amaya at lake

amaya at lake

Friday, August 31, 2012

Antibiotics

     I was going to start last night's blog by mentioning that we were all done with Amaya's antibiotic, but we had to start a new round today. I didn't get to post last night because I had such a terrible migraine. I fell asleep as soon as I put the girls to bed. Last night when I was putting Amaya's new gauze on I noticed that there was some yellow drainage from her bottom pin. This is the same one that has been bothering her. It looked like it was starting to get infected so I emailed Dr. Nelson a picture of it to get his opinion. Even though he's in Baltimore he emailed me back last night saying that it wasn't that bad but that she should start a new round of antibiotics. I was a bit frustrated and sad that she has to start another round of antibiotics so soon, but I had to let that pass so that I could move on and go about the business of taking care of her. Those set backs are minor and I've learned to not let them bother me. Dr. Nelson emailed his nurse and another doctor so they could write a prescription for Amaya. His nurse took care of it and the prescription was filled by noon. I'm so thankful for Dr. Nelson and Nadine's help. They always are helpful, kind and efficient. 
    Wednesday night was bit of a rough night for Amaya. It wasn't as bad as the past couple of days but she still cried, moaned and whined a lot. Last night was better, but still not good. When Amaya woke up yesterday Josh told her that September was almost here and that meant that she would be getting her fixator off  in about two months. Guess what she said?! "Can't it be four more?" We were surprised by her reaction. She said that she was scared. Later I talked with her about it and she said that she was afraid if it would mean another surgery, she wondered how they take off the fixator, what it would feel like, does she have to stay in the hospital? I told her that we could ask Dr. Nelson those questions at our next appointment. She was very happy about that and asked me to ask him the next time we see him. I reminded her that her fixator friend Alison offered to answer those questions for her too. Thank you Alison for your willingness to help! 
    On the way to therapy I realized that I forgot to give Amaya her pain meds before therapy the day before. She said that was okay, but that she would need them for yesterday. Amaya had her session wit Jay because we had to reschedule Amaya's session and Melissa was booked. Melissa came over and said  hello to Amaya and gave her a high five to encourage her. Amaya only had thirty minutes scheduled with Jay, but he came out a few minutes early to give her extra time. She worked hard and did her best. When it was time for bends she had a hard time focusing and staying motivated. She took five minutes to get to ninety degrees. I had prepped her that Melissa wouldn't be there for bends and that she would have to cooperate with me. I was proud of her for working hard and doing her best. I was happy that she got ninety degrees even without Melissa.  I was thankful that Jay gave her those extra ten minutes (ten minutes is a big deal when it comes to therapy).  
   Today when I told Lidie that it was Josh and my anniversary (nine years!), she said, "oh no. I don't want to go back to Amaya's doctor! What does she have to get now?!" I had to explain that an anniversary is not a surgery, but just the day we got married. She's very protective of Amaya and hated the thought of her having another surgery. But she was okay that I had married Josh and gave me permission to marry him again.
Jay had Amaya do ten bends on the total gym machine. Then he measured where her knee was. It was at forty-five degrees. Then she bent her knee and held it for a count of thirty. She was able to get it up to fifty degrees just by holding it those thirty seconds! 
After some bends just using her left leg she was able to get her knee to bend to sixty degrees!
Next Amaya worked on this machine. Jay asked how much she weighs (about forty-seven pounds) then put thirty pounds on the machine for her to pull. She did pretty good. She reminded me of Rocky working on that machine.
The second time she did it she had forty pounds on the machine. As she worked we noticed Lael's son working on his therapy. It's always nice to see a friendly face. One of the therapists helped Lidie get a cup for water and she was so happy. "Wow. That's so nice!" 
Next Jay dropped the weights down to twenty pounds so that she could walk sideways with them. 
This is the picture of Amaya's bottom pin that I emailed to Dr. Nelson. It's not that bad, but you can see some yellowish stuff, that it's raised, and that it's pink. 
The girls swinging at a park. Amaya tried to swing her legs to make herself go, but it didn't quite work. Since her left leg wasn't bending as much as the right one it made it difficult for her, but that didn't stop her from trying. 
If you look closely you can see the top of Amaya's head peeking out behind the white bars. She tried climbing up the slide, and she did it! Although she did freak me out a bit. 
As the sprinklers came on the girls decided to have some fun and get wet. Luckily I always carry extra clothes in the car. 

Wednesday, August 29, 2012

Interns

     Last night was one of the roughest nights Amaya (and us) has had in about a month. She complained of knee pain for pretty much the entire night. I had to give her a dose of Tylenol at bedtime and then again during the night. I haven't had to do that in awhile. I massaged her knee, rubbed her leg and tried to comfort her as best I could, but nothing seemed to help. She was crying, moaning, groaning, whining and whimpering throughout the night and into the morning. It was very tiring and sad. Thankfully she woke up rested enough for school. Her knee was very stiff this morning when she unlocked her bar. She cried and asked for it to stay locked. I reminded her that in the long run that wouldn't help her. Her knee just needed to wake up and loosen up. It took awhile, but then she was okay. I mentioned it to Melissa today and she said that it was normal for her muscles to get stiff like that.
   When I picked her up from school she said she had a good day but that her bottom pin was bothering her. She said it looked like it had a bump on it and it was hurting. She showed it to Melissa, who didn't notice anything, but did say to keep an eye on it. I checked it again after her shower and I noticed a small bump but no redness or other sign of infection. She's almost done with her current round of antibiotics so that should take care of any possible infection. She decided to take her wheelchair today so that she wouldn't get as tired. When I was signing her out of the office another teacher told me that she saw Amaya walking yesterday and didn't see her wheelchair. She said that she's proud of Amaya for all she's doing and how hard she's working. I thanked her for her kind words. It's always nice to hear kind words.
   At therapy there was an intern working with Melissa today. Melissa asked if she could observe Amaya's session. Amaya said that was okay. The intern was nice and kind, but I can't remember her name. Amaya liked her as well. While Melissa was applying new tape a medical student came in and asked if he could observe as well. He said he was going to be a pediatrician. He told Amaya that it was okay if she didn't want him there. She said that one student was enough for today. Before he left she told him she was going to be an orthopedic surgeon for Halloween and when she grows up. Melissa reminded her that she would have to do what he was doing now, observations when she goes to med school. He asked who Amaya's surgeon was and when we told him Dr. Nelson he said, "he's solid. He saves Haiti during his time off." We told him that as far as we knew he's already gone to Haiti twice since Amaya had her surgery in March. We told him that we also think Dr. Nelson is pretty cool.
     I like this picture for several reasons. One its shows Lidie having fun. Also, it shows her with many new friends. I took this today at the new play-group that she and I joined. She got to meet several kids and their parents. She got to share, play, take turns, talk, build, laugh, get wet and be a kid. We both enjoyed ourselves and its nice having an outlet and something to do beside take Amaya to therapy. When I talked about Amaya I showed off pictures of her leg and x-rays. The pictures of the fixator help people understand what it is she's doing, and what our life is like. It's nice to see people's reactions; amazement, excitement, encouragement and they recognize that she is tough and "a trooper." Lidie and I are enjoying our extra time. It's freeing to not have to rush off to an appointment. We've been going to parks, the library, and started our play group. 
The view from the lake as Lidie played.
Amaya warmed up on the bi-scooter today. She rode it down the hall, up the hill and back. When she got back in the gym she worked on the ladder then laid on her tummy on the red scooter while Melissa bent her knee back. As she bent it she would push and pull Amaya forward. Amaya enjoyed that. I didn't get any pictures because I had to take Lidie out into the hall to take a break. She was very tired, hungry and cranky and decided to throw a fit. 
Melissa asked her if she wanted to ride the bike but Amaya said no, so Melissa had her ride the scooter instead. She rode around bowling pins in a figure eight. Melissa asked her to go eight times and Amaya said, "well eight is better than ten." I love how she sees the positive in all things.
 Melissa asked again if Amaya wanted to ride the bike. Amaya still said no, so instead she walked to the adult gym to work on the total gym machine. She bent her leg and straightened it out.  
When we got back to the gym Amaya started her bends. Her knee was at forty-six degrees to start, but got up to sixty degrees in seconds. She worked hard, without complaining and got to eighty degrees within a minute and a half. She started to cry, but kept going. She kept her focus and pushed on until she got ninety-two degrees. 
   Later I reminded Amaya that she needs to cooperate and do the exercises that Melissa suggests (like ride the bike) because they help her. And we reminded her that when interns or students come we should help them by letting them observe. It's her choice if she wants to let them or not and I'm glad she voiced her desire. But I wish she would have helped that med student out today. 
   Tonight bed time was rough. Amaya cried a great deal with knee pain, Lidie was so tired she fought going to sleep, I was tired (from a poor nights rest). It was not a good combination. I kept asking for just one more ounce of patience and energy. Thankfully Josh made me laugh just when I needed it. Both girls eventually fell asleep. 
    As I rubbed Amaya's knee she showed me where it hurts. The bottom of her knee, under her kneecap (from the stretch that she gets by locking the bar in place) and on the inside of her knee. On the inside I can feel something move when I rub it. I'm not sure if its a tendon, ligament or muscle. I know that her knee doesn't look, work or feel like a normal one does so its hard to say what it is exactly. I had to push down on both places and then rub them to finally give her some relief. She's stayed asleep since so I'm hoping for a better night's rest, for all of our sakes. 

Tuesday, August 28, 2012

Tummy trouble

    After three weeks of First Grade Amaya missed a day of school. Her stomach was hurting and she had some diarrhea so we kept her home yesterday. I'm not sure if she wants me sharing that. Sorry, Amaya. She also had a stiff knee and knee pain when she woke up. We're not sure the antibiotics are what's upsetting her stomach. She's been on it for a week now. I'm a bit surprised and glad that she hasn't missed any school before this. She ended off her last school year with over forty absences. That just shows you how much her pain and mobility has improved since then (almost four months ago). 
    Yesterday we got a letter and picture from our friend Rory. The girls love it and we've put it up next to our stairs so that each time we go up and down we can see it. It's so nice having pen pals and getting mail. Although we haven't been so great about sending mail out lately (sorry Ben, Zoe, and Rory). We've go some we're working on and hope to get them in the mail soon. 
     Yesterday on the way to therapy Amaya said she was scared about her bends. She said she was afraid they would hurt. Its a given that they will hurt. I told her that I was sorry that it hurt her, but reminded her that it was only a small part of her day. She said that she wished it was me or Josh who had to do it, and I agreed. I reminded her how quickly she gets her knee to eighty degrees, and I reminded her that the quicker she gets to ninety degrees the sooner she can get it over with. I reminded her to do her best, try hard and not say that she couldn't do it. We talked about setting a goal for the day. We agreed on anything between ninety and ninety-six. She had ninety-six on Friday.
     When we got to therapy Amaya told Melissa that the fast walking she taught her on Friday helped her. Amaya was walking in pushing Lidie on the wheelchair. Melissa said she could tell that Amaya was walking faster and doing better. She was still turning her foot inward, but it was definitely an improvement. After her work she started her bends. She worked hard and didn't complain once. She kept saying, "I'll try." I can't tell you how proud I am of her when through pain she utters those words. It worked, she got to ninety-two degrees. Even though she was in pain. The pain stopped as soon as her bends were over. 
       Today she went to school but didn't take her wheelchair in with her. At lunch Josh gave her her antibiotic, asked how her tummy was doing and if she wanted her wheelchair. She said her tummy felt fine and that she didn't need her wheelchair. She said she did fine all day without it, but wished she had it when it was time to walk out to the car to go home. "That's when I was tired," she said.
    Tonight she had some knee pain at bedtime then woke up again with more knee pain. I know pain is a part of this, and normal at night. But I sure do wish she didn't have to deal with it. I'm looking forward to  the day when pain is no longer a normal part of her day.
Melissa had Amaya pull herself up the ramp on the red scooter by bending her knee. Amaya thought it was a fun way to do bends.
Amaya asked to ride the scooter, but Melissa asked her to ride the bike instead because she gets a better bend that way. Melissa did say that after she rode to the hill she could ride the scooter down it. After the hill Amaya didn't want to get off and kept riding. So Melissa told Amaya that she would have to ride the big loop with the bike, and she agreed.
Lidie enjoyed playing with some of the baby toys at therapy. She thought it was funny that she use to be a baby and played with toys like those.

Sunday, August 26, 2012

Parties

     This weekend we were invited to three parties, but only made it to one of them. Amaya had to skip her friend's party. We usually don't let Amaya's fixator limit her or keep her from doing things. But we decided that it wasn't the best idea for her to go to the party because they were going to have a water slide and the water wouldn't be the best for Amaya's pins not to mention she could bump it on the slide.  It wasn't worth the risk of infection or getting hurt. Amaya said she wouldn't mind going and not getting wet, but that wouldn't be fun for her or her friends. The party was for the friend who pushed her on Friday, and I worried that Amaya would get knocked over again under a party mood where kids are more excited. In the end Amaya was okay with skipping it. In the afternoon we went to Josh's co-worker's end of summer party. We all had a great time. There was a pirate, macaws, and friends. 
   Before we left I noticed Amaya talking to one of the adults at the party. I saw her lifting her skirt to show him her fixator and the mark on it to show how much new bone she's grwon. Later I talked with him and he said he was impressed with how well she explained everything to him. He said that she told him about her plans to be an orthopedic surgeon to help other kids like her. I showed him her x-rays and he was very impressed. 
   Yesterday I received two sweet messages from some dear friends. I can't explain how much their love, empathy, kindness, encouragement and prayers mean to me. It's so nice to know that they follow along, that they care, that they pray for us, that they understand Amaya's pain, challenges and courage. Thank you Cara and Terry. Your letters meant a great deal to me and Josh. I'm so grateful for all who read our blog, who check in on Amaya and us, who think about us, who pray for us, who wish the best for our family, who love us. Thank you. 
Here's Amaya holding one of the macaws. 
Amaya with two macaws. She loved holding them, and kept asking to go up and hold them. 
Both the girls holding macaws. 
Lidie holding one after being shy and hiding from them under a table for a few minutes.
Amaya showing off her "Nanny McPhee" tooth that's about to fall off at any moment. 
Lidie and our friend Alex watching the macaws from a safe distance.
     I found this in one of Amaya's books. It asks a lot of questions and on this page it asks what things you're good at, what's easy for you to do, what do you like to do, etc. Under what takes work she wrote, "tharapy" aka therapy. I love her honest answer. She knows its hard work, but not impossible. She can do it, but with some effort. Under qualities of a good friend she wrote "Mason." Mason is her best friend, who is one of the sweetest kids I've ever met. I thought that was pretty sweet.
     Here is some video from today's swimming class. Today was a very "off" day for Amaya at swimming. She was fine until we walked over to the pool. As soon as it was time to get in she started crying and saying that her knee hurt. It came out of nowhere so I wasn't sure what to make o fit. She had Tylenol in her system already so I thought maybe it was less pain and maybe more nerves. Last time she swam she worked so hard that her knee hurt a lot. I told her that she could try swimming without using her left leg as much. Her teacher said she could use mostly her arms. He taught her the breast stroke and worked on other ways to swim using her arms. Her teacher said he likes teaching her because she learns so quickly. He said she's one of the few to learn the breast stroke on their first try. I kept encouraging her to try, to not give up, to go for a few more minutes. She cried as she did things or would stop, but then cry as soon as she was done. She continued to cry for the rest of the lesson. I felt so mean for keeping her in so long and having her try. It was hard to know what was really going on, but I could tell it wasn't all pain. And I felt bad for the instructor. 
    Once she was out she was fine. After we washed her pins she asked if she could stay in the shower for  a few minutes (it ended up being almost fifteen minutes). She stood under warm water and that seemed to calm and soothe her. As I was helping her get dressed I apologized for keeping her in so long, and hoped I didn't push her too much. She said it was okay, and that "I wasn't the meanest mom in the world." That made me feel a little better. She never really told us why she was so upset in the pool, but her "knee pain" went away after she got out of the pool. She's got one more lesson to go, so hopefully she'll enjoy that one a bit more than today's lesson.
We had a packing party with friends today. We helped them pack while the girls played. Amaya held Amelie. 

Saturday, August 25, 2012

Inspiration

     On Thursday I got an email from another PFFD parent who said she's been reading the blog and gets inspiration from Amaya's "drive and sheer will to get better." Between that email and a comment by our friend Kristine on Facebook I was so touched. It means a lot to me to know that others are following Amaya's journey, that they see her strength, and determination. I'm touched by those who say that she inspires, motivates and encourages them. I know she does that for me. 
    At school Amaya got hit on the fixator twice. During one recess a friend bounced a basket ball and it hit her on her bottom pins. She said it hurt a lot, but she stayed calm and told her friends to go get her teacher then she asked them to get her dad. Josh was on his way to his other school, so our friend called him on his cell phone. He came back and checked her out. Her pins weren't bleeding, and she seemed fine. She already had Tylenol in her system so she was okay pain wise. Josh called me to give me an update. Honestly I was hoping it was her head or something else that got hit. But when he said, "on the pins" my heart sank. I was proud of her for being calm, cool and collected and relieved that she wasn't hurt badly. At another recess a boy was being impatient and rough at the drinking fountain. He pushed his way in front of Amaya and bumped her on the fixator. Amaya and her friends told a rec aide who talked to the boy. She said that her fixator helped protect her because the boy hit it and kept him away from her pins. 
    That night we had open house at school so she had a long day. Before open house the principal told me she saw Amaya walking around the school and said she looked good. Then a teacher, our friend Danielle, came over to check in on Amaya. At P.E Amaya said she did a lot of bends and worked hard. When I talked to the P.E. teacher he said he doesn't want to push her too hard. He asked me to remind Amaya to let him know when she's in pain, needs a break, needs Tylenol, or something is too much. I'm so grateful for all the staff who look out for Amaya. When we got home we celebrated Josh's birthday with cake, and gifts. 
     Friday Josh had the day off and got to go to therapy with us. Amaya wore her ankle weight on the way down and as she rode in on her wheelchair. On the ride down Amaya ripped her old tape off (she's been doing it in one clean rip. Ouch! But she's learned its easier to just get it over with than drag it out). Melissa applied new tape then had Amaya climb up and down the ladder to warm up. Then she rode the bike, the scooter, and then began to sit and stretch her knee. While she was doing those stretches I mentioned to Melissa that Amaya has been tripping lately when she walks fast so they worked on that in the hall. 
    After that Amaya started her bends. She didn't tell us what her goal was because she wanted to surprise us with a high number. Her knee was at forty-nine degrees to start then at sixty-one in seconds. In thirty seconds she was able to get up to eighty degrees! Once she gets to this point the pain really starts. She started crying. It was tough, but she kept going. At one point she said that she couldn't bend anymore, but she was already over ninety degrees. After a few more bends Melissa let her know that she was at ninety-six degrees and asked her if she wanted to keep going or stop. Amaya decided to stop. She said she didn't reach her goal of one hundred, but we were all impressed with ninety-six. It's always hard to see her in pain, to know that its part of her day, but such a relief when its over. She always seems to recover pretty quickly, within a few minutes. 
   When I picked her up from school she said her friend pushed her, jokingly, but Amaya fell to the ground. I don't think her friend realized just how hard she pushed or how prone to falls Amaya is. Thankfully she was okay. Last night she cried and moaned several times, more than she has in a week. There's nothing worse then seeing your child in pain. I laid next to her with my hand on her knee for hours.  Each time she moved, moaned and cried I teared up. It's sad to see her in pain. But I feel privileged to be able to give her some comfort, and relief. 



Here are the pictures the girls made Josh for his birthday. Lidie painted him a pink tree (because there aren't any in the world) and Amaya made the rainbow picture.

After climbing up and down the ladder she threw the bean bags into the ball pit. Then she climbed into the ball pit to get them out. I love watching her climb in and out with ease.
      As Amaya rode the bike Josh was impressed by how fast she was able to go and her increased balance since the last time he got to see her ride. In the beginning of the video you can hear her say, "thanks, dad." Josh had just told her she was doing a good job and that he was impressed with her. She went so fast! 
Melissa had Amaya ride the scooter in figure eights.
     I mentioned to Melissa that Amaya has been tripping on her left foot when she tries to walk fast/run. I noticed it last week when she tried to get from one side of the kitchen to the next. She moved fast and her toes caught on the floor, she tripped and almost fell. Amaya said she trips like that at school too when she moves fast. As soon as I told Melissa she had Amaya go out into the hall to work on a better way to move fast. She had her start slow then build up to a faster speed. Every time she walks she has to concentrate to step with her heal first and to lift her knee. She seems to have a harder time remembering to do that when she's moving fast. Melissa reminded her that the most important thing to remember when walking fast is to step with her heal first. At the end of school Amaya said, "Melissa really helped me! I didn't fall once!" At the end of the video you can see her loose her balance just from stopping after walking so fast. I let out a nervous laugh, but inside my heart stopped. There's a whole lot of worrying that comes when your child is in a fixator.
    Watching her was a bit emotional for me. On one part I was sad that she has to work so hard just to walk fast.  It's those little things that seem to bother me. Yet at the same time I was proud of her for how hard she does work, without complaining to do what many of us take for granted. Later as I thought about it I realized that not only is she having to learn to walk and maneuver her body with a fixator on, but with a new leg as well. This is the first time in almost seven years that she is walking with two level feet and a stable knee and hip. That's amazing and wonderful! Prior to these surgeries she had two ways of walking and getting around; one with her shoe lift on and one without. Without it she would stand on her right leg and on her tippy-toes with the left. With her lift on she would swing her left leg out kind of like a pirate. She adapted to both ways of walking and moving around. I'm optimistic and hopeful that she'll learn to walk, run, climb, etc. without her fixator and with her new hip, knee and longer leg. It's a lot to learn, but she'll do it! Just as she has in the past, she will overcome challenges and amaze me.

Thursday, August 23, 2012

Planning Halloween costumes

   Today we passed a Halloween store on the way to therapy. Amaya saw it off the freeway. The girls are still traumatized by the one they went into last year and mention it every once in awhile. I let them know that Halloween is only about two months away. I asked if they had any thoughts on what they'd like to dress up as this year. Amaya said, "yeah. A person with a fixator." I laughed and said that it was doable. Then very excitedly she said, "Oh, I know. An orthopedic surgeon!" Me and Lidie thought that was a great idea. Lidie said she wanted to be a tooth fairy. Then she asked Amaya if she would be a boy or girl orthopedic. Amaya said a girl since she already is a girl. I told her that her first orthopedic surgeon was a woman then she had a male one before Dr. Nelson. Out of the blue she said, "I need to write Dr. Nelson another card." She said she wanted to thank him for how much he's helped her. Let me paraphrase what she said she wanted to write. "Dr. Nelson, thank you for how much you've helped me. You are so nice. Because of you I want to be an orthopedic surgeon." I told her that was a very sweet letter and that I hope she does write it. Then she asked if she could call him Scott or Scott Nelson, or if it was okay to write "you rock," then she asked if surgeons like music or what kind of music they like. It was funny to see her wonder about all kinds of stuff. I told her she could ask Dr. Nelson in her card to him (and I explained why he call him Dr. Nelson and not just Scott). I let her know that each orthopedic is different and they all like different stuff. I hope she does follow thru to write the letter. Either way I hope he knows how much he means to her and us. 
    When Lidie and I went to pick up Amaya from school for therapy she was out at recess. I figured I'd find her easily in her wheelchair but couldn't spot her anywhere. A couple of  kids came over and told me she was playing so we just waited for recess to end. Then I saw her walking up with a group of friends holding a ball. She looked grown-up and confident and happy. It was nice to see her up and playing.
    When we go to therapy the lady checking us in said hi to the girls as soon as she saw them. I had talked to her on the phone yesterday when I called to reschedule two of Amaya's sessions. As soon as I said the last name the lady very cheerfully said, "oh for Amaya." Its nice having so many people know and look out for Amaya. When we got back with Melissa Amaya helped her set up the bowling pins so that she could bowl with the scooter. Melissa had Amaya bend her knee to stretch it as she bent down to put the bowling pins down. After she knocked them down she helped pick them up while working on knee bends. While she worked a friend and one of Josh's co-workers came in to say hello. Her son was there doing some therapy as well. She stayed and watched Amaya for awhile. 
    After her work Amaya started her knee bends. She was at fifty degrees to start and had a goal of ninety one degrees. She quickly was in the eighties so I teased that she should change her goal to one hundred. She said that she'd go for ninety-three. And on she went! She bent and pulled and stretched. And sure enough she got ninety-four! She's done so great these past two days that she's been working on not complaining or saying that she can't bend anymore. Her mind helps her do so much. Even though it was tough, she got through it better when she focused and was convinced that she could do it. 
    When Josh got home he told me that he was talking to the school psychiatrist about Amaya hitting her fixator on the toilet and starting new antibiotics. She jokingly said that with all that we've been through they should have prescribed us lithium. Its funny, and a bit true. For as crazy as this can be, you'd think they'd give you something to help take some of the stress away. Later as Josh and I talked he said that our life isn't crazy or neurotic. It's true (most of the time), we've worked hard to not let it get out of control or overcome us. Not to say that we don't have our bad days or bad moods, but for the most part we're pretty normal considering Amaya has a fixator on (and all that it entails). Tonight she's been crying with knee pain, so send some peaceful thoughts. 
Lidie and I got to feed the ducks today. She's been asking to go for a week now and it finally worked out to go. We were one of the few people feeding ducks today so they were very hungry. This one ate right out of Lidie's hand. I could tell that the down time, and the one on one time meant a lot to her. And it did to me as well. 
The view while Lidie played at the park. It was so nice to just sit, relax and enjoy some fresh air. 
Melissa was bending Amaya's leg back as she laid on the red scooter. Lidie looks like a ghost because she was busy jumping on the trampoline.
Amaya climbed up and down on the ladder seven times today. She had to work hard to bend her knee instead of her hip to climb up. A few times she leaned back onto Melissa's arm, almost sitting on it, while trying to bend her knee because it was so difficult to bend. She kind of looked like she could fall, but Melissa held on tight to her.
Amaya started off at a slow pace then all of a sudden started to pick up speed and pedaled so fast down the hall and up the hill. Here she is going down the hill and almost crashing into Lidie (who likes to stop in front of them to chat and then gets mad when they don't stop).
Amaya asked if she could swing into the ball pit before doing her bends. Melissa agreed while I got the bench ready. After bends both girls got to do one more swing into the ball pit.

Monday, August 20, 2012

A new focus

     The past few nights  have been a bit easier for Amaya. She still has some pain and discomfort but it doesn't seem to be as intense as it was the past month. What a relief! It's one of those things that you just have to look at with some perspective. It's not great, but it isn't as bad as it was. So it's good, but could be better. It's all relative and it seems to change each night or couple of nights. I try to be optimistic and realistic at the same time. 
    Lidie and I had sometime off in the morning then picked up Amaya just before school got out. Even though it was her minimum day we didn't make it home until five p.m. By the time we went to therapy, chiropractor, picked up groceries, picked up a prescription, then headed home it was late. I feel bad that she doesn't get that extra time off to relax like her friends do. When she got home she played in the playroom before doing homework and having dinner.  
    On the drive to therapy I reminded her of our new goal/focus at therapy, to do her best and not say that she can't do something. Instead of "I can't" she'll say "I'll try" and do her best. She use to do this all the time but the last couple of weeks she kept saying that she couldn't bend anymore and would try to give up. Today she did great! She worked hard, stayed focused, and didn't complain once. There were a couple of times where she needed extra reminders, but she got back on track pretty quickly. When it was time for knee bends her knee was at forty degrees (pretty tight but its expected for a Monday), but quickly got up to sixty degrees. Then she had some hip and knee pain and stayed in the sixties for about a minute. She was crying and frustrated because her skirt was pushing on her top pins. Melissa asked her to keep focused and do her best and Amaya replied with "I'll try." Then in less than ten bends he was in the eighties. She kept working hard for those last ten degrees, then got up to ninety. I was proud of her for never complaining or saying she couldn't do it, even though she was in pain. 
    When we first got to therapy we updated Melissa on Amaya's weekend. She was proud of her for working so hard on Saturday. When we told Melissa about when she hit her fixator and she was bleeding from the middle pins she looked at the pins. Melissa was concerned because the discharge from the pins looked white instead of clear or bloody. That can usually indicate an infection. We had a refill prescription for antibiotics already at a pharmacy and she suggested that we fill it. So we went ahead and did. Amaya will take them for ten days and that should take care of any infection. 
     When we got home there was a message from Dr. Nelson's office letting us know that they needed to reschedule our next appointment with him. It was moved two weeks further from when we have it now so we won't see him for six and a half weeks since our last visit. So by the time we see him next it'll be almost four months since we stopped lengthening (sixteen weeks). We're assuming that we'll be able to schedule her removal surgery (I tell her its a procedure, which doesn't sound as scary to her) then (or shortly after). How exciting is that?! 
Amaya started her session today by riding the bike down the hall, up the ramp and then did half of the big loop. After riding the bike Amaya came in and worked on the ladder. She climbed up and down five times.  
Melissa had Amaya do lunges. With each lunge she had Amaya try to get her fixator to touch the blue mat on the ball pit. It's a big stretch to get her knee to bend that far. After the lunges she tried to sit into a stretch which was even harder.
Look who's hiding in the ball pit? 
     Amaya got a bag full of hand me down clothes and shoes. She loved it! As you can tell by the way she's lining up the shoes, she was so excited to get so many shoes. Ever since she was born we've only bought her one or two pair of shoes at a time (usually because we had to pay $60 for a shoe lift to be put on each pair of shoes). So this is the first time in her life that she's had more than one or two pairs of shoes at a time. Now that her leg has grown she can have as many pairs as she likes! 
Here's a picture of her bottom pins. They look so good right now. About a month and a half ago they were bothering her but now they're doing great. 
     Here are the middle pins.  These are the ones Melissa was concerned about. They don't look too bad here, but if you look close the drainage at the edge of the pins is whitish, yellowish, and pus like.  
     Here are her top pins. The middle pin looks pretty gross. It's been scabbing up a lot lately and sticking to her gauze and giving her a lot of pain. The dark spots are where the skin had peeled off and bled. This pin has been bleeding a lot lately. These pins also have some drainage that looks a bit yellow.  
Here's my little ham posing with Teddy. She said that she wants to get something like that for Rory when she has her surgery in a couple of weeks. Much love to you Rory, Hava and Jon as you prepare for Rory's surgery.
      As you can tell by how light it is outside she goes to bed pretty early. She's usually pretty tired and asleep by eight p.m.

Sunday, August 19, 2012

Another fun weekend

     We had another fun and busy weekend. On Friday Lidie and I got to stay home and relax. We played, made cookies then decorated them, painted and watched TV. While we watched one of her favorite shows, Bubble Guppies, one of the characters on the show was a pirate and had a wooden leg. She said, "hey! That pirate has a prosthetic! One leg is a prosthetic and one isn't!" She thought it was so cool that a character on her show had a prosthetic. I love that prosthetics are a normal part of life for her. She'll grow up with an empathy, and acceptance. Friday night we enjoyed the evening sky, a rainbow and watched The Three Stooges, which the girls love! They laugh so much. 
     On Saturday I went to my book club. It was a great escape, chance to enjoy good food, good conversation and great friends. While I was gone Josh and the girls went for a walk around the lake. He said that the girls took turn riding in a jogging stroller and walking. Its about two and a half miles around the lake so Amaya got quite a workout. Both girls did. After resting at home for awhile they decided to go down to the school and ride bikes and scooters. I'm not sure where the girls were getting their energy from! At bedtime on Saturday Amaya asked if we could skip locking her bar in at night, she actually asked to skip to Friday night as well. I'd love to give her a break, but had to say no. She still needs it to stretch the muscles at night. When she wears it she doesn't get to relax or rest very well. Dr. Nelson said it wasn't a big deal if she missed a night here and there, but she had already missed a night this week.
    Today we went to Cooking 101 in Corona. We had a cooking class to celebrate our friend Diana's birthday. It was a great way to learn how to make something new, enjoy a good meal and hang out with friends. In the afternoon we met my brother and his family for a late lunch as an early birthday dinner for my husband. We ate delicious vegetarian food and got to spend time with sweet Nixon, my nephew. 
   Last week I made a connection with another PFFD mom. She had found our blog awhile ago and has been reading along. She emailed me and lives pretty close to us so we hope to meet her and her daughter soon. Thanks again for writing Brandi! I wonder how many other PFFD families out there are reading our journey. I hope we offer them some help, guidance, empathy, advice, comfort, support, information and hope. I'm grateful for all the connections we've made through this blog. Thank you for reading, following along and reaching out to us. 
Friday evening we had a rainbow near our house. It was so beautiful!
Amaya climbed up on the ladder to enjoy the view. She gave me a scare going up there. She did great, and Josh was spotting her. Nevertheless its a great picture.
Amaya and her class made skeletons at school during P.E. She decided to make hers with a short femur. As we talked about it she said that it had a short leg like her, but then I reminded her that she doesn't have a short leg anymore. Isn't that amazing?!
      As Amaya stepped out of the shower Saturday night she hit her fixator on the toilet. She hit the bar that arcs across her shin, but her middle pins started bleeding. She hit it pretty hard and started crying. Then her middle pins started bleeding. This is what her middle pins looked like after she hit them. She was afraid that she hit them hard enough to loosen the pins. When she fell and hit her top pins Dr. Nelson had told us that you'd have to hit it pretty hard to do that. Thankfully they stopped bleeding pretty quickly and didn't bother her during the night. 
Me and Lidie making our cake. 
Amaya mixing her cake mix.
Amaya enjoying her meal. We made stuffed french toast and an Australian chocolate cake. 
Lidie and Seraphine after sneaking some extra chocolate off of their cake.
Lidie loved cooking! She asked to come back again. 
Dad and Amaya making an Australian cake.
The girls with Seraphine.
Amaya used an old Polaroid camera to take a black and white photo of her aunt, uncle and cousin. Unfortunately because of the heat the film was ruined.
Thankfully we had our iPhones. What a sweet family photo of my brother Juan, sister-in-law Hilary and nephew Nixon. 

Saturday, August 18, 2012

Mom's night out

     Thursday night I went to meet up with the moms from the PossAbilities group. They meet once a month for a mom's night out (MNO). I had been looking forward to it since I was invited back at the PossAbilities swim party. I was a bit nervous to meet new people and to be the new one there, but was quickly welcomed and felt comfortable. I got to meet and talk to many moms who asked about my girls, were empathetic, kind and supportive. It was nice to learn so much about all of them, their children. Each one has their own set of challenges, trials and triumphs. I learned a lot and am encouraged by their love for their children, their dedication, their strength and courage. It was so nice to share about Amaya and her struggles, challenges and triumphs. Its funny because I always carry pictures of her x-rays along with pictures of both girls with me to share. The other moms were encouraging, empathetic and had kind words to say about Amaya. I look forward to the next meeting and to continuing to develop friendships with these ladies. The only bad thing about the night was that when I got home the girls were still up. Amaya asked me to rub her foot and Lidie cried until she fell asleep. Amaya had some knee pain and didn't fall asleep until almost ten. Thankfully she slept for the rest of the night, but I worried if she would be tired for therapy the next morning.
      When we saw Melissa Friday morning she said that she looked up Amaya's x-ray on Monday afternoon before she left work. She asked how our appointment with Dr. Nelson went so we updater her. I appreciate her care and concern for Amaya. She started by re-taping Amaya's knee. Although it doesn't completely remove the pain it does help a great deal, especially since she's been taping it up hire up on Amaya's  knee.
Amaya rode the bike down the hall, up the hill, back and half of the big loop. She did a good job keeping up her momentum. 
When she got back into the gym Melissa had her do some bends on the trampoline. Then she had her jump on the trampoline. It's kind of funny and sad to see her try to jump. She thought she was bending  with both legs and jumping. You can see that she had a hard time bending the left one. It took help from Melissa, concentration and determination, but she did get a bit better.
     Next she rode the scooter to the adult gym o use the total gym. Melissa had her bend with both legs first then with the left one only. Toward the end Amaya was having a hard time concentrating and keeping her focus. I hate when she doesn't cooperate and makes Melissa's job more difficult. Although she has been doing this for months now and was tired, but being rude to therapists is never okay. 
     After that it was time to start bends. Her starting measurement was 59. We talked about making a goal for bends today. She decided on 91 since that's what she had on Monday. I challenged her to do it under three minutes. If she did she would earn a push pop. She followed Melissa's lead and did great. Within a minute she was up to 80. What a huge improvement since Wednesday. Then she started crying and whining and saying she couldn't bend anymore. Melissa kept telling her that she could, to push hard, to not give up, to concentrate, etc. Amaya responds to Melissa when she does it, but when I do it she doesn't appreciate it and gets upset. I'm so thankful for the relationship between them. Melissa kept on pushing and Amaya was able to get to 92! Melissa confessed, "I pushed you hard." But Amaya didn't seem mean to mind. On the way out Amaya thanked Melissa for pushing her so hard. 
   On the ride to school I talked with Amaya about doing her best, and not psyching her self out. I told her that she can do it, she has to do it, has done it, and will do it. I told her that her negative talk works against her. I challenged her to not whine, complain or say she cant bend anymore all of next week and to see what the difference would be. She said she'd give it a try. Then reminded herself that her goal was to get back to 110 degrees before the fixator came off. The highest she's gotten is 106, so hopefully her new focus will help her. She asked if she could earn a treat (pick something from the dollar section at target) each time she does great at therapy. I agreed, since a little motivation seems to help her a lot. After almost six months of therapy she's getting a bit worn out. I can't say that I blame her. So I'm willing to do what it takes to keep her motivated and doing her best. Wish us luck.
Here's a picture Josh took of us at our appointment on Monday.