amaya at lake

amaya at lake

Tuesday, July 31, 2012

A day off

    Since we didn't have therapy today it felt like a day off. The girls kept asking, "aren't we going to therapy?" They're so use to it being a part of our daily routine that it threw them off a bit. They enjoyed the morning at home; we played, watched Soul Surfer (again), ate, lounged in pj's, and had a great time doing nothing. After watching Soul Surfer we looked up Bethany Hamilton on facebook and on the Internet and found out more about her. The girls think she's so cool. We found out she has a book out and the girls want to get it to read up on her. They saw pictures of her surfing in Bali this week are were impressed. On her facebook page we noticed that she mentioned a documentary about a blind surfer, Beyond Sight-Derek Rabelo's story. While we were beach camping last week in San Elijo we got to see them shooting the documentary. We thought it was cool to watch it, and now to read about it on her facebook page was pretty cool.
    Later we went to visit Tia Amanda. We watched a movie, Nacho Libre, that always makes us all laugh. We played, ate, picked tomatoes from her garden, the girls sang, and put on acrobatic shows. We had a nice time with Amanda. We were so happy to spend the day with her before she starts her school year and before Amaya starts first grade.
     Tonight Amaya decided to take a bath, and Lidie asked to go in there with her. When Amaya takes a bath we have to put chlorine in the water so that its like she's in swimming pool water. After she's done playing then we give her a shower to wash her pins off with soap. The bath helped loosen the skin on her pin sites. She was able to lock her bar in with ease, but as soon as it was in her knee started hurting her, almost immediately. She moaned and whined a bit and asked me to rub her knee for her. I massaged her knee, pushed down on her knee cap, then massaged her foot. She asked if I could pull her foot up (like its pointed up). She said that felt good, then thanked me for the massages. She's sleeping soundly now, but we'll see what the night brings. She hasn't slept thru the night in over a week and I find myself quite tired during the day. Thanks again for being a part of our journey and reading along. Knowing that after almost five months you're still checking in on Amaya means a lot to me. Thank you.
Today Amaya taught Lidie how to blow a bubble today.  They were both so excited. 
The girls decided they needed a Bethany Hamilton Polly Pocket in addition to the barbie that they made, so they amputated this Polly pockets' arm. They don't understand why you can't buy an amputated doll or a doll with a prosthetic. 
While they played acrobats at Tia Amanda's house Amaya did a somersault. I think it looked pretty cool so I decided to share it.

Monday, July 30, 2012

Back to therapy

     Amaya had another rough night. Although she didn't need any Tylenol throughout the night she did moan and cried throughout the night. This morning we had an early therapy session and when we woke up I was very tired. On the way Amaya wore her ankle weight to help stretch her knee and get it ready for bends. She also listened to The Eye of the Tiger twice to get her pumped up. I reminded the girls about their jobs at physical therapy; Amaya has to work hard and do her best and Lidie has to be patient, cooperative and helpful. After missing five days of therapy I was curious and nervous to see how they would do. Amaya did excellent, but Lidie had a couple of meltdowns. She was very tired and cranky, and thankfully she fell asleep at seven tonight.
      The girls were excited to see Melissa and share about the fun they had swimming yesterday and the fun they had in Las Vegas. Lidie shared her Bethany Hamilton Barbie with her. Melissa thought it was cool that Lidie amputated her Barbie's arm so that it would look just like Bethany's arm. We updated Melissa on Amaya's leg (her knee pain at night, the pain in her top pin sites, and that we've got the tightness in the hamstring under control). Melissa massaged Amaya's knee as we talked then stretched it. Amaya asked if she could work on the ladder so Melissa let her do that first then she rode the bike, stepped over cones, and used the total gym machine. 
     As a side note. I emailed Dr. Nelson some of the video of Amaya swimming from yesterday and he thought it was great and is going to share it with some surgeons during an upcoming lecture. I thought that was pretty cool. 
      Before Amaya started her bends Melissa had her lunge forward to stretch her knee some more. She did about five of those. Amaya's starting knee measurement was 61, which is great! That's one of the highest numbers since we stopped lengthening and very good considering we missed five days of therapy. Melissa was very impressed. She was also happy that we had scheduled in physical therapy time during our vacation (we had an alarm on our phone to remind us to go back to the hotel to stretch). Melissa asked Amaya what her goal was for today. She said, "90 or up." Ninety is the minimum that we want her knee to get to each day. Melissa said that if she could get to 90 within two minutes then they could work for a higher number. Amaya agreed then began bending. In ten bends she was up to 69 degrees. Then she go to 75 then after another ten bends she got 85 degrees. By this point Amaya was in pain; her top pins were bothering her, her knee was sore, and the stretch itself was hurting her. She cried and kept saying. "ow, mommy, my pins. Ow, mom, my knee." It was sad to see her in pain. It always makes me sad when she cries out for me. All I could do was encourage her to keep going. In a few more bends she was able to get 91 degrees. We were all happy with that number. She worked hard for it, and got it. Although she was in pain and in tears, she did exceptionally well considering she had missed so much therapy (that's the most we've missed in almost five months). Melissa was happy with how Amaya did today and we're going to continue with a three day a week schedule to see how Amaya does. Amaya still has her own personal goal of reaching 110 degrees, so hopefully now that we're back and on a regular schedule she can begin to work toward that again. 
    Tonight she fell asleep pretty quickly but has already been up three times in pain. Her knee is what's causing her the most pain at night. The only thing that seems to help is when I push on it and massage it. Wish us luck tonight; hopefully she won't have so much pain and hopefully I can get good rest. 
Amaya asked if she could start on the ladder today. Melissa had her climb up it five times, grab a ball, toss it then climb back down.
Then Amaya rode her bike down the hall and made a big loop into the adult gym. 
Lidie didn't want to ride a bike today, instead she kicked the soccer ball down the hallway. 
While someone else was using the total gym machine Melissa had Amaya step over the cones. The cones give her a bigger stretch and are harder to do because of how high they are. She normally steps over the "gum drop" balls, which are about half the size of the cones. She only stepped over six, and went back and forth a few times. 
Here's another view. 
Here she is working on the total gym machin. Melissa really wanted Amaya to work on this today, because it gives Amaya's leg such a work out and helps her knee bend a lot. After missing five days, she needed to do all the work she could before starting her bends. Melissa had Amaya fully extend her leg (to try to straighten it completely, which was a bit painful) and then to bend it as much as she could. Amaya also tried doing it with only her left leg, but she kept slipping. 
      Before I put new gauze on tonight Amaya asked if I would take a picture of the bottom of her pins so she could see what they looked like. The dark stuff on the middle pin is blood. Thats the first time its bled since she fell a couple of months ago. Amaya  said she bumped her fixator on the bottom of the pool (it has a very shallow end), so maybe that's why it bled. It's hard to say. There aren't very many scabs on there right now, because the pool water helps remove the scabs. Her skin was tight and itchy again today so we massaged some coconut oil after her shower and that helped her. But what causes the most pain on the top pins is the weight of the fixator. It pulls on her skin and hurts. She props it up with pillows or stuffed animals, but sometimes its just hard to get comfy.
I decided to also take a picture of her middle pins. These are looking good and aren't really bothering her. 
Here are the bottom pins. The picture is a bit blurry (sorry), but you can see that there aren't any scabs on those pins either. These were bothering her a few weeks ago, but thankfully they've cleared up now.

Sunday, July 29, 2012

Swim Party

   After a rough night Amaya woke up rested and feeling good. She said she didn't remember crying or moaning throughout the night, which is nice. She had cried several times and complained of knee pain. She slept in our bed and that made it easy for me to rub her knee as she slept. That way I was able to get some sleep as well. This morning we went to our first pool party with PossAbilities. We were all excited to go, especially the girls. PossAbilities is a community group set up by the Loma Linda Medical Center for people with disabilities either by birth or by accident. I added a link to their page on the links section of the blog if you'd like more information.
    As soon as we got to the pool party I could tell  we made a good choice in signing her up for PossAbilities and for swimming. We were greeted by friendly families. And instead of staring they would ask about Amaya's leg and fixator. In fact the first person we saw said, "oh, is she undergoing a lengthening?" It was so nice to not have to explain everything to everyone. It was nice to be around other families, who although had different disabilities, all shared some commonalities. Some of the moms invited me to go to a mom's night out, which sounds wonderful! It was so nice to see so many children having a great time.
     Lidie made a friend within minutes. She was a few months older than Lidie and happened to be an above knee amputee. Lidie thought her prosthetic was cool. I thought it was cool that she knew that it was called a prosthetic. They played for most of the time and had lots of fun. Lidie asked me why Amaya couldn't take off her fixator like her friend could take off her prosthetic. I explained that they aren't the same thing, but I'm sure to a three year old they look pretty similar. Her friend will be having a lengthening in a few years and Amaya shared her fixator with her and her dad. Amaya let her touch it and look at the pins. I got to prep them for what's to come.
   It's a small world, their doctor is the one that Amaya went to see when she was a baby. While we talked about upcoming procedures I let them know about Dr. Nelson and the limb deformity center that they've started here in Loma Linda. I let them know that there is an option to get treatment closer to home. Sometimes I feel like a commercial for Dr. Nelson, but I can't help it. He's done such amazing things for Amaya and she's a walking testament to the excellent care that he and his staff provide. It's hard enough to be going through a lengthening, but to have to be so far from home only adds to the stress. Early on we had been told that we would have to go to Baltimore for treatment, so we're so grateful to be getting treatment here in Loma Linda.
   After we came home Amaya started having some pain in her top pins. She said they itched and didn't feel good. Although we washed them after swimming they still bothered her. So she asked to have an early shower so she could wash them well. Her top pins had some blood and were sore. After her shower her skin was tight, dry and itchy. She cried a lot and was very uncomfortable. I rubbed some coconut oil on her skin and that seemed to help a lot. Then I massaged her knee and foot. At bed time she was able to lock the bar in within five minutes (finally it seems like the muscle tightness in her hamstrings has subsided). Then she asked that I rub her knee so I did until she fell asleep. She's already moaned a few times, so hopefully she (and I) can have some restful sleep tonight.
Here's some video of Amaya swimming today. She swam for almost the entire three hours that we were there. She kept going back and forth from the wall to Josh, then would swim over to Lidie say hello then swim to the deep end and back. She did great! She was so tired by the end, so she rode out in her wheelchair. She'll be starting her swimming lessons next sunday, and is very excited for that.  
     Here's Lidie with her Bethany Hamilton Barbie. Bethany is the name of the surfer whose life the movie Soul Surfer is based on. The girls love this movie, especially Lidie. She watches it almost everyday and can recite lines from it. Since they don't make Bethany Hamilton Barbie's we had to make our own. She asked us to cut the dolls arm off, just like Bethany's, so we did. And she loves it! In fact she's sleeping with her right now. She had her doll surf, and swim, and play "just like Bethany."

Saturday, July 28, 2012

Las Vegas

     We just returned from our two night vacation to Las Vegas. After months of craziness and no time off, we finally got to squeeze in a couple short vacations. First we spent a few days visiting family in Arizona then last week we went beach camping with family friends and then this week we got a last minute offer for two free nights at Circus Circus that we couldn't resist. We were so happy to have three small vacations before Amaya started another school year. I was a bit nervous about missing her physical therapy but we had decided to drop down to three times a week, so she'd really only be missing one session. But, we didn't' book our trip until we had Melissa's okay. Because although we were excited for a trip to Vegas, we didn't want Amaya to miss too much therapy. Melissa said that Amaya should be okay as long as we made sure to do our therapy homework and to set aside some time each day to do it.
     On Wednesday we arrived to therapy only to find out that someone (maybe me) accidentally canceled it when I canceled the two days we'd be missing. Ugh. I was frustrated and upset. I hated that Amaya would be missing a session for no reason other than a mistake. But, the good news was that Amaya's next referral was approved and I was able to schedule her next thirty sessions. We scheduled them on Monday, Wednesdays and Fridays and tried to schedule them early in the morning or afternoon so that she wouldn't be missing so much school. I am so grateful to Marilou for all her efforts to expedite the referral so that Amaya didn't have to miss a session. As I was there scheduling the appointments another patient came in and was talking to a schedular. He had to rearrange some appointment times. As they talked the woman said that physical therapy has to take priority over your life and you have to plan everything else around it. They both laughed and the man added, "yeah, if you want to walk." Then he looked at me (we see him there quite often. He had a fixator on before for a broken bone and has talked to us a couple of times) and said, "you know what I'm talking about, right?" I knew exactly what he was talking about. Because even though there are times that would be more convenient for therapy, I take the times that I can get, because the bottom line is Amaya needs her sessions. Physical therapy plays such a big role in lengthening. It's important to not miss any sessions, especially during the lengthening portion, and to do the homework. It also helps to have a therapist you like, who knows what they're doing and who you work with regularly. We've been so fortunate to have Melissa as Amaya's primary therapist.
I forgot to post this picture before. We had taken it the day we left for beach camping. We didn't have the wheelchair and Amaya was sore from her therapy so I carried her. I didn't think I would be able to, but she's pretty light. Even lighter than Lidie. I was able to use the fixator as a "handle" to help hold her up. She said it doesn't' hurt at all. I can't believe how tall she looks next to me.
This is a new stretch we did. Amaya would use her right leg to push the left one down to help stretch it. We had to spend between fifteen to sixty minutes stretching her leg twice a day.
       Here's some pictures of Amaya trying to lock the bar into her fixator. We had set an alarm on our phones each day to remind us to do our therapy. Since Amaya's leg has been so tight and hard to straighten (taking about an hour to straighten) we've been stretching it during the day. It hasn't been helping very much so we decided  to lock the bar in during the day. We did this the last time her leg was tight (Dr. Nelson had recommended it back then) and that seemed to help. The first day it took about twenty minutes, and we kept it locked for half an hour, then each day it got a bit easier. Each time its quite painful for Amaya and she finally asked if she could do it, since she said we were "too rough." But, even when she did  it she was in pain and in tears. And because of it she's had more knee pain during the day and she wakes up during the night crying. When I massage her knee and push down on the knee cap it helps. Some nights she woke up two or three times, but last night she was up almost every hour crying. It was sad to see her in pain and not able to rest. Tonight she did a bit better, but has already woken up once crying in pain.

The girls loved the circus the best. They got to play games and watch circus acts. They are huge fans of the acrobats and watched them perform about three times. This was the first time that Lidie was old enough to play the games and actually win something.
Here they are waiting to give high five's to the acrobats that they love. In fact they have their own acrobat routine they work on from time to time (even with the fixator on), but its hard to take any pictures because they tend to do it after showers, while their still naked. In the hotel they were doing some wrestling, acrobatic stuff until Lidie hit her lip on the fixator and cut her lip open. We've all been hurt by that fixator at one point or another.
On one of the days we went to the M&M store so the girls could pick their own color of M&M's. Lidie picked pink of course, and Amaya choose blue. I couldn't resist the dark chocolate ones and the mini's. And Lidie couldn't resist posing next to the girl M&M.
The girls enjoyed seeing all the fish in the aquarium in Ceaser's. 
I got a snuggle with the girls by the fountain in Ceaser's.  

Here's Lidie showing off her face painting. Amaya doesn't like having her face painted, but asked if she could have one on her hand instead.
After watching a show at the Palazo the girls posed for a picture with the performers.
     Our last stop before leaving was a new mall, Crystals at City Center to check out the tornadoes. Tia Amanda had recommended it to us since the girls love tornadoes, well mostly Lidie. Here's some of the pictures of the girls enjoying the tornadoes. They had a blast there: they played, ran around, looked inside the "tornadoes" and Lidie categorized them all by strength (EF-1 thru EF-5).    
     Since we knew we'd be doing a lot of walking in Las Vegas we brought Amaya's wheelchair, and it came in quite handy. Sometimes when Lidie was tired she'd ride on Amaya's lap and rest. We prepped Amaya for how many people would be there and that that would mean more people looking at her fixator so she brought along some of her longest dresses to help hide the fixator so that hopefully she didn't get that many stares. She still got some stares, but a lot of smiles with them, which was very nice. Amaya was able to shower in the hotel standing up, while I used a cup to pour water over her pin sites. We were able to modify things pretty easily. 
     While we were in Vegas I got an email from another PFFD mother in Virginia. She had emailed me about a year ago and we've corresponded back and forth ever since. She wrote to tell me that they would be visiting California next week and wanted to meet up. We were so excited to here this. This is the second family that we would be meeting from out of state. We met Ben and his family a few months ago and now Rory and her family will be coming out. I guess that's the nice thing about living in California, that people come visit here so often. This will only be the third PFFD family that we've ever met. We have several friends over the internet, thru email, thru the blog, and thru Facebook, but have only met two. In fact while we were in Vegas I contacted another family in Northern California and made loose plans to visit them in September when we go up to meet our soon to be born niece. 
      It's hard to explain all the emotions that these connections mean to me. I feel so overwhelmed, so comforted, so understood. It's funny after making plans with Rory's mom, I caught myself thinking, 'wow, we know so many PFFD families.' When in reality its only going to be three that we've met and a few that I correspond with. But compared to knowing no one, three seems like a lot. Especially in a world of 1 in 200,000 statistics, its so nice to meet another 1. Someone who has been on a journey like yours; who has had to seek out a good doctor, has had to learn about PFFD, has had to deal with stares, rudeness, and unwanted advice, someone who has had to decide what surgeries are best for their child, has had to ponder wether an amputation or surgery is best for their child, has had to navigate uncharted territory, and who knows just how lonely it is to be a 1 in 200,000 case. I remember those early months, and years when we knew no one, had never read a single blog, or knew of another PFFD family. It was such a terribly lonely time. We struggled to find information, and friends. And now that we have them, we are so grateful for them. The information and resources available now compared to six years ago is amazing. I hope that our blog gives another PFFD family some hope, friendship, help, information as others have done for us. And to our non-PFFD followers, thank you for being a part of our journey. We are grateful for such loving, generous people in our lives.

Tuesday, July 24, 2012

A new fixator friend

      Last night before bed I sent and email to Dr. Nelson with some questions. I asked if the tightness and pain (the pain is mostly in her knee, and she's complaining of her toes being numb as well) that Amaya has been feeling in her hamstrings was normal at this point in the process. I kind of thought all that was behind us since we finished lengthening so long ago (almost two months ago). I was pleasantly surprised to see he had emailed me back this morning. He said that the tightness was not uncommon. He said we can work it out and was confident that Amaya would have no problem with that. He said that when correcting any deformity, including a lengthening the muscles want to spring back to where they were for a time. I was a bit relieved to know that it was normal, but knew that that meant we would have to work hard to help those muscles stretch. So even though things are much easier now that the lengthening is complete, they are still by no means easy. Tonight was also a rough night. It only took about fifteen minutes to straighten the leg and lock the bar in place, but Amaya was in so much pain and was crying and screaming. I felt terrible because I couldn't stop, and just had to push her knee down and stretch it. But, once it was all done, she thanked me for "doing all the hard stuff." She continued to have pain in her knee and numb toes so I rubbed them for awhile, but once she's asleep she's been able to sleep throughout the night, which is very nice. 
     Today when we go to therapy Melissa asked Amaya if she would be willing to meet a little girl, Penelope, who just came in for her physical therapy evaluation. She said sure, but was a bit shy at first. It was so nice to meet Penelope and her family. Penelope is the same age as Amaya and just had her fixator put on last week. She's lengthening her tibia, so some things are a bit different but many are similar. Both girls have PFFD so it was so nice to meet someone else who was on a similar journey as us. This is the first family we've met that has PFFD and lives fairly close to us (within two hours driving time). Melissa took Amaya back to start therapy while I continued to talk to Penelope's mom. We exchanged information and hope to keep in contact. I'm sure our paths will cross again since we're both being treated by Dr. Nelson and working with Melissa. I invited them to come and watch Amaya do her therapy and they stayed for pretty much the rest of the time. Penelope got to see first hand some of the stuff she'll be doing. The girls are hoping to meet Penelope and her brother for a play date at the playground and some frozen yogurt soon.
    I didn't get many pictures of therapy today since we were busy talking, but Amaya had a busy day. Melissa straightened her leg and put a 1 lb. weight on it to straighten the knee. Then she applied new tape to her knee, then stretched the knee. Amaya also rode the bike (we did the long hoop and Penelope and her family joined us), rode the bi-scooter, and climbed the ladder. Then she did some bowling while doing lunges to stretch the knee. Amaya's knee was at 57 degrees to start (quite an improvement from yesterday). Melissa set 92 as a goal for today, and within a few minutes Amaya was in the 80's. Amaya was in pain and said that she couldn't bend anymore, but Melissa said that she could and to just do a few more bends. Then she was just shy of 90, so Melissa told her to do one big bend. Amaya said she didn't think she could, but tried her best and was able to get 94!  I reminded Amaya that when she does her best she does amazing things. 
     When we got home there was a message that we got our referral processed an are cleared to schedule Amaya's next set of appointments. So we'll take care of that tomorrow. After our therapy appointment tomorrow we'll be leaving to Las Vegas for two days and will be missing therapy, but after that should be back to a normal routine. We're going to try to do a Monday, Wednesday, Friday schedule with Melissa and see how Amaya does with that.  I wont be updating until the weekend, so thank you for reading, following along, being a part of our journey and all your thoughts, and prayers. 
Here's Amaya riding down the long hall way. We did the long loop today and had a "parade." Lidie led the way then went Amaya and Melissa, then Penelope and her dad then myself, then Robert and their mom.  I also got a video of all of us riding but didn't want to post it until I got Penelope's parents approval. 
Here's me after a visit to the doctor aka Amaya. She decided that my burn (its only a sunburn) needed to be taken care off. She said I need to change the gauze on a daily basis (she even told me I can purchase it in bulk online), and to watch for any signs of infection (redness, puss, pain, etc.). She was quite thorough. 

Monday, July 23, 2012

A day of birthdays

    Today was Melissa's birthday (the girls got her a plant, card and a donut from her favorite donut shop). Then we had lunch with Grandpa Bobby to celebrate his birthday. It's also uncle Danny's 21st birthday, so happy birthday to him as well. And then we learned that its also Daniel Radcliffe's birthday (the actor who played Harry Potter).  And its one month from Josh's birthday, so we're full of birthdays today.
          After missing four days of therapy we had lots to catch up with Melissa about. The girls told her about the fun they had camping, then we told her about how rough its been to lock the bar in at night (the last two nights have been terrible). Melissa started by stretching the back of Amaya's leg. We're not sure what's causing the tightness back there, but hopefully the stretches help.  After that Amaya did some lunges to bend the knee then rode the bike, then worked on the ladder. Her knee measured at 47 to start, which was higher than Melissa thought it would be after missing four straight days of therapy. I was a bit nervous about how Amaya would do after missing so much (that's the most she's missed in a row since we started back in March. But, I admit it was nice having a break.) Since her knee was so sore and since she missed four days Melissa told Amaya to make 90 her goal for today. In addition to the tightness and night Amaya is also having knee pain throughout the day and needing pain meds more often. In about four minutes Amaya was able to get to 90 degrees. I was relieved that she was able to do it so quickly, although she did seem to feel the stretch a lot more than she had been. Hopefully once we get back to a routine (we'll be trying to do three days a week) then she'll be able to get to her goal more easily. When we got home we did stretch the back of the leg and I'm just about to get her ready for bed and stretch it again. Keep your fingers crossed that there's no pain tonight. (Well, it ended up taking almost an hour to straighten her leg and lock the bar in place. It was very painful for all of us. Amaya was crying and toward the end getting a bit delirious. She started calling me weird and crazy and told me to stop hurting her. Then when dad tried to help she pulled away and said he might break her leg since he's so strong. Between Josh and I we were finally able to lock it in, but now were all worn out. I added two pictures down below to show how far we had to get her knee to straighten). 
Lidie refused to pose, but I had to sneak a picture of her new "Sandy" pants (Sandy for Grease) and cool new high tops. 
Here's Melissa massaging Amaya's thigh, were her tight muscles are. She said she could see and feel them. She suggested that Amaya spent about an hour during the day with her leg straight, and with a weight on the knee to help straighten it.  
 
The girls got to ride bikes today. We did the medium loop. 
Then Amaya climbed up the ladder five times to get a bean bag critter that she then threw. She had asked to do this; its one of her new favorite things to do.
Here's a look at her trying to bend the knee enough to climb up. 
The girls posing with Grandpa Bobby and Nana after lunch.
Here's how far the two bars are that need to be locked in are. It took so much stretching to get them closer (touching her toes, pushing down on her knee, lifting her leg up, etc). 
After about half an hour this is how close we'd gotten. That last little amount was so hard to get. I even thought, what if we can't get it in. I know Dr. Nelson had said that it was okay if we missed a night, but if we did right now, she'd be worse off tomorrow. 

Beach camping

    Well we arrived yesterday from four and a half days of beach camping in San Elijo, Ca. We had a wonderful time. On wednesday before we left we had a therapy session. Melissa re taped Amaya's knee so it would be on well during our time at the beach. At therapy Melissa stretched Amaya's knee. While she did that I asked when Amaya's knee would be able to fall to ninety degrees on its own, like the right one does. She said about a month or so after the fixator comes off. I was a bit surprised by that, I assumed that was something that would happen before then. Then Amaya rode the bike, climbed the ladder, did leg presses on the total body machine, and rode the bi-scooter. Amaya's knee was at 50 to start and then at 67 with a small scoot. She worked hard and was able to get her goal of 100 degrees. that last degree was the toughest, but she got it.
Here's Lidie at therapy last Wednesday. She's showing Melissa her "arm that got bit off by a shark." Ever since watching Soul Surfer the girls are into sharks, surfing, and amputated arms. 
In addition to all the other stuff we packed here's Amaya's fixator related bag. It has her soap to wash of her pin sites, towel to wrap on her ankle at night, the bar to lock in at night, plenty of gauze for four days plus extra for getting wet during the day, tape, hand sanitizor, scissors, etc. Since we had a lot to pack we  left the wheelchair and walker behind. 
On the drive down Amaya worked on a "to do list." It includes, getting in the water, playing polly pockets, take pictures, make a sand castle, boogie board, eat or drink, and play soul surfer. She is so funny! She not only did all the stuff on her list, but she did plenty more! She made friends, dug in the sand, touched a jelly fish, watched a show on sharks and octopuses, walked on the beach, was in a talent show,  jumped over waves, and much more!
The ranger station there had this cool wheelchair to borrow for free. It said its also good to use on snow. The ranger told us that its rarely used, maybe because no one knows about them. although Amaya could walk on the sand just fine, we used it one day when we went for a long beach on the sand and didn't want her to get too tired.  But after that she said she didn't need it, that she could walk just fine, or ride on dad's shoulders.
At the end of the walk she walked up tis set of stairs (105 steps!). She did it as part of her therapy. The next day she walked 150 steps, then again 105 the next day. She did an excellent job of walking, and climbing stairs. 
Here's another look at those stairs. 
Here's the girls jumping over waves! They loved the water and only got out when there were lots of jelly fish, or to eat, or play in the sand. 
Here's video of Amaya boogie boarding for the first time. She was still unsure about laying down, but by the end of the day she was riding like a champ! She was laying on her tummy, and steering the board. She had so much fun, but my phone ran out of batteries and I wasn't able to video tape her. 
Here's another look at her on the board.
Amaya started carrying her boogie board like a "real surfer." She really wants to try surfing, so perhaps next summer. 
Here she is playing in the sand. Her fixator got very sandy, but there was a disabled shower very close to our camp site. We were able tot wash most of the sand out every day. Some days she ended up taking two showers.
Here's what the jelly fish looked like. Someone said they were strawberry jellyfish, but were not sure. The girls were brave enough to touch them, unlike dad and I who preferred to just look. 
Here they are on a walk back from getting pizza across the street. As we walked back Lidie asked Amaya, "are you walking?" Amaya answered, "yeah. Are you ready for my fixator to come off?" Lidie said, "yeah" Then Amaya said, "well, then I have to walk to get my bone hard so this can come off." 
Amaya couldn't resist climbing up the fence to watch the sunset. 
Amaya lost her first tooth on Saturday! She was worried if the tooth fairy would find her on the beach, but she did. And even wrapped her money in seaweed.  Amaya left the tooth fairy a very cute note asking where she got her money, if she was a boy or girl, what she did with the teeth and if she could keep this tooth since it was her first one. The tooth fairy was nice enough to leave a note.
Here's the girls on our last day. They couldn't resist one last visit to the water and got soaked and sandy. So Amaya had to take a shower before we left.  
    On Saturday night we had a really hard time locking the bar in place. It took about twenty minutes of stretching, but Amaya was in tears the whole time. I could not only feel how tight the muscle was, but could see it bulge through her skin. Ugh, it was terrible. We haven't had a tough time locking it in since before we finished lengthening. We just kept stretching and eventually we got it in, but by then we were both in tears (it was just so sad to see her in so much pain and a bit frustrating).    
     I was so glad we got to get away. The girls had a great time. They loved boogie boarding, playing in the sand, hanging out with friends and family and meeting new friends. In a bathing suit you can't really hide a fixator, but Amaya did a great job of explaining to others what her fixator was, and how it worked. She did get lots of stares, but mostly people asked what happened. At one point two kids were ridding their bikes past her and were both so fixed on starring at her and didn't notice each other and then they crashed into each other. Amaya couldn't believe they didn't notice each other. At one point I looked up and saw her talking to five teenagers about the fixator. She answered all their questions, and shared what life was like with it on. Josh and I got to relax, I read a whole book, we listened to the waves, enjoyed the stars at night, enjoyed the sunsets and Josh got to go to a concert one night.  All in all it we had a great time.