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.

First day of Scout Camp

Today was our first day of Scout Day camp. It was also Keree's first time at camp, so she was super excited. Our day started off with meeting the rest of the girls in our group and making name tags. Then we headed to the main building for a lesson on how to hula. Because of such the long distances and Keree not being able to walk them since her surgery, we had to use her wheelchair to get around. But she was thrilled that she could get out and try a few things. 

 Hula dancing was easy for her to do because most of the movements were done with their hands.

After the lesson was done, we headed back to our unit's pavillion. What was bad was the Unit Leader kept leaving us behind. I mean did she really think that the wheelchair could go over concrete parking lot barriers? I suggested that we stay together and she balked at me. Once we finally caught up, they girls were already in the field with the volcano. Part of us earning our Aloha patch, each unit had to explode a volcano. Keree was so excited that she actually got to take part in the process.

This picture was taken after our volcano blew up, basically it was a bunch of soapy suds coming out of the top.

After the volcano, we headed back and the girls worked on paper bag hula skirts. Actually, this is all we did for the rest of the day. Keree honestly wasn't enjoying herself at this point. The other girls weren't very nice to her (there were 3 that were nice) because of the wheelchair and the Unit Leader didn't help the situation, she honestly made it worse.

 Keree with her finished hula skirt on. She wasn't able to fringe it because they only had one pair of scissors. UGH!!

In the afternoon, we headed back to the main building because they had a taste test of some fruits from Hawaii. Keree didn't like the mango but loved the mushed banana and pineapple. By this time, Keree's foot was super swelled up even though she had barely been on it.

For the end of the day, they had camp races. Because Keree's foot was so swelled up, we opted out of them. I would rather her miss out on one activity then having it swell way too much and miss all week. When we headed home, I told my Mom all the woos we had today, out of Keree's ear shot. My Mom asked Keree how it went and she told my Mom it wasn't fun, which is something you honestly never hear out of Keree's mouth. I just really hope that tomorrow gets better.

Back to School

Today was Keree's first day back to school. She's still in her wheelchair during school and still only going 1/2 days. She can stand for small amounts of time and even walk very short distances (like under 5 ft). I was surprised when I didn't have a battle at school. They were fine with her continuing 1/ 2 days. Honestly, I think the teacher realized how hard it was to have her there almost a full day. 

Last Day of Winter Break

Well tomorrow Keree heads back to school. When I told her tomorrow is school, she screamed at me that she didn't want to go. I really wish I knew what was going on in that mind of her's sometimes. She loves to learn, she loves doing math and she loves reading when she's at home but she doesn't want to go to school and do those things. Honestly, after the class holiday party I could see why, it was pure chaos. But I really hoped that she would look forward to seeing her friends at least. We were also hoping that Keree would start back on full days and with the walker after break but that's not going to happen. We can't control the extreme swelling or bruising just from her walking on it for a short time. I can just hear the battle I will have tomorrow with the school. I honestly wish that they could go through something like this with their own kids so they would understand. They have made our lives so difficult and stressful over the last 5 months and it didn't have to be this way. It took me forever to get Keree to sleep tonight, it didn't help either that our schedule is out of whack. Our bedtime lately has been almost 1030-11p, when it usually is 9p. Guess, I need to head to bed also, so I can be prepared to battle.

Four days to Halloween

So as for today, we spent the day working on Keree's Halloween costume. Of course, it's no surprise that she wanted to be Rapunzel, she's obsessed with her. We finished up her gigantic yellow braid and some signs to put around her wheelchair. I had really prayed that as soon as the cast came off she would miraculously walk with no assistance but in the back of my mind I knew that wasn't going to happen. It has truly been heart wrenching to watch my active girl be reduced to this struggle. We try not to dwell on the struggle but instead look at what she accomplishes everyday. Luckily, I'm not a Mom who tells her she can't do something, it may scare me to death but if she wants to climb the highest mountain, I tell her go do it. So we look forward to the next few days, filled with our annual Trick or Treat jaunts (starting tomorrow night).