Wednesday, August 1, 2012

6 month visit and almost 1 year post-op

Today we got up bright and early (before 4am), so we could get on the road for Keree's 6 mos. visit and almost 1 year post-op appointment at Shriner's. I was a little on the disappointed side at this appointment. We never even saw Keree's primary doctor and our usual Nurse Practitioner saw us for maybe 3 minutes. Our appointment consisted mostly of meeting with the Physical Therapist. Which I'm happy to say, it was one of our favorite Gals. Instead of the Last One, who said that Keree was just lazy and that's why she wasn't getting around. It was figured that Keree's leg difference is increasing about 1/4 of an inch every 6 months. They say there's nothing they can do about it now, except continue to watch it. They are also arranging for Keree to get a fitted wheelchair. They told me that in reality Keree's condition isn't going to be getting any better, the wheelchair will help her live a fuller life and help us with not having to carry her so often. I'm not going to let Keree depend on the wheelchair but for trips to places like the mall or zoo, it will help since she doesn't fit in a stroller anymore. More than anything, I really just wish we could wave a magic wand and Keree's Polio be gone forever. 
So after our PT visit and a few notes from the Doctor. They released us until next year, it was weird walking out of there knowing we aren't suppose to come back until August 2013. In Keree's entire life, it has either been every 3 or 6 months. What makes me sad about it, it's not because they think she's cured, it's because in their words "there's nothing else we can do for her." How sad to hear those words uttered about your child. It's feels like a death sentence they have given you.
Our finally stop of the day was the SHOP. They had to make some adjustments to her brace because it was causing open wounds in 3 spots. Keree also got two new pairs of tennis shoes because her good foot had actually grown and they needed lifts put on them.
Our final stop before starting the long drive home, was our traditional picture of Keree beside the koi pond in front of the hospital. Also for being such a good patient, she got a singing Hannah Montana Christmas doll. She got to press the music button twice before we got on the road and then it had to be quite until we got home.
 By the time we got on the road to head home, it was blistering hot (105). Since the van doesn't have a/c, we were sweating to death. I had heard that a Disney store had recently opened at a mall that is on our way home. So we decided to make a short stop to cool down. Plus, this was only Keree's second time in a Disney store and the first time she would be able to remember. The store is on the 2nd level and so as we came up the escalator, she suddenly saw the giant Disney on the outside of the store. She literally fell into a fit of giddiness, she just couldn't help herself. The store lady showed her the magic mirror and she got to see Rapunzel. Or as Keree keeps telling everyone, "it wasn't a fake Rapunzel, it was the real, real Rapunzel in the mirror."
We ended up spending almost 2 hours in the store, we just looked at everything slowly. Keree held up Merida's dress and Rapunzel's wedding dress to see how she would look in it. But otherwise, we just looked at everything. We walked out of the Disney store not buying a single thing. Keree saw a few cool things that may go on her Christmas list but other than that, it was more about the experience of just being there. Life really is just about the simple things, like window shopping.
By the time we hit the highway, Keree was passed out and stayed that way until we pulled into the driveway. We stopped to grab a drink and I just had to snap this picture, her doll stayed balanced like this the entire ride home.

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