Playing together

Playing with toys and playing footsie

The gift of ruby.

I was talking the other day to Quinn's mom. We were discussing what having Ruby meant in our lives. She made a good point that I had never put into words before. She said that Ruby has probably freed you to see lila for what she is and except her for that and to enjoy her more. I think this is definitely true. I feel like I had gotten to a good place before Ruby was ever born, but she definitely frees me from being so sad about missing out on what Lila  could have been. She helps me focus on just what Lila is, a beautiful little angel who is in our home for just a few short years. 

First bumbo

My baby is growing up!

another Vici family!

While Lila was in the hospital I got a comment on this blog from another mother whose child has Vici syndrome. They live in wales and their little boy is four. They just found out he has vici a few weeks ago, and did all the genetic confirming with Dr jungbluth. It has been so wonderful to talk to her. Having another child about the same age as Lila with the exact same symptoms and problems is very comforting. Not that I would wish this on anyone, but it makes you feel not so alone. We have gotten wonderful suggestions from them on things that could help Lila. Their little boy seems to be doing pretty well. In some respects I think he is far more advanced than lila. He can lift his arms to play with toys and he is constantly smiling and laughing. Lila smiles and laughs but it is not a constant thing. Finding them is like finding long lost family.
I always go back and forth if I should make this blog private. It is pretty much my personal journal, but I have found three Vici families from having this blog and that is worth its weight in gold!

Halloween!

Sleeping beauty and the owl that she dances with in the forest. 

Cute Jammies

Make a wish key

"It is our deepest honor to invite you and your family to come visit the wishing place for the special occasion of making your wish. Please bring this key with you when you come for it alone will open the wishing room at the top of the wishing tower. We eagerly await your presence" 

Lila got her invite to Make-A-Wish. We are so excited. Our wish grantors are coming over this evening to come meet her and get to know her better. Excited for the process!