Daddy teaches Victoria how to ride a trike.

Whose child is this?

I usually let Victoria decide what to wear and today, for her first full day of school, was no different.  

Victoria picked out a PINK dress and PINK (not quite matching) headband.  She also *insisted* on wearing PINK shoes, and on bringing a PINK purse and her PINK doggie to school.  

How is this my child?  Oh my.

My Favorite Things...

Bertrand sat up on his own last night!!!

Uncle Boojie celebrated his 28th birthday!

Titi Aury started her first semester at the U!

Victoria had a great play date at Red Butte Garden!

And, Victoria is pumped to see her class frogs and new teacher Ms. Jessica again tomorrow!

More Porchfest 2013

She already dances better than both her parents.  ;)

Porchfest 2013

Today we had a great time with our friends and family at Porchfest.  Wow.  There were some very talented artists!  Can't wait for Porchfest again next year.  :)

2nd Living NGLY1 Male

Early this week we had a skype chat with the family of the 2nd living boy with N-glycanase deficiency.    (In case you're keeping count, that is known NGLY1 case #10.)

Yes: I finally got to see and interact with another NGLY1 child!  Oh, my heart!  He is so beautiful and dear, and his mannerisms are so similar to Bertrand's!

The experience was *profound*  ...and a bit bittersweet.  While I am overjoyed to find even more families who can relate (and his parents are amazing!), it breaks my heart that other children are facing the same struggles as our Bertrand.

Seeing that sweet boy put things in perspective.  We are fighting for more than just Bertrand.

As both my kids start school, I will start work--for all kids with N-glycanase deficiency.

Victoria Starts Pre-K

Today, Victoria attended her preschool open house.  She LOVED it!

She did not want to leave!  We feel fortunate to have two enthusiastic scholars in the family. :)

Actually, make that three!  Today, we also moved Aury into the Univ. of Utah dorms.  Go Utes!