Sunday, June 24, 2012

CHARGE Mom Angel

On Friday, I got the news that I knew what inevitable but I really didn't want to hear.
One of the most fabulous CHARGE moms had lost her brave battle with Melanoma.  She has 3 beautiful children including Eva who is 1 year older than Alexis.  She was always willing to share her experience and offer great advice.  For a fundraiser a couple of years ago for CHARGE Syndrome Foundation, she made beautiful bracelets with the name of each CHARGE kid.  She made wonderful purple ones for Alexis - and had enough material to make 8.  I bought all of them.  She was a wonderful spirit.
She always posted about butterflies - it was truly her spirit in another animal.  In the past 2 days, I've seen 3 beautiful butterflies and I know that all of the others who knew Crystal are thrilled at we get to have her spirit with us in butterflies.  
I'm writing to request if you have any spare funds, to donate to her website - she's been a wonderful inspiration to me and other families with CHARGE.

Tuesday, June 5, 2012

Alexis Speech Second Round of Videos

Here is another round of Alexis speech videos - thanks to her awesome SLP at Perkins!
Part A
Part B
Part C

Part C is especially funny since Alexis used to fit in that bathtub.  I will find old photos.

Monday, June 4, 2012

Alexis Speech Videos

Here are some fantastic videos of Alexis using her new speech device.  I'm really proud of her.
I would have never expected that having a speech device would make her want to eat more.

I am thrilled with the progress - she's really done fantastic!  Who knew that getting a speech device would make her so motivated to eat!! :-)