How NF Affects MY kids

BAILEY

"I accept NF, I know it's part of who I am. Sometimes I'm nervous, but I always try to keep a positive attitude about it."

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Bailey was a healthy baby, developing normally.  It was when she started Kindergarten that we began to notice learning delays.  The birth marks on her body were "no big deal", since Bailey was hitting developmental milestones.
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 callosum 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 2011...

After ONE YEAR on chemo, the tumor has grown twice.  So we are trying a different type of "at home" chemo, in hopes that this tumor will shrink. As of June 2012, the tumor has shown growth again.

Bailey chooses to deal with all of these issues with a brave and positive spirit, 

and I couldn't be more proud of her!

As of March 2013....We have decided to go OFF chemo.  Bailey's bones and degenerative disk disease continued to get worse.  The break was needed, so Bailey's body could get strong.

As of March 2013....MRI's showed STABILITY!

March 2014- Continued STABLE MRI's!

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BRADEN

"Having NF doesn't bother me much. Sometimes I worry about my mom and sister, but NF is ok." 

Braden was born 6 weeks early, spending 2 weeks in the NICU.  He had developmental issues from the very start.  Braden has been in speech and occupational therapy since he was 3 yrs old.  He received an IEP in school starting pre-school and this has followed him through the years.
He has retention problems,  Apergers and ADHD.

Doctors never mentioned NF....Until I was diagnosed.   Braden was 11 yrs old.

Braden has cafe au laits, and several tumors on L5-S5 of his spine.

His yearly MRI in December 2010 found a brand new 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.

For now, Drs are just watching Braden...but have suggested, that he may have to undergo chemo therapy to treat the tumors.  His vision is 20/20.....And he sees an Ophthalmologist that specializes in NF every 6 months.

Braden has a sweet and tender spirit and gives the most awesomest bear hugs!

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RILEY

"Sometimes I feel bad, because they have to get MRI's and see a lot of doctors."

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.

www.thrivingwithnf.com

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RACHEL

"I feel good, I am different and I like that!"

Rachel has had vision troubles since she was 4/5 yrs old.  The doctor noticed crossing of her eyes and was worried.  While some crossing is normal.....THAT plus the NF was cause for concern.  An MRI did not pick up Optic Nerve tumors, but did pick up a basal gangelia mass, Optic pathway narrowing and under developed ventricles.
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.

Read more by going here--> More about Sensory Integration Disorder

Despite all the issues, Rachel is happy and spunky.  She has many friends both at church and at school.

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RIKER

 "I love my family lots and lots! My family is happy and I am happy too. I like to tickle Mommy's bumpy's."

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.  Brooklyn is a fun spirited child who is always on the go!  My snuggle buddy who makes me laugh!

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.

After my "wake up call"...was when 3 of my 6 children got the official NF diagnosis.  Soon after that...THRIVING WITH NEUROFIBROMATOSIS was born!