Today marks our eightieth day of turning the rod on Amaya's fixator. Had we been able to do four turns a day we would have 8 cm today (one mm a day for eighty days is 80 mm, or 8 cm). Since we had to drop down to three turns a day for a couple of weeks we'll be done on Monday instead. I'm so glad that Amaya was able to maintain four turns a day for as long as she did, otherwise we'd be looking at another few weeks of turns instead if just four days.
Today we had an hour break before therapy. We went in to try to schedule Amaya's next therapy appointments, but the authorization hasn't been processed yet. It's a bit frustrating trying to get all of the paperwork taken care of, and tracking it down. I spent a few minutes there, then on the phone, but was still unable to schedule her next appointments. Hopefully things get taken care of soon (we only have a week left of therapy scheduled, and she can't afford to miss any days). After that we still had a few minutes to play at the playground before her appointment. On our way there Lidie threw a fit, and had to take two time outs. Man, talk about frustrating! Between her fits and trying to get the appointments taken care off I was getting very upset.
At the playground a little girl (about three or four years old) kept starring at Amaya and asking her mom, "What does that girl have on her leg?" Her mom said, nothing. The girl asked several times, and each time the mom said nothing. It was a bit awkward. Amaya was very close to the girl (could see her starring and hear her asking her mom). Amaya just kept smiling at the girl. I smiled, but just didn't have the energy to strike up a conversation. The girls played for almost thirty minutes and had lots of fun. At one point I noticed amaya's left leg; it looked so straight and stretched. Tight. I could see her veins and tendons thru her skin. It was a bit sad. I can't describe why it made me feel sad, it just did. But, then as she played and laughed, I just had to smile. I must sound like a wreck, or a bit crazy.
Here's video of Amaya on the slide today. You can see just how straight her leg is when she walks. We call it her "pirate walk." It's very difficult for her to bend her leg when she's standing or walking. But, she had lots of fun playing with Lidie.
In addition to the slide, she also used the swings (for the first time with her fixator). She tried to pump her legs to swing, but it didn't work. It was funny watching her try to figure it out. She also played on the mango swing and bongo swings. She did a lot of walking too. It's like a workout before her therapy.
When we got inside Amaya found the comment/suggestion cards. She asked of she could write one for Kim and Melissa. I thought that was pretty sweet. She wrote that they were "nice, helped her, that Melissa helps move her foot, that they help her bend her leg so it can get back in the 100's." Kim and Melissa both appreciated Amaya's notes, they were pretty cute.
At therapy Kim put some weights on Amaya's leg to help it bend. First they put 1.5 lbs. but that didn't seem to do much, so they kept adding weights, until she had 5 lbs. on there. You can see just how far it bent her leg down. Its a nice gentle stretch that was very effective. Melissa suggested that we get some weights so that she can use them at home when she sits and when she props her leg up against the wall. Melissa suggested doing it for about thirty minutes and building up to an hour. She said that we need to make sure its not too long, because then her muscle will tighten up and work against us. With the weights on Kim massaged Amaya's knee.
Next Amaya walked over the blocks. She had to fight to not have a "pirate walk" but bend her leg instead. When she did one without a bend she had to redo it.
Then she went into the other gym to practice sitting and standing. They set a goal of sixteen bends today. When she did it right (with her leg straight, and her bottom down all the way) she was able to get a 41 degree bend in the knee. Which is when the tears started. It's a stretch and you can see in Amaya's face just how tough it is. In case your wondering that's Melissa laying on the ground so that she could get a good measurement of the knee.
When we started knee bends and measurements Melissa said that we should shoot for 90, but that 86 would be the minimum goal for today. Amaya agreed then started working. Her knee measured at 40, then quickly went up to 50, 60, 70, then 78. Through grunts, groans, tears and pulls and pushes she got to 90! Ninety, can you believe it?! I was impressed, surprised and relieved. It only took her fifteen minutes to get there, which is equally impressive. Kim noticed just how fast it went, and mentioned that she thought it was the quickest Amaya has been able to get to 90 in a long time.
Afterward Amaya was in a lot of pain (she said a five on the pain scale). She needed pain meds every four hours (that hasn't happened in a while), massages and hot pads for the rest of the day. She asked if she could skip school today. I said we'd wait until after we went to buy her ankle weights to see how she felt. But as we shopped, she complained of more pain and asked to go home, and we did. Before her shower she asked me, "Mom, do you know why its hurting so much today?" I told her that its probably because she's so close to the end, and how hard she worked today at therapy. I told her that I was sorry and sad that she was in so much pain. I told her, "it hurts me so much too." Then she looked at me and said, "I know. Man, you look so tired." The past few weeks her pain had died down considerably and was being managed quite well. Only her toes were bothering her a lot. But, today was rough, and she had a tough time falling asleep.
This is Amaya with her new ankle weights at home. She wore them for about twenty minutes. I massaged her toes while she wore it (which is tricky with my broken thumb nail). This was only a 1.5 weight, but after all her work today and leaving it on for that long, it gave a nice bend to her knee (as you can see in the picture). She likes her weighs and wore them on the car ride home (one on her left hand and one on her right leg). Then at home when she was doing homework she had them on her hands. What a funny girl!
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