About us (the short version)

Well duh – I’m Becca’s mom.  I don’t have a cape.  No magic powers.  I’m not some kind of super mom.  Just a regular run of the mill mom.  But I am mom to a child with special needs.  And no – it doesn’t take some kind of special mom to do that job.  It just takes someone who has the heart of a parent.

My sweet Becca was born with Neurofibromatosis type 1 (which I also have).  At about 2 months old she started having seizures.  Rebecca has been treated with Chemo for benign optic gliomas (tumors on her optic nerves).  She also has a shunt for hydrocephalus (which has been replaced twice).  Don’t forget the severe developmental delays.   For her seizures she has tried multiple medications, has a Vagus Nerve Stimulator and is currently on the Ketogenic Diet.

Throughout it all she is a loving, snuggly child who never ceases to amaze those around her.  As she has gotten older I felt it was time to abandon the old caringbridge site I maintained for 4 1/2 years in favor of something new.  I got tired of entries that were either “seizures are worse”, “seizures are better”, or “about the same”.  I wanted something in a format where I could focus on her life in general.  What she is doing, how she is growing, etc.  Of course, I’ll still update about her health as needed, but that won’t need to be my focus.

Well thats me (well Becca – I’m just the mom) and why we are here.

One thought on “About us (the short version)

  1. Our daughters sound a lot a like. Mine doesn’t have Neurofibromatosis but she does have tvery similar seizures we have a lot more tonic clonic. I would love to talk with you (e-mail). We failed the keto diet have tried all the drugs getting ready to try clobazam (sp?) we haven’t tried the VNS does it help your daughter? Thank you soooo much for sharing your journey with us I don’t feel so alone when I read about Becca.

    Denine Vestering
    dkvestering@pixius.net

We love comments. Please talk to us

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s