Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

We had a great weekend! The drive was long and boring, but the kids were great and we got to Disney right at rush hour. Gotta love CA traffic!
Lily’s birthday was Friday and we first had breakfast with the princesses, it was very sweet and yummy. Andi said it was a dream come true. She hugged everyone. The princesses were all wonderful with Lily. They sang to her as well. Unfortunately though Anaheim was experiencing record heat, it was 105 plus humidity. Us folk from Arizona won’t even go to the zoo for a few hours when temps are in the 90’s so the weather didn’t fair well with us. We didn’t spend as much time at the parks as we would have liked, but we stayed at the Grand Californian that is IN California Adventures so we were able to go back and forth. We had a great pool so we spent a lot of time there. One night my parents watched the kids and Andrew and I went with my sister, brother, niece, cousin and Andrew’s cousin (whom we hadn’t seen in years but just so happened to be in CA when we were so we met up (very cool!)) went on the big kid rides until 10pm! It was a little too much for me. That Hollywood Hotel of Terror (or whatever) is just too scary for me! I felt like I was approaching death and everyone found that hilarious.
We went on It’s a Small World, Pirates (Andi found way too scary), Andi did the teacups with her cousins, and a few other rides. I do hope we make it out there again before Oliver is a toddler and do it during the week and in the fall. We were saying we had never been to CA and not had to have a sweater at night and no sweater needed on this trip! Too hot!!
But Lily’s day was very special. It appears that every single person employed by Disney has to wish you a happy birthday if you are wearing that button. One guy was sweeping the floor, looked up and wished Lily a happy day. That was very magical.
The kids all slept well there, Lily included! That is huge! I certainly was not ready to go home on Sunday. Hot or not, Disney is the place to be.
Tuesday however, not so cool. I took Lily to the Ortho, whom I do not like anyway but due to the services here in order to get her wheelchair we have to see their ortho. Anyway, he dx her with scoliosis. I knew this since the geneticists called to tell me she was referring us to scoli clinic. Anyway, he wants Lily in a rigid brace for 23 out of 24 hours a day. Obviously I wasn’t running to get that done. I listened to what he had to say and decided to get a second opinion.
I had a long talk with Lily’s PT (whom is wonderful and very knowledgeable) and she was saying this embarks on an issue about quality of life, and I agree. Lily’s movement is how she communicates, we take that away then what? I am not saying ignore her scoliosis, but I think he’s thinking may be a bit old school and I think there are more options out there. I am so thankful we have private insurance where we have the option to explore. If all we had were the states services (which I am thankful they do help with co-pays) we would be stuck. I spent way too many years listening to Dr’s and not my heart and I’m done. By the way this is the Dr who told me when Lily was 3 that she will never walk therefore didn’t require any bracing for standing. *Sigh*
VNS replacement is scheduled for my dad’s birthday 10/20. We are the first on the cancellation list so we may go in sooner. Lily has fall break two weeks before that so I asked if we could work something out during that time, that would be great. We’ll see.
Check out our slide show for recent pictures.

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