Zoo and cousins

     After a good night Amaya woke up with pain in her foot. I massaged it then it felt better. When I mentioned it to Melissa at therapy she said it made sense because of how much she moves and rolls over on her ankle. Her ankles seem kind of loose and weak. On the drive down we saw an eagle gliding over the lake; what a beautiful way to start the day!

   As we got to therapy a man started talking to Amaya about her fixator. He said he had the round halo kind a few years ago. He said, "its tough, hang in there, it'll get easier, stay strong, you'll do fine." Then he added, "make sure you clean your pin sites. I din't and I got a bad infection." We thanked him for his kind words and advice then went to sit and wait for Melissa. Since Amaya didn't wear her weight in the car she wore it on the way into therapy and in the lobby. When Melissa saw it she said, "oh, good job. You look like your ready to reach some big numbers today." Amaya got new tape today and complained that her middle pins were itchy. Amaya asked if she could start by riding the scooter, but Melissa likes the bike better (Amaya gets a better bend that way) so she had her ride the bike first. She knocked over ten bowling pins then rode around the trampoline five times. Then she got to bowl with the scooter as well.  As we started to do the bends her knee measured at 48, but with a scoot she got her knee to 60 degrees. Amaya's goal for today was 105, so far this week 104 was her highest number. In a little over four minutes she was able to get to her goal! 105! It was very hard work, but she did it. The first pulls are the easiest but as she goes along they get harder as her knee gets stiffer. Melissa said that its amazing that she's even in the hundreds at all. Even starting at 60 thats a 45 degree gain, which is very impressive. Melissa didn't say anything about taking any days off next week, but with the holiday on Wednesday we only have four sessions scheduled for next week. On the way out to the car Amaya complained of hip pain, so I had her stand and stretch it before she got it so that she would be comfortable on our ride to the zoo. 

    We went to the Orange County Zoo with her two cousins and aunt. The zoo was a small, nice and located at a great park that kept the kids busy for hours. After exploring the zoo they played by the lake, climbed trees and just had fun. It was a nice day with family. While they played Amaya's aunt commented on how well she was doing. I agreed, but couldn't help thinking of all that Amaya still struggles to do, is working toward and all that's ahead. It's a hard balance between optimism and realism. I'm so happy for how well Amaya is doing, yet have to remember all that we still have to work toward. There's no taking it easy, not yet at least (no skipping PT, no skipping showers or gauze changing, or PT homework, or extra stretches, or doctor appointments, etc.). But, Amaya's progress keeps me motivated and going.

Lidie went to see the "doctor" (aka. Amaya) yesterday morning who decided she needed a fixator so here's what she got.

Here she is ready to knock over some bowling pins.

Melissa had Amaya place her leg on the roll and lean forward to bend her knee. Amaya grimaced a few times, because she could feel the pull quite a bit. This is the first time we use the roll to bend her knee.

Then she tried sitting back onto the roll to throw balls. Melissa has Amaya hold the bend for thirty seconds, but since Amaya is busy throwing balls she's distracted and doesn't realize how long its for. She was reaching for a bright yellow ball and I got it for her, but instead of handing it to her I put it in the ball pit for her to reach for it. Then Amaya told Melissa, "My mom always makes me work." Melissa said, "yeah because she wants your knee to bend." I said, "Of course, because I love you." And I will do everything to help her leg be the best it can be, so that she can be the best she can be.

The girls picked "creepy" eye patches from the goodie box after therapy. Amaya said she wanted to "scare her friends." 

The girls with their cousins Myhkiah and Kailei at the zoo. It was hard getting a picture of all four facing the same direction.

As we explored the park they started climbing trees and had a blast. I was a bit nervous watching Amaya but she did good. She only climbed up as far as she could get herself up. 

Then they tried hanging from the branches. What a monkey!

Here's a silly picture of Amaya from last week that I forgot to post. This girl definitely has personality.

Putting faces to the numbers

     Another good night and a good morning. After being up a few hours he said her hip hurt so we did her stretches and I gave her a hot pad. That seemed to do the trick, and she didn't need any pain meds. We didn't have therapy today until one so we enjoyed a calm morning at home. The girls played, dad slept in and I got caught up on chores and reading my book. I also re-ordered more gauze, tape and gauze rolls. I wasn't sure how much to order because I know we'd be going thru more as she got wet at the beach and at swimming class. Our last order lasted us about three months.  On the way to therapy we ran into some construction; our exit was closed and then there was traffic on the street and street construction as well. Thankfully I give us a "cushion" of fifteen minutes for days like these and we made it to therapy with five minutes to spare. As we walked in the receptionist was on the phone and just smiled at me, mouthed "I'll let her know you're here" then handed us our form. It feels so funny to be  known by face around there. When I walked by the scheduling office I looked in and waved at our friends in there. 

     Today I had a dentist appointment and had to leave twenty minutes into her session. I felt so strange leaving and not staying for the entire time. But, I knew that she could handle it with dad and Melissa. I wouldn't have done it during the lengthening, but now that things are a bit easier I felt okay leaving her with dad. Although I could have gone straight to the dentist and skipped those twenty minutes, it just wasn't something that I wanted to do. Even though it can be a pain to go to therapy every day I enjoy being there for Amaya and seeing her accomplish so much, and helping her reach her goals.

     After my dentist I ran into the grocery store real quick and ran into an old friend. She said that she reads our blog occasionally and is inspired by Amaya and thinks Lidie is pretty funny. She was hoping I had the girls with me so she could see them, but they were with dad.  Later at the mall I ran into an old coworker who also asked about the girls. She got to see them walking into the playground and said how well they were doing. It's nice putting a face to the people who read our blog. I usually just see a count of how many people read on a daily basis, which is encouraging. But its far more personal actually knowing who these people are. I know that some are friends, family, acquaintances and some are friends we haven't met yet, many live in countries all around the world. Whomever you are, thank you for reading along, for your time, your love, encouragement and support. It's nice that so many enjoy hearing about Amaya and our daily adventures.

Amaya found some sand on the bottom of  her fixator (it has so many little groves where it can hide). She decided to bang the fixator with a baseball to loosen the sand. It looked painful, but she said it didn't hurt her. So of course then Lidie asked, "can I do it too, Amaya?" I said no, since I didn't want any injuries so early in the morning. The rest of the sand came out in her shower tonight.

At therapy Amaya started by riding the bi-scooter.

Then she rode the bike. She rode it completely around the peds and adult gym. This is the longest she's ridden it with her fixator on. 

 

Lidie followed along. After the bike she bowled on the bike. She really enjoys bowling on the bike, so Melissa had her earn it, by riding the bike first. 

Look at that smile! Even after a long bike ride she can still put on a big smile.

 

Dad sent me this picture of her doing her bends. It doesn't look too exciting, but at least it gives you a visual of how she bends. She uses that blue bench to pull herself down, uses her body weight to pull her bottom down, lunges on her right leg and bends the left. Since I wasn't there I have no details about it other than that she hit 102!

She got to do a celebratory swing into the ball pit. 

While I was at the dentist dad took them to Chuck E. Cheese to finish the tokens we had saved up. Dad said she climbed onto the horse all by herself. 

Amaya decided to climb up the indoor playground. Dad said she started up there before he had a chance to stop her, but he figured she knows her body and her limits better than anyone. She did great.

They made it to the top!

What a creepy face! I can't tell if she's scared or being silly or both.

Dad sent me this picture. I love how silly Amaya is. Dad's text said, "Amaya thinks she's hilarious...just like her mama!" I think its pretty hilarious.

I met them at the mall with the indoor playground where the girls played for quite some time. I caught this picture of Amaya climbing off the side of the slide. She did so well maneuvering around the playground.

Beach trip

     Amaya had another good night and good day. We left her wheelchair at home today to make room in the trunk for some beach stuff. So at the chiropractor and at therapy she either walked with her walker or alone. When we checked in at therapy the lady asked, "name?" but as she looked up she smiled, then said, "oh, never mind. I know you, you come here every day." I smiled back and said, "yes, yes we do." I can't believe we've been going there for four months now, Monday thru Friday. After Amaya's work we started bends. Her knee was at 56 to start. Amaya had a goal of 106 for today, but her knee was really tight today and after five minutes she was only able to get 100 degrees (which is still really good). Melissa said that she could tell her knee was a bit tight today (who knows why, each day is different). Melissa was happy with the 100 and was proud of Amaya for working so hard. 

Amaya started by walking on the balance beam forward then backward. Then she stepped over the balance beam. 

Melissa had her try to climb up the ladder. She only had her go up the first two steps then back down. She needed some spotting and help moving her leg and bending her knee. But, considering that this was her first time trying it she did pretty good. On the last step down Melissa had her do ten lunges on the last step.

Then Amaya did some bends with the band. She straightened and bent her knee. Those are the same stretches we do at home.

While Amaya worked Lidie built a zoo. She's built one everyday and is having lots of fun doing it. Today I got to play with her a bit. She told me that she had a wheelchair at her zoo for people who need it. Today the pig needed it because he "got hurt, but don't worry he doesn't need surgery. He'll get better."

Next Melissa gave Amaya a choice, "bike or train?" Amaya choose train. When she first got on she went really fast, but Melissa had to stop her because she was pushing with her hip instead of bending her knee and pushing with it. Then Amaya moved a bit slower she was able to concentrate on bending the knee more. 

This picture is a bit blurry, but I love the determined look in Amaya's eyes. She was tired by the time she was done and needed some water.

After therapy we headed down to the beach. We've been wanting to go for some time now and since Josh had the week off we figured we'd go. We'll be going beach camping in a couple of weeks with family friends and we wanted to test and see how Amaya would do at the beach. Would she be able to swim? How do we keep the sand out of the pins? How will we clean it? etc.. As soon as we set our stuff off they were off. They had big plans of building sand castles. We only planned on being there for a little bit so we didn't bring our suits; which worked out well because it was a bit on the chilly side and the waves were pretty rough so Amaya wouldn't have been able to swim in them anyway, or Lidie for that matter. 

Although the plan was to not get wet, they all managed to get wet. Thankfully I had enough foresight to prepare for that and had extra clothes. Amaya had so much fun jumping in the waves and was out there for about half an hour. She didn't fall once, which I was a bit worried about. Although as she was building a sandcastle she did fall once. And yes, she did get plenty of stares, but mostly of wonder and amazement at what she was doing, which didn't bother me too much.

She had lots of fun playing in the sand. Notice the sweater, she was cold and had to put it on. 

As for wondering how to keep sand out of the pins and off the gauze? You don't. At least we didn't. If anyone knows how we'd love to hear it. I had asked other PFFD families for any tips, but didn't get any for sand only pool swimming. So we're just figuring it out as we go along.

This was before she decided to lay on her tummy and play. I just smiled, but was screaming "ah!" in my head wondering how in the heck I was suppose to clean that off. We rinsed her fixator off with ocean water then changed her clothes and left the gauze on. At home we showered her off like normal and it got all the sand off. There were a couple of small sand grains in her middle pins, but they came off with a q-tip, soap and water. Thankfully when we go beach camping they have a shower there. Melissa told us that the good thing is that her pins are still draining so that'll help get any sand out that gets in. Also she suggested using a syringe type thing to wash out the pin sites. Dr.Nelson had told us that swimming in the ocean was good for her pin sites, but we forgot to ask him about the sand. He said that people who swim in the ocean everyday have less pin site infections.

Dad and Lidie got some one on one time as Amaya played on/in/with the sand.

Josh managed to get a picture of his and Lidie's footprints just as a wave was coming to wash it away.

As Josh and I sat and watched the girls play Josh said, "look how comfy she looks." I smiled, she did look so comfy and was able to just be a kid and have fun. 

Here's a close up of the girls busy playing. You can see Amaya laying on her tummy playing. We had a great day. The girls were worn out, but managed to stay awake the entire drive home. Unlike myself who slept for about an hour. It seems that I'm always getting either poor sleep, no sleep or interrupted sleep and I feel like I've been tired for four months straight. Well it's almost midnight so I better go to bed, because I'm sure I'll be tired tomorrow morning. Good night and once again, thank you for your love and support.

Good way to start the day

      Even though Amaya's knee was hurting when she went to bed last night she was able to sleep throughout the night and had a good day. We only gave her pain meds before therapy and at bedtime. This morning I woke up to a very nice email from Dr. Nelson thanking me for my last email and telling me how proud of Amaya he is. He also gave us the link to the blog he had when he was in the Dominican Republic for five and a half years and that he still updates when he returns every few months to Haiti (for mission work). The link to his blog is curecaribe.blogspot.com if your interested in checking it out. It was neat to go back and read about his experiences there, and why he chose to come to Loma Linda when he did. We are so fortunate to have his expertise here so locally. I'm so grateful for a surgeon who not only provides Amaya with excellent care, but who genuinely cares about her. Amaya enjoyed hearing from him and that he was proud of her. Tonight she didn't have any pain at bedtime and has been sleeping well. Josh has this week off and has been able to go to therapy each day with us (which the girls love). 

Amaya hasn't worked on this machine since her last surgery (her super knee in 2011). She had therapy for a few months after that surgery, but it wasn't as challenging as it has been this time around. Today she walked forward and backward five times. Each time she was pulling a 20 lb. weight. She did really well at it, and looked like Rocky to me, which she thought was cool.

Amaya worked on the total gym machine today. Melissa had her not only bending her knees, but straightening her legs completely as well. Both were a stretch and a workout for Amaya. Straightening is still a bit tough so we're continuing our stretches at home.

This is what Amaya's knee looks like now when its fully rested, its got some bend to it (more than a few weeks ago, but still doesn't fully bend on its own). Melissa did some stretches with Amaya while she sat on the drum.

Here's Amaya doing those stretches. 

When Amaya went on the step to start her lunges, bends and knee bends she lost her balance and fell. Thankfully she rolled onto her back and didn't get hurt. Melissa was right next to her the whole time and tried to catch her. Ay-ay yay! That girl always keeps me on my toes; each fall scares me. She recovered quickly then went about the rest of her session without any complaints.

Amaya walked on the balance beam for the first time in a long time. I was quite surprised that she didn't fall at all. She walked forward and backward twice and didn't slip once.  

      Melissa was measuring Amaya's knee before we started bends. Her knee was at 49. Amaya had guessed 48, and I said somewhere between 48 and 52. We're both getting good at guessing what degrees her knee is bent to. Then she made a small scoot and was able to get up to 60 degrees. This is when I took the picture, as she scooted. You can tell by her face that it's a bit uncomfortable/borderline painful. After that she started her bends. She asked us to time her so I set the stopwatch on my phone. It took her three minutes and thirty seconds to get to 104 (that was her goal for today). That's great, especially since Melissa could tell that Amaya's knee was getting stiff toward the end of the bends. I'm so relieved that its only three minutes. A few weeks ago we spent almost half an hour everyday trying to get to ninety. It was tough, and I'm so glad that those days are behind us. Since Amaya is able to bend her knee in less time, that gives us more time to do more stretches with Melissa than before. Amaya has forty five minute sessions for therapy and now she's able to spend most of that time working on different things instead of bending.

Afterward Amaya swung into the ball pit to celebrate.

And of course Lidie did  too!

Three weeks post lengthening

      This morning I called Dr.Nelson's office, again, and after thirty minutes I finally got Amaya's next appointment scheduled. What a relief! The woman on the line today was so helpful and kind. She double checked that Amaya's referral was entered correctly so that we don't have any problems scheduling her next appointments (Marilou made the referrals for the next four visits & x-rays). We're suppose to see him on Monday, but he's overbooked by ten appointments that day, so she suggested waiting one week, when he's only fully booked for the day, but not overbooked. I figured since its only her first follow up after she stopped lengthening one week wouldn't be a big deal. We'll still have a long wait that day, but we'll deal with it. I can't imagine what a day is like for him, seeing so many patients. But, when your good there's a high demand to see you. I'm just so thankful that Amaya is under his care.

     At therapy Amaya's knee was at 42 degrees to start, which isn't too bad for a Monday. I had her wear her ankle weight the whole way over to therapy and that helped stretch the knee a bit. After all the work today Melissa measured Amaya's knee. It was at 52, but with a slight nudge she got 56, then 60. That was before we even started bends, nice! Amaya's goal was 103 (two more than Friday's number). Which is a good goal, but it was Monday and we didn't do a lot of knee bends over the weekend (just swimming and hip stretches) so I was curious to see what Amaya would get. She did her pulls and bends in sets of fifteen again then moving her leg back. She worked hard and quickly but I could tell that she was in a bit more pain and struggling more than Friday (after a weekend it was expected). But she kept going then Melissa asked, "okay, how much further do you want to go? You've got it." Amaya said, "that's enough." She had gotten 103 in less than five minutes. She wants me to time her tomorrow so she knows exactly how long it takes her. I was once again, surprised and happy. Melissa said that if Amaya continues to hit 100 or more each day this week, then we'll cancel two appointments for next week and see how she does with just three sessions a week. If she does fine with that then we can drop down to three sessions a week. Amaya said she wants to try to hit 110 by the end of the week. Melissa smiled and said, "I don't doubt it!" Today is exactly three weeks since we stopped lengthening Amaya's leg. I'm amazed how quickly she has bounced back from her tight days. She had some days when she struggled to hit 90 and some when she was in the 80's and some 70's. Each child is different, but from most blogs that I've read, most weren't able to stay in the 90's as long as Amaya did or get back up so quickly. So hitting the 100's so quickly isn't the norm (just so that other parents know to not expect that). Even though she's been able to get high numbers she still has many tight muscles in her leg that make walking, swimming, stepping over things, walking up stairs, kicking, riding a bike, walking long distances, etc. a challenge. She's working so hard and accomplishing so much. 

     Later in the afternoon we dropped off dad at the dentist and went to get some frozen yogurt. The woman there asked Amaya about her fixator and told us about her car accident where she broke twenty seven bones. Wow, I can't even imagine that. She offered Amaya some praise and support and was very kind. Later at the dentist office we had two women talk to us about the fixator (it really is nicer when they talk to you instead of just stare). One woman couldn't believe that Amaya swam with her fixator on. She was so confused by that, and I couldn't really explain "how"Amaya did it other than to say that she just figured it out. She asked if we took it off to do things, and I said that no it stays on for about ten months total. Again, she was confused and shocked that Amaya would have to wear it for so long. I tried to explain things as best as I could. Later I smiled, because what's normal for us now was so foreign to us a few months ago. As I'm sure it is to any future lengtheners out there. You can't imagine what it will be like, until it happens. Hopefully our blog helps give you some insight as to what it might be like (each case and each child is so different so things will vary). But, we wish you luck and if you have any questions please feel free to email me, my email is on top of the blog. 

     When I put Amaya to bed I noticed that its hurting her to lock the bar in at night; her muscles are still so tight. As bending becomes easier then straightening becomes more difficult.  So I started stretching her leg before bed, in addition to her hip bends. Amaya asked when we can stop locking the bar in at night, but I reminded her what its for and that once Dr.Nelson says we don't need it we can stop. She's hoping it won't be until the fixator comes off, but I'm not sure so I don't promise anything. I gave her, her pain meds (only the second dose all day) then squeezed her knee because it was hurting her so much. Thanks again for reading and following along. 

       This morning Amaya and Lidie were talking on the couch. Lidie was touching Amaya's fixator and asked her, "when do you get to take your pins out?" I gave my standard answer, "Dr.Nelson decides when they come out and he'll do it." But then Amaya added, "I'll do it." I had a quick vision of her trying to unscrew them, but then she went on, "When I'm an orthopedic surgeon I'll know how. Then I'll show you guys how." I had to smile at that. 

Amaya did four knee bends before she got to kick the ball. She tried to get it up the ramp. She still has a hard time getting her knee to bend back enough to create enough strength to kick hard so it never made it up, but she got close. 

Then Melissa had her sit onto the ball while bending her knee. Melissa had to hold her foot down because it kept moving and Amaya would loose her bend. After that Melissa gave Amaya another chance to try to kick the ball up the ramp, but even though she was closer it still didn't go up. 

Here she is trying to kick it up the ramp.

Amaya leaning forward to pick up a ball to throw at Savannah. She stepped off the step and then also lunged forward. During these stretches you can hear laughs from Melissa and Amaya, which always warms my heart. I'm glad that even though therapy is tough and work, it is also enjoyable and fun for Amaya. I'm grateful for the time and energy Melissa puts into caring for Amaya and keeping therapy fun, new and challenging.

She rode the bike for a bit to bowl. 

     Melissa taught Amaya a new stretch today. She would bend Amaya's knee then have Amaya lift up and lower her hip. Then Melissa would bend the knee a bit more then Amaya would left her hip again a few more times. They did that about five times. I noticed tonight when I put Amaya to bed and we did her hip stretches that her hip isn't as tight as we stretch it. It's nice to see the exercises working. Amaya asked, "can we stop doing them now that they worked?" But I explained that you have to keep doing them for them to keep working, so she did them.

Weekend Update

Friday
     Spent another half an hour on the phone trying to get Amaya's next appointment with Dr.Nelson scheduled, were supposed to see him next week, but her authorization hasn't been entered so we still have to wait. Marilou did her side of it two weeks ago, but we still need Loma Linda to do theirs. It's so frustrating trying to get things done, when you're a bit powerless to do anything.
     In the lobby at therapy a girl, maybe six or seven, walked by Amaya staring then said, "ewe." I said, "that's not very nice." But her and her dad said and did nothing. Amaya heard her and didn't understand why the girls said that, I don't either.
At therapy...
      Melissa put new tape on Amaya's knee. Her knee was hurting the night before so I'm glad she did. Amaya rode the bike. Melissa asked Amaya if she wanted to use the total gym. Amaya said no at first, but when we let her know that it helps her knee bend and reach her goals (her goal was 100). She agreed to do it. She did a lot of bends there then we started knee bends. Her starting measurement was 56, but with a small scoot she got 64, then 73. After 45 pulls she was at 99, then Melissa asked her to do two bigs pulls/bends hoping that she'd reach her goal of 100, but she got 101! We were all so happy and impressed! Melissa did hip stretches so that Amaya's hip wouldn't bother her on the long car ride to Phoenix. Melissa asked Amaya to walk out, to help her hip, so she pushed Melissa out.
     Amaya did great on the car ride to Phoenix, just minimal hip pain and numb toes. It was the longest car ride she's been in with her fixator on. We got there in time for a swim. This was Amaya's first time in the pool with her fixator. She loved it, but was hesitant to swim alone.

 

Amaya got a good bend on the total gym machine. 

Here she is giving Melissa a ride out. They got lots of smiles and giggles from the other therapists.

First time in the pool.

She wasn't quite ready to swim on her own, so she "rode on a polar bear." 

Saturday
  Amaya went swimming twice. She started swimming in the morning, and got the hang of it quick. Even though she knew how to swim, she had to learn how to swim with a fixator weighing her down. She tried to kick the left leg, but it didn't seem to move much. Her gauze came off after being in the water for a few minutes. As she swam across to dad she would say, "again daddy!" She said it was easy swimming with the fixator on. We had to wash her pins sites after each swim and reapply gauze. Her pain was under control all day and she didn't need any pain meds. She swam again in the evening and was tired. After she was in bed for awhile we realized that we forgot to lock her bar in and wrap her ankle in a towel (the first time in four months). Her knee was so bent and I hated to bother her, but I knew that since it was bent it needed to be straightened for the night. She moaned out in pain, which was sad.

At first she had dad spot her as she swam.

First solo swim!

Thankfully, they had a chair we could use in the shower to bathe Amaya. 

Here's what her pin sites looked like after swiming. do't they look great? Dr.Nelson told us that swimming in a pool and in the ocean is great for pin sites and helps fight infection. The only thing they don't recommend is swimming in lakes or rivers because of bacteria.

Josh and the girls sharing videos with Aunt Patty and cousin Alexis.

During a game of hide-and seek they had a hard time finding Amaya. She managed to squeeze herself under that table.

Sunday

     In the morning as Amaya got in the pool one of her gauze stuck in her middle pins. It took about five to ten minutes for it to come loose. It was weird because there wasn't any scab for the gauze to stick to. The gauze got pushed in between the skin and the pin. As it pulled it started to bleed a little. We started pushing water on it, like little waves, which helped it come off. By Sunday we could see a big improvement in Amaya's swimming, she was swimming across the pool often. She did more swimming before we left in the evening. She did great on the car ride home, she was so tired she slept most of the way. She woke up just before we got home with some knee pain, but did fine once I massaged it. All in all we had a great trip visiting the Campbell's. It's always nice visiting family when you can have some calm relaxing time. It was nice to visit, and we hope to return again this Summer when we can stay longer (we had to return for therapy today). I did miss blogging these past couple of days and kept feeling like I was forgetting something.

Cuddling on the couch.

By the time we left Amaya was swimming the length of the pool, under and above water. She did great! It'll be nice when she starts her lessons next month so that she can work on her breathing. By then her left knee should have more bend to it and she'll be able to use it to kick with.