We're about halfway through winter break and enjoying our time off. Josh and Amaya have been off school since Friday and Amaya has been off from therapy for a week. We all needed a break and have been recharging. We've all been tired, worn out and stressed out so we've been trying to enjoy our time and trying to relax. I've tried hard to relax and not worry, but it isn't always easy. My worries are always in the back of my mind. The girls enjoyed Christmas and seeing family members. We've also gone to the zoo, a new candy store in L.A, and the aquarium. We've made sure to do physical therapy homework each day. When we can't do a full session, I make sure that Amaya does the four basic exercises Melissa suggested we do over the break. We've also been making sure Amaya sleeps with her pink cushion on her heel and wears the sponge material on it during the day. While I put her to bed the other night she cried saying she hated wearing the cushion to bed. "It doesn't feel good." she said. She asked why she had to wear it at all. I sympathized with her and told her I was sorry she had to wear it. I told her we are trying to get her heel to heal for good and this is what her doctor suggested we try. I didn't mention the possible surgery yet. I figure I'd wait until we know for sure wether she'll need it or not. It's still very frustrating for me, but at this point I just need to press on to help it heal.
Today we had to get back to reality. In the morning I made some calls to follow up on her pending referrals; for her opthamologist, plastic surgeon, boot for her heel and more therapy. I got a hold of a woman at the wound center. When I told her about the situation and why I was calling she said, "oh, for the little girl." Amaya is their youngest patient. The doctor said they mostly see older patients most of which are diabetic. It was nice that the woman knew who Amaya was even thought she didn't work with us when we were there. She said the referrals for the boot and plastic surgeon were referred over to Amaya's pediatrician. I called the pediatricians office as well as Marilou (our referral coordinator) but I wasn't able to get much information or help because they were all out of the office today. So tomorrow morning I'll have to make more calls and hopefully get some answers. It's always hard waiting on referrals to be processed, but the holidays just add to the processing time. Josh asked me why I would bother calling the day after Christmas, but I just couldn't risk her boot being there and us not knowing about it. I want to get it to her as soon as possible so that she can wear it as long as possible before our follow up appointment with the wound doctor in two weeks.
We had a physical therapy appointment this afternoon with Melissa. I filled her in on our wound care appointment and she was sympathetic to our stress. She said she hadn't submitted a new referral for continued therapy, but that she would be.
Melissa asked Amaya about her nerve pain in her foot then had her work on those stretches first. Amaya's pain has been minimal, but still there. Her muscles are still a bit tight there.
Then Melissa had Amaya lay on her tummy and lift her left leg off the table. It was a bit tough for Amaya. Melissa said, "It will be hard for you, most definitely." She lifted her hips to help her lift her leg, but Melissa told her that when she does that she uses other muscles to lift her leg beside her butt muscles (which are the ones she needs to strengthen). Melissa had her redo them while working on not lifting her hip. Melissa said that at home she needs to do it twenty to thirty times a night. When she was done Amaya said, "Yeah, that was hard."
Then Melissa raced Amaya in a crab walk. You can see that Amaya doesn't bend her left leg as much and wasn't as steady or fast. Amaya said her back hurt so Melissa taught her to use the muscles in her butt to lift her and support her not her back. By the fourth time Amaya improved a bit. Melissa had Lidie race Amaya so that they could race at home and get good practice in. Lidie really enjoyed it, so hopefully it'll be a fun "game" to do at home.
Then Melissa had Amaya balance on her left foot. She leaned to her side and would fall over. Its sad to see her leg be so weak. Melissa had her move so that she could see herself in the mirror. Melissa helped her readjust her hips to help her hold her balance.
Melissa had Amaya walk in front of the mirror. amaya still was leaning over and not shifting her weight so Melissa had her walk with exaggerated hip shifts to help her body get use to it.
Melissa had Amaya climb up and down the ladder four times.
In the adult gym Melissa had Amaya work on her squats. She tied the yellow band on Amaya's knees to help keep them in a good position.
Then Amaya stood on a step with her feet hanging off. Then Melissa had her bounce up and down. Amaya said it hurt her foot and she could feel it in her quads as well.
Then it was time for knee bends. Melissa said she could tell Amaya's knee was tight and that she didn't bend it very much over the week off. I was so focused on the other stretches that I only had her do some squats and knee bends and didn't focus too much on her knee bends. Its crazy what a difference a week off makes. That's one of the reasons I'm glad we're still doing therapy three times a week; because Amaya really needs it and benefits from it. Amaya's knee started at 91 degrees. Then it went to 94, 96, 99 then 102. The climb was slow and painful. Melissa had her stretch in between bends and to breathe to help her muscles relax. But 102 was as high as Amaya was able to get it to today. On her last day before break she was at 110 degrees, so that's a loss of eight degrees in a week.
Before bed we did stretches, squats, bends and worked her muscles. As I massaged Amaya's foot before bed she said her knee hurt. She started to fall asleep but woke up saying it hurt. I massaged it, but that didn't seem to help very much. She said it was about a six or seven on the pain scale. Which is really high for her. And for the first time in months I had to give her Tylenol before bed. It's been so long that I had put it away and had to go dig it out. We have therapy again tomorrow and Friday so hopefully that will help ease her pain and get her knee stretched out again. And I'll of course add more knee stretches to our physical therapy homework.
It's sad to see her in pain and how much she lost from missing just one week of therapy. Patience and perseverance, thats what we need.
Amaya got her glasses! She said we look a lot alike now. What do you think?
Here's Josh and the girls at the Long Beach aquarium.
Here's the girls at the L.A. zoo. We brought Amaya's wheelchair because it was a lot fo walking and its also very hilly there. She got out and walked quite a bit, but it helped having her wheelchair to give her a break.
Here are the girls with "the REAL Willy Wonka!" That's what Lidie said after she saw him. They met him at Sweet, the new candy store in L.A.
Here's Amaya writing with her blueberry flavored chocolate crayon that she got at Sweet. It was so cool! You could write with it, eat it, and she even licked off the writing she did. She shared some with me and it tasted delicious!