Monday, December 8, 2014

Sensitive Santa 2014

Saint Francis University Secret Santa. 

Ava had a good time with Santa again this year! She was at first a little leery of Santa, but she soon warmed up and they gave each other high fives, sat and talked, she even danced a little bit to his singing!! So happy for this program!! We saw "Santa" several times already this year at various places and here is the only one she will get close to without being too terrified. Thanks SFU, Santa, and the Autism task force.. we appreciate it so much!!

She just saw Santa!!

Just a little worried.

After a few mins they were holding hands,

  and giving high fives!

She gave him a small hug this year.

Happy!!  We had such a nice time!
 This is something that we look forward to all year.  
Til next time Santa  <3

Friday, November 21, 2014

PA Resource Page has been updated

I have updated a few things and added some more resources on the page.  Check it out or if you know of a loved one with a special needs child/person,  please send them the link.  Some of this information is not widely known and can benefit the people that need it most.

Trip to the ER

 Whew it has been a busy time for us!  Ava was in the hospital last week for high fevers and dehydration. She had some type of virus, that left her really sick.  She didn't move from the bed from Tuesday until Friday.
   I knew she was starting to feel better when she moved to the chair.

 And in typical Ava fashion, she leaves on her own terms and pushes the wheelchair instead of riding in it!

She is still not 100 %  but she is getting there! 

I am going to try and be a little more active on here.  I have just been overwhelmed with a few things and our blog was pushed to the back.  Hopefully I can find the joy of writing again and post some awesome stuff in the near future!

Thursday, October 9, 2014

Updating Blog

Please be patient as I am trying to update Ava's Blog template. Hopefully it will be only a day or 2. Thanks!

Wednesday, September 17, 2014



 Ava is one of only an estimated 400 diagnosed cases in the WORLD!!  As the technology grows to diagnose Kleefstra, the numbers are rising. We need to get awareness out there, so that the information is out there to help those that need it.   For the past eight years, I have always educated and advocated everywhere Ava went. She is always a first case scenario and I have to take 2-3 binders full of paperwork to every first time appts that she has to make sure the Drs, therapists, etc know what Kleefstra Syndrome is. 

I have also written Ava's Blog for the past 8 years.  It has been a labor of love, pouring into it everything about Ava and Kleefstra Syndrome.  There have been a few times where I thought I would stop it, but then someone always contacts me and tells me how much Ava's Blog has helped them, so I keep at it.  

To learn more about Kleefstra Syndrome and how it affects lives go to

Help Ava and I Raise Awareness for Kleefstra Syndrome. Please Share this blog post! 

Wednesday, September 3, 2014

Autism School~ Ava's New school


First day of her new school was last week. I was worried about all the new changes, but so far she is doing great.  She has been so vocal the past month, and signing a lot more. I can't wait to see what the future holds for her and us. 

Getting her back to school hair cut.  No Problem!

Waiting patiently for the bus.

 I said, blow me a kiss!!  And she did this lol

Hanging out in a sensory swing.

Some cool features of the school. 

Saturday, July 12, 2014

Perfect Day

So this summer has been a busy one. Ava has been going to Autism camp, and extended school year. She has her good days and her bad days.  Transitioning, ANY transitioning is extremely difficult for the most part. We are just taking it a day at a time, it's all we can do. Every day is different and we never know how it's gonna go.  Today after alternating between building blocks and you tube videos all day. Her dad and I said enough and we put her on the bike. It was a little rough til we got her strapped in and going, then she settled down and got to work. She pedaled around 2 miles and at one point, I left her pedal by herself and I had to RUN to keep up with her!  

Here is a cute collage from last week, she was being so silly!!!