ENT, who has looked at her sleep study results and cleared her for surgery on June 19th.

Apparently, she has some sleep apnea, but it is mild and triggered from her brain and not due to her physical birth defect.  I am amazed that a sheet full of confusing line graphs and number tables can tell us that, but then again, I didn't go to medical school either.

Her first surgery will be on the side of her face and her ear.  I could explain each step, but I don't have the time.  The plan is for her to have two surgeries, first her face, then her mouth - both in 2012.  We all hope that she won't have to see the inside of an operating room until elementary school, when she will have the first of several jaw surgeries over the course of her growing years.

IMG_0727We are celebrating today.  Although the surgery is not without risks, I am very ready to get the ball rolling so that we can live life and not be waiting to schedule our life around medical procedures.

I have stopped giving perfect strangers detailed explanations about her birth defect when they ask about (and sometimes reach out and touch) her face.  I'm sorry to say that the number of ridiculous responses and follow up questions has reached the limit of what I can politely respond to. 

I went into this all prepared and motivated to help people learn about and not fear correctable birth defects, but now she is my daughter, I love her, and I'm tired of defending her to people who clearly have no social skills when they follow up with questions about her HIV status or statements about the evils of the Chinese government that have absolutely nothing to do with my little girl.

Stepping down from my soap box now.

IMG_0696Overall, she is making some big steps of progress, which makes me giggle.  I no longer fear when she hugs a perfect stranger, because she immediately comes running back to me.  She can pick her brothers out of a school crowd and treats them like her brothers - with love, affection, thrill, and admiration.  She also asks for her daddy when he is at work, but seems to completely understand that he will come back.

Her sleep is not perfect, but tolerable and we can manage on the status quo.  She eats a lot of food, but is not stuffing herself until she is sick as was her tendency when we first returned home from China.  She only tolerates her car seat for short rides around town - longer than 20 minutes and she turns into Princess Whiny-pants.

Luckily, this isn't my first visit to the royal castle. IMG_0629 IMG_0735

4 comments:

Kathy said...

She makes my heart hurt. People are dumb. She is amazing. Love to all!

Cheri said...

I completely agree that the questions become out of control fast! I also like to educate but would prefer people to see my girls as the sweet children they are..instead of an intriguing Stories of adoption and special needs. They deserve to be greeted like every other sweet child in the world instead if bombarded by questions! Sorry , I had to join your worthy soap box:)

me said...

Jeff and I laughed that a 20 minute ride is considered "short" for the Sweeney family. There aren't even any places we could go in Rochester that would take that long to get to!

Tracy said...

Just caught up on some of your blog posts! :) It's hard to find grace for the people commenting...I totally understand! :) Praying for little Joya and your family. Your new normal is coming...we are seeing more and more of our new normal. Yea! Hang in there moment by moment...God is faithful! Tracy :)

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