amaya at lake

amaya at lake

Saturday, December 31, 2011

Trying to explain lengthening and the fixator to family

     Over the past few weeks we've been able to spend a lot of time with family celebrating Christmas. It was nice seeing family from all over. Several times the conversation turned to the upcoming surgery (a little over two months away!) I tried my best to explain about how the lengthening will happen and what the fixator looks like and will work.   I talked with my aunt Rosa and uncle Alex and explained that Amaya would wear the fixator for about ten months and that she would have daily physical therapy. I told them that I was a bit nervous/queasy about the pin site cleaning (every day we have to clean all the areas where a pin is entering her leg, about eight spots). My aunt asked if a nurse would come do it, ( I wish!) but explained that we had to do it along with turning the screws several times a day. Her face was one of shock. "How can they ask you to do that to your own child? How can you do something you know is hurting her?" I answered honestly, "Trust me I know. I've been dreading it ever since I heard about it several years ago. The only thing that I can think is that turning the screws will make her leg longer and cleaning the pins is so vital to prevent infection. I have no choice, we have to do it. But, yes I'm scared and nervous and wish I didn't have to do it." She gave me a look of empathy, which I appreciated.
     I showed her a picture of an x-ray with the fixator on and one that showed the pin sites. She couldn't believe how long the pins were  and how deep they went in and out of the leg (they're about five inches long and go into the bone about an inch and come out of the skin about another inch). She showed my uncle Alex the picture and they both just stared at the pictures for awhile trying to figure it out. It's pretty amazing to see a picture, especially if you've never seen one, which most of us haven't.  Thankfully other parents have created blogs for their children and have posted pictures of the fixator, the x-rays, legs, etc. The blogs and pictures have been so helpful (thank you all for your blogs).
     After a few minutes my uncle said he was a bit confused "I don't understand how you can stretch a bone, bones are so hard." I told him that they'll break her femur in about two places. He was kind of shocked, "Are you serious? With everything else their going to do, their going to break her bone too? Oh my! That's terrible." (I'm add libbing since I'm translating from Spanish to English).  I explained that the broken bones will be attached to the pins, the pins attached to the outside fixator. As we turn the fixator it pulls the bone apart, and new bone will grow. The bi-weekly appointments will show the doctor how the new bone is growing. The daily pin cleaning will help prevent infection. The daily physical therapy will help her tissue, muscles and ligaments grow and keep her knee mobile.  It's pretty amazing. They both gave me some encouragement and offered to help any way possible.
     The following day I was talking to my sister in law and shared my conversation with my aunt and uncle. I showed her some pictures as well ( a visual is always a great way to show people what a fixator is).  She could hardly believe how long the pins were and how far out the fixator came out of the leg and just how big it is. There are two types of fixators, the round ones that look like a halo, and the straight rod type that go along the outside of the leg. Amaya will get the straight rod type, that will go from her upper thigh down to her shin. At her shin the rod arches across her leg.  I explained that although Amaya will wear the fixator for ten months, only about four months of that time is spent growing new bone. The rest of the time is to allow the new bone to harden and heal so that when the fixator comes off, her leg will be strong and not break.
     Each time I explain what will happen, and what the fixator looks like I'm a bit humbled, a bit nervous, a bit scared, and a lot hopeful.

Friday, December 30, 2011

I'm scared...

     Yesterday Amaya and I went to visit one of my aunts. While we where there my aunt asked Amaya if she was ready for her surgery. "No." she replied. My aunt tried to be optimistic and asked Amaya why, and reminded her that she loved her and that the surgery was going to help her leg. She also told Amaya that she's already been thru one surgery so she kind of knows what to expect, and that she'll do great just like she did the last time. Amaya softly replied "I'm scared of my fixator." My aunt continued trying to encourage Amaya.
     Tonight when I was rubbing Amaya's leg before bed I reminded her that its okay to be afraid. When I asked her about her fear of the fixator. She said "it's like I have two voices in my head, one says I'm afraid, but I'll be okay. And the other voice says its gonna hurt, but I'll be okay. But sometimes I just want the voices to stop." I reminded her that it's okay to be afraid, it's important to share her fears and feelings with us, or draw or write what she's feeling. I told her that she really will be okay. And that we will help her get thru everything that happens. She seemed reassured then asked "something else I worry about is, Lidie. Will she be in the hospital too?" I told her that no, Lidie would be home then later be able to visit her. How sweet is that?! Worrying about her little sister. That's my Amaya; sweet, thoughtful and kind.

Monday, December 19, 2011

New shoes

     We got Amaya's new shoes! They're a cute pair of black Vans that match her sisters.  The shoes were thirty five and the lift was sixty but, thanks to the generosity of my three aunts they cost us nothing. What a nice treat. The lift is an inch and a half, but looks bigger in this picture. We realized that this will probably be her last pair before her lengthening surgery in March. I guess once they start lengthening they'll cut some of the lift off as they go along. 
     We had been paying eighty-one for the lift at another shoe repair place, and decided to go back to our old place. This time it was half an inch more so they doubled the price. I'm always surprised by the cost. Sometimes they cut the sole off add the lift then reattach the sole, but this time the lady at the counter said that that wouldn't work with these shoes. So instead they added the lift on the bottom of the shoe then added another thin sole to help with traction.

Here she is with her new shoes.
 I love her smile in this picture.

Thursday, December 15, 2011

Friends on the playground

     A few days ago we noticed that Amaya's shoes with the lift had gotten small and were starting to hurt her feet.  So we let her wear shoes without a lift to school yesterday. She decided to wear her "ugg" boots.  When I went to pick her up she told me that at recess she was playing "jail" with her classmates. While she was running her knee popped and she had to stop playing/running. Her knee hurt her so she leaned over and held it. Her friends noticed that she wasn't running anymore and asked her what was wrong. She told them her knee popped. They asked if it hurt and she said yes. Her friends sprung into action. One stayed with her and the other ran to tell their teacher Mrs. Griessbach that Amaya was hurt.  She called them over and Amaya walked while holding her knee (she said it hurt a lot). Her teacher asked if she was okay,  and how bad it hurt. When Amaya told her it hurt a lot, Mrs. Griessbach gathered the class. She asked Amaya if she needed to be carried, Amaya said no, but thought it was "very nice of her" to offer. Mrs. Griessbach walked Amaya and the class over to Josh (luckily Amaya goes to school at the school where Josh works). He talked to Mrs. Griessbach and "was acting like Dr. Nelson" (that's what Amaya said to describe his questions about what happened and how she felt).  After a quick "inspection" dad determined she was okay and she returned to class.
     Her teacher and friends were a bit scared by the incident. But, Amaya was calm and handled it like a pro. She said she wasn't scared at all and knew she was okay, even though it hurt a lot. I'm glad that her and dad are able to stay calm while others are scared. I'm also thankful for her kind friends and her teacher who helped make sure she was okay. We all need friends to get us thru the tough times, and I'm so glad and thankful that Amaya has some. In fact, she has many.

Monday, December 12, 2011

A year already?

     I was reading some of the early blog posts and realized that I started this blog over a year ago. It was Dec. 3, 2010. We were about a month away from Amaya's super hip, super knee surgery and full of nerves. It seems so long ago, yet its hard to believe that it has been a year already. Doesn't make much sense does it? So much has happened this past year. Some time was spent in a blur. The time leading up to her surgery, the weeks following it...all of it a bit of a haze. We were in survival mode and somehow made it thru just fine. Amaya did fantastic thru it all. Her strength, resilience, courage and compassion for others have been inspiring.
    I'm so grateful for the many people who have read our blog over this past year. I'm flattered that I've reached over 3,500 readers. It's amazing that so many people have checked in to read. And from all over the world. We've had readers from all over the United States, Germany, Mexico, Spain, the Netherlands, the United Kingdom, Russia, Poland, Italy, the Philippines, Canada, Australia, Malaysia, and Slovenia to name a few.  It's comforting to know that people all over the world are on the same journey as us, and that they understand what we're going thru.  It's easy to feel isolated at times since cases of PFFD are so rare (one in 200,000). It's hard to find someone else who knows what you are going thru. Thru Facebook, this blog, and others' blogs I have found a support group from across the world.
     Thank you all for taking the time to check in on Amaya, her progress and day to day happenings. We appreciate your love, care, concern, thoughts and prayers. This journey is made easier by our support system. I hope that our blog gives back to you, what you give to us (support, understanding, love, acceptance, friendship and a shoulder to vent and cry on).

Monday, December 5, 2011

Nutcracker ballet

      My sweet Amaya has just finished her first Nutcracker ballet season. She was one of six Gingerbreads chosen to be in the ballet. This Sunday afternoon she danced in her last performance for the season.  It meant learning choreography and practice, lots of practice (two months of practices on Saturday mornings), costume fittings, and buying tights and more tights.  It also included one week of late night rehearsals and then eight performances scrunched into five days (what an intense schedule)! My sweet Amaya not only had the Nutcracker schedule to balance, but she also started her full day kindergarten schedule the week of performances as well. On the second day, I offered to keep her home after her performance, but she insisted on going to school anyway (what a good student). All in all she did great. She balanced school and ballet and had fun all at the same time. She was lucky to be in a group with five other sweet girls and she made some good friends.
     I'm most impressed that she did something that she originally didn't want to do, and was scared of doing. She decided to step out of her comfort zone and try something new. And she did great! And each time we dropped her off in the dressing room, she stayed alone and kept, busy, focused and followed the rules. She made me proud by being her sweet, kind, confident self.
    When she got up on stage, she said she could see the audience, but that she didn't get scared or nervous. She had lots of fun and looks forward to being in the Nutcracker again. She thinks maybe next year, but with her lengthening surgery scheduled in March that won't be possible. But, maybe the following year.  This experience taught her and reminded her that she can do anything. That sometimes things get busy, hectic, and difficult, but she can handle them with some help. It also reminded her of how many people love and support her (she was touched by the many friends and family members that came and watched her show and those that called and wished her luck). 

This was in June when Amaya auditioned to be in the Nutcracker.
This is Amaya and the other Gingerbreads.

Here are her ballet slippers.

Amaya drew what she looked like on stage.

Here she is in her costume.