First school day alone

     This morning while I was getting Amaya ready for school, Lidie was upstairs crying for me. I tried to hurry and get Amaya ready, but massaging her legs, stretching them, getting her dressed, turning her rod and unscrewing her bar takes some time. Amaya said, "I don't like having a fixator. You know why? 'Cause Lidie has to wait to be taken care of." I thought that was very sweet and empathetic of her. I reminded her that it's a team effort, we're all having to adjust and make sacrifices. Amaya had a great morning so we went ahead with our plan for her to go to school alone for the first time. Josh and her drove off and I waved them off just like the old days. It felt sorta strange. But, I couldn't help worry about her day. I hoped she'd do okay and that her pain wouldn't bother her too much.  I had a "break" of two hours before we had to go pick up Amaya for her physical therapy appointment. During my "break" I got to do laundry, clean the bathrooms, vacuum, eat breakfast, make more chonis for Amaya, shower and get ready to go.

     As we were getting ready to go I got a text from Josh saying that she was crying so her teacher called him to get her. My heart sank. I quickly got Lidie and myself in the car, let Josh know we were on our way and left. I cried on my way down to her. The only thing worse than knowing that your child is in pain is knowing that you're not there to help them. My heart ached for her. I know it's hard to be in pain, but worse when you're not in the comfort of your own home. I wondered and worried that maybe school was too much for her right now. By the time I got down the hill Josh had texted me letting me know that she was with him and had calmed down. Which made me feel better, and I was glad that at least she had him there with her. But, I know its also stressful for him, he's got work to worry about (he started state testing with his kids today and is on a schedule). When I got Amaya she was calm but still in pain. I wanted to go talk to her teacher before we left so that she knew that Amaya was doing fine now and to thank her for taking such good care of her. She let me know that Amaya did great during the morning. She said she was smiling and having fun in class, which made me feel good. But she said she could tell that Amaya was in a lot of pain, she said she could see a look of pain come over her. She said the class was so sweet to Amaya. As soon as she started crying some friends brought Amaya tissues while others patted her back. It makes me feel good to know that at least she was surrounded by such a loving class and teacher.  She asked what else she could do in the future to help the pain. We brainstormed some ideas with Amaya and agreed we'd try it again tomorrow. Tomorrow she'll bring a bigger pillow to rest her leg on in a straight position and Ms.Griessbach will set a timer for Amaya to do stretches on a regular schedule so that her legs don't get tired and numb from being in the same position. Me and Lidie will go down earlier to do some shopping so that we'll be closer to her in case she does get some pain and needs to leave early.

  At physical therapy we talked with Cassie about the knee pain. She said that some pain is to be expected, but that she should be seeing some relief. I'll talk with Melissa about it tomorrow (her main therapist) and Dr. Nelson. Cassie massaged the knee a lot and did a lot of calf and hamstring stretches. Amaya was able to get her knee bent to 95 degrees on her own and 105 when Cassie pushed it. I'm always amazed by how much Amaya can do while enduring so much pain.

    After our appointment we ran an errand to Clark's (we bought some coconut oil that uncle Richard and Cassie recommended for massaging on Amaya's leg) and then Target (the girls had a gift card from Grammy to spend). As we shopped I was proud at how proficient we're getting at shopping without a shopping cart. At Target we were overcharged by thirteen dollars on what the girls had selected and when I went to the customer service dept. to get my refund the lady there gave me grief. She was just very unhelpful. And all I kept thinking was 'lady, do you know how much crap we deal with day in and day out? Do you know what my girls deal with on a daily basis?! Don't give me grief!' I used all my self-control to tell her that no I wasn't wrong. And then finally she checked and saw that they made a mistake not me, and refunded me my money. I just wish people would try to alleviate other people's problems, make their life better not worse. A lesson for us all. 

   By the time we got home I gave Amaya a chance to rest before I locked her bar in place. I put our groceries away and then started to stretch Amaya's leg before screwing the bar in place. We added an hour during the day in addition to the night time wear since Amaya's calf and hamstring muscles were so tight. This hour of wearing the bar is quite painful for Amaya, and draining for me. It's the looongest hour of the day! Amaya cries, moans, wiggles, tries to get comfortable, asks and begs for me to take it out, asks "how much longer?!" over and over, tries to take it out while I try my hardest to stay calm and comfort her and massage her knee and foot. Seriously, the loooooongest hour! But, once it's over, its back to normal. Today I rubbed the coconut oil on her leg during that time and that helped massage it, and distract her. 

     Tonight Amaya asked Dad to give her her shower, but to not touch the gauze (to save that for me). He did which was a nice change of pace and they did great. When I started to take the gauze off I had a hard time with the middle pins. The gauze stuck to the bottom pin and I had to soak it, loosen it with soap and pull it slowly. It did hurt, but I finally got it off. At bedtime I made Amaya a cup of chamomile tea (also by uncle Richard's suggestion) and she loved it! She sipped it while I replaced her gauze and stretched her leg. I'm noticing how easier it is to put the bar in place at night, when we do it during the day. It still hurts her at night, but maybe because she's so tired, she falls asleep. Sometimes it takes her awhile but, tonight it only took thirty minutes. She was out at eight o'clock. I've heard her moan a few times, and I've gone to shush her and rub her knee a couple times, but for the most part she sleeps okay (considering). 

Josh was able to catch this sweet moment of the girls snuggling on the couch before Amaya left for school this morning.

Here's the new batch of chonis I made for Amaya. She went for boy shorts this time. 

Amaya was so proud of how long she was able to hold her leg up today (and how high). "I bet I can hold it long enough for a picture!" My little ham.

 

Lidie playing fetch with the ball pit while Amaya works in the background.

When she was done Amaya walked over to play too.

This is what it looks like when we lock the bar into Amaya's fixator. We do it for an hour during the day and then the entire night.

Here's a close up.

And here's how Amaya looks for most of that hour. She's in pain; asking and begging for me to take it off, trying to take it off, telling me why she doesn't like it (she's got a pretty convincing case going). It's sad to see her that way.

She unscrewed the bar herself, she was ready for it to come off! As soon as it comes of she's back to her  normal self. 

Here are her bottom pins (the ones on her shin). They still look pretty much the same. She actually asked to see the picture tonight (amd said they look pretty good), although she still doesn't want to see the actual pin sites themselves. 

Here's the middle set (right above her knee). This is the side closest to her inner thigh.

This is also her middle pin sites, but this is from the other side, the outside view. The bottom pin, with the gap in it has been draining a bit (and sticking to the gauze, which makes it very painful to remove). I think this is part of what is causing her so much knee pain. 

This is the top set of pins (by her hip). The top pin is finally starting to close up. This is the best it's looked since she left the hospital (a month ago).