Birthday weekend

     Wednesday night Amaya woke up twice with knee pain. The first time she was up at eleven p.m.  and fell back to sleep quickly. The second time she woke up at four a.m. and took almost an hour to go back to sleep. I massaged her knee and that seemed to help.  Last night was a late night for her. She was so tired that she started crying. She started saying that she didn't want to have a fixator anymore, she's sick of having knee pain, she's tired of explaining her fixator to others and just wants it off.  It was sad to see her so upset. I knew part of it was because she was so tired, but it was still sad to see her like that. And I wondered how much of that was true.
      This morning she had therapy before school. She started to say that she didn't want to go to therapy because she didn't want to have to do her bends. After how stiff her knee was on Wednesday and the pain she was in she didn't want to have to deal with it again. Josh and I both talked to her about having a positive attitude, doing her best and not giving up. I know therapy is difficult, but I know its crucial. On the way to therapy I played the Eye of the Tiger twice for her to motivate and encourage her. And it worked, she had such a great attitude and worked so hard today.
      When we got to therapy Melissa said that Dr. Nelson emailed her back and said that even though Amaya is doing so well he wants to order more physical therapy and then look at her x-rays at her next appointment (in two weeks). Melissa gave Amaya a bookmark she brought her back form Colorado as a birthday gift. Amaya loved it. Melissa is so sweet and I love how well she treats Amaya and the bond they share.

   Melissa started off by putting new tape on Amaya's knee then had her pull herself on the red scooter out into the hall.

Melissa had Amaya lunge and set down each cone that they were going to use in the hall and when they were done she had to bend and pick them up. When she was going to pick them up she knocked them over first and she rolled her right leg on one then fell to the ground. Its crazy how quickly and easily she can fall. Thankfully she was fine.

Amaya walked up and down the hall practicing keeping her foot forward and stepping with her heel first. She walked slow then fast and did great. She did that a couple of times.

Then Melissa had her walk with her feet pointed outward and weave through cones. Melissa said she would buzz Amaya if she turned her foot inward and she'd have to restart, but she didn't. The second time she had her turn her feet outward a lot. She looked like a pregnant duck. She did turn her foot inward and got buzzed and had to restart. Back in the gym she climbed up and down the ladder a few times then did lunges and threw balls .

    Then she went into the adult gym to work with this machine. Sorry the picture is blurry, but it was the only one I got and wanted to show you what she was doing. Amaya said that the thirty pounds was too light so Melissa moved it up to the next weight which was fifty pounds! She doesn't even weigh that much! She did so great! I caught two other therapist looking at her and smiling. Then one of them looked at me with a smile and said, "she's jamming!" Then told Melissa, "I wish that guy that was here earlier could see her." I was so proud of her. She said it was hard, but that didn't stop her. I like that she challenged herself beyond the thirty pounds and worked hard with the fifty pounds. She walked forward and backward several times. 

   Then it was time to start the big bends. I was curious how she'd do since her knee has been stiff and she was dreading this part of therapy today. But she did amazing! She was almost in tears saying, "ow, mom, my knee, ugh." Then Melissa would tell her to "bend with your elbows" or "you're almost there." Amaya would stop her whining and say, "okay" then bend some more. She pushed though the pain and got to ninety-one degrees in under three minutes. She did fantastic! All week she was at ninety-one degrees and I'm hoping that the therapy homework we're doing will help her next week.

     After therapy I had a message from Marilou (our referral processor at Beaver). She had some questions about Amaya's next appointment and wanted to make sure the referrals were in place for her to be seen and have x-rays taken. She's going to follow through with the referral for continued therapy next week so that Amaya doesn't miss any sessions. I am so grateful for Marilou's help, effort and how on top of everything she is. 

   After I dropped Amaya off at school I stayed to do some PTA stuff. As I was working I saw her and her friend walking to the cafeteria. She goes a few minutes before her class. Each day she picks a new friend to walk with her since it takes her longer to walk there. It was neat to see her walk the whole way, even thought she had her wheelchair in her classroom. I also got to see her walking back with her class. She looked so grown up. 

    Amaya will be seven on Monday and she started celebrating her birthday weekend by going out with her grandma and grandpa. She had a fun time eating and shopping. Let the birthday weekend commence!

More homework

    On Monday night Amaya broke her streak of sleeping throughout the night. She woke up at four a.m. in pain. I massaged her foot and knee until she fell back to asleep. Each time I would get up to go back to bed she'd wake up and ask me to massage her knee again. I was so tired and started falling asleep as I massaged her. Finally I got up to go to the restroom and she fell asleep, but before I could get back to my own bed Lidie woke up crying. I guess the hall light flickering on and off woke her up. That or Amaya crying. I laid with Lidie and fell asleep in her bed. Lidie woke up around six and tried to wake me up but I was so exhausted I just laid there. Then about seven thirty I woke up in a panic. I had overslept! I had only thirty minutes to get Amaya ready for school, pack her lunch and send her on her way. Last night was a better night for Amaya. When she first fell asleep she woke up each time I tried to leave her room complaining of knee pain. After about forty-five minutes she stayed asleep. She moaned a couple of times throughout the night but not enough to wake herself up.
     Today Lidie and I had a fun and busy day. We started the morning with a play date with our friends at a beach in Lake Arrowhead. We had fun relaxing, talking with like minded parents, sharing yummy food (I had the best hummus I've ever had), playing in the water, playing on the playground and exploring. After that Lidie had her dance class. She started last week and is enjoying it a lot. She's been wanting to go for some time, but with our hectic schedules it hasn't worked out until now. It's nice having one on one time with her and having some things be just about her.
    When I picked up Amaya for therapy today she said she had a fun day at school. She played baseball during P.E and hit two home-runs. She said she also raced another girl who offered to walk instead of run. Amaya thought that was pretty nice of her. She said the other girl still won, but that that was okay. She said during recess one of her friends accidentally hit her knee with a ball. She said he felt really bad about it, so she tried to console him. She said she asked another friend to walk up to the office with her. She got some ice for her knee and was fine after that. She didn't think she needed any pain medication, and did fine the rest of the day without it. I'm glad she stays calm and handles those situations with kindness.
     Yesterday I wrote another mom whose daughter just had her third fixator put on. I can't imagine going through this three times, let alone four (she still has to have one more lengthening done). Her daughter is doing great and has already gained 2 cm of new bone. It's so nice to be able to talk with someone who knows what your child is going through and what you're going through. I appreciated her encouragement, support, empathy and kindness. There's a sisterhood among fixator moms; we know the trials, stress, tribulations, the highs and the lows like no one else. I'm so grateful for the others who've helped me and those who I help. Somehow it makes this journey brighter.

     This is Lidie in the lobby waiting for Melissa. Notice the shoes (or shoe, I should say)? When we got to Amaya's school Lidie had lost one shoe. We looked everywhere for over ten minutes and couldn't' find it. I didn't have any extra shoes so I had her wear a sock that we found in the car. I was pretty frustrated, embarrassed and confused. When my husband got home he found it in the driveway, even though Lidie was convinced she dropped it down below her seat.  

Melissa had Amaya 1.5 weights on each ankle. She said she wanted to help build some strength in her legs. She had her walk on the ladder on the floor and had her step over two rungs at a time. Then she put the ladder back up on the wall and had her climb up and down once with the weights on then four times without the weights on.

Melissa had Amaya practice walking in the hall. She had Amaya walk slow from one cone to the next then fast to the next cone then slow again.  She wanted Amaya to work on keeping her foot straight, her ankle straight, and to step with her feel first. Amaya did pretty good, but still has a hard time keeping her foot straight. Melissa pointed out that Amaya is stepping off on her small toes instead of her big toe. She's got some work to do on walking, but I'm hoping it'll get easier once her fixator comes off. 

After Melissa had Amaya bend over to pick up each cone to help her get a bend.

After that they rode bikes down the hall, up the hill and around the inside of the entire building. We call that the huge loop. Amaya hasn't done it in over a year (since she did therapy after her knee surgery). She did great! Melissa said its over six hundred feet long. 

     When we got back in the gym we noticed my friend Christina was there with her baby Francesca. It was nice running into them, since we had just talked a week ago about therapy. It's always nice to run into familiar faces and to see other kids and babies working hard. 

     Amaya pulled herself along with a stool and knocked over bowling pins then she sat on the bench in a stretch and then would throw a bean bag into the basket ball hoop. Francesca liked watching Amaya and Lidie and they got a kick out of her too. She has a great smile and personality! 

    When it was time for knee bends Amaya got to sixty degrees quickly but after that it was pretty tough. Her knee was tight and she had a hard time getting to seventy degrees. Once there she struggled to get to eighty degrees. She complained that her pins on her hip hurt (later Melissa looked at them and noticed scabs stuck to her gauze. So each time she pulled the scab was being pulled. Ouch!). She kept creeping up two degrees at a time. After about five minutes she got to ninety-one degrees. She was in tears and in pain. Melissa worked on her knee a bit; bending and straightening it and massaging it. Melissa said that Amaya's knee was stiff and suggested that we start doing our physical therapy homework again. She suggested doing twenty lunges and knee bends each day. She thinks that since Amaya is doing a lot more walking (which is a good thing)  now her knee is getting stiff because it isn't bending as much. That and that she's only therapy three days a week. It always seems to go from one thing to the next, like a pendulum. Either a stiff knee to bend or to straighten. On the drive home Amaya and I made a plan for therapy homework. On the days she has therapy she'll only do her twenty bends and lunges, but on the days she doesn't she'll do twenty minutes of therapy homework (lunges, bends, ride scooter or bike, knee bends, work with band, etc). Speaking of homework I had Amaya do her school homework on the drive home. I knew we wouldn't be home from therapy until six p.m. and I wanted her to have some down time when she got home to play and relax before it was time to get ready for bed.
   Melissa said she forgot to email Dr. Nelson on Monday so she was going to do it tonight. Hopefully we'll hear soon what the next step will be; if he says to hold off on more therapy until we take the fixator off (maybe within weeks)? Or wait until her next x-rays before he decides what to do. I'm excited to know what's next. I can definitely feel that the end is near (for this phase at least). Wether we're looking at one or two months, its definitely a lot closer to the end that we've been.

Lidie's fixator

      On the drive down today Lidie started talking about when Amaya's fixator comes off. She started to say that the day Amaya's fixator comes off is the day she gets hers put on. Ever since Amaya had hers put on Lidie has wanted one. I'm not sure why, but probably just because her sister has one. Amaya has tried talking her out of it and letting her know that its a bit painful and she doesn't want her to go through it. Lidie still likes to pretend she's getting one. As long as its a pretend one I can handle another fixator. She said she's going to wear hers on her right leg. She said that Dr. Nelson will put it on for her at "children's hospital." She said she has to get it because her leg is so itchy and that's the only thing that will fix it. When I asked her how long she has to wear it for she said, "pfft, umm, like, ten weeks." Ten weeks seems like a lot for an itchy leg, but since its pretend, ten weeks is fine by me.

     We picked up Amaya from school then headed to therapy. Amaya said she had a great day and didn't trip once. She said she did have a girl be mean to her at lunch but she's going to talk to her teacher about it tomorrow. When we got to therapy I noticed that one of the receptionists had cut her hair. We talked for a bit and she made sure to say hello to Amaya and ask how she was doing. I appreciate how kind and welcoming people are there. I always feel like I'm going to a friends home or a home away from home. As we sat in the lobby a mom that I met at the last PossAbilities mom's night was leaving with her son who had just finished his session. She stopped and talked with us. She was so kind and friendly. She introduced herself to both girls and asked to see Amaya's fixator. She knows Dr. Nelson and his family from church and she told Amaya that he's a great human being. We agree. It was so nice to run into a friend at therapy. I get so much encouragement from other moms who have children with special needs. Their strength, courage, resilience, patience and kindness are a great example for me. When we got back into the adult gym several of the other therapists smiled, said hello and asked how the girls were doing. I appreciate the kindness the staff shows toward us.

Amaya started off by working with this machine today. She pulled thirty pounds. She started by walking backwards a few times then forward facing a few times. Forward facing is the hardest because ti requires her knee to bend more, but she did great with both. Lidie was a great motivator by standing at the end to give Amaya a high five.

     Then Amaya walked over the cones a few times. Melissa had to help her bend her knee and lift up her foot over each cone. Lidie always wants to walk behind Amaya but she walks so fast that she catches up with Amaya and tries to get her to go faster, but she just isn't able to, yet.  Instead of walking straight into the children's gym Melissa had Amaya walk all around the adult gym first to practice her fast walking. She did great! She walked so fast that me and Lidie didn't catch up (and we were in the wheelchair). Melissa said Amaya did a good job, but still had her left foot turned inward. We still need to work on that.

      Amaya did bends and threw bean bag animals into the basketball hoop. Melissa let us know that she did that earlier with Penelope our friend who is doing a lower limb lengthening. As Amaya did her bends she told Melissa that she decided to do the triathlon in the spring. Melissa was excited to hear that. As she did that Lidie played catch with Sarah, a physical therapist student who was making rounds. And I pumped some balls and the tires on the bike. After that Melissa had Amaya sit and bounce on the trampoline a few times to stretch her knee. 

Then the girls kicked the soccer ball back and forth a few times. Sorry the picture is blurry, but she was moving so fast!

Pumping the tires on the bike helped Amaya's speed a whole lot! Both tires were about halfway empty so she's been having to work extra hard to pedal. Today she zoomed! Melissa had her ride down the hall, up the hill twice then back to the gym. 

Here she is on her way down.  

Back in the gym Amaya climbed up the ladder three times. 

      Amaya pulled herself across the gym in the red scooter toward the bench to start bends. Next came bends. Amaya's knee was at forty-six degrees to start and quickly go up tot sixty degrees. After seventy she started to slow down a bit. At eighty she stalled a bit, but then when the pain started up we told her to just get it over with and she did. In ten pushes she got up to ninety-one degrees. Not bad for a Monday. After bends Melissa taped Amaya's knee. We told her that Amaya's pain has been so low and the best since she had the fixator put on. I let her know that it was time for a new referral to be processed because Amaya only has three more weeks scheduled. Melissa asked when we see Dr. Nelson next (not until the 27th of this month). But since that appointment and the end of her scheduled therapy sessions is about four months after Amaya stopped lengthening (June 4th she stopped). Melissa said that she will email Dr. Nelson first to see what he wants to do. At this point he might not want to order more therapy if he'll be taking the fixator off the next week or so (after her therapy runs out). Or he might say to order more therapy until he sees the next x-ray. It's crazy to think that we're reaching the end of life with a fixator. But, since he originally told us to plan on it being on for ten months, that's what I'm doing. I'm optimistic and hopeful that it'll be off before that, but I'm not counting on it. There's a lot of unknowns, a lot of wait and see, and a lot of wondering that goes with life with a fixator.This is just another part of that. Hopefully we'll get some answers soon.

Last swimming class

    Amaya has continued to have good nights and sleep in her own bed since last week. Friday was her best night in awhile. She didn't wake me up once! She said she woke up a few times, but just laid there and fell back to sleep on her own. Yesterday when she woke up she said that since she's having such good nights she wants to try falling asleep alone; without me rubbing her knee or foot. But at bedtime she changed her mind (I kind of figured she would). Tonight she's stirred and moaned a few times, so I'm hoping for another good night's rest for her.

   Yesterday she had a great day with her friend Mason. She had invited him up for a pre-birthday play date. Her birthday is in a week and we wanted to keep things low key, for many reasons. One of the things she wanted was to have a play date with Mason. Its so neat to see their friendship grow, change and stay true for so many years. They first met when they were babies, and started hanging out when they were about one and a half years old, so they've been friends for pretty much their entire lives. 

   At bed time last night we talked while she stretched her leg to lock the bar in for the night. She asked when Dr. Nelson's birthday was. I told her I didn't know, so she asked if I would ask him at our next appointment because she really wants to get him a gift. Isn't that sweet? I asked her how her pins were doing and she said that they were still itchy, but not as bad. She said that she needed more practice walking fast because she's been tripping and falling a lot. I was sad to hear that, but glad that she knows how to help herself. she must be doing it at school, because I don't see her falling or tripping very much. We agreed that we would practice at home, and then on Monday ask Melissa to work on it some more with her. The last stretch before she locked the bar in hurt the most, but she fell asleep within ten minutes of me massaging her foot and knee. 

     I've been going through some of the old blogs that I use to read to help prepare me for this surgery. I'm so thankful to those families for sharing their own journeys. Ever since our last appointment I've been curious about the rod that Dr. Nelson said he would be putting in Amaya's femur. I wasn't sure if I heard him correctly or not. Would it actually go in the femur? Or next to it? How does it go in? How long does she wear it for?, etc. I found a picture of another boy two months after his fixator was removed and you can clearly see the rod inside his femur. I couldn't believe its actually in it. I didn't think that was possible. That mom said that for her son she was told that it would be in somewhere between six months to two years. I found the picture from the day he was in the hospital to have his fixator removed and the rod inserted. It looks like he had a gauze bandage on his hip, so I'm assuming that's where they put it in through. She didn't say how long he was in the hospital for that. It helped to see an actual picture of it, in fact I keep going back to look at it ever once in awhile to try to understand what is going on and how to prepare for that. It looks like its only the width of one of her pins, but as long as the femur. I'm not sure how it stays in, because I didn't' see any screws or pins or anything. It helps just as we prepare our list of questions for our next appointment. I haven't told Amaya that she'll have to have the rod removed at some point down the line. I don't want to overwhelm her with too much information right now. I just remind her that Dr. Nelson is in charge and he lets us know what's best for her leg. That way I'm not promising her that she'll only have "x" amounts of surgeries, etc. She said she's still a little bit nervous about her fixator being removed, but not that bad anymore. 

    This morning was her last swimming lesson through SwimAbilities. The staff gave all the participants a towel, which she thought was so cool and "like a medal." I told her that in a way it kind of was, because nobody else got one, only those that participated. I told her that I was proud of her for wanting to join a swimming class even though she had a fixator on. I'm proud of her for living life, thriving and enjoying it to the fullest no matter what's going on with her. She could have been too shy or afraid or embarrassed or not want to work as hard as she did. Instead she pushed herself, and didn't give in to any of those thoughts or fears. Today her instructor asked if she wanted to go swim in the deep pool (12 feet deep). She said sure then headed over. She swam for about forty minutes. The other five she worked on floating and going down to hold her breath. She worked on the breaststroke, freestyle, and backstroke. He had her start off by swimming half way across the pool then she started swimming the entire length of the pool. She ended up going back and forth the entire way about ten times. She did great! 

   She overheard someone say that the pool was like the ones used in the Olympics and she thought that was pretty cool. I told her that the PossAbilities triathlon that Melissa mentioned to us does the swimming portion of it there in that pool. She thought that was cool and said that this could count as her triathlon training. On the way to the car she said she really wants to do the triathlon and was asking how long she has to wait for it. I told her its usually around April. So in the spring she'll do her first triathlon! I love that she's always setting new goals for herself! And meeting them! And exceeding them!

Amaya and her friend Mason decorating cookies yesterday for her pre-birthday play date.

   As I walked Amaya over to the deep pool for today's session I happened to notice our shadows. I have several pictures throughout her life of our shadows while we're holding hands, but this is the first time when you can see her fixator so clearly. As I looked at the photo I had some thoughts; the fixator looks so big compared to her legs, she looks so tall, her left leg looks so different now (longer and thinner), and I love to see her holing my hand. 

 After swimming halfway across the pool and back a couple of times her instructor asked if she wanted to swim all the way across. This was the first time she did it. When she was done she said it was pretty easy. Her instructor removed the floating vest/jacket thing and then she went on to swim the entire length of the pool about ten times. 

Here she is swimming back for the last time. She was so focused as she swam, she did great! 

Here she is after her last swimming class!  

Later we took the girls to the school below us to ride bikes and play on the equipment. As you can see Lidie had a great time! As Amaya rode the scooter she worked on bending her knee without me asking her to. 

Amaya swung across the bars. 

Lidie gave it a try too. 

I love the determined look in her eye. She went across several times as Josh spotted her. On her last time she fell on her bottom, but only managed to hurt her hand and not her leg. 

While they played on the bars Amaya invented a new way to swing. I thought it was pretty funny and clever.

Back to her own bed

     I know most six year olds sleep in their own bed, and Amaya use to as well. But ever since she had her fixator put on she's spent most of the past six months in our bed. Mostly because she would be in a lot of pain at night and it was easier to keep her in our bed so that I could massage her knee, leg or foot as needed and still get some sort of sleep (for both of us). But last night and tonight she's sleeping in her own bed. Since she's been having pretty good nights for about a week now I asked if she wanted to give it a try again, and she said yes. She did pretty good last night, but woke up about four times asking for water then I massaged her knee to help her go back to sleep. At around four Lidie woke up and woke Amaya up with her cries. Amaya was sweet and told me to go take care of Lidie first then come back in, but she fell asleep on her own before I got up. I didn't get the best sleep, but I was glad that she's trying to sleep on her own again and I was happy to not get bumped or scratched with a fixator throughout the night.
   Yesterday I got a call from Amaya's school (I got a bit nervous when I noticed it was the school) they said she was in the office complaining of stomach pain and feeling like she was going to throw up. She usually doesn't complain too much, so I decided to go and pick her up. By the time I got there she was back in class and asked if she could stay because she wanted to share a bird's nest with her friends. Her teacher let her share it then we went home. As soon as we got home she had to rush to the bathroom. She ended up not throwing up but just having diarrhea. That antibiotic seems to be messing with her tummy much more this time around than ever before so I'll be happy when were done with it (on Sunday). Amaya said that she had to go to the office earlier that day for pain medication. She said she was playing with her friend when she started complaining of pain then he said, "maybe you need your meds." Then he walked up with her to the office to get some. She said her pain was at a five, which is pretty high for her. I was thankful for her friend who is sweet, kind and accepting of Amaya. He's never once asked about her leg, wheelchair, anything. He just likes playing with her and thinks she's funny.
     I'm also very grateful for her teacher Ms.Gillespie, who not only helps Amaya learn, but helps take care of all her other needs as well. She's been so accommodating and flexible. I'm sure its not easy having someone come late or leave early from class three times a week. She sent a text last night after reading the blog. She asked if there was anything else she could do to help Amaya during the day with her knee pain and the turning in her knee (give her more room, etc.). I was touched that not only was she reading the blog, but she was thoughtful and considerate of Amaya's needs. Thank you Ms.Gillespie, your kindness means a great deal to us!
    Later that afternoon I got a text from Amaya's best friend's mom. She said his older sister asked if she could write a paper for school about Amaya. She has to write about someone who was overcome a difficult situation, came through it and inspires others. I was touched that she thought of Amaya for her paper. I'm glad that Amaya inspires others, as she does me. It touches my heart when people see the fire, strength, courage, resilience, and kindness in her. It certainly helps make up for all the negative comments, stares, etc. that we get.
    On the way to therapy this morning I played the Eye of the Tiger. We haven't listened to it for awhile and I wanted to motivate Amaya. And it worked! She made her goal between ninety-five and ninety-seven. At therapy she was focused, followed instructions, worked hard and did everything Melissa suggested, without complaints or whining at all. She walked into therapy and pushed Lidie in on the wheelchair (she knew she'd need it for after therapy).

Amaya started on this machine that she's never worked on before. She has her foot on a handle then pushed it back as she bent her knee.At first she did it with now weights on it, but said that was too easy so Melissa put fifteen pounds on it. She did that a few more times.  

Then she laid on it and did knee bends on it.I couldn't tell if she had weights on it or not. From there she walked into the kids gym. Lidie decided to push herself in the wheelchair. She asked me not to help at all so that she could do it alone. Several therapists smiled at her and cheered her on. It took her a few minutes to get to the gym, but she did it. She even turned the chair around corners well. I was impressed! She's been watching how Amaya does it and knew how to do it. 

After working on the ladder and doing some bends, lunges and stretches AmayaPossAbilities puts one on in April so I told her this could all be considered her training for that. We'll see what spring brings our way. 

     Back in the gym Melissa had her work on stepping over blocks. You can tell just how hard it is for her to lift her leg and bed it enough to clear the blocks. I asked Melissa what to expect after the fixator comes off in terms of walking. She said that its definitely a lot easier without the fixator, but Amaya will have to relearn how to step, work on her gait, and regain her range of motion in the knee. This will be the first time she has a stable hip and knee, a longer leg, no lift on her shoe, and no fixator. It's exciting to think about where she'll be in six months. If I know Amaya she'll definitely be exceeding goals. I also asked Melissa about the itchiness that Amaya has been feeling by her pin sites (Amaya has been scratching them and making them bleed). She said the itchiness is a sign of healing. The past week Amaya's gauze has been coming off so easily in the shower and her pin sites have been looking so well (no gunk, few scabs, and hardly any drainage). She said she wasn't sure if we could put anything on there to help because its so close to the actual pin sites. She suggested emailing Dr. Nelson for any advice. I probably will this weekend if it continues, I just hate to bother him. 

   When it came time for bends Amaya was focused and worked hard. She was able to get ninety-six degrees in less than two minutes! She was amazing! I worried that her knee would hurt later in the day but she said it didn't. In fact when I picked her up from school all she wanted to do was brag that she jumped on a jump rope at recess. I tried to be calm and proud, but secretly I was kind of freaking out. The chance of her falling or getting hurt is so high, but she said she did it with no problems. All I could do was smile and sigh. She said she had a great day, then later said that she fell at recess. She said she forgot to step with her heel first, tripped then fell to the floor. She said she didn't get hurt and didn't go get any pain medication. Thankfully she didn't hit her leg at all. It's funny but in one conversation with her I can feel nervous, scared, sad, happy, proud, relieved, stressed, grateful and many more emotions. All in a matter of minutes! She keeps me on my toes! 

   Thank you all for reading along and sharing the highs and lows of our journey.

Six or seven months later

    Amaya has continued to have good nights. I massage her knee or foot to help her fall asleep. She usually  moans a bit during the night, but not enough to wake her up. At therapy yesterday Melissa mentioned that the way Amaya turns her knee and leg can cause pain in her knee. She pointed at the muscle on the inside of her knee, which is where Amaya has been having most of her knee pain. Amaya turns her knee, foot, and leg inward (toward the right) to help her walk. She compensates her inability to bend her knee, and lift her foot easily by turning her leg and knee inward. She now does it almost all of the time, even when she's sitting or laying down. Another thing she's been doing is scratching her pin sites. They get itchy, which Melissa told us is a sign of healing (similar to when a scab that's healing itches). Lately they've been itching her so badly that she's scratching her leg so hard that her scabs are bleeding. Its sad and frustrating. On one hand you don't want her to be uncomfortable, yet you wish she wouldn't scratch or turn her leg because you know its only causes more problems. But I don't want to scold or punish her, because its really not her fault, she's only trying to make things easier for herself, I can't really blame her, she's already got a lot she's dealing with. It's sad because I wish she didn't have to deal with any discomforts. In all of it were pretty powerless which causes more frustration. I try to remind her to keep her leg straight, not turn her knee, to not scratch, but it's hard to do that without nagging at her. Ugh, its not easy parenting is it? Especially when you throw in all these extra issues.
   When I picked up Amaya from school yesterday she was out at recess playing. She was so busy playing with friends she didn't notice me for a few minutes. It was nice to see her up, playing, and having fun with friends. She said that earlier at P.E she played a tag game and batted. She said she hit two hard hits and she loved how she made the bat "crack." I was a bit concerned about the tag game, but she said the class was only allowed to touch her softly. I worry about her getting knocked over (kids don't realize how easy it is for her to fall), but I don't want to shelter or exclude her. Her P.E teacher does a great job of helping her and Amaya is pretty good at knowing what's too much for her body to handle. But I can't help worrying, just a little.

Amaya started by stepping over cones and gum drops. Lidie loves setting them up and walking over them too.

Here's some video of the girls stepping over. The cones were more difficult for Amaya than the gum drops because of how tall they are (about six inches). Its hard her her to bend her knee that much and to step with her heel first.

Next Amaya worked on the total gym machine and did some knee bends then she used this machine (I keep forgetting to ask what its called). She walked forward and backward. She did it about ten times and did a good job.

Amaya climbed up and down the ladder three times. 

Then Amaya did one of her favorite things, bowl with the scooter.

Next Amaya sat in a stretch and threw some balls.

      Before bends Melissa stretched her knee one last time by having Amaya lay on her tummy. To distract her Melissa had Amaya throw thirty balls at Savannah Rose (the picture on the wall). Then she started her bends. Her knee was at fifty one degrees to start. She go tup to eighty degrees in less than a minute! She was doing so great, but then she started crying and saying that she couldn't do anymore. Melissa had to work hard to keep her focused, motivated and going. In about three and a half minutes she was able to get to ninety four degrees! That's great, but I wonder what she could have done had she had a better attitude. After six months its a challenge to keep her motived (at times).  

    Today is September sixth, and Amaya's surgery was on March sixth, but I can't remember or count if its been six or seven months. That just shows you where my heads at. Its been such a crazy time, but at this point we're more than half way done. Ah (that's a sigh of relief).

After her bends Amaya asked if she could swing into the ball pit. Melissa agreed. Amaya was going to hold her legs up, but she wan't able to do it. Thankfully Melissa was there spotting her and was able to lift her legs up for her. Ah, never a dull moment.

Fixator kids

     Over the weekend I received an email from our "fixator friend Alison." She answered Amaya's questions about the removal of the fixator. Amaya was a bit nervous and hesitant about it coming off. Alison was kind enough to answer some questions, give some insight and advice. I can't explain how helpful it was. As I read the email to Amaya I could see the stress and fear leave her. She smiled and said, "oh, okay. I can handle that." That email was wonderful! I'm always touched by the kindness, empathy and generosity of strangers. Thank you Alison!
     Another thing that stuck out to me in her email was that she told Amaya that she's now a part of a "special club of 'fixator kids.'" Alison said that one day other kids will look up to Amaya and she will be able to help them like Alison has helped her. Perhaps that's the best way to pay her back, by extending that help, kindness and information to another child. Amaya has already been willing to share her fixator with other kids and help in any way possible. Hopefully our blog can offer some help to other families who will be living with a fixator.
    The girls enjoyed the long four day weekend. We celebrated my grandfather's eighty-eight birthday on Saturday, then helped friends move on Saturday, then visited with an old friend on Monday. Sunday and Monday I had allergies/cold and slept a lot. I'm still a bit "foggy" headed so please excuse any typo's. The antibiotic started upsetting Amaya's tummy again. It's one of the side affects of the antibiotic, so we're dealing with it as best we can. She still has six more days to go, but at least her bottom pin is looking much better. Her knee pain has subsided quite a bit and she's been able to sleep a bit better. She still stirs and moan a bit at night, but not as bad as last week. She isn't needing pain meds, constant massages or crying and waking up. I'm so thankful for the rest we've both been able to get.
   On the way to therapy I encouraged Amaya to do her best, work hard, to try and not say that she couldn't do something. She always does so much better when she says she'll try. I reminded her that after missing four days of therapy her knee would be tight and that she needed to work harder to get to ninety degrees. She wore the ankle weight on the drive over.
     When we got to therapy we sat in the lobby and waited for Melissa. As soon as we sat down I heard a mother tell her daughter that this place was for sick kids (I think she meant disabled. It was lost in translation) then she pointed at Amaya. She told her that she was fine but "see that girl she's sick and needs to be here" again she pointed at Amaya. Although I didn't appreciate her pointing at Amaya, talking about her with pity and judgment I just looked at the woman, then her child (who was wearing leg braces and was there for therapy), and decided to just smile and be the bigger person. Ugh. It's so frustrating to encounter such ignorant people. Its ironic that we've encountered several there in the lobby of therapy. It did hurt my feelings and I can't help but want to protect Amaya from such cruelty. But that encounter led me to a wonderful conversation with an old friend, Christina. I'm grateful for Christina's kindness, and encouragement. She sees Amaya's beauty and strength. And I know she's not alone. For one ignorant person there are many of you out there that see Amaya beyond her fixator and beyond a label of PFFD or disabled. And for that I thank you.
    When we went back Melissa put new tape on Amaya's knee before she started working. She had a good day; listening, following directions and trying her best. When it was tie for bends Melissa asked what her goal was for bends. She said ninety-one or ninety-two. Melissa reminded her to keep going and get it over with soon. Amaya did fantastic! She got to eighty degrees in less than two minutes. She continued to push hard. She was able to get to ninety-two degrees in less than four minutes! That's exceptional for the start of a week, especially after a long weekend!

Amaya started the day by climbing up and down the ladder five times. 

Then Melissa had her bend her knee and bend down to pick up a ball, then she'd stand with her leg bent to throw the ball into the ball pit. 

Amaya rode the bike on the small loop and into the adult gym to work on the total gym machine. This is a quick clip but you can see how fast she was able to get to a fast speed. She rode so fast today! 

Amaya worked on the total gym machine and was able to get her knee to bend to fifty-five degrees.

Then Melissa had Amaya lay on her tummy while she stretched her knee by pulling her leg back.

    Here's a picture of our fixator friend, Alison. I wanted to share her smile with all of you. She sent this photo to show Amaya what her pin sites looked like nine months after her fixators