May is Neurofibromatosis Awareness Month

When you google Neurofibromatosis...Literally thousands of web pages come up, giving you mounds of information...Sometimes....This information is good...Sometimes this stuff leaves me feeling depressed, angry and scared.

THRIVING WITH NEUROFIBROMATOSIS is not about sugar coating the information...It's about learning how to deal with everything in a positive and productive way.

Three of my kids have NF...To varying degrees.

Bailey

2 Brain tumors

Moderate Scolosis and Kyphosis

Headaches/dizziness

Hearing loss

Learning Challenges

Aspergers

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Neurofibromas

Depression

Bailey is currently still on a break from chemotherapy.  She completed TWO LONG years of chemo, and while her brain tumors have remained "stable" for the last 6 months...They are both, still larger than they were, when we began treatment.

Bailey gets Hearing tests and MRI's every 3 months.

Braden

Left Side Optic Glioma

Moderate Scoloisis

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Autism

Learning Challenges

Braden has MRI's every 6 months, to monitor the optic glioma.  His vision has remained 20/20.  

Rachel

Growths in her brain

Vision Issues

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Sensory Integration

Bi-Polar

Learning Challenges

Moderate Scoliosis

Rachel visits the Ophthalmology Dr. every 6 months.  She has had significant declines in her vision and the drs relate this to "under developed optic nerves".  She receives OT/PT and gets MRI's once a year. 

NF can easily overwhelm our family...So we live by the "one day at a time" rule.

"When I think of what THRIVING means...I think of being strong and setting a good example"

-Bailey Age 17