Today Amaya hit her highest number on her knee since we left the hospital; 106! At the hospital Amaya was able to bend her knee to 120 degrees but this is the most we've gotten since then. Its funny because when Melissa begins to measure her knee Amaya always "cheats" by lifting her bottom off the table. But, she's like her mama, an honest cheat and always confesses. "oops, my bum, bum isn't down."Another great thing Amaya was able to do today, for the first time, was hold her left leg up without any help. I posted a picture of it below, but I'm not sure it does it justice. You could really see her muscles working.
After our session we went shopping at Clark's for some vegan jello mix and then to Target for a baby shower gift. Each time we parked I was so thankful for the extra space that a disabled parking spot gives us. It's hard wrangling a wheelchair, Amaya and a busy three year old Lidie in a parking lot full of crazy people (and even thought they see us coming in a wheelchair, they don't move aside). After our shopping we met tia Amanda at the two dollar movie theater in Moreno Valley to watch The Chipmunks Chipwrecked. The girls had been wanting to see it for quite some time. So for two dollars it was a nice treat after a hectic day and week. This was our first movie since Amaya's been home form the hospital and it went well. Before we got there she asked if she could still sit in the regular seats, but I said we'd have to wait and see if we could transfer with no problems. We walked into the theater after the movie started and just kept Amaya in her wheelchair and we sat in the back in the disabled section. It worked out great. But as we left Lidie decided to keep me on my toes and remind me that I have a three year old on my hands and threw a pretty big fit. Full of yelling, crying, screaming and not getting into her car seat. Oh, it was great. But, considering everything she's been dealing with and how much we've been requiring and expecting of her, I guess a fit is allowed every once in a while. Thankfully she pulled it together quickly. The ride home was nice; we drove thru Reche Canyon and saw donkeys, goats, horses, and chickens. It was fun, but made us want to go to the zoo soon! Our girls love the zoo! We've had passes to the San Diego Zoo several years, but didn't this year. Amaya said that she thinks the zoo would be a great place to go with a fixator, hopefully we can take the girls in the near future. On the ride home Amaya got a little scared because she said it felt like her legs were going numb. She started to cry saying "I can't feel my legs. What's wrong with my legs?" This has been happening often. It seems like car rides bring it on the most. We have her pump her toes up and down, but what helps the most is me rubbing her foot. So I've been doing a lot of one handed driving and one handed foot massaging. Today we added a blanket under her left knee to straighten the leg out a bit and that seemed to help as well. Lately I've been doing a lot of foot rubbing. Each night before bed I rub Amaya's left foot until she falls asleep.
Once we got home the girls relaxed. They watched Zookeeper, played Barbies, had dinner and then I gave Amaya a shower while Dad and Lidie played dolls in the play room. Amaya's shower and gauze changing were so much easier today. Mostly because of the lawn chair we bought. It puts her up at a better level for me to work with. It was so much easier to get the gauze off of the pin sites. The bottom three pins look great; just minor scabs around the pins. The three above her knee are still having some drainage throughout the day so when I remove the gauze it pulls on her skin a bit. I did notice some skin that was stuck on the pins. I tried to remove it as best I could without hurting Amaya too much. The top three are in the worst shape. All three look kind of pink (not quite red) and have some amount of puss on them. The highest one still looks like a hole and is the size of a dime. While I remove the gauze I'm hosing the area with our shower head and that seems to help loosen the gauze, distract Amaya from the pain, and helps any loose skin come off. From start to finish it took us about thirty minutes and I'm beginning to feel more comfortable with the whole process. She did stall for about ten minutes prior and did scream throughout the process. It's funny because when she isn't crying out in pain she yells out "I'm not in pain, just scared" or "that didn't really hurt, I'm okay." She still has quite a bit of fear and anxiety about the whole process, especially seeing the pins in her leg. But considering it's only our first week doing it, I'd say she's handling it all quite well, especially for a six year old.
Can you see that Amaya is holding her own leg up (using her own muscles)! Melissa was very impressed with Amaya's strength.
This is the scooter (I think it may be one of the first scooters ever made) that Lidie rides at physical therapy. It's hard to get a picture of her because she's constantly zooming by and trying to do flips off of it. The bus in the background is also a favorite of hers.
Here's Amaya's shower chair. I wasn't too crazy about the color, but it was her choice. It fits perfectly in the tub and was only ten dollars!
I want to thank all of you who have been calling, sending cards, writing letters and messages to us all as individuals and as a family. This is definitely a tough journey, but we're grateful for all the love we keep receiving. And please don't take it personally if it takes us awhile to get back to you, we're just kind of busy and living in survival mode. Some moments were surviving and others were thriving, but at the end of the day we are all exhausted. Thankfully the girls go to bed early so Josh and I can have some down time before we go to bed. Thanks again for reading and being a part of our journey, its nice knowing we're not alone.
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