Funday Friday

Today is Funday Friday! 

We do this for you Jaxson!

We dressed up as Batmom and Ninjago in honor of Jaxson today for Rare Chromo week. Whenever someone told us how much they loved our costume we mentioned it was for Rare Chromosome Awareness week! 

Movie date

I also went to go see Jurassic World with my oldest for a little bit of a mommy and JJ date. I like to make it a point in spending time with just JJ since I give a lot of attention to Jaxson with everything going on. We definitely had fun! Even bought some ice cream afterwards.

Batmom and Ninjago 

FLEX

Next year I will ensure that I have a flyer or brochure of some kind to hand out for Funday Friday!

How did you show support on Funday Friday?

Thankful Thursday

Thankful Thursday

Today I am thankful for....

Jaxson is no longer Failure to Thrive.

Jaxson can now stand unassisted for one to two seconds.

Jaxson can now take steps while holding my hands.

For our amazing friends and family.

For Jaxson's happy disposition despite everything.

How much my oldest loves Jaxson and wants to protect him.

Therapies that help Jaxson overcome this syndrome.. He surprises us everyday.

DYRK1A support page -- no longer feel alone in this journey.

For my strength and determination.

For my rock, my best friend, my husband James.