Thursday, May 2, 2013

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
Cafe au Laits + Freckling
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
Cafe Au Laits +Freckling
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
Cafe au Laits + Freckling
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

3 comments:

  1. I love this post. I mean I really really love it. Did you know that May is brain tumor awareness month also?

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  2. May 17 is World Neurofibromatosis Awareness Day. It has been for the last 2 years. Hopefully it will soon be recognized a lot more soon!


    Regards

    Chris

    ReplyDelete