amaya at lake

amaya at lake

Tuesday, June 5, 2012

Very tired

     Yesterday I got an email from Marilou, the referral coordinator at Beaver. She emailed me the referral for Amaya's continued physical therapy, faxed a copy over to the therapy office and did everything she could to make sure that it was all taken care of for Amaya and us. She's amazing! I thanked her, but it just seems that a thank you isn't enough. On the other end at Loma Linda we had a friend Terra looking out for us and she took care of Amaya's form for us. We've had so many people helping us and making this journey easier. We're forever grateful to all who have helped us. Thanks to her efforts I was able to schedule Amaya's next thirty PT sessions. We got there early to start them before her appointment, but it took an hour so Melissa took Amaya back to start working while Lidie and I finished scheduling the appointments. Since we scheduled so close to the end of this set of appointments we had to take whatever times were available so now were back to a different time for therapy each day. We have some as early as eight a.m. and some as late as three p.m.. But, I'm not complaining, because Amaya is getting what she needs; daily PT. When we got back we missed the first twenty minutes where Amaya walked over the "gumdrops, pushed on the exercise equipment, and walked. Amaya started bending and measuring soon after I got there. Her starting measurement was 38, a little bit less than yesterday's 40. Then she made a huge jump to 60. Then she struggled to get to 70, then to 80. That was the hardest part. She started crying and crying out, "mom, mom, mom." In a save me sort of way that just broke my heart. Her hip was hurting her a lot (the skin was pulling), her knee was stretching, and her right leg was tired (all of her seemed tired). Any parent can tell you that seeing your child in pain or suffering is torturous. And seeing it for days and weeks now, well that is beyond words. When she finally got to 80, she said that she couldn't do any more, but Melissa asked her to get to at least 84. So sweet, resilient Amaya said, "I'll try." That's what she says everyday. And I respond with, "do your best, that's always enough." And it was. She had to pull and bend and through sweat and tears she got to 83, then to 84. Ugh. I'm not sure why her knee was so tight today, but hopefully we'll start to see some improvements in the next week. 
     After therapy we were all worn out. She asked to go home, but I reminded her that she had only eleven days of school left and that she really needed to go (Although I just wanted to take her home to rest). But, since she wasn't in pain and was able to function okay, we decided to try school. I gave her her pain meds and antibiotics, and gave her lunch. She whined and was cranky all the way there, but once we got there she lit up. She enjoys her friends, teacher and learning. She stayed for two and a half hours until the end of the day and did great. Her teacher did say that she did seem really tired and worn out towards the end of the day though. And sure enough she was; she fell asleep about seven tonight. We're all very tired today; Lidie was asleep by seven. It was really nice having one on one time with Lidie(we painted, played, cleaned and watched a show). 
Amaya doing knee bends and stretches.
Bending to pick balls up out of the ball pit then throwing them at the picture on the wall.
Yesterday while we waited for our appointment Lidie and Amaya filled out comment cards for Dr.Nelson. Here's Lidie's. I think its sweet that she wanted to write one to him too. 
Here's Amaya's. She's not done with it yet, but I think she's off to a nice start. She's going to take it to him at her next appointment.

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