Health Conditions

To date, Peyton remains a mystery.  She has no formal diagnosis, but she has a multitude of health issues.  Here's a list of her conditions at a glance:

Known Issues at Birth:

* Dandy Walker Malformation {note: she does not have Dandy Walker Syndrome!}
* Underdeveloped cerebral cortex
* Moderate to severe sensorineural hearing loss in both ears
* Bilateral cataracts
* Glaucoma
* Hip dysplasia
* Heart murmur

Other Issues That Have Developed Since Birth:

* Chronic lung disease
* Hearing loss has become severe to profound in both ears
* Feeding / swallowing issues / aspiration - all of these combined resulted in the need for her to have a PEG tube {later a g-tube then g-j tube} and a Nissen Fundoplication surgery
* Hydrocephalus - required placement of a VP shunt
* Severe central and obstructive sleep apnea
* Mitral valve prolapse / mitral regurgitation
* Digital clubbing
* Seizures {for a period of time in 2009 and a few possible episodes in March 2013}
* Severe copper deficiency {discovered in late 2012}
* Extremely brittle bones {discovered in February 2013 when she was discovered to have a fractured right tibia, fractured toe on her right foot, fractured left distal radius {wrist}, and two vertebral compression fractures - T7 and L2}; it is not the typical "brittle bone disease" you hear about, but rather a result of numerous issues related to her overall condition; in March 2013 fractured right distal femur and 5th metacarpal of her left hand
* Required her first blood transfusion on Good Friday - Friday, March 29th, 2013; second blood transfusion received April 7th, 2013
* Required her first albumin infusion on Monday, April 1st, 2013
* Severe iron deficiency {discovered in April 2013}
* Zinc deficiency {discovered in April 2013}
* Began TPN nutrition Wednesday, April 10th, 2013


At the time I am writing this {1/14/13}, Peyton is 6.5 years old.  She is developmentally like a 6-9 month old baby.  She has very poor muscle tone and motor control.  She is unable to walk, talk, crawl, sit, stand.


Peyton passed away on Saturday, May 4, 2013 at 6:12am {by our time} / 6:26am {official as pronounced by the doctor}.  She was 11 days shy of her 7th birthday.

Cause of death: hypoxia, stenotrophomonas pneumonia, chronic lung disease, genetic disorder of copper metabloism

Other significant conditions: severe mitral regurgitation, osteopenia, pulmonary edema, severe gastrointestinal malabsorption

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