St George (AKA She's back!!)

LOOK!! Look who is smiling again! I have been crying so much this week. Actually happy tears this time. My baby is smiling again. After about two months of no expressions I feared that I had lost her for forever but Friday, the day after we had stopped the steroids we were driving down to St George and my sister laughed loudly and Little Miss got a little smile on her face! I couldn't believe it. Ever since she has been so cute, Smiling and even Laughing!
After being cooped up and trying to avoid every social situation, since the steroids cut down on her immunity, I was feeling a bit stir crazy. Since my sisters kids had spring break this week I decided to tag along (thanks!) and head down to sunny St. George. After a rough start (I pulled out Lila's NJ tube while getting into the car and had to run up to Primary to get an X ray and fix it before we left) it turned into one of the best trips. I felt like I had my baby back. I don't know if I conveyed it in the blog but a week ago Lila was not moving, having any expression and she was looking pretty grim, but miraculously she is smiling again.
I pray that it doesn't go away! Of course, we came home with some sort of virus and she is having trouble breathing and sleeping. We have already been to the doctors with more appointments later today, but so far she is still smiling. Something that I have learned about my baby, when she hurts or is uncomfy she doesn't cry she just checks out.
Other things I learned about my baby this week. She is patient, she LOVES to play, She never wanted to sleep because she was so excited to play (or that could have been a side effect from the steroid withdrawal) She has the sweetest little giggle, she loves noise (her laughing, screaming cousins always invoked a smile) She loves to be talked to, She likes to giggle at her light box, She loves to be surprised, when you would startle her she just got a huge smile. When she feels good she is just truly happy. The happiest, sweetest little angel.
The pool was closed so the kiddos improvised, but still had a blast!
Looking at her light box

Thats one way to watch conference....

Doesn't that smile just melt your heart? Especially since I haven't seen it in months, and really thought I would never see it again.
Her Hawaiian hair-do provided by Benny.



Love these crazies! They were so cute this week and very hilarious. They are so cute about Lila. They were so into every smile and laugh. It has been so touching that they love her to death even though she isn't the typical baby. They have never said anything bad about her or made me feel like she wasn't going to be included. Love you guys!
We went to Vegas one day and enjoyed the great weather, yummy food and walking around the amazing hotels. The Billagio (sp?) gardens. So breathtaking!

ok, a bit of a cheesy post: While I was thrilled about Lila's smiles it's always hard to see kids her age. She should be sitting on my hip, grabbing at my necklace, all those little things. So seeing little ones in Vegas was a bit rough, especially since Lila's tube attracted some stares. (I'm not offended, I understand) But while going through the gardens there was this big patch of pink tulips, which happen to be my favorite flower, with one bright yellow tulip. I just started to cry. The story that my mom gave me, and a few other mothers of special needs kids passed along to me, of Holland came to mind. That having a special needs kid is like planning your whole life to go to Italy and then to end up in Holland, and while you mourn the loss of Italy you start to realize that Holland is pretty great. Holland has windmills, Holland has Rembrandts, Holland has Tulips.
Lila may not be like other kids. Ever. But she is beautiful!!! She is special, and I am so Lucky she is mine.

These ladies are so great. Everyone should be so lucky to have a mom and sister as their best friends. Especially these two. It was so great to travel with your own caring personal pediatric nurse and smitten grandmother. It was a pretty heartfelt weekend with all of us getting teary constantly. It really is touching to see that others care for your daughter almost as much as you do, and are just as thrilled by every laugh and smile.
Thank you so much ladies! I really appreciate all you do. You have been so great through all of this. Thank you for rolling with my crazy life. From running up to Primary to replace a tube, to coming home early for eye appointments I am so incredibly touched and grateful.




It was so fun to have a daughter that is interactive. I felt like a normal mom for a moment, and may I just say it's Awesome!!! I was addicted. It's better than anything I have ever experienced. Seeing my little lady smile puts anything that I have seen on this Earth to shame. Kenya, the Amazon, Europe, nothing compares. That smile is by far the most amazing thing yet.