It's the rod

   Yesterday I got a call from Dr. Nelson's nurse. She apologized for taking so long to get back to us. She was having trouble with her voicemail. But she got us an appointment to go in and see another doctor this morning. We had an early morning and had to leave by seven thirty to make it in time. I was tired as I was getting the girls snacks and lunches packed that when I went to pour myself a freshly brewed cup of coffee I realized that I had forgotten to put coffee in the machine.
   At the appointment they had new x-rays taken of Amaya's hip and legs. They did the full scan that Dr. Nelson had requested for the next appointment. It was a new machine that took a 3D scan. First we saw a resident and then a doctor. The resident told me that the rod can turn, that it doesn't have a screw in there to hold it in place, and that he didn't see any breaks or fractures by the rod. He said that the rod may be hitting her bones and that would explain the "pop" sensation she's having. Both the resident and the doctor said that the rod has moved. The doctor pointed out that there's a "halo" (a dark shadow next to the rod) at the bottom of her leg. He said that shows the rod has moved. He also pointed out that in the x-rays from January the rod was flush with the top of her femur, but this time it was above it. It looks to be about an inch above it to me. He said that it isn't a major complication and that we shouldn't worry too much. He said that we need to keep an eye on it and follow up in three months. He said that it may continue to move up. He said that when it comes up to the surface it should be removed. But said that when we come in to see Dr. Nelson in July he will decide whether we should keep it in or remove it. He said that if it has to be removed its a pretty easy procedure; they just make a small incision and pull it out. He said that her bone looks so good that he feels it would be able to withstand the removal now. He did a full exam of her legs and said that she has recovered so nicely from her lengthening. He said that the knee pain that she's feeling maybe from the hip; that its sometimes experienced in the knee even though the source is the hip. He said she can continue with her activity because it will continue to strengthen the femur.
    It was reassuring to know it wasn't a big problem, but not very comforting knowing she will continue to deal with the pain. At school today she's already asked for Tylenol and gone in to see Josh because of pain (she's only been there three hours). We had removed the tape on her hip so they could examine her hip and incision well. It seems to help relieve the pain so we will re-tape it this afternoon.
   Thanks again for all your care, concern, advice and help. Its nice knowing we have so many who care about Amaya and our family. Thank you.

Here she is getting her x-ray on the new scanning machine. You can actually see the green line going down doing the scan. 

Here's the full leg x-ray. If you look close you can see the "halo" by the rod. And you can see how well her femur has healed. The 3.1 inches of new bone is healing and filling in "nicely."

Here's a close up of the hip. Here you can see how high up the rod is.

Some progress with her hip

    First of all let me thank you for your care, concern, calls and messages. I really appreciate it. Its nice to know we have so many people out there who care about Amaya and her well being. She's still having some discomfort and pain. She feels her hip "pop" throughout the day; at times when she's running other times when she's sitting and moves. Her hip is sensitive when you push on it, even slightly. She's been sleeping with a pillow under her hip to help with pain, taking children's Tylenol and sleeping with a hot pad. She said she's been waking up when she feels pain and or a "pop." Last night she woke me up twice; once to get her a hot pad and another time to get her some Tylenol for pain. 

   Although she does have some pain and discomfort it isn't all the time. It goes away and she's not allowing it to limit her. She's still playing, swimming, and enjoying life. We talked to her P.E. teacher and she'll sit out for the next few weeks until we hear from her doctor. Also we've decided its best to have her skip her gymnastics class for the next few weeks as well. Better safe than sorry. 

   After many calls and lots of help we finally got an insurance referral in place and an appointment to see her surgeon. Unfortunately it isn't until mid July. That's about six weeks away and a very long time for her to be in pain so I've made some calls to Dr.Nelson's nurse to see if we could see him before then. Currently he is out of the country for two weeks. He travels about four to five times a year to do mission work. He's an amazing surgeon and person and I'm sure he's helping many people wherever he is. We wish him well. 

   I'll be picking up Amaya's x-rays today (the ones we got at urgent care last week) and then emailing Dr. Nelson. He's usually really good about answering us quickly, even while out of the country. Hopefully he can give us some input, advice and let us know what to do in the mean time. Until then we're trying to keep Amaya comfortable and trying not to get too stressed out. This is much easier for Josh than for me. It's hard not to worry and wonder. I find myself looking over all her past x-rays comparing them to the most recent ones and searching all over the Internet looking at other x-rays and reading medical journals trying to get some answers. Today Josh's mom came over before school and taped Amaya's hip and knee hoping that that would give her some pain relief. Hopefully it does. 

   Once again, thank you. 

Amaya sporting her new Goonies shirt while her Grammy tapes her hip. 

Visit to urgent care for her hip

    This morning Amaya and I took a trip to urgent care to see if we could get some answers about her hip pain. Thankfully urgent care wasn't busy and we didn't have a long wait. When we went back in to see the doctor he had never heard of PFFD, which I kind of expected. He was surprised and a bit shocked that Amaya had had a lengthening surgery. Then asked if "she was fixed now." Ugh. He was also amazed to hear that she would be having another lengthening and that it would be with an internal fixator. He asked me how that would work and seemed kind of impressed by it all. At this point I wished we were at Dr. Nelson's. Clearly not all doctors can help with such a specialized condition. When he reviewed the x-rays with us he said that he didn't see any breaks in the hip or femur. He also said that the top of the femur is in place and wasn't dislocated right now. He said the rod was "in place." I asked if it could be loose and if that's what could be causing her pain, but he said "I don't know. I'd have to go in there and see if I could move it to tell you that." His advice was to "follow up with ortho." He didn't look at her hip at all, or touch the area. Even though I told him that she cringes in pain when you touch the area where the top of the rush rod is. 

   So, we got some info: there are no visible breaks or anything. But that's about it. No advice on what to do for pain or discomfort or anything. Just a helpful "follow up with ortho." Wow. I'm clearly frustrated. And sad to know that Amaya's pain and discomfort will continue. As soon as we got home I got on the phone with Dr. Nelson's office and with the referral department. I've been trying to schedule our next follow up with Dr. Nelson for over a month now. They still do not have a referral for Amaya and will not schedule an appointment without one. Ugh. Marilou (our referral coordinator) has been helping us for the past month trying to get one processed and sent over. I finally spoke to a very helpful woman at Loma Linda who gave me her personal email. She said that if I can email her the referral today she will enter it today. She said that they are a week behind processing the faxed referrals and that they received over a thousand on Monday (the most recent day that Amaya's referral was faxed over). I try to be patient and understanding that they have a lot of work to do. But, I'm trying to help my child. And now with her pain there's a bit more urgency to get this appointment scheduled. 

   The good thing is that Amaya's pain isn't debilitating. She's able to deal with it. But part of me wishes she didn't have to just grin and bear it. A big part of me! And who wouldn't? I want that for anyone in pain. I want some help, some resolution. Obviously something is bothering her, something isn't "quite right." I just wish we knew what and how to treat it. 

   Thank you all for your care and concern. The messages and concern mean a lot to us. Thank you. We are also very grateful to our friend Juli who took Lidie with her to her sons tumbling class and let her play with them this morning so that I could focus on Amaya. We're so fortunate to have friends with us on this sometimes difficult journey. 

Amaya waiting for her x-rays to develop.

Cheesy grin.

The doctor was so impressed by Amaya's x-rays and her rod. He said, "Wow, that thing is huge! Have you seen that?" I just smiled and bit my tongue. He printed out three pictures for us to "put in our scrapbook." Here's the front view of today's x-ray. The zipper is from her shorts. They made her lower her pants to her knees.

Here's another angle. With her left knee bent and her leg turned. She said it hurts her hip when she bends her knee.

Here's another look from the side.

This is her x-ray from November. This was the first x-ray we saw after her fixator was removed. Is it just me or does it look like the rod is turned in a different direction. See how the hook part is turned in another direction. Look at today's x-ray front view, the one from November and the one from January. Do you see it too? In todays it also looks like the rod is out of the femur more than before. Well at least that's what it looks like to me. I don't know. After looking at and comparing so many x-rays I get confused. Clearly I'm no Dr. Nelson. 

This is her x-ray from January. The front view on the left and a side view on the right. One thing I noticed for sure was that in the x-rays from today I couldn't see the pin holes in the femur at all. And it was hard to tell where the new bone was. It just looked like a solid bone. You can see the difference when you compare the x-rays. Its crazy to see how much its healed in five months.

Ugh, this hip...

  Okay so I'm trying to be patient and optimistic and just "wait and see" about Amaya's hip, but the unknown and knowing that she's in discomfort bothers me. A lot. Tomorrow morning I'm taking her to urgent care to get an x-ray of her hip. And this is why. Josh noticed at school today that when he touched Amaya's hip she cringed in pain. She doesn't complain on her own of pain, but when you ask her about it she'll let you know. Amaya told Josh that it feels like "the bone is separated" and said that "it kinda feels like the bone in that area is missing." She also said that she can feel it "pop." He asked if it felt good like when you crack your knuckles and get a sense of relief but she said no. Josh said he can feel something under her scar (where the rush rod was inserted). He said it feels like a tendon or muscle. Similar to when you massage someone and you feel a knot in their muscles. She's able to move and run, and play. But she has a very high tolerance for pain and isn't a big complainer. So its hard to know how much its hurting her and affecting her. Josh and Amaya narrowed  down to when the pain started. It was about a week ago, she got bumped on the playground equipment at school. She twisted her ankle and hip and fell down. Then the next day is when she first heard and felt her hip "pop." It did it again the next day. 

   After Josh and I talked we decided that I should call Melissa and see what she thought about it all and if she had any input and or advice. Melissa was kind enough to let us know that if we ever needed anything to feel free to contact her. We're so fortunate to have her in our lives. Melissa returned my call and I explained everything to her. She said that its pretty hard to dislocate your hip, but that its possible she over extended it (not the exact words she used). I reminded her that Amaya's hip use to dislocate before her hip osteotomy last March, but that this was the first time its happened since. She asked if there was any pain associated with the first "pop"and Amaya said "yeah, a lot." Not what I wanted to hear. Melissa suggested that we go get her an x-ray to see if the hip and area are structurally sound. If so then she suggested we focus our therapy on range of motion and building up the area, and massaging it. If not, well then we'll contact Dr. Nelson and see what he thinks and suggests.

    At this point I don't know if its her actual hip, her femur, the rush rod, or something else that's bothering her. I guess we'll find out tomorrow. Wish us luck. And thanks for your care and support. 

   When we did our therapy tonight I asked Amaya what her pain level was with the different exercises. Some were a two some a three and some a four or five. I asked if she felt pain throughout the day at school and she said no because of how she sits. I asked her what she meant by that. Amaya showed me how she sits during the day. She puts her right foot under her bottom to help prop up her left hip. She said that she sits that way because it helps take some pain away. She said that if she sits flat on her bottom without her foot underneath then her hip hurts. 

    Obviously its causing her some discomfort. Its sad to me that she just deals with the pain. She's a trooper though! Just goes on along enjoying life.

My hip popped

    Amaya let us know that while she was at school during recess her hip popped. She said she was running then felt it, heard it and saw it (yesterday). I can't explain the sinking feeling this gives me. I asked her questions about it while trying to keep my cool. It worries me and saddens me. It's hard to know what's "normal." Because Amaya's normal isn't the same as yours and mine. I'm not sure how much to worry, what to do or think. This is the first time it's "popped" since last year when she had her hip osteotomy. She didn't do anything new, or hurt herself, or have an accident. Her hip use to pop often, not very often, but every once in awhile. Especially when she was much younger. When it pops it dislocates then pops right back in on its own. Yesterday was the first time it popped then again today. She said yesterday's was worse, but that she went to the office and got some ice to help with the pain.
My sweet Amaya is a tough cookie. Not a complainer. Not one who's giving up.
Keep her in your thoughts.
Thanks.

Amaya's first triathlon

   Just six months after having her fixator removed Amaya participated in her first triathlon this past weekend. It was such an amazing day! I've been at a loss for words...trying to put all my thoughts, emotions and events of the day into words. So I apologize in advance if its a rambling mess.
   During Amaya's lengthening and physical therapy we talked about the triathlon. We looked forward to it, and would talk about her therapy as training for the triathlon. It seemed so far away. I watched Amaya work had to ride a bike at therapy, struggle to bend her knee, and build up her time and stamina on the elliptical. Amaya has come a long way!
   I was proud of Amaya for wanting to participate. She hasn't let her PFFD or her lengthening slow her down. Not one bit! Being able to walk, run, bike ride, and live a happy healthy life after such a tough year is great. Going out to challenge yourself to do a triathlon, well that's pretty amazing. The triathlon consisted of a quarter mile bike ride, followed by a quarter mile run then a twenty-five yard swim. I was surprised how quickly the kids went from one event to the next. There was no down time after each event. Amaya did great! She kept up her stamina, didn't tire and had fun. Her friend Mason asked if he could participate in the triathlon to be there with and for Amaya. What a great friend! Amaya has known him since they were babies. His calm, kind demeanor helped calm Amaya's nerves. She was so happy to have him by her side. They both had a great time and are excited to do it again next year. Lidie's looking forward to participating next year for the first time (once she learns how to swim this summer).

   The night before the triathlon Amaya learned to ride her bike without training wheels! She has been practicing to ride a bike for weeks. But she was a bit nervous and unsteady. She had said she wanted to ride Lidie's bike since it was smaller and had steadier training wheels. Josh taught her then helped her practice and build her stamina so that she would be comfortable during the bike part of the triathlon. She rode for a minute, then two and built up to five minutes! She worked hard and never gave up. Even when she fell and scraped her knees. Her resilience is amazing! In one evening she learned how to ride! 

     While watching her ride I remembered all the times that she would trip and fall because her knee didn't have ligaments and was unstable. I thought of the times she tried to ride a tricycle but her left leg couldn't reach the pedal. And now here she is with a stable knee, with a femur that has grown 3.1 inches, with two feet flat on the ground. How can I explain what I'm feeling? I don't think I can. Sometimes words aren't enough. I am extremely grateful to Dr.Nelson, to the residents, to Melissa and the other therapists that have helped us. I'm amazed, I'm encouraged. I'm hopeful and proud. I'm happy, excited and sentimental. 

Lidie making a sign to hold up to cheer on Amaya. 

The girls loaded up and ready to go! We listened to the triathlon playlist that Josh created for Amaya. Can you guess what song was the first one on there? Yep, The Eye of the Tiger.

Enjoying a snow cone before the event.

A thumbs up before the start.

Amaya and Mason ready to go!

   This video brings tears to my eyes. After riding their bikes Mason and Amaya came to the drop off area. Everyone was yelling and cheering the kids on to start running. Mason got his helmet off first and started running. But after taking only a few steps he stopped dead in his tracks and looked back for Amaya. He cheered her on and waited for her to catch up. And then for the next quarter mile he never left her side. He could have easily out run her, but instead decided to run beside her.

    The night before the triathlon Amaya raced her sister, cousin and friend. She was slower than all of them. She was sad and worried that she would be slow at the triathlon as well. But what she didn't know was that Mason had decided, on his own, that the triathlon wasn't about a race, but about being there with and for Amaya. He had decided that he wouldn't leave her side for the entire event. And even in the midst of all the yells, cheers and confusion he remembered what he had set out to do. He remembered to be a good friend. 

   I'm grateful to him for his friendship and kind heart. Amaya is lucky to know him and count him among her closets friends. It was wonderful to see such a display of friendship. I'm proud of Mason. I couldn't be prouder. What a sweet guy! 

At the end of the quarter mile run there was an obstacle course for them to run. Amaya said that was one of her favorite parts of the run. 

After the obstacle course she took of her shoes and running clothes then ran to the pool for the swim.

Amaya and Mason waiting for their turn to swim. Mason let Amaya go in front of him.

You can only see the tops of Amaya and Mason's heads, but at least it gives you a visual of how far across they had to swim. They were so fast that they finished swimming across before most of the family got over to the pool area. Mason did the breast stroke all the way across. He's such a great swimmer. 

After crossing the finish line Melissa walked Amaya over to get her medal.

I thought it was fitting that Melissa be the one to do it. After all the days of challenging, motivating, and instructing her and helping her get to this point. 

Amaya getting her finishers medal.

Amaya with her medal.

Mason and Amaya.

Silly string! They were ambushed, and loved it.

Lidie couldn't help but try on Amaya's medal. 

Melissa, Amaya's physical therapist, and Amaya. Melissa was sweet enough to come over and cheer Amaya on for the entire event. I overheard several of our family members go over and thank Melissa for all her help. Several of my aunts teared up while thanking her. 

Amaya and Cotie Williams. Cotie is a program coordinator for PossAbilites. We're very grateful to Cotie for all her hard work to help create such great programs for PossAbilities. 

Here's some of Amaya's cheering section. Amaya was happy to see so many people there to support her.

My aunts with Amaya and Mason. My aunts kept hugging Mason and thanking him for being such a good friend to Amaya. 

Amaya with her Tia Amanda and cousin Sierra. 

While Josh went to get the car to pick us up the girls enjoyed a snow cone (for a total of three for the day!).

I caught Amaya looking at some of the posters her family had made for her. "It made me feel, like good," she said. 

Another Wound Care Appointment

    This morning we had another follow up with the wound care doctor to check the bedsore on Amaya's heel.  While we waited in the hospital lobby for the appointment Lidie said, "I wish Amaya still had therapy. I miss it there. It was fun. And there were lots of toys for me to play with." This lobby wasn't fun at all. We were in the waiting room to the hospital and they had to be quiet for quite a while. Both girls got bored after a bit, but still managed to behave. I was very happy and proud. Even though we were the first scheduled appointment of the day we waited over an hour to see the doctor. 

    While we waited I wondered, and hoped if this would be the last time we have to see the wound doctor. Her heel has been healing nicely, and doesn't bother her at all. I was optimistic and hopeful. When we went back the nurse looked at Amaya first. She commented that it looked good and was glad that it wasn't hurting Amaya anymore. When the doctor looked at it he said it looked good, and could tell that the fat was growing back in. He pushed in on it and could feel it regenerating and healing. He said that it is continuing to heal, but that this is a slow process. He measured it and said it was at 2.3 cm. It use to be over 3 cm in each direction, so it is shrinking. He was happy to see that it wasn't hurting her or causing her discomfort when she walked.
     He said he wants to see her again in six months and asked that we continue to keep taping it daily  and wearing the foam at night. Amaya was hoping she wouldn't have to anymore. But since its helping we're going to continue with it. The doctor said its not necessary for her to wear the boot during the day anymore. He also said that we want to avoid letting her run barefooted. He said that, that could cause internal bleeding in the area and would make it worse. I asked how long he thought it would take for it to completely heal. "How old is she?" He asked. I said, "seven in a half." Then he replied with, "probably not until she's ten or twelve." I smiled, said "wow." But in my head I was thinking and saying all kinds of crazy things.
    I can't believe that it will take another three to five years for this to heal! It has already been fourteen months since she first got it. And its been at least five months since we've been treating it. This is completely frustrating, disappointing and annoying. I still can't believe that what took minutes to get will take years to heal. Wow. It's crazy. So my advice to you is this, don't get a bedsore. Especially in a place that's hard to heal from. Like a heel where you're constantly putting pressure on. It sounds pretty simple, but its true. The best thing when it comes to bed sores is to not get one in the first place. And for all you PFFD parents whose children will be getting a fixator please watch out for any potential bedsores. Amaya got hers in less than an hour. Her knee was propped up with a pillow to help keep it bent. All the weight of her leg and fixator were resting on her heel and she quickly developed the bedsore. Hopefully you can learn from our situation and can avoid any potential bedsores for your little ones.
     I asked how long she needed to keep taping the heel and wearing the boot at night and he said that we should do it until we come back in six months.  He said our other alternative would be surgery, but she would have to be off her feet for awhile if we did that. I told him that the plastic surgeon suggested we wait until she was older and see if it bothered her then. The wound doctor said that we'd have to weight the options, her mobility, her activity level and see how it continues to heal. He said that he would rather wait until she's older before he recommends surgery too. I was glad to hear that. And honestly, I'd rather avoid that. I'm hopeful and optimistic it will continue to heal. I just wish it didn't have to take another three to five years for that. Ugh.

   

Waiting for the doctor to come in Amaya showed me her new smile. She's lost two teeth this week!

On the way out Lidie and Amaya grabbed more "doctor masks" to play doctor at home. Lidie tried hers on right away. Amaya reminded me today that her dream is still to be an orthopedic surgeon when she grows up.

Here's what Amaya's heel looked like when she first had the bedsore. It looked like a painful bruise. And it was super tight from the liquid that built up inside of it.

Here's what Amaya's heel looks like today. You can barely see a difference. But you can feel it when you touch it. Its like there's a piece of her heel missing there.