BAILEY
GO TO Bailey's--> BLOG
NF was diagnosed officially when Bailey was 13. She had an MRI that discovered a brain tumor called an Acoustic Neuroma. Although, this particular tumor is more common with NF2, a similar disorder.
MARCH 2011- Bailey had her "every 3 month scan" to monitor her acoustic neuroma and we found another mass. This tumor is located on the corpus callorum and is now 5 times as large as it was 3 months ago. Surgery is NOT an option, as Drs are quoted to "never touch this area of the brain".
We started Chemotherapy on March 28th. A port was surgically placed...and Bailey will receive 57 weeks of Chemo. Follow her blog to see how this brave young girl is handling such big issues. I am so proud of her!
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BRADEN
He has retention problems, and ADHD.
Braden has cafe au laits, and several tumors on L5-S5 of his spine. His MRI in December 2010 found a Optic Glioma on his left optic nerve...and a plexiform neurofibroma under his left arm. He also has scoliosis.
Previous MRI scans did not show an optic glioma or plexis, which is why I am a HUGE advocate for pushing doctors to scan NF children every year....regardless of any symptoms.
He also suffers from Migraines, and aggression issues.
For now, Drs are just watching Braden...but have suggested, that he may have to undergo chemo therapy to treat the tumors that are growing. He is in physical therapy to help with muscle tone and help alleviate the pain he has been having in his back.
Try challenging him at video games! He LOVES his Ps2!
Braden has a sweet and tender spirit and gives the most awesomest bear hugs!
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RILEY
Riley does NOT have NF...But if there is anyone who understands how NF affects our family it's her. Riley is so smart and had this "old soul". She has gone to many of the NF related appointments just so she can find out more about NF.
Riley did a report in 4th grade about NF...She shared my book with her class and talked about how even though NF makes you different on the outside, people with NF are really the same as everyone else. It was amazing and Riley's teacher even read my book, because she was interested in learning even more!
Riley is a smart girl who enjoys playing the violin and listening to music.
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RACHEL
Patching and glasses have slowed the progression of vision loss...But has yet to fix the crossing.
She is always willing to learn and has an energetic personality.
Rachel has also been diagnosed with Sensory Integration Disorder, ADHD and has severe behavior issues.
Despite all the issues, Rachel is happy and spunky. She has many friends both at church and at school.
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RIKER
Riker does NOT have NF, but is still affected by it. He sees his mommy and older siblings go through so much....and he is always there, with a smile and a hug.
He calls the tumors on my body "Mommy's bumpy's" and is always telling me how pretty I am.
Riker has an amazing heart and he knows exactly how to make me feel better on those especially hard days!
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BROOKLYN
Brooky does NOT have NF either. After she was born, I would undress her every single day, examining her tiny body...Looking for signs of NF.
It was during my pregnancy with Brooklyn, that doctors FINALLY recognized Neurofibromatosis in me. It was a hard wake up call for me...But one that was necessary.
Brooklyn is a fun spirited child who is always on the go! My snuggle buddy who makes me laugh!
