Some things get easier, while others are getting more difficult

    After my post last night I felt like I was focusing on just the difficult things. Although bed time and physical therapy are getting more difficult for Amaya and us there are some things that are easier. It's important to look at both things, keep some perspective and keep a positive attitude. Bath time, and gauze changing is much easier now. In fact Amaya helps me remove the gauze every nigth. She's no longer bothered by looking at her pins and is very cooperative when I put the new gauze on. Its funny to think back on those first days and weeks when she didn't want to look at her fixator let alone at the pin sites. She was afraid to touch it or have us touch it. Now she grabs onto it to lift her leg, and allows us to do it as well. And her leg isn't as sensitive when her fixator gets bumped. Her nightmares have stopped and she's no longer worried or confused (for awhile she kept saying that she thought this was all a dream, that she thought she hadn't had her surgery and would have to have another one). Lidie is also doing a lot better; she's not as anxious about us leaving or worrying that Amaya would be gone in the hospital again. I'm more comfortable with my new "jobs." We've all adjusted to our new "normal" and although we still have some tough, intense moments we're learning how to deal with them. We have a lot to be thankful for; our good health, the love and support of family, the excellent care that Amaya receives from her doctor and physical therapists, how well Amaya is doing, Amaya's pain is manageable, that she hasn't had any complications, and our health insurance (we just got our statement from the hospital for Amaya's surgery and hospitalization, it's just under $100,000. But, thankfully all we had to pay was our insurance co-pay).  So even as some things are getting more difficult, I know that they won't always be that way.

     These are Amaya's bottom pins, this is what she wanted to show her friends yesterday. But, in the morning she said her pins were itchy and asked me to wrap them in gauze. She said the gauze made them feel better. It probably worked out for the best, I'm not sure a class full of kindergartners would have been ready to see them just yet. 

     Josh passed this car on the way to our therapy appointment. He said that after our morning (the girls were fussing then Amaya threw a fit, but then they pulled it together), it was a good reminder. He said that it reminded him of our blog "Amaya's journey with PFFD," and that it's important for us to "enjoy your journey."  We do our best to enjoy it, with all its ups and downs. What I'm really proud of is that there is always an "up" to follow a "down." 

     Amaya had another great day at therapy. When we got there I told Melissa that Amaya was excited to start running. Melissa said that it'll probably be awhile, since she still has a high risk of tripping and falling. Kim did her massages and stretches with Amaya then we started some work in the adult gym (the pictures below show and describe what we did). When they were doing the knee bends and stretches with Amaya they suggested that we massage her scar tissue on the side of her thigh (right above her middle set of pins). They said that the scar tissue forms in kind of a random way, but when you massage it, the tissues can be shaped and allow for better stretching. The scars attach to the bottom muscles and can be painful during the lengthening. Melissa gave me another quick anatomy lesson to help me understand what was going on. Often I wish I had a refresher course to prepare me for this process. With a focus on; nursing, anatomy, massage therapy, physical therapy, wound care, etc. It would be so helpful! I'm so thankful for the patience and constant teaching that I receive from Melissa and Kim. During the stretches Melissa and Kim did a good job distracting Amaya (asking her to name pizza toppings and things that start with the letter p). They did their best, but Amaya still ended up in tears. Dad got to rub her back and hold her hand during the stretches. After all the pain she was able to get 101! I told Melissa that I was so surprised that here we were heading into our eight week post surgery (and seventh of lengthening) but Amaya was still able to get her knee in the hundreds. Melissa agreed and said that Amaya was doing great. Another thing to be thankful for. 

Amaya walking with Kim out to the adult gym to use some new equipment.

     Amaya used this last year after her super knee surgery, but hasn't used one since. She did really well for her first time. She bent and straightened her legs to push her body weight (about 47 lbs.) plus the weight of the mat that she layed on.

This is when her legs were straight. She looks so serious.

Here's a video of her using the machine. Sorry, I don't remember what it's called.

     Next Amaya worked on the parallel bars. She held onto the bars as she walked. She stepped over the bumps then the cones. The cones were more difficult for her because they were higher and Amaya had to raise her leg higher to step over them (which meant bending her left knee more). She did them twice, and of course Lidie was right there with her. 

     On the way back to the children's gym Amaya walked with Kim using a two finger touch. Kim holds onto one of Amaya's fingers and Amaya holds onto one of Kim's. It's such a light touch;Amaya is supporting herself as she walks.

After the finger touch, Amaya started walking on her own while Kim spotted her. 

     Amaya walking on her own. Kim is spotting and guiding her. It's so exciting to see her progress more and more each day. Dad went to therapy today and was excited to see Amaya work. Its really neat to see it all live. I'm glad he got to go and see what me and Lidie see everyday; Amaya working hard and meeting goals! 

     On the ride home Amaya's leg was cramping and she asked if we could stop and stretch it. We stopped at a grocery store to get some fruit (okay, and some sherbet too). She asked if she could use her walker instead of the wheelchair. I agreed since she wouldn't be walking a lot. She said that stepping helped her foot feel better. It's interesting that she drew more stares in her walker than in her wheelchair. It's frustrating to have people stare. I don't think they know how different it feels to be looked at, than to be stared at. We had about ten people stare at us for several minutes, non stop. All I can do is smile and try to model good behavior for my girls.

When we got home the girls played all afternoon. They played dolls, read books, played house then started playing dress-up. This is the first time Amaya dressed up using her walker. I'm not sure what she was, but she had fun and it was entertaining. 

This is Amaya playing on the floor. She sits on a big floor pillow that one of Josh's co-workers got her (thanks, again Sharon!). It's big enough to give her support and allows her to sit and play for a long time.