10 years!!!

Sorry guys, these pictures sure are fuzzy..

Lyndsay, Liz (and Caroline), Lindsey, Brynn, Michelle, Alexis and me.

I got together this week with my old high school crew. It's our ten year reunion this summer and some of these ladies won't be able to make it but it just happened that all of us were in town together for a brief moment this week. I cannot remember the last time we were all together. It was so fun and a little surreal. I kept looking around thinking my gosh it's been ten years??!!
We had so much fun. In some ways it didn't even seem like any time had passed. Our conversations have changed a bit, instead of discussing cute boys we chatted about good husbands and lovely babies. A lot has changed in ten years, some of us has gone through some hard trails and experienced a lot of heartbreak but also a lot of joy. It was amazing to get together and share.
Thank you ladies for staying in touch! For being so wonderful. We were blessed to have such a great crew in high school and I am so glad that we still support each other today. I know we don't chat with each other a lot and see each other even less but when it comes down to it I know we are always there for each other. When Lila was first diagnosed with cataracts and we knew a normal life was no longer on the table I got a huge gift basket and cards of support from these ladies, it really meant a lot and I am so proud that they are my friends!

St George

I thought this was pretty Hilarious. Evie made me this picture of our family. I especially like Quinn in it.
Lila is starting to Laugh. She has no rhyme or reason to what she thinks is funny though. What made her laugh yesterday wont make her laugh today, so her laughs are hard to catch on camera. Kelli caught this one for me though. I love that big smile!
Evie found some stickers.....

Lucky Lila, she is greatly loved
We took a short trip down to St. George this week. We left on Monday after her Button was put in. We had a lot of fun, but Lila was not feeling good. She has a horrible cold and kept throwing up. We were going to come home on Friday but on Thursday morning Lila was struggling for air and I started to get anxious. Kelli (my personal pediatric nurse) thought she would be alright but said lets just take off to make me feel better. By the time we cleaned up and got in the car Lila was smiley and laughing! What a teaser! When we got home Quinn met us at the car and Lila started to smile and laugh for like a minute straight. It was so cute to see. She loves her daddy.
Thanks ladies for working around our schedule again! So sorry that we came home early ! I feel awful.

new accessory

Lila has a new accessory. She got her button on Monday. I was so excited to get it, I just didn't realize how traumatic it would be. They put numbing cream around her hole and while we sat and waited she had her longest and most intense seizure (thankfully they still are only lasting a few seconds.) Still shook up from her seizure the doc came in and said it's going to be pretty traumatic. They use to put kids out for this but just can't justify the expense anymore. Then he just pulled her old tube out (I think since I was shutting my eyes rather tight) Lila cried so hard. For a mom of a baby that never cries this was heart wrenching! I sat and watched as blood oozed out of a hole in my baby's tummy, it honestly looked like a gunshot wound. Then they slid the button into the hole. It was horrible. Hopefully this will help her be more comfy though!

aarrrrrgggg matey!

We started to patch Lila's right eye one hour a day. She is not a fan. The first time we did it she promptly fell asleep, when she woke up she had a very confused look on her face and then slowly wiggled her pointer finger under it and tore it right off. I was so proud I didn't even put it back on.

some more 4th pics

These two just love Lila. I think of them more as older siblings than as cousins. They take such good care of her.

The parade is so fun

watching fireworks with my dad

I realized I didn't put some of my own 4th of July Pictures on the blog. So here they are a bit late. Thanks Mom for watching Lila while we went on a hike and fireworks, the poor sickie wouldn't have had much fun.

sweets factory

I took the kids I nanny and Lila to the sweets candy factory with my nieces and nephew and my sisters friend Jen and her kids. We had a fun time. I had to post this pic because I thought a posing Molly was hilarious along with miss Grace holding Lila

Mayo

The Mayo clinic called and they want to see us. In person. This was a really hard decision for Quinn and I but we have decided to fly out to Minnesota to go see the Doctors out there. (We were so sad that Arizona doesn't have a pediatric neurology department, we could have pretended we were going on a vacation.) I think we were both a little sad that we have to actually go out there we were so hoping that we could work in coordination with Primarys and do the tests they want to do here and they could make their decision remotely.
I think we are not very hopeful that we will get a diagnosis, even through the Mayo clinic. Which would be wonderful in some ways and hard in others. I go back and forth. I want to know to have a better idea of what her life will be like, how long she will be with us but I would also feel relieved if they don't find anything wrong with my baby.
So if anyone has any good tips about doing the out of state referral, or anyone knows anything about Rochester and the Mayo Clinic please let me know. We go in September.