“Eye has not seen, nor ear heard, nor have entered into the heart of man the things which God has prepared for those who love Him.” 1 Corinthians 2:9

Sunday, September 11, 2016

A Bittersweet Goodbye

I like to think it was FAITH.
But to be HONEST it was more a combination of ignorance and stubbornness.
Her medical report from the orphanage is daunting.
Failure to Thrive...Marasmus 
Trisomy 21
Cerebral Palsy 
Atrial Septal Defect
Ventricular Septal Defect
Microcephalic
Albumin-enzyme 
Malnutrition
Pseudobulbar Paralysis
Vitamin D Deficiency

Sophia
Almost four years ago she was a ten pound four year old.....with just enough energy to stay alive.


In her orphanage she was fed through an NG (nasal-gastric) tube.
So thankful for that tube....even though the calories given through the tube were barely sufficient for survival...the water given through that little tube was her life source.

Pseudo-bulbar paralysis/palsy
  "a medical condition characterized by the inability to control facial movements (such as chewing and speaking) and caused by a variety of neurological disorders."
We were told she could not/would never... suck, swallow, chew.

One month after we arrived home we had a g-tube placed.

"A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow."

That little device became our best friend......it allowed us to gradually teach Sophia to eat and drink, without the worry of her caloric intake. 


And so today we say goodbye to her g- tube. 
She has been eating and drinking independently.....Can she eat a burger and fries independently? Not yet.....but she certainly can spoon feed herself most anything as long as it is semi- puréed!
And she can drink from a straw like a champ, without a single hint of aspiration.

We did not know if this day would come. We are so blessed and thankful that it did.....however Sophia has value because she is a Child  of God. Our Daughter. Loved and Adored..
G-tube nutritional  or oral nutrition? 
Non-.Verbal or verbal?
Wheelchair or walking?
Neither here nor there.....she is who she is, and we will do our best to help her become her best self, whatever that looks like.

So with thankful hearts we say a bittersweet goodbye to this g-tube. 



Post tube removal oatmeal!




9 comments:

  1. I've been following your amazing journey and although I'm a stranger many miles away, y'all have been in my prayers: Seeing this leap in just her physique is extraordinary enough. This news is something else altogether. So happy for her,for your family. But God. Blessings always.

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    1. Bless you for your prayers...they mean the world to us!!

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  2. Replies
    1. She truly is the sweetest/spunkiest girl ever!

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  3. Absolutely a wonderful miracle! What a great post!

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  4. Wow! She looks amazing! G tube has been the best thing for our Joshua. Glad she's doing do well. .praise God!!

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    1. We have had four on g-tubes....it is still life-source for Victoria. So thankful for that option... Hugs to Joshua!

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  5. Amazing! Our little one quit eating by mouth and is totally tube fed for now... Maybe someday she will eat by mouth again!

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