amaya at lake

amaya at lake

Monday, June 25, 2012

Three weeks post lengthening

      This morning I called Dr.Nelson's office, again, and after thirty minutes I finally got Amaya's next appointment scheduled. What a relief! The woman on the line today was so helpful and kind. She double checked that Amaya's referral was entered correctly so that we don't have any problems scheduling her next appointments (Marilou made the referrals for the next four visits & x-rays). We're suppose to see him on Monday, but he's overbooked by ten appointments that day, so she suggested waiting one week, when he's only fully booked for the day, but not overbooked. I figured since its only her first follow up after she stopped lengthening one week wouldn't be a big deal. We'll still have a long wait that day, but we'll deal with it. I can't imagine what a day is like for him, seeing so many patients. But, when your good there's a high demand to see you. I'm just so thankful that Amaya is under his care.
     At therapy Amaya's knee was at 42 degrees to start, which isn't too bad for a Monday. I had her wear her ankle weight the whole way over to therapy and that helped stretch the knee a bit. After all the work today Melissa measured Amaya's knee. It was at 52, but with a slight nudge she got 56, then 60. That was before we even started bends, nice! Amaya's goal was 103 (two more than Friday's number). Which is a good goal, but it was Monday and we didn't do a lot of knee bends over the weekend (just swimming and hip stretches) so I was curious to see what Amaya would get. She did her pulls and bends in sets of fifteen again then moving her leg back. She worked hard and quickly but I could tell that she was in a bit more pain and struggling more than Friday (after a weekend it was expected). But she kept going then Melissa asked, "okay, how much further do you want to go? You've got it." Amaya said, "that's enough." She had gotten 103 in less than five minutes. She wants me to time her tomorrow so she knows exactly how long it takes her. I was once again, surprised and happy. Melissa said that if Amaya continues to hit 100 or more each day this week, then we'll cancel two appointments for next week and see how she does with just three sessions a week. If she does fine with that then we can drop down to three sessions a week. Amaya said she wants to try to hit 110 by the end of the week. Melissa smiled and said, "I don't doubt it!" Today is exactly three weeks since we stopped lengthening Amaya's leg. I'm amazed how quickly she has bounced back from her tight days. She had some days when she struggled to hit 90 and some when she was in the 80's and some 70's. Each child is different, but from most blogs that I've read, most weren't able to stay in the 90's as long as Amaya did or get back up so quickly. So hitting the 100's so quickly isn't the norm (just so that other parents know to not expect that). Even though she's been able to get high numbers she still has many tight muscles in her leg that make walking, swimming, stepping over things, walking up stairs, kicking, riding a bike, walking long distances, etc. a challenge. She's working so hard and accomplishing so much. 
     Later in the afternoon we dropped off dad at the dentist and went to get some frozen yogurt. The woman there asked Amaya about her fixator and told us about her car accident where she broke twenty seven bones. Wow, I can't even imagine that. She offered Amaya some praise and support and was very kind. Later at the dentist office we had two women talk to us about the fixator (it really is nicer when they talk to you instead of just stare). One woman couldn't believe that Amaya swam with her fixator on. She was so confused by that, and I couldn't really explain "how"Amaya did it other than to say that she just figured it out. She asked if we took it off to do things, and I said that no it stays on for about ten months total. Again, she was confused and shocked that Amaya would have to wear it for so long. I tried to explain things as best as I could. Later I smiled, because what's normal for us now was so foreign to us a few months ago. As I'm sure it is to any future lengtheners out there. You can't imagine what it will be like, until it happens. Hopefully our blog helps give you some insight as to what it might be like (each case and each child is so different so things will vary). But, we wish you luck and if you have any questions please feel free to email me, my email is on top of the blog. 
     When I put Amaya to bed I noticed that its hurting her to lock the bar in at night; her muscles are still so tight. As bending becomes easier then straightening becomes more difficult.  So I started stretching her leg before bed, in addition to her hip bends. Amaya asked when we can stop locking the bar in at night, but I reminded her what its for and that once Dr.Nelson says we don't need it we can stop. She's hoping it won't be until the fixator comes off, but I'm not sure so I don't promise anything. I gave her, her pain meds (only the second dose all day) then squeezed her knee because it was hurting her so much. Thanks again for reading and following along. 
       This morning Amaya and Lidie were talking on the couch. Lidie was touching Amaya's fixator and asked her, "when do you get to take your pins out?" I gave my standard answer, "Dr.Nelson decides when they come out and he'll do it." But then Amaya added, "I'll do it." I had a quick vision of her trying to unscrew them, but then she went on, "When I'm an orthopedic surgeon I'll know how. Then I'll show you guys how." I had to smile at that. 
Amaya did four knee bends before she got to kick the ball. She tried to get it up the ramp. She still has a hard time getting her knee to bend back enough to create enough strength to kick hard so it never made it up, but she got close. 
Then Melissa had her sit onto the ball while bending her knee. Melissa had to hold her foot down because it kept moving and Amaya would loose her bend. After that Melissa gave Amaya another chance to try to kick the ball up the ramp, but even though she was closer it still didn't go up. 
Here she is trying to kick it up the ramp.
Amaya leaning forward to pick up a ball to throw at Savannah. She stepped off the step and then also lunged forward. During these stretches you can hear laughs from Melissa and Amaya, which always warms my heart. I'm glad that even though therapy is tough and work, it is also enjoyable and fun for Amaya. I'm grateful for the time and energy Melissa puts into caring for Amaya and keeping therapy fun, new and challenging.
She rode the bike for a bit to bowl. 
     Melissa taught Amaya a new stretch today. She would bend Amaya's knee then have Amaya lift up and lower her hip. Then Melissa would bend the knee a bit more then Amaya would left her hip again a few more times. They did that about five times. I noticed tonight when I put Amaya to bed and we did her hip stretches that her hip isn't as tight as we stretch it. It's nice to see the exercises working. Amaya asked, "can we stop doing them now that they worked?" But I explained that you have to keep doing them for them to keep working, so she did them.

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