JOURNEY TO US: Playful Ben this morning

December 1, 2009 4:02pm

April 28, 2013 4:08am

Always smiling! loves his jack in the box, books, roller coaster and sensory box.

Mitochondrial Disease : Complex I, Complex III, OXPHOS, Mitochondrial Myopathy
Neuro ~ Seizures, overall reduced background waves (cognitively impaired...although I HATE those words), restless leg syndrome
Eyes ~ Nystagmus, Strabismus, Amblyoplia, 1 far/1 near, Delayed Pupil Reactions
Ears ~ Sensorial-Neuroal hearing loss, Funcationally Deaf
GI Tract ~ Esophageal Motilty, Gastric/Intestional Motility, narrow pyloric valve
Heart ~ PFO, heart murmor, high heart rate, Calcified Leasion
Lungs ~ Reactive Airway Disorder, permanent lung damage, Central Mixed Sleep Apnea, shallow breathing
Muscular ~ Hypotonia, Slight CP, foot drop
Endocrine ~ Hypoglycemia, growth hormone deficiency, Adrenal Insufficiency, Autonomic Disorder
Blood ~ Factor V Leiden, long term anemia issues
Renal ~ Hydronephrosis, UPJ Obstruction
Overall ~ NPO, nutrition thru J tube, water/sugar/some meds thru his Hickman.

Special Quotes

"You've developed the strength of a draft horse while holding onto the delicacy of a daffodil...you are the mother, advocate and protector of a child with a disability."

"Children remind us to treasure the smallest of gifts, even in the most difficult times."

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."

"Every child is gifted. They just unwrap their packages at different times."

"I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
and I wanna live every moment until that day comes
I wanna show her what it means to be loved."

Inspiration

"Better than a thousand hollow words, is one word that brings peace."

"However many holy words you read, however many you speak, what good will they do you if you do not act on upon them?"

"No ones saves us but ourselves. No one can and no one may. We ourselves must walk the path."

"Teach this triple truth to all: A generous heart, kind speech, and a life of service and compassion are the things which renew humanity."

"There are only two mistakes one can make along the road to truth; not going all the way, and not starting."

Thursday, November 13, 2008

Playful Ben this morning

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