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Wednesday, July 10, 2013

All Things Khloie!

Remember this stoic little girly?

 That was 4 months ago!
This is now!  Notice the food on her face :)
Eating was an issue then.
This is no issue now!
 These two monkeys are a hoot together.
Every morning Kasidi announces, "Mommy, your baby Kwoie is awake."
 Even though girlfriend prefers her Mama above everyone else of course, she now knows how rockin' awesome her daddy and sissy Kenzie are too!
 So adorable.
 How I love her!
We have loved getting to know this little cuddle bug.  Her transition has been smoother than I could even dream.  Her personality is precious.  She has slept all night since the day she was placed in our arms!  Yes, really!

How is her development?
Thank you for asking :)
For weeks after we first held Khloie, she only spoke in a whisper.  Not anymore!

Her language is coming along.  Not at the rate I would expect, but it is progressing.  She understands everything we say, and she repeats most of what she hears.  However, she speaks her own language ~ Khloeze.  Some of her words are incomplete, and some of her sentences are out of order.  But she is talking!

She is growing.  She's gained 1.5 pounds and grown an inch.  I'm still helping her eat, although she wants to do it herself.  We celebrated last week when an entire spoonful reached her mouth! 

What do we know medically?
Thank you again for asking.
Khloie's referral stated her diagnoses as HIE, ASD and CHD.  Funny it didn't mention anything about her eyes, but we assumed that was a result of the HIE.
HIE is basically a lack of oxygen to the brain.  In Khloie's case this likely happened pre-birth.  We basically say she had a stroke, although lack of oxygen can be from other causes.  We had an early MRI, and requested a second from China, and frankly, it showed extensive damage.  As all her doctors have confirmed, if this 'event' happened to her now, she would likely be rendered totally dependent.  It is miraculous how the brain and body heal and compensate for early damage!  
We saw our physiatrist (a rehabilitation physician whose expertise is treating nerve, muscle and bone issues) last month, and he labeled her 'condition'  CP (cerebral palsy).  Honestly, he was a bit pessimistic for my taste, but he has laid out an extensive rehabilitation plan that affords Khloie the best chance of independence!  This will include speech and physical therapy.  He is concerned with her gait and that her right hip may dislocate if not corrected.  We will follow up every 3 to 6 months to mark her progress.

He referred us to the neurologist, who is awesome, and she has ordered an MRI for August 30th.  She also confirms that Khloie's level of development is miraculous.  Neurology will recommend a plan of action once we have the new MRI.

As for Khloie's eyes, her vision is perfect!  She has infantile strabismus, which will be surgically corrected on August 15th!  According to her doctor, she won't even need glasses!  We expect to see improvement in Khloie's walking after surgery.  She seems very cautious, and it's probably because she can't clearly see where she's going.  She will probably also be able to feed herself as her hand-eye coordination improves.

Her heart is another miracle!  The atrial septal defect is gone!  We will see the cardiologist again in two years to get a complete release.

What once seemed like frightening words on paper is now a road map for the future.  The future of a precious little girl.  Her name is Khloie Nicole, and she is my daughter!

For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11

3 comments:

MamaV said...

It is amazing to hear how well she is doing! She is SO cute, too!

Shonni said...

How AWESOME. What a miracle truly! She is so adorable!

likeschocolate said...

What wonderful news!

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