Just Wait and See: Always bringing awareness

January 08, 2014

Always bringing awareness

Look at these cute g-tube covers that I had made for Sadie.

Always representing and bringing awareness to Rare Diseases!

Always representing and bringing awareness for Mitochondrial Disease!

Always need to be stylish!!

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Psalm 139: 13-16 (The Message)

Oh yes, you shaped me first inside, then out;
you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,you know every bone in my body;
You know exactly how I was made, bit by bit,how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
all the stages of my life were spread out before you,
The days of my life all prepared before I’d even lived one day.

Sadie's Diagnoses and Procedures

Heart
-Atrial Septal Defect
-Interrupted Inferior Vena Cava

Brain
-Pontocerebellar Hypoplasia
-Pontine Tegmental Cap Dysplasia
-Foreshortened Corpus Callosum
-Cranial Nerve Issues
*hoarse voice
*partial right facial palsy
*sucking/swallowing issues
*neurosensory hearing loss (deaf)
*unsure if she can taste or smell
*cornial anesthesia
*cortical vision impairment

Body
-Core is Hypotonic
-Microcephaly
-IUGR (inner uterine growth restricted)
-Cornelia de Lange Syndrome

April 2012
*G-tube/nissin/hiatal hernia repair
*Muscle Biopsy

December 2012
*Tympanostomy
*Skin Biopsy

March 2013
*Repeat Tympanostomy

April 2014
*Tonsils and Adenoid removal
*Repeat Tympanostomy

July 2014
*Open Heart Surgery (closure of ASD and AV canal, repair of mitral valve)

August 2015

*Bilateral Entropion repair