Still have work to do

      Last night Amaya had a good night's rest, even though she woke up once and walked up stairs to get me. Every time she does that it kind of freaks me out and I worry that she'll fall. She fell back asleep as I rubbed her leg and stayed out the rest of the night. She didn't need any more pain meds throughout the night and slept in until six a.m.. This morning she went to school for almost two hours then went to physical therapy. Her teacher said she did great and she had fun. 

    At therapy she did stretches, rode the scooter, used the train (bi-scooter), did the stairs, bends then measured her knee. She started at 53 (which is a great starting point, her highest in a long time), then in fifteen minutes got to 85. Amaya's attitude and behavior at therapy today were terrible. Seriously, I was embarrassed by her rudeness, lack of cooperation and her attitude (she gave up and wouldn't try). It was so sad and frustrating to see her be so rude to Melissa and have such a bad day. I know we all have bad days, but man this was bad! What dad tells her is true; you can do anything that you set your mind to. I've seen her reach and exceed limits when she set her mind to it. Unfortunately today she set her mind at  being uncooperative and not doing her best, and that's what she did. We had a pretty serious talk afterwards and she lost two privileges. Melissa told her that she really needs to keep up her work at home and challenged her to have her knee already at 45 degrees when she comes in tomorrow. Hopefully today was just a fluke and that she'll be back to her normal self tomorrow.

    We also made a stop by the Beaver clinic to pick up a form for Amaya's school and brought some flowers for Marilou as a thank you for all her help. At home we made sure to do her stretches, wear her ankle weight and do her PT homework. I had taken the last two days off, but its obvious that we can't afford to do that. Now that she's done lengthening she still needs to work hard and not give up (we had a talk about that today) until her muscles stretch and things get easier. We've still got our work cut out for us.

     Tonight we got an email from "Alison our fixator friend" in New York congratulating us on being done lengthening. She pointed out that even though it takes eight months for Amaya's new bone to harden  (since she grew 8cm) the past three months do count towards that time. We'll obviously have to double check with Dr.Nelson, but that means that we could be having the fixator removed as early as November or December. Ah, some relief is in sight. Our goal use to be the end of lengthening, and now that its come its hard to stop, enjoy and relax because we  have a new goal (hardening bone and stretching muscles) and our new end date is about six months away. Thank you all for sharing in our success and trials. We appreciate you and the love you send our way.

Here's what Amaya's fixator looks like now.

The girls cuddling while waiting for therapy.

Amaya doing stretches with Melissa.

Practicing walking down the stairs. She still has a hard time bending her knee enough to step how she normally would.

Melissa had Amaya bend down and try to put her hands down flat on the floor.

After sitting on the side of the pit she fell back "accidentally." 

The girls grandma threw them a celebratory tea party to celebrate the end of lengthening. 

The girls with Grandma Lilli after their tea party

Very tired

     Yesterday I got an email from Marilou, the referral coordinator at Beaver. She emailed me the referral for Amaya's continued physical therapy, faxed a copy over to the therapy office and did everything she could to make sure that it was all taken care of for Amaya and us. She's amazing! I thanked her, but it just seems that a thank you isn't enough. On the other end at Loma Linda we had a friend Terra looking out for us and she took care of Amaya's form for us. We've had so many people helping us and making this journey easier. We're forever grateful to all who have helped us. Thanks to her efforts I was able to schedule Amaya's next thirty PT sessions. We got there early to start them before her appointment, but it took an hour so Melissa took Amaya back to start working while Lidie and I finished scheduling the appointments. Since we scheduled so close to the end of this set of appointments we had to take whatever times were available so now were back to a different time for therapy each day. We have some as early as eight a.m. and some as late as three p.m.. But, I'm not complaining, because Amaya is getting what she needs; daily PT. When we got back we missed the first twenty minutes where Amaya walked over the "gumdrops, pushed on the exercise equipment, and walked. Amaya started bending and measuring soon after I got there. Her starting measurement was 38, a little bit less than yesterday's 40. Then she made a huge jump to 60. Then she struggled to get to 70, then to 80. That was the hardest part. She started crying and crying out, "mom, mom, mom." In a save me sort of way that just broke my heart. Her hip was hurting her a lot (the skin was pulling), her knee was stretching, and her right leg was tired (all of her seemed tired). Any parent can tell you that seeing your child in pain or suffering is torturous. And seeing it for days and weeks now, well that is beyond words. When she finally got to 80, she said that she couldn't do any more, but Melissa asked her to get to at least 84. So sweet, resilient Amaya said, "I'll try." That's what she says everyday. And I respond with, "do your best, that's always enough." And it was. She had to pull and bend and through sweat and tears she got to 83, then to 84. Ugh. I'm not sure why her knee was so tight today, but hopefully we'll start to see some improvements in the next week. 

     After therapy we were all worn out. She asked to go home, but I reminded her that she had only eleven days of school left and that she really needed to go (Although I just wanted to take her home to rest). But, since she wasn't in pain and was able to function okay, we decided to try school. I gave her her pain meds and antibiotics, and gave her lunch. She whined and was cranky all the way there, but once we got there she lit up. She enjoys her friends, teacher and learning. She stayed for two and a half hours until the end of the day and did great. Her teacher did say that she did seem really tired and worn out towards the end of the day though. And sure enough she was; she fell asleep about seven tonight. We're all very tired today; Lidie was asleep by seven. It was really nice having one on one time with Lidie(we painted, played, cleaned and watched a show). 

Amaya doing knee bends and stretches.

 

Bending to pick balls up out of the ball pit then throwing them at the picture on the wall.

 

Yesterday while we waited for our appointment Lidie and Amaya filled out comment cards for Dr.Nelson. Here's Lidie's. I think its sweet that she wanted to write one to him too. 

Here's Amaya's. She's not done with it yet, but I think she's off to a nice start. She's going to take it to him at her next appointment.

Done lengthening!!!!!

    This morning Amaya made the last turn on her fixator! It's so exciting to think that we've completed two parts already (surgery and lengthening). Here's some photos from today then I'll update down below.

Here's Amaya making the last turn! 

I took this before Amaya made her last turn. See how the top part of the fixator is almost flush with the bottom piece? 

Here I'm holding up a measuring tape up tot the fixator. The small black mark was put on by Dr.Nelson after her first follow up. The top piece of the fixator (the one attached to her femur) has moved that much. It measured at about 3.1 inches, which was our goal and Amaya's projected discrepancy. 

Here's her x-ray from today. Dr.Jaeger said it looks good.

Here's Dad and Amaya checking out the x-ray.

In the cast room waiting for the turning rod to be removed.

Here's the bottom view of her fixator. 

Here's a close up of the bottom pin sites. That round silver thing is a screw that locks the bottom to the top to hold it in place. That one was already there, but Dr.Jaeger and Maggie (the lady from the cast room) put one in on the top one too to hold the fixator locked in place and to hold the growth that Amaya has gained.

 

Here's Dr.Jaeger removing the top silver rod (it just popped off) and adding the screw on the bottom. He told us to check it every once in awhile and if it starts to loosen up to tighten it. We joked that we never thought we'd have so many tools when it came to taking care of our children. 

Here's Amaya checking out her new "streamline fixator." She said it feels a little different. Dad noticed its easier to rub her leg now, without that silver bar blocking us.

Amaya doing knee bends and stretches with Melissa today.

Knee bends into the ball pit.

Here's Amaya bowling with the scooter.

Here's a picture of what her fixator looks like now.

     This is the piece they removed today (that's what we turned each day to lengthen her bone). And two other small pieces that we didn't get to keep. Amaya asked if she could keep it, and Dr.Jaeger asked Maggie what the policy was on that. She said that Dr.Nelson sometimes lets kids keep them. Dr.Jaeger said, "well you've definitely earned it" and let her keep it. Amaya was excited and can't wait to try to put it on her dolls.

      This morning we got ready and did our last turn before we left to our appointment. Dad took the day off to be with us.  At our appointment Dr.Jaeger looked at Amaya's x-ray and then at her top pins. He said the x-ray looked great and that its "pretty amazing" that she grew that much bone. He said the new bone looks good. He told Amaya "you just grew three inches of new bone, how many people do you know that can say that?" It was a good reminder of just how special this all is. Extremely difficult, but very special/amazing. Amaya asked me to not cry, and I didn't, but sure felt like it; its a very emotional and overwhelming journey we're on. We still have to do PT during the day (still five times a week for about a month then drop down to three times a week) and still have to lock the bar in place at night (to straighten the leg, we're not sure how long we have to do that for). I asked if he knew how long it would take for the new bone to harden, but he wasn't sure. But from all that I've read its usually one month per one cm of new bone, which he said sounded about right. We'll double check with Dr.Nelson next month.  So for Amaya that would be eight months for the eight cm of new bone she grew. We'll return in a month for new x-rays and a follow up with Dr.Nelson (and then every month after that so that he can monitor her for problems and to see the new bone growth and decide when the fixator comes off). So now that the lengthening phase is complete (woo hoo!) we're now in the consolidation phase which is where the new bone hardens. At this point the new bone is weak and is unable to resist breakage without continued support from the fixator (I got that from the RIAO website www.limblengthening.org). If the fixator comes off to soon the bone can fracture or collapse and we'd loose all the new bone growth.

    After we left I talked with dad on our ride to physical therapy. He said that at the beginning you think that three months is doable, but then you start and realize that three months is a long time. And its full of ups and downs. Some weeks we were great, Amaya's pain was managed you felt like you could do it, then the next week it was very difficult. May was long and hard and full of ups and down, not just with this but with work as well. I agreed and added just how emotional it was. Its not easy being the primary care giver for Amaya. It's very demanding and challenging, but we survived it! One thing that I keep thinking about is that we actually got the full amount of length that we needed and made a goal to get! That's amazing to me! We were lucky to not have complications, that AmayaAmaya through all this just to get five, were going to eight, and its gonna take a lot to stop us.' I made up my mind then that no matter how difficult we wouldn't be stopping on my account. So no matter how exhausted, or worn out I was, giving up was never an option. Although seeing her in pain did tempt me, I knew I couldn't give up. And she was remarkable; never giving up, always pushing herself, always trying her hardest. She's pretty amazing. We all had to do our best; Josh, Lidie, Amaya and myself; we had no other choice.
     At PT Amaya did stretches, bends, Melissa massaged her knee, she bowled, and then started bending and measuring (its about thirty minutes of work then fifteen to get to 90). Mondays are always tough, but     Amaya did great (more than great, excellent). She started at 40 degrees and worked so hard and in fifteen minutes got up to 90 degrees! I was amazed! On Friday she got to 81 (her lowest yet) and I was only expecting/hoping for 85. By the end both legs were tired and sore. Dad said, "I don't think anyone, besides mom, and Melissa knows how hard you work to get to that." I have to agree, unless you see it in action, its hard to fully appreciate all her hard work. She's determined to work hard to get back up to the 100's soon and so that she can drop down to three days a week of PT. Her hip bothered her a little bit, but not enough to affect her bends (which is great). Melissa said that we can expect the next week to two weeks to be tough, but after that PT should start to ease up a bit.
    The rest of the day we did some celebrating and taking care of business (oil change, dentist apt., form for Amaya's school); got ice cream, watched the Three Stooges, ate dinner at Red Robbin (thanks to Amaya's Paco & Grammy), Amaya had a root beer float, the girls bought a box of Twinkies, and then dad and Amaya toasted in real wine glasses with sparkling cider (I missed out because I fell asleep while putting Lidie to bed at seven; I'm still tired. So please forgive any grammar mistakes).
    We're all exhausted, but so relieved to be done with the "hardest part." Thank you all for your well wishes, love, support, kindness, generosity, prayers, and thoughts. Amaya only has twelve more days of kindergarten and she's hopping to go everyday. Then she can get a much needed break.

Last lengthening weekend

      This was our last weekend of doing turns. It's been a daily part of our lives for three months and one week. Each day, four times a day (sometimes three) we used a wrench to turn a rod that was attached to a bar that was attached to nine pins that went into Amaya's femur. It's a pretty crazy concept and one that I had dreaded. I thought it would hurt her, and the thought of all that metal on her leg was unnerving. Some people worried that she'd blame or resent us for doing the turns ourselves and the pain it caused her. But honestly, it turned out to be one of the easiest aspects of the lengthening process. Tomorrow morning we'll make our last turn before we head down to our doctor appointment. It's pretty exciting and emotional. Its a pretty complex set of emotions. There's obviously relief, thankfulness, being grateful, excited, pride in Amaya, a sense of accomplishment, glad that the hardest part is over,etc.. But there's also some sadness, dreading/having to prepare for the next phase (that can take up to 6-8 months), wondering/fearing how Amaya will do with the next phase (but, deep down knowing she'll do fine), worrying about the next few weeks of PT until her muscles grow and catch up to her bone growth (that can take about a month or more), wanting a break for Amaya and us all, knowing that our journey isn't done yet, and wishing it was. There's just no easy way of dealing with all of this. And I realize that there is a lot to deal with, and we have dealt with it for weeks.
     This weekend we planned to do nothing, since Amaya was in a lot of pain and fighting a possible infection and we weren't sure how she'd do over the weekend. Friday night was another rough night (the third or fourth in a row... I was so tired and worn out). She went to sleep easily, but was up every hour until about one am.. At that point I can't remember if she woke up or not, because I just couldn't stay awake any longer. She was up bright and early Saturday morning, at five thirty. Thankfully Josh got up with her and I got to sleep in until seven thirty when Lidie woke up. Her biggest complain was her hip pain. I had my book club that afternoon so I got to go and have a break while Dad was left in charge. He took the girls in to town to buy some candy from the candy shop as a nice treat/reward for finishing the lengthening part of therapy and as a distraction from Amaya's pain. While they were there they found a yard sale across the street where they bought two things; a "practice doctor game" (aka. Operation) and an "Eye of the Tiger" felt painting. After my book club I did some grocery shopping (because its so much easier when you don't have two girls and a wheelchair and/or walker to lug around as well. I took my time and enjoyed my break, but sure did miss the girls. I still worried and sent dad reminders to turn the rod, give her pain meds, and antibiotics, and to do knee bends, and wear her ankle weights, etc. although I was gone, my brain was still there. I ran in to two different friends as I shopped and it was nice to catch them up on Amaya's progress. One woman use to be Amaya's preschool teacher and she had such kind words of support and praise of Josh and myself. Which is humbling and nice to hear.
     Later that night I did our PT homework before her shower. As we removed the gauze the gauze on the top pins was really stuck and it took a long time to come off. Amaya cried a lot because it pulled on her skin so much. The pins still looked bubbly and bothered her a lot. Thankfully, she had a good nights sleep (first one in about four days). I even had to wake her up in the middle of the night for her antibiotic. She slept the rest of the night and woke up at six thirty. We all woke up feeling rested (a first in many days).
    Today we stayed home, rested, watched a lot of movies, the girls played a little, Amaya wore her ankle brace several times (it gives a nice stretch. She also wore it while she had her leg propped up against the wall, that way gravity and the weight would help her leg bend), we did PT homework (her knee is so tight! Melissa said that as we continue to lengthen these last few days the muscle would get tighter, and the pain would continue or increase). Which makes me dread tomorrow's therapy session. I know we'll have some rough sessions in the days to come. Tonight in the shower her top pins had some leakage and the gauze was tuck again (ouch! more tears). I took some pictures of her pins to show you.

While I was gone the girls played dress up and put on a show/play.

After Amaya did her PT bends and stretches Lidie wanted to do hers. She's really funny and wants to do it just as much as Amaya does.

Here's Amaya and her new "piece of art" that she bought at the yard sale. I think its pretty cute that she bought her first "piece of art" and that its "The Eye of the Tiger," but I gotta be honest I'm not a fan of felt paintings nor am I impressed that it "glows in the dark," which the girls are.  Good thing its staying in her room.

 

Amaya up and playing, but she did seem to get tired after about thirty minutes. But, she had a good day pain wise. Her hip only her at certain times, and we were able to control it with pain meds (she only took a couple doses. A big improvement from yesterday and Friday).

 

Here's her bottom pins. No real changes there, other than a little redness, but nothing to worry about. These have been a bit itchy, but she can tolerate them pretty well. Sorry the picture is blurry.

 

Here are the middle pins. These are doing well. The yellowish-green skin on the pins are her scabs (they don't look that color in real life, its more of a greenish-brown. I think the flash made them look that way). During her shower we push them down with a Q-tip so that they don't attach to much to the pins (they pull the skin during PT when they do). 

Here are her top pin sites. 

Here's a closer look. The scars are bubbly and raised a bit, especially the middle one. The middle pin is the one that stuck to her gauze the most. It almost looks like a blister. They had more drainage tonight; it looks kind of whitish/yellowish. 

Some insights from Amaya

Amaya has made some observations that I thought I'd share.
      When she used a public bathroom in her wheelchair she noticed that sometimes the sinks aren't low enough for people in wheelchairs to use. And sometimes when they are, they put the soap up too high to reach. "It makes no sense." she said. I agree. The layout of stuff isn't made for people who'll actually use them. A little thought, and planning would make things better, easier and fair.  
     On the ride home the other day Amaya asked, "why isn't there a movie of people without arms or legs? Why aren't they on TV a lot?" I tried to explain why as best I could, but realized I really didn't have an answer. She said, "when I'm big, I'll take a break from being a doctor and make a movie starring only people with missing arms or legs. Talk about inspirational. They'll help so many people. We can even have a race where no one wins or loses, but they all work hard to do their own best."

    Sometimes I have to remember that she's only six and a half. Her wisdom and maturity amaze me.

Kim's last day

     Amaya decided to skip school again today (because her hip is still hurting so much). On our way to therapy we stopped by Target first. The girls had some money from their great grandpa and picked a Barbie. Lidie got a mermaid to replace her broken one and Amaya picked a doll and a doctor's outfit for it. She said it's an orthopedic surgeon. On the way I realized that I had forgotten to turn the rod on Amaya's fixator and to bring the rod with us (ugh! frustrating! that's the first time I've forgotten). I did it when we got home and then will do the other two turns later tonight (one before bed then one around midnight).

        This morning Lidie woke up with gum in her hair. A little bit of peanut butter and brushing it out with a toothbrush was all it took. But she wasn't too happy with the whole process. Thankfully it all came out and we didn't have to cut any off it off. It's funny, but these normal crazy moments are a nice break from our crazy normal. 

Amaya and Lidie gave Kim cards that they had made her. Today was her last day interning at therapy. She has been working with us everyday for several months now and has helped Amaya get thru her lengthening. Kim will be graduating next week with her doctorate in physical therapy and we wish her much success in her career and know that she will be a great therapist.

     At therapy I put the 1.5 lb. weight on while we waited for our appointment. When we got back Kim added more weights to make it 4.5 lbs.. Kim massaged Amaya's knee then started to remove the tape so she could put on new tape (it seems to be lasting one week, and on Friday's we replace it). Today Amaya cried during tape removal, which was rare. But it hurt her skin to peal it off, plus her hip was hurting and so was her knee. After that Kim started doing knee bends, which also hurt. She held each bend/stretch for a count of thirty. There were lots of tears and I was kind of dreading measuring the knee bends. Her knee was at forty degrees at first measurement then quickly moved up to 60. It took big effort to get it to 70. Melissa asked that she try to at at least get to 80 today, since she was in so much pain, but Amaya said, "no, I want to shoot for 90, not 80." She tried so hard; pushing, pulling, grunting and crying, but was only able to get to 81 (that's the lowest she's gotten this entire time). Since she did her best, and worked so hard Melissa said that was fine for today. Both of her legs were sore and tired. I was hoping for 90, but 80 is still really good at the end. This was her last physical therapy session during lengthening (woo hoo!). We still needs to work over the weekend so that she doesn't lose much of her range of motion by Monday. 

     After our appointment we went to the east campus hospital (where they do a lot of the out patient surgeries) to meet Dr. Nelson. He was in surgery today, but he said he would come out and see us for a few minutes to address my concerns in the email I sent him last night. We only had to wait about twenty minutes to see him (the girls brought dolls and snacks to keep busy). When he came out he asked Amaya how she was feeling, asked about her rough nights and removed the gauze to look at her pins. He said her pins looked good, and not infected. But I mentioned her pain, and showed him the inflammation and let him know that its similar to how they looked last time and that the pain went away with the antibiotics. Since he'll be gone for a week in Haiti he didn't want her to go all that time without anything and gave us a new prescription for antibiotics. He said that she's doing excellent! Amaya showed him her Darth Vader with a fixator and her new barbie that's an orthopedic surgeon. That put a smile on his face. Amaya said that she wants to put hardware on kids, and he smiled and said "its fun." He pushed the silver rod on her fixator down (the one that we turn, it was starting to lift up). Dr.Nelson said he'll call his nurse so that we can go in on Monday to see Zach (one of the residents) and make sure we get new x-rays. He said its important to get new x-rays every two weeks. He said that Zach will lock the fixator in place, then we'll return in one month for new x-rays and a follow-up. He said to continue to do PT five days a week until our next appointment (in one month), then we'll drop down to three times a week. He said to email him if we have any questions or concerns. I was very grateful that he made time for us in his busy schedule. He had to return to surgery, but we thanked him for his time and kindness. After we left I felt much better; my nerves were calm, my stress relieved and my fears gone. 

     When we left Amaya said, "See that's why I want to be an orthopedic surgeon." "Why?" I asked. She responded with, "Because they're awesome! He's awesome!" I agree. Then she said that she can't wait to put hardware on kids. I asked Lidie if she still wanted a fixator, that maybe Amaya could put it on her. But Lidie said no. Amaya said, "I bet seeing me, you've changed your mind. It's hard Lidie. That's why they call it hardware. Because its hard and you wear it, see hard-ware." I had to chuckle at that.
     We went by Amaya's school to drop off her homework packet then headed home. At home the girls played doctors and performed surgery on their dolls. Amaya had a message from Darth Vader letting her know that he felt "the force" in her today working hard and doing her best, and that he was very proud of her. After dinner Amaya wore her ankle brace for fifteen minutes, then we did her PT homework. It's our last weekend before we finish lengthening. She started her antibiotics tonight, and hopefully her hip pain will get under control soon. She fell asleep pretty easily, so I'm hoping for a good night (for her sake and mine).
   Thanks again for all your love, help, prayers, thoughts, well wishes and support.

Darth Vader

     I didn't post last night because I fell asleep at seven thirty when I was putting Lidie to bed. Amaya had a rough night on Wednesday (needed pain meds twice, and I had to massage her knee and toes often). Last night was a bit rough too (she fell asleep okay, but was up at midnight until one).

A quick recap of yesterday...

Amaya got ready for school but after driving off she returned. She was in too much pain to go.

Lidie accidentally bumped Amaya's leg as she walked by her, ouch!

I got a call from Marilou (at Beaver clinic). She tracked down Amaya's PT authorization, got it faxed over to her office and was going to expedite it. Hopefully we can make Amaya's appointments on Monday. Hooray! 

I got a call from Dr.Nelson's office saying that there wasn't a resident to see us on Monday when we have her appointment scheduled. Dr. Nelson will be in Haiti. That is Amaya's last day of turning her rod, and the resident was going to lock the bar in place. When I mentioned that the woman  said she'd get back to me. I'm still waiting for her call. I was a bit stressed, but Josh said to "breath, boo, breathe."

Amaya got off the couch, but slipped and fell, landing on her hands. It didn't hurt her leg, but startled her.

We had errands to run for Amaya's school. Amaya was in a lot of pain and cried almost the entire time (about an hour). It was quite stressful, and sad.

On our way to therapy Lidie had to go potty, bad. 

When we got to therapy Lidie was running to go potty and fell, ouch!

Before therapy we played on the playground for ten minutes. I had Dad call Amaya to remind her to stay calm, be kind, and work hard. 

At therapy,

Melissa massaged her knee. She said pain is normal at the end (her muscles are at the end of their limits and they hurt). The bones usually reach their limits at 8cm, I asked Melissa if 8cm is the muscles limit as well. She said that usually 6 or 7 cm is the most she's seen, that's where most muscles stop, but Amaya's flexibility and hard work has helped her reach 8cm.
After therapy Amaya was worn out. We skipped our other appointment, and errands and went straight home. Both girls napped on the ride home.
At home Amaya got a call from Darth Vader (aka dad). But she totally believes it was the real Darth Vader. They talked for several minutes and she had the biggest smile on her face! He told her he reads her blog, knows how hard she's working, reminded her to be nice and worked hard. He asked to talk to Lidie but she refused. I over heard her explain to him that she has to work hard to get to 90 degrees everyday, but that she'll be back in the 100's soon. She also told him that she's almost done lengthening. I asked her where he lives and she said, "in a galaxy." She went on, "He said I definitely have the force and I can do everything!" Just the motivation she needed.
I wrote Dr.Nelson an email at one in the morning (I was up with Amaya) asking about her top pins, and the confusion with her appointment on Monday. He wrote back this morning and we're going to try to see him after therapy and in between his surgeries today.  

At therapy Lidie played with a bus, house and little people.

Amaya rode the bi-scooter after massages.

After the bi-scooter Amaya did ten knee bends (standing to sitting) and held each bend to a count of ten.

     Today when we started started measuring Amaya's knee measured at 60(that's the highest its been at in weeks). Then she quickly got up to 70,80,86. Those last four degrees were hard to get to. She got up to 89, then 90! She was tired, sore and crying. After reaching 90 degrees, another therapist Jay offered Amaya his ice pop as a reward for working so hard. It's nice to have so many therapists on Amaya's side. Even though they don't directly work with her many give her high-fives, wave, encourage her and cheer her on. 

I looked at Amaya's top pin sites since they were bothering her so much. The scar tissue next to the top and middle pin are bubbly.

Here's a photo of the top of Amaya's fixator now. There's only a small space left to fill. When she's done lengthening the top and bottom piece will be flush.