Friday, January 27, 2012

Happy 18 months Baby Lila!!

My baby girl is 18 months today. After having a brief breakdown on Sunday about it, I am feeling so grateful that she is here and doing well on this occasion. I wish today that I could write all the things she loves, how mischievous and rowdie she is, what new words she has gained, and how busy we are running after her. But since that is not our lot in this life, I can say with all sincerity that I am so grateful that she is here, that she is blessing our home with her love and warmth. Other Vici Children have left their parents by now. How lucky we are that we have not yet had to say goodbye to our child. Lila has blessed us in so many ways, and I am sure that as the years pass we will realize just how much she has given us. Tonight, thinking of our experience with Lila I am reminded of a beloved poem by Robert Frost:

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Thank you Little Miss for all you have given us!

Thursday, January 26, 2012

Stealing Poppy.

Our niece Poppy came over the other night for a sleepover. During the holidays I told Poppy she was so cute I wanted to steal her. Much to my surprise she said OK. It took me back a bit. I said, but that means I get to keep you for forever. She said OK again. I laughed about it, but Poppy didn't forget. She kept asking me when I was coming over to steal her. We made a few plans to do so but kept getting sidetracked. Poppy kept telling her mom, Aunt Kristi keeps forgetting to steal me. So the other night she came over and the girls had a sleepover in our bed. We had a lot of fun, even if the mattress was too hard and the pillow smelled like Uncle Quinn's head. She kept us laughing all night.
If any other nieces or nephews want to be stolen we would be glad to oblige.....

Monday, January 23, 2012

Thank you to our anonymous friends

Thank you to our anonymous friends who dropped by a present for our little girl!! It was so touching and was just what I needed.
This evening an adorable little boy knocked on our door and handed me a gift bag that included this sweet little lion and this note : (I hope that they don't mind that I share, I would ask you if I knew who you were but I thought your gift was very inspiring)

Dear Quinn and Kristi,
You don't know us. We heard about you a couple of months ago through a friend of ours who was one of your nurses at St. Marks hospital when your sweet Lila was born. We read a little of your blog and you have been in our thoughts often since then.
Today, January 23 is the 2 year mark of the birth and passing of our little girl. She was born 18 weeks premature. She graced us with her spirit for a little more than an hour then peacefully passed away as we held her. It has been 2 years filled with tears and healing. As sad and awful as losing our angel was, all she needed was a body for her eternal progression; and we are honored to be part of this great process. At the time, we were as close to heaven as we will ever be. There are few people that have experienced that power. I'm sure you guys are two of those people.
In reading of and listening to others experiences with grief and loss concerning their children we came across the story of Ryan's lion. Ryan was a young infant about to undergo heart surgery. Somebody gave his parents a little stuffed lion to give them courage to get through the pain and fear of caring for their sick child. After the family's ordeal had ended they decided to pass the lion on to someone else who needed courage and strength. The lion has since been passed around to many people. We don't have the original Ryan's lion but we wanted to continue the lion's legacy for giving courage to others and do something special on our special daughters birthday.
Your baby girl is so sweet. We could feel it just looking at her pictures. May god bless you and give you courage in caring for your special angel, and know she will always be yours.

particularly cute Sunday outfit.

Lila got a lot of compliments on her outfit for church on Sunday so I thought I would capture it for my scrapbook.....

I thought I was doing pretty good this month, what with Lila turning 18 months and all, but at church they asked if Lila wanted to go to nursery since she is now on the rolls. It took me back a bit. How can my little one be old enough to go to Nursery? Every milestone is like a death in a way. You would think that I would be starting to get use to our different way of life but I am always surprised by just how painful it still can be.

Friday, January 20, 2012

Another sweet angel baby....

We got to hang out with our dear friends Eliza, Caroline and Nikki today. We LOVE these ladies so much. They inspire me to no end. Miss Eliza has MLD, a terrible genetic condition. She, like our little miss, knows how frustrating it is when your body doesn't work the way it is suppose to. She is an angel and has such an amazing spirit.
Her amazing Mom Nikki has been an incredible support to me and frankly is one of my hero's! She has handled all of life's trials with faith, patience and grace. She also has looked to reach out to others and has helped them to cope with their trials a bit more easily. Some day I hope to emulate her in some degree.
To say goodbye for the day I laid Lila next to Eliza and when their hands touched Little miss held on to Eliza's hand. I couldn't help to wonder what might be passing between these two perfect souls. I felt in awe by them. How amazing these two little angel babies are, far too perfect for this world.

If you want to find out more about Eliza, her amazing family and MLD click here

Thursday, January 19, 2012

Missing her cousins

I think since we have been home Lila has been missing her Cousins attention. She has been talking and seeming to look around waiting for them to come talk to her. Today she was lucky enough to go spend some time back at the cousins house while Quinn and I went to a movie. THANK YOU!!!
Evie was so excited when we got there. She loves to hold Lila. When we were leaving she whispered to her mom, "Will you ask Kristi if we can keep her?" So sweet.

In a kissy mood..

One day on the trip little miss was in the kissiest mood. I LOVED it. She kept popping her head up and giving me loves, then later that night she was giving Kelli lots of love. It was so adorable.

Happy Birthday Kelli

Kelli had her birthday while we were down there. Happy Birthday! We love you

riding Bikes

Las Vegas

We headed down to Vegas for a day. We had a lot of fun.
We made a wish at the fountains.

We loved the rainbow from the fountains
Watching the fish at Caesars
waiting for the water show

We had a small dance party in the bathrooms. Thank goodness it was just us
Sweet Benny. Stuck with all the ladies. He was such a good sport. Only once did he have to retreat in a room to be alone and watch star wars.
I'm sad that I didn't get any pics of Benny holding Lila because one of my favorite moments of the trip was when he was holding her. He said I don't know if Lila likes me very much and right then Lila put her hand right on his heart. The little girls started jumping up and down and saying, "see, she is trying to say she loves you."

St George

We headed down to St George last weekend to at least soak up a little sunshine. I think that St George is Lilas Disneyland. She has so many friends wanting to play with her 24 hours a day. She is like a different little girl. She is so so happy down there. She has an Auntie and Grandma always willing to cuddle and three cousins so excited to play. Those Liston kids are so sweet to Lila. They teach me about her. I never thought that Lila was so expressive but those kids interpret everything she does for me. She is letting them know exactly what she thinks and feels. I can't even express how much it warms my heart. Lila my never have peers for friends but she has true friends in her cousins. I wish that Lila could have some siblings that could be just as good of friends with her.

It also fun to get a little silly
Gracie told me to take this pic and title it "best friends". We are so blessed for these kiddos
Lila was constantly being touched and played with. She loved it.

Swimming in the pool. I dipped little miss toes in and she gave us a smile.

playing with Daddy

Quinn always finds new and interesting ways to entertain Lila. Not sure whats going on here but it makes for a funny pic!

Sunday, January 8, 2012

a neurology update...

We went and saw Lila's neurologist Dr. Filloux this week. We have been very blessed to have such a nice and accommodating doctor on our side. He has been so wonderful, we feel really lucky.
No new news from the researchers in the U.K about when they are going to publish. I want to email them but last time I got on their nerves they told me just to ask my questions to the doctors here. Its hard for me to learn patience.....
Lila has been doing motions like she is startled, and while at first I thought they were just moments of being scared they have started to turn into rhythmic and continuous motions. Dr. Filloux believes that these are seizures. So while I was thinking Lila only has seizures every couple weeks we now realize that she is having several clusters everyday. Obviously we are pretty sad by this new news, but we have started to take bad news in stride and just try and figure out what we can do to make Lila's life better. Lilas Doc gave us a prescription for some seizure meds. I haven't filled it yet. I am still on the fence of what I want to do. I hate giving her any more meds then necessary but I am also wondering if this may help her sleep and then she will be better alert during the day. I wish decisions about Lila were more Black and White but everything seems to be in this gray area.
Other than that we are thrilled to not be in the hospital yet (knock on wood!!!) Lila has been doing pretty well this winter season. Just a cold and a horrible spider bite! Poor thing. We know that there is a hyper little toddler in there just dying to get out. If you grab her legs and make her "run" she laughs and gets excited every time. She also loves to twirl and dance, especially with her daddy.

Sunday, January 1, 2012

Happy New Year!

Happy new year! We had a very low key celebration since the Little one is not feeling well these past few days.
2011 was a pretty rough year for my family, I am pretty glad to see it go. I feel slightly proud that I just survived it quite honestly. While it was hard we also had some wonderful moments and lots of beautiful smiles! Those smiles are what sustains me during the stormy days.
So here is to 2012! A new Year, a new start and hopefully with it good news and peace for my little family. And in case it is not, I hope to learn how to traverse the journey with grace, charity and hope.
I wish the same for all of you out there. I hope this next year is full of joy, happiness and peace.