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!