look who found her hand!

Her daddy is always sucking on her sweet little ears

Progress! Little miss found her hands lately and has been sucking on them like crazy. Maybe not a big deal for other people's kids but this has been so exciting for us! She also has started to coo. Last night she was cooing and doing half smiles for 45 minutes. This is the most interaction we have had from her so we are thrilled!

Quinn also had a great experience with a patient this week that has given me a lot of hope. This lady has been coming to them for a few years and her daughter had bilateral Cataracts as well as a child so Quinn has been chatting with her about her experience. On Friday she came in and asked how Lila was doing and Quinn told her they thought she may have Cerebral Palsy, she told Quinn that they told her the same thing about her daughter. Quinn started to explain Lila's behavior to her and she said her daughter acted the exact same way and doctors were diagnosing her with all sorts of things. She just had to go to the school for the deaf and the blind till 2nd grade then she transitioned into public school. She is 19 now and is an honor student at BYU and the only limitation she has is she can't drive. I was thrilled! What if that's our Lila?! Another one of our friends met someone whose daughter had cataracts as well and they said the exact same thing, the doctors told them that their daughter had cerebral palsy, which she doesn't. I am so hopeful!

Girls X-mas Party

Thank you to Lindsey for hosting a Christmas party for my dear old high school friends. We should do it more than every four to five years! It was so great to catch up and to see husbands and kids as well. I love these ladies. I can't believe that it has been ten years this year since we graduated. That is crazy! I am so glad we still get together, even if it is once and a while. We missed the ladies who couldn't make it. Hopefully we will all get together again soon!

five months

Lila is five months today. Mixed emotions again. What a little beauty Queen she is becoming! She is the most gorgeous baby! Sorry, but I don't feel the least bit bad to brag about her. She is so beautiful. She is calm and just goes with the flow. All of the poking and prodding of doctors has been met with a quiet patience.
I am sad that this post doesn't get to include all the normal things that five month olds do. With each passing day a bit of my hope dies, and with each month mark I feel the weight of this situation heavier on my heart. I have to wonder if I will ever have my baby look at me and smile, or have a conversation with her.
We went over to Quinn's parents house last night and Todd shared some of his thoughts about the situation with us. He told us some beautiful experiences he has had that has strengthened his faith in miracles and in a loving Heavenly Father. It was a wonderful and spiritual night and at the end he gave Lila a beautiful blessing. I hope that we do get to see some progress soon. But as we were leaving Robyn said something to me that has stuck with me all morning, she said that as she has talked to Todd about Lila the thought came to her that Lila must be a brave little soul, that she knew what kind of challenges that she would have to face in this life and she still decided to come. What a courageous, special kid she is, and that we just have to be brave enough in return to help her on her journey.
I am truly blessed.

Christmas

Lila's first Christmas was filled with a lot of mixed emotions. It was a bit overwhelming, which is how I feel 97% of the time these days. I was so grateful that we have her. No one can deny she is a very special kid. She has a way about her that is so calming, you just feel that her spirit is great. She is truly amazing.
But the other part of me was in mourning for the loss of what was expected for these holidays. I kept it together till night came, sorry Quinn. This not knowing what the future holds is so painful. It physically hurts. And to go to all the Christmas parties and to see all these healthy children is so hard. It's difficult not to ask why us? why her? she is way to special for all this. Therefore it was nice to contemplate the true meaning of Christmas, for Christ and his sacrifice for us. I know that he has felt all that I am feeling, and that doesn't make me feel so alone. This experience has given me a better perspective on Heavenly Father and how difficult it must have been for him to watch his son suffer when he could have stopped it at anytime. I could not have done that. I would do anything to change Lila's situation. The thoughts of her challenges ahead make me go a little insane. Whatever happens I am comforted to know that because of our Savior Lila will be whole, in this life or the next.
I am so thankful for wonderful family, it was so nice to spend the holiday with you all. You are our rocks these days.
I hope you all had a Merry Christmas, sorry to the friends that I have not been keeping up with, I fear that you wouldn't enjoy our conversations anyway these days. I hope that everyone is grateful for what they have this holiday season. I wish you all health and happiness in the new year!

Christimas Eve

I love Christmas eve. We do the nativity play, have yummy food and go see the Christmas lights. This year was Quinn's parents turn so we did the play early so that Mikey and I wouldn't miss it. We had a great time. Quinn and I were the only adults in the play this year. It was kinda funny. Little Lila was baby Jesus and of course she was a little angel, just like always.

another huge blow

We saw the Developmental Pediatrician today. No good news there. Lila is on the developmental level of a one month old. She also is showing symptoms of cerebral palsy. I could not be more devastated. Also her eye sight does not seem to be improving much. We may have a little girl with Cerebral Palsy who is blind.

We don't know for sure. Obviously we are still hopeful. Maybe these symptoms may not mean anything.... I'm just frustrated, scared and cannot believe this beautiful angels bad luck! I mean what are the odds that a kid has cataracts and CP??!! I am venting and maybe venting on a public blog is not the best platform but it's a little therapeutic. I also am hopeful that people will still remember us in their prayers, maybe people I don't even know who have found this blog. We need all the prayers we can get right now.

frustration!!!

ugh! I am so frustrated! We are having a hard time fitting Lila's right eye with contacts. The contacts that we keep trying bubble off her eye and she can blink them out, and every time we order in new ones it takes up to two weeks. Also Insurance has to OK the genetic testing before we can do blood work and they are dragging their feet. A nurse up at Primarys told me that they take up to a month to finally deny you. Then your doctor has to write a letter pleading your case before they take up to another month to OK it , then the tests take up to a month. Genetics can't even see us till April. It's a living nightmare. How can they say your child might have a syndrome and then not let you take the tests!!!??? I don't understand! In the meantime I am googling every syndrome under the sun and loosing hope that Lila will ever be normal. This is the hardest thing that I have ever done.


Side note: After I wrote this I called my insurance, apparently they never received a request from Primarys!!!

Festival of trees

Look at how cute Lila's Christmas outfit is.....

I just threw this picture in here, it was later that night

We went to the festival of trees this year. It's tradition. In hindsight maybe I should have skipped this one. I was bawling the whole time. It was so hard to see pictures of all the kids with tubes in them and all the little angels that never made it. It was a little too close to home. One tree though had a little saying that said, Shelby is happy and healthy thanks to Primary's, I really hope that we can say that one day!