Happy "rare disease day" to all the angels out there!!!

Did you know that today is world rare disease day?!!!!! On this rare day I hope we can think of all the families who are affected by rare conditions.

Did you know?

-350 million people have rare diseases. That is more than all cancers and aids combined!

- 7,000 people are identified with rare diseases that have no cure.

- less than 5% of rare diseases have any therapies or treatments.

I want to send my love to all the families affected by rare diseases. I can honestly say that while I have never met you, I love you with every ounce of my being. You are the keeper of angels.

The global genes project is where I got the stats above and where this little slogan is from. I like it. Hope is always something to strive for.

Lila's new ride

I've never had a new car before. I am so nervous even to drive the thing! I'm just going to stare at it and wipe it with a diaper (ferris bueller anyone?) it has only 7 miles on it! I didn't even think that was possible.
Doesn't she look comfy?

Quinn at the dealer. Accepting that he has just bought a mini mini van.

We sold sexy Lexi and bought a Mazda 5. We looked all over for a car that could have reclining seats but wasn't as big as a traditional mini van since we only have one kiddo. The Mazda was a good compromise.
Quinn was a trooper. He had a hard time selling his beloved Lexus for a "not as cool" car. He swore he would never be a mini van guy. (even though its not a mini van, it kinda resembles one) But in the end we both swallowed our pride and got what was best for miss Lila. I think this will make her so comfy. I am really thrilled to have the Mazda. Thanks PenQuinn!

feeling grateful

A good friend of ours found some more research on Vici syndrome. A task that is not easily done. I thought we had seen it all, but we are grateful for more information even if it is hard to read at times. After looking them over I am feeling rather grateful this evening. It seems as though Lila is rather high functioning for a Vici child. I know it seems rather odd to call Lila high functioning but in her peer group she is. Many families never got smiles, laughs or babbling. I am feeling immensely blessed that we have gotten that tiny glimpse into our little Lila's personality. I will cherish every laugh, smile and conversation we have even more. Once again Lila has taught us not to take anything for granted.

anyone interested?

We have to get a new car for Lila Bear. This new car seat is taking a toll on her and we need to get a car that the seat can recline so that she can breathe more comfortably. We found a car that will work out but we need to sell the Lexus first. So if anyone knows anyone who might be interested in this car let me know. Its a i.s. 300 and it has never given us a problem. Its a great car.

Gracie's valentine

Gracie's Valentines to Lila. It doesn't get sweeter than that.

Thanks Jenna

My cute cousin Jenna came to visit me the other day and brought her kids Zoe and Zaylor. Here is sweet Zoe holding Lila. They were adorable!
Thanks for coming up Jenna! I had a wonderful time with you. I was so excited when you decided to come see us. We don't get to see family enough and it was so good to catch up. I loved sharing our life experiences together. You are so inspiring to me and so incredibly strong. Thank you for lifting me up. I loved learning from you. Hope to see you again soon.

Valentines day!!!

Caution: sappy Love post!!!
The night before Valentines sweet Quinn decorated the house after I went to bed. He left cute "I love you" signs all over the house.
Lila's Valentine shirt from her Grandma.
One of Quinn's signs. They were all so cute and made my day!
During our Valentines day dinner I put on Disney Pixar Shorts for Lila. We had never tried watching TV before. She was laughing out loud and watching the screen. She definitely stole the show. She especially liked it when a baby laughed. It was adorable.
Going crazy with Martinellis. I love that Quinn is always making me laugh.
Our little Cupid..


I Love Valentines day. A holiday to acknowledge and revel in Love. It is the best reminder not to take those you love for granted. I have felt overwhelmed with all the love that has come into my life this past year. Lila has brought the most sincere form of Love to me, she also has brought individuals into our life who have shown us love and support. Its always humbled me to receive their kindness.
We had a wonderful day. Quinn started it out on a good note. Then we met him for Lunch. I love seeing Quinn in the middle of the day. Then we headed up to Primarys. I think Lila had heard me telling too many people that I was so grateful not to be in the hospital this year for Valentines day like we were last year so she decided to remedy that. She has a lump in her abdomen that needed to be looked at with ultrasound. She is ok. Just another rare situation for a kid her age. But she is going to be just fine. Not to be admitted was a nice Valentines day present! Then we finished with a quite dinner at home. Perfect.
I want to tell all our family how much we love you! You have been so incredible this last year and the love you have shown us fills my soul. Its hard not to fill extremely blessed on this day.
And to the love of my life. My forever Valentine. I love you. You have taught me what true love is. How am I so blessed to have you? I feel so lucky. My first try at a happily ever after didn't work out and I didn't know how I would recover, then you came in and saved me, and you have been saving me every day since. You are my best friend and I know we can tackle anything together. I am so excited for all the adventures to come. Love you.