Thursday, July 29, 2010
We got up this morning, amazingly didn't get stuck in to much rush-hour traffic and got to Keree's 6 mos recheck appointment right on time. We checked in and I was a little shocked when we weren't sent back immediately for X-rays, like usual. Instead we took a seat and about 10 minutes later, they called us back. Again, I thought they would send us to X-ray's then but nope they took us to our room. The Administrative Nurse asked us a few question and then said our Doctor's Nurse Dn would be in shortly. I'm pretty sure our Doctor's Nurse Dn has been there as long as Keree's Doctor R, which she happens to be Assistant Chief of Staff of the Hospital. Well she asked us what all was going on, so I explained to her Keree's pain, hyper extension of her knee and hip, and of course the leg length, which it has all been the same concerns for what, the last 3 years. I also mentioned a new symptom, which is Keree's knee cap is getting stuck on her good leg. So basically her leg gets held in a 90 degree angle until she/we push her knee back into place, which results into a huge popping sound. Of course, when Nurse Dn checked it, she couldn't get it to do it. So of course they chalk it up to a one time thing. HA! It's not a one time thing. She left because the Physical Therapist department was up next to visit us. They were running a little behind, so instead we were visited by the Intern. Usually, we only run into the Intern's during the Late Fall, very Early Winter. So we were a little surprised by him. But I have to say, he was an amazing Intern! He didn't ask a lot of stupid questions like previous Interns, he had actually read her file before coming in and wasn't shocked by her having Polio. I didn't get the usual stupid Intern question of "Are you really sure she has Polio?" Ummmm, DUH!! She had the test in the United States by one of the Top Doctor's in that field. I really dare you to undermine and doubt her Diagnoses. After he left, Physical Therapy came in, it actually turned out to be the same PT we have seen for the last 2 1/2 years. She questioned about what kind of exercises we do with her, how is her outpatient PT is going and does she get services from the school. When she finished asking her questions, it was time for Keree to walk up and down the halls. About the same time, Dr R showed up. So there was Dr R, Nurse Dn and PT they watched her walk, watched her run, watched her jump and Keree even skipped on her own. There final decision, they thought she needed a new brace. Seriously, she hasn't grown in the last 6 months and her brace is fitting exactly the same as it was when we got it. So we headed over to the shop, so they could cast Keree's leg for her new brace. They also decided that after more than 3 years of going either every month or every 3 months, that they don't have to see her back in a year. Yep, 1 whole year! When they told me that, it was at that point I realized they don't expect her to get any better. They don't think there will be any new cures, new treatments, no getting even a little better.......there will be nothing. I'm her Mom, I can't accept that there is nothing else. I mean I realized, long ago that we were dealing with the unknown, we were in pretty much uncharted water. It's not only that she has Polio but Paralytic Polio that only 0.02% of the population who gets Polio gets this kind. So there wasn't much research on Paralytic Polio anyway and all that research is from before the 70's. But there has to be something more, this can't be the end, it can't be there's nothing more than we can do. I don't know what my next steps will be except we will be seeing her Primary Doctor very soon. After our visit, I had planned on taking Keree to a local Splash park I had found online that was less than 10 minutes from the Hospital. When we got there, it was closed. Keree was so beyond bummed and so were we. Keree feel asleep on the way home, we stopped by the County Fair grounds to pick up the Premium book. We decided entering a few of the Premiums (contests) would be a fun thing to do. When we got home, Keree legs were hurting and she just plain didn't feel good. So she laid down again, when she got up we decided to do a project. We were making crayon melts. Keree had so much fun peeling the crayons and then breaking them into pieces. Once all the crayons were peeled, I put them into the oven and we watched them melt. Keree loved how fast some colors seemed to melt, while others seemed to take their time. We followed the time directed but our crayons weren't melted, so we left them in for a little while longer. When we pulled them out, we put them on the counter to cool. Keree couldn't wait for them to cool off. Once they cooled off, we spent the evening drawing pictures with them.