Sunday, November 27, 2011

Getting into the Christmas Spirit!

I Love putting up the Christmas Tree!! Especially since Lila loves the lights. I wish we could have it all year round.
She watched the lights twinkling all night long...

I thought I would post some of our favorite decorations. One of my favorite most cherished decorations is the nativity that I got while in Kenya.
Unfortunately the llama and Cubbie got into a fight one year. I think Cubbie won.
This year we have a brand new cherished keepsake. My mom's friend Freda made us this beautiful stocking for Lila. I was so incredibly touched that she would do that! I have never met her but my mom has told her all about our sweet angel. We will put this out for years to come, even after Lila has passed. What an amazing gift!
While going to pick out our tree Lila was supporting her daddy's team! I think this headband is so adorable. Thanks Kathy!
Another keepsake. A clay nativity that Quinn got in Chile. It s so fragile I am so glad its still in one piece. (knock on wood)

Saturday, November 26, 2011

happy thanksgiving!!!

Thanks Grandma and Grandpa!
Kimball, Joe, Lily, Poppy and Marissa
Poppy, Kimball and Eli
Introducing new BABY REMY!!!! We are so excited to have this little guy in the family. He joins his adorable three older brothers. He is so tiny and such a sweetie. I thought he looked just like Eli but now I am leaning toward Jax. Either way he is so cute!!!
Lila and Lily~
Kathy, Jory, Jonah and Jax
Capree and Brady
I love when Lila falls asleep. (probably cause it doesn't happen a lot) but she looks so cute. Quinn calls this face "catching moscas" Aka Catching little flies...

Thanks for a wonderful Thanksgiving!

early thanksgiving

This is where Gracie ends up most family nights. I love it. We are so blessed!

Gracie was so sweet to lend Lila her Giraffe. According to Grace they are Lila's favorite animal. She told me one day at the Zoo that we had to make it to the Giraffes for Lila, I asked why? She told me they were her favorite animal. I said how do you know that? She said, she told me when I asked her...
Thank you for a wonderful thanksgiving!

Tuesday, November 15, 2011

Genetic results from London

The geneticists and researchers in London called our doctors last week to tell us the results of the blood work that we sent off to them. Lila does indeed have the mutation that they believe is responsible for Vici Syndrome. It is our first abnormality in all of the genetic work up that we have done. They also found in our blood where Quinn and I are carriers. It all will become much more official once they publish, but as our neurologist told me this just makes him 99.9 percent sure its Vici instead of 99 percent.
This is so bittersweet for me. I guess its the end of our searching, and it does give us hope that future children are possible through IFV and genetic screening yet it means that my sweet little girl will not be with us for very long. I truly can't imagine being without her. The only silver lining for Lila is (and I wont even try to explain because frankly I really don't even understand it myself) they can tell, by the type of mutation, that she is on the less severe side of Vici. Hopefully this means we will have her longer than most and that she will accomplish more than most Vici children.

Tuesday, November 1, 2011

Our amazing David Perry Video!!

Here is our wonderful Video by David Perry! ( I explained the story behind this video a few posts ago) What a wonderful gift.
Thank you again David! You will never know how much this means to me.
Thank you Rachel for setting it up!

If it says you need a password its : Lila (case sensitive)


Happy Halloween!!!

Lila was a strawberry fairy. So adorable.

The Kimball cousins. Poppy, Lily, Lila, Jonah, Kimball, Eli, Jory (the Uncle) and Jax.
Gracie, Lila and Evie were pumpkin perfect in orange.

This is what Quinn wore to work. I guess its nice to be part owner....

Trick or treating at Grandmas and Grandpas!

Calder, Evie, Grandpa, Grace, Grandma, Lila and Ben

Happy Halloween. It was such a beautiful day! Its hard to believe its now snowing today. That's Utah for you.
Lila was gorgeous as a little pink strawberry fairy. She was kind of having a rough day. I think her teeth were bugging her so she was very teary, poor baby. She was also coming off of a bad day on Sunday. She had probably over ten seizures. Its so weird, we wont see a seizure for like three weeks and then all of a sudden have a rotten day. She is such a little trooper though. Still giving me smiles through it all.