First thing

    Today we had physical therapy first thing in the morning. It’s challenging to do it early because Amaya wakes up feeling stiff and achy. She had a tough time sleeping throughout the night and was especially tired. Even though it was a restless night Amaya still says she’s seen a big improvement in how she’s feeling, her ability to manage pain and to get comfortable. Since we stopped lengthening she said she’s noticed a huge improvement! That's such a relief! 

    Today at physical therapy we realized we only have four more sessions left from the original order put in. The physical therapist recommended Amaya continue to be seen and stated once or twice week would work. But she said that it’s important that Amaya learn how to use her new leg correctly. She said regaining her range of motion is the first step then it’s important to regain strength. She said that once Amaya can bear weight she’ll need to regain balance and make sure she distributes weight on her pelvis well. 

    The therapist was so happy with how Amaya is progressing. She said she can tell that we’ve been doing her physical therapy homework. At first measurement Amaya's knee was at 102 degrees to start! By the end she was able to get her knee to 107 degrees! 

    The therapist was thrilled with her hard work and praised her often saying, “You're such a tough girl.” She encouraged her to keep at it and not quit! She also encouraged us to continue to massage the scars to prevent the scar tissue from attaching to muscles. 

Look at that bend! 

Officially Done!

     Yesterday I eagerly waited for Dr. Nelson's reply to my email. I wish I could say I was patient, but, well let's just say I tried to be patient. It's hard waiting for medical news. I tried many things to distract myself. Thank goodness for good friends! Even though I assumed things were good I wouldn't believe it until I heard it directly from Dr. Nelson. When I woke up I saw Dr. Nelson had responded. I know he's incredibly busy so I'm grateful he replied so quickly! He said the x-rays looked great! However, the way they took the x-ray of the pelvic bone made it impossible for him to get a "precise measurement." So he asked some follow-up questions and asked for a line to be drawn on top of the femoral heads. Our radiology tech here said they don't do that and that it is done by a "surgeon." I've seen him do it many times so I gave it a try. I sent the new images back to Dr. Nelson as well as all the details of our lengthening. He had also asked how the leg felt to Amaya, she said it felt good and as even as possible (she's not fully able to straighten her left knee to stand). 

    When he responded he said that the femoral head on the left was just a few mm below the right one, but her bent knee would explain that. He also said, "I think she did a great job and no more lengthening necessary." Wow, I was moved with emotion as I read that! When we saw him in October he said we'd need to lengthen about 2 cm (.78 inches) we ended up doing 2.014 cm (.79 inches). That's pretty darn close to what we needed! It's amazing! This lengthening journey, that we began when she was five years old is now over (mostly). What a huge accomplishment and milestone in her life! I am joyful, grateful and proud. All in all she grew 10.1 cm (3.99 inches) of new bone! We didn't lengthen yesterday and she had a good nights sleep, "the best in a long time." She's earned a good night's rest. 

    Physical therapy was challenging today. Her knee measured 90 degrees when we started and the therapist made the goal of 100 degrees for today's session. Amaya worked very hard, with grunts and whimpers of pain she didn't give up. The therapist was impressed and said Amaya was "tougher than most her other patients." She cautioned Amaya to not push too hard; where she experiences debilitating pain or struggles to sleep. In thirty minutes the therapist had Amaya "push, pull, relax and repeat." That sounds so easy, but I watched in amazement as Amaya worked hard. She felt pain in the front and side of her knee. The therapist said that what she's feeling is the actual "stretching" of the muscles. When Amaya would gain some degrees the therapist would hold it for her for a full minute. The therapist said that that's where the stretching happens. Amaya was not only able to get a 100 degrees today, but she surpassed it! She ended her session with 103 degrees! The therapist was so happy that Amaya gained five degrees in two days! In a little over two weeks she went from 57 degrees to 103! I'm so proud of Amaya's efforts! Thankfully the rest of the day her pain has been manageable; we've been icing her knee and using over the counter Tylenol every six hours. 

My attempt at drawing a line from the top of one femoral head to the other. It was good enough for Dr. Nelson to measure. 

While I was looking at her pelvic x-ray I noticed this dark line on the top of the bone on the right side. 

I have no idea what it is, but it looks like a small break to me. I sent it to Dr. Nelson to get his opinion. He said its her growth plate and "totally normal." It's such a relief to hear that! 

You can see a muscle tighten as she bent it.

Laying down and doing knee bends.

Holding a knee bend.

I tried to capture Amaya's face as she powered through the pain.

Busy day

     Today marks many things, it’s four weeks post surgery, the nineteenth and final day of lengthening (pending Dr. Nelson’s approval once he sees her x-rays), it’s 2/22/22, and a busy day of appointments. We started the day with physical therapy then had a check in with Amaya’s pediatrician then got new x-rays. Since it’s the last day of lengthening we’re getting x-rays of the femur as well as a one of her pelvis, this allows Dr. Nelson to measure the growth of the femur.

    Physical therapy was intense but great! When we started the therapist told Amaya she had a goal of getting her to 95 degrees today. Amaya worked hard, really hard, and was able to get her knee to 98 degrees! That’s huge! We maintained her range over the weekend and in the half hour we were there Amaya got from 90 to 98 degrees. It’s amazing how much can get packed into a thirty minute session. The therapist massaged above Amaya's knee and noticed the skin was tight. She said the scar tissue is wanting to attach to the muscles. We don’t want that to happen so she told us we should massage it. She showed us how to massage it in a way that will help separate it but not damage the incision. She suggested we do it three times a day and once the scab fully falls off (should be any day now) then we can massage vitamin E oil onto it. The therapist was happy with how Amaya’s been doing and encouraged her “you’re getting there. It’s just a hard road.” That it is.

    We saw Amaya's pediatrician who wanted to check in on her since Dr. Nelson is so far way. She's also the one ordering the x-ray orders to our local hospital. I appreciate her care, concern and desire to check in on Amaya and not just submit orders. She was impressed with how well Amaya is doing. We showed her the most current x-rays and explained how the Precise device works. She was impressed by the process. 

    When we went back for x-rays we had the same x-ray tech as last time. He wondered why we needed x-rays again and when we explained the lengthening she's undergoing he and his trainee were fascinated. They've never seen "that kind of technology" before. We've got our x-rays and have emailed them to Dr. Nelson. I am nervous, worried and excited waiting to hear back. 

    As we did our last lengthening tonight Amaya said, "Wow can you believe this is our last lengthening, like ever?!" This could be it. The end of a very long journey. We did her first lengthening when she was six and now at sixteen she's done her second and final one. All in all this would be a total of 3.99 inches of new bone! I'm amazed and grateful!

Massaging the scar so the scar tissue doesn't attach to the muscles.

Measuring the knee at 98!

Pelvic X-rays, the first time Amaya stood up on both legs. 

Dr. Nelson said it was ok for her to stand for this. 

Side view of her femur

View from straight down at top of femur

Top of femur and hip

The bottom of her femur and the entire rod. 

You can see how much we've lengthened; 20.14 mm  or .79 inch. Its amazing! 

Look at her pelvis and the top of her femurs.

Chiropractor

    To help with manage some of her pain we decided to visit our chiropractor. He's a long time family friend and has treated us over the years. He also treated Amaya when she underwent her last lengthening. She remembered it helped with pain management so we booked an appointment. We'll see him twice this week and hope that helps.

Amaya waiting to get an adjustment. 

She pointed out how easily her left leg bent-pretty close to 90 degrees, and with little to no effort!

Getting a laser treatment to help alleviate the nerve pain. 

Her eyes tell you she was not in the mood to pose. 

Other news...

• Amaya has been keeping with up her physical therapy homework.On the days she's in lots of pain we break up the exercises or do half the amount but don't skip any. We're doing them twice a day. She's got about thirty different exercises to do, most are 2 sets of 10 or 2 sets of 20.
• Tomorrow 2/22/22 is our last scheduled day of lengthening! Eek! We'll get x-rays and have Dr. Nelson look them over to confirm if we're done or not. Once she's done then her pain should begin to minimize and her strength return. 
• Amaya says she notices a huge change in her leg! She says she can tell the shape and direction of it are changed. She notices her knee feels different and that the muscles around it have shifted. She can also tell her leg is longer. Today she mentioned that it's pretty obvious how much her leg has grown. She says she feels it and especially in her hips. She says it kinda weird and amazing at the same time. 
• Some of the emotions Amaya has been dealing with are in response to all the change she's experience from this surgery as well as years of pain and procedures. She's been powering through while also pausing when needed to acknowledge, feel her feelings and vent as needed. 

Taffy and bagels

    The past few days have been a bit rough. Thursday night Amaya was feeling pain all over her leg. It made getting comfortable difficult and falling asleep a challenge. She said, "My skin feels like taffy that’s being stretched." I could easily picture that painful visual. She said her skin felt thin and uncomfortable. She said even me touching it bothered her. It seems that the majority of her pain the past few days is a result of the stretching and growing of her soft tissues. This is what makes lengthening painful, not the actual pulling the bone apart. It's the stretching and growing of skin, nerves, muscles, etc. She was up at about two a.m. and called me in pain. I gave her some pain meds, massaged her hip and knee and put an ice pack under her knee. Thankfully, I got her back to sleep within 30 minutes. 

    Despite the pain she was in Friday morning she decided to go to school. She had a couple of classes and a test she didn't want to miss. She was there the majority of the day but had to go home early because of pain. Friday evening and night she was in a lot of pain as well. The pain got the best of Amaya and she was hard to console. She was overwhelmed with emotions. She was feeling frustration at not being able to get a break from the pain or being able to get comfortable. She felt some desperation that nothing she did felt like it helped. She was also tired and worn out. At one point she said, "this is sixteen years of tired." It was heartbreaking to hear and witness. Like her I felt frustrated that I couldn't remove her pain. Josh and I tag-teamed; one of us massaging her foot and the other her hip or head. She had a hard time falling asleep and was up very early in pain. I went in her room about 5:30 am feeling exhausted but grateful to be able to help. It took a bit to get her calm and her pain managed then she fell back to sleep. I was so tired but couldn't fall back to sleep. 

    Saturday morning we got a surprise visit from friends who swung by for a quick hello and to deliver what they called "just bagels." I assure you, they were not "just bagels." It was thoughtfulness and kindness in action. It was the ray of light I needed after two very long and exhausting nights. The fresh bagels and cream cheese were a nice treat and a reminder that we have love and support from so many. We are so fortunate!  

    Saturday night and Sunday were more of the same. Difficulty falling asleep, interrupted sleep, pain and discomfort. The nights are much worse than the days. We think it's because during the daytime she's got things to distract her, whether school, Cocoa, us, and she's able to move as needed to help. By nightfall she's exhausted from the day's lengthening (growing .99 mm a day), physical therapy and pain. As she lays for long periods of time that bothers her hip and knee. She's tired and doesn't have the same energy to combat negative emotions or to "power through."

Doing some physical therapy exercises on the couch and cuddling with Cocoa

Protection mode

    Last night Amaya's pain began to increase and continued to a very high level. It made getting comfortable, and being able to sleep very difficult, even with all our normal "tricks" that usually work. This morning there was still a lot of pain, and lots of tears. Since she had slept poorly, was in so much pain and had pt later today we decided she should skip school. It made no sense to try to send her since she was not able to control her pain, move around safely let alone focus. After lunch she was in a much better spot; her pain was tolerable but was very tired. 

    The therapist said the pain could be coming from nerves or any of the "structures" (nerves, muscles, ligaments, etc.) that can get compressed during stretches and lengthening. She did some soft and less painful stretches and exercises. It's interesting because Amaya's pain isn't in her knee but on the inside of her calf. The therapist reminded us that everything is connected and that our brain will adapt and use other things to get a motion done. So since Amaya's leg isn't able to move as it should then her brain and body are making it happen even if this is an incorrect and painful way.

    At the beginning of pt the measurement in her knee was 72 degrees. That showed that Amaya's body had gone into what the therapist called "protection mode." Since her body was in so much pain her brain decided to protect her and essentially kept her from hurting herself again (by doing any stretches or bends). There was a "brain block" that prevented the knee from bending. Her brain and body weren't communicating and working together. Our minds and bodies are pretty amazing! 

    With some massages and gentle stretches her knee began to bend. By the time we were done Amaya was able to get her knee to 92 degrees! Amaya and I were a bit worried that wouldn't happen today. Even though we didn't hit the 100 degrees we had hoped for earlier this week, at least she kept her range of motion that she's gained. PT homework will be really important over the upcoming weekend. We will be back at pt next Tuesday (our last day of lengthening!).  

    Keep us in your thoughts and send good wishes for a good night. We're all pretty tired and worn out. 

Straightening and bending the knee

     

At first measurement her knee got to 72 degrees  

More painful knee bends to stretch a bit more and hoping to get to 90 degrees 

Lifting and bending the knee from a sitting position.

After some work her knee got to 90 degrees! 

Compliments

        Last night Amaya did great! We did her pt homework then our nightly routine (tea, massages, pain meds). She played some lullabies as I massaged her leg and foot and was asleep by 10:10. I was so happy she was able to sleep after working hard to get to 90 degrees earlier that day. She woke up tired but her pain was tolerable and she felt good enough to go to school.

    Today at therapy the therapist complimented Amaya on her attitude, effort, and the hard work she's been doing. He told her that often when teenagers come in they complain, roll their eyes, and refuse to do the work. He thanked her for being so pleasant and kind. He told me "you did a good job raising this one." I agree. He also asked about how she's been managing her pain at night with all the hard work she's been doing (and wanted to make sure she isn't overdoing it or in too much pain). I let him know that we have a routine of giving her pain medication, ice packs, massaging her muscles with coconut oil and giving her chamomile tea. He praised our efforts and said, "you two are a great team." He encouraged us to keep up the good work because it makes a big difference long term in how she heals and recovers. It warmed my heart to hear such kind words and to get acknowledgement from a professional. It's starting to feel like things are easing up and we're making some good headway. 

    On the drive home I praised and thanked Amaya for doing so well at physical therapy. She smiled and told me its because she wants to be able to bend her knee again and to be able to walk. She said she wants this badly and she's willing to work hard for it. 

Look at that bend! This was just as she sat down to being pt today

Standing knee bends, then crossing over the right leg to bend at an angle

 (to help street the side muscles as well)

bending toward the outside of the left leg

After standing exercises she did some on her tummy. First she worked to straighten her knee fully, which was a bit uncomfortable. Then the therapist asked Amaya if she could raise her left leg while keeping it straight. She tried but her leg wouldn't move, at all. It was as if her brain and leg weren't communicating. Then he helped move her leg to do nine lifts (see picture below). It was fascinating because then he asked her if she could do one alone and now she was able to. It was so interesting to watch because once he did it with/for her then it showed her brain and leg how to do it and how to communicate to one another. From then on she was able to do it easily. He said this is common and shows the importance of pt; so you don't "forget" how to use different muscles.  

Assisted leg lifts

Then she had to do some clam bends. She finds these to be painful because she's bending her knee while also lifting her hip. So lots of muscles are simultaneously working together. Doing these exercises her muscles began to "tremor." The therapist said it's because her muscles are working so hard right now. He said the more she does the work then the tremors will go away.

While supporting the knee she had to straighten her left leg. He said these are super important to do and we need to add them to the list of daily "must do" exercises.

After her thirty minutes work she easily got her knee to a "legit ninety degrees." With minimal work she was able to get to 92 degrees. He chose to not push her too much more because she has another session tomorrow and doesn't want to overwork her.