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.
 

Wednesday, November 30, 2011

Uncle Todd

     My dear and old friend Todd has now become "uncle Todd" to my girls. Todd and I have been friends since we were fifteen(over twenty years). He was my first best friend and I'm so glad and thankful that we've reconected these past couple of years. It's nice to have him become close to my family and connect with my girls. It's nice that they ask about him and even though we don't see him often (since he lives in the Bay Area) we are connected and maintain a friendship.
     This past weekend he was able to come and celebrate Lidie's third birthday with us. During her party he made the effort to talk with Amaya and let her know that he thinks she's a pretty cool kid. To which she responded with a thank you. He then asked her about her upcoming surgery and what she thought about it all. She said that she was gonna be fine. Then he asked if she was scared or nervous. She said yeah a little, but that she was gonna be okay. Then off she ran to enjoy the bounce house with her sister.
     I'm so proud of Amaya for being honest, calm and optimistic. And I'm so very grateful for a friend who showed his concern to my daughter. Who reached out to ask how she feels, thinks and is dealing with everyting. And then goes the extra step, beyond her first answer, to ask about her fears. That small simple conversation showed so much sincere love and kindness. Thank you uncle Todd, my girls are lucky to have you in their lives, as am I.

Friday, November 25, 2011

Yesterday

    Yesterday Lidie (Amaya'sthree year old sister) told me a story. She told me that she use to have a cast, she had surgery, she has a short leg, and use to use a wheelchair. I had to smile and ask "is your leg short like Amaya's?" Then she looked at me like I was crazy. I told her that Amaya did have a shorter leg, but she didn't believe me. I asked her if she remembered when Amaya had her surgery, or cast or wheelchair. She looked at me and said "no, she didn't!"
     It's hard to believe she doesn't remember any of that, but she was only two when it happened so I suppose it's to be expected. But, what's interesting to me is that she doesn't notice that Amaya has a short leg, or wears a lift on her shoe. Amaya also has a best friend, Mason,who never noticed either. To them, they just see Amaya. I remember when Amaya had her surgery Mason asked why she needed one. It didn't make sense to him because he couldn't understand "what was wrong with her." It should also be noted that he is one of the sweetest kids I've ever met. He is a great friend to Amaya.

Dolphin Tale Pt. 2

    Well we finally went to see the movie Dolphin Tale on Wednesday. I'm so glad we did. I really enjoyed it, and teared up several times. Amaya really enoyed it too. Its hard to tell if Lidie did, since she fell asleep.
Dolphin Tale tells the story of a dolphin named Winter. It folowers her as she is found on the beach tangled in a crab net. She has to have her tail amputated because it had lost circulation for too long. Winter learns how to swim without her tail, but that begins to damage her spine so they create an orthotic tail for her. After several attempts they make one that fits her and she can use to swim. I was inspired by her tenacity and that of her many caretakers. It's amazing to see people connect with an animal. She seems to inspire and comfort others while her caretakers help better her life.
     I also loved that Winter serves as an inspiration to people who have lost limbs or were born without. They all share something with Winter and it's pretty magical to see people interact with her. As we were leaving Josh pointed out to Amaya that it took Winter some getting use to her new tail and that Amaya would have to do the same when she gets her fixator put on. She doesn't quite know what it will look like and it's hard for her to imagine what it will feel like and look in/on her leg. We will all have to adjust to her "new" leg. But like Winter, Amaya has strength, perseverance, courage and tenacity and I know she will adjust and do great.

Saturday, November 19, 2011

An old note

     I just found an old note that I had written when Amaya was four months old. It was a reminder of questions that I wanted to ask her orthopedic surgeon.  We were going to be seeing her for the first time. At this point Amaya was wearing a brace that kept her hip in a frog like position. She had to wear it all the time and we were not allowed to remove it (not even for baths or diaper changes). Her hip and knee were popping (we didn't know yet that the popping was happening because her hip and knee were dislocating). At this point, we didn't have an official diagnosis of PFFD, we didn't know what condition she had. We were told it might be hip dysplasia (that's why she wore that brace). She had had an ultrasound but, it was hard to read because she was so young and some of her bones hadn't finished developing.
     This time in our lives was so painful; there were so many unanswered questions, fears, and lack of information.  We didn't know what PFFD was, what the future held for Amaya or us. I remember having so many questions for our doctor and specialists.  We would go to appointments and leave with some answers and many more questions. That's one of the reasons I started this blog, for other parents on this journey. So they don't feel so alone, so isolated. So they know that others have walked this road and are willing to help them along the journey, and that this is a wonderful journey (although difficult at times, it's very wonderful). 

Here's what the note says, 
BRACE-
how long?
ok to take off?
does hip have to be in place by Dr.?
or is position of brace ok?
PFFD causing hip out or hip dysplasia also?
Knee out?
Info on family?

Amaya's Cast

     While Amaya and I cleaned her room the other day she "found" her cast in her closet. It's been on the top shelf ever since it came off back in February, but she just noticed it for the first time that day. She held it and looked at it for quite awhile. She read the names and messages left by friends and family and I could tell they meant a lot to her.
     I went into the bathroom to put my contacts on and get ready to take them to the playground.  I could see Amaya sit in her chair and get into "teacher mode." She asked Lidie to come sit on the floor with her. Lidie came and sat then Amaya asked her "Lidie what do you want to do first, touch my cast or listen to the story of my short leg? I could see straight in and hear everything they said. I stopped what I was doing so I wouldn't miss a thing. Moments like this touch my heart and make me smile.
     Lidie asked "Can I pretend I have a broken arm and put it on?" Amaya responded, "No Lidie, its very old and fragile." Amaya let Lidie look at it, touch it, and read the names to her. "Look Lidie, that's a mermaid, Shannon did that. And this is where the Grinch, Max and Cindy Lou signed it (it was really Josh, but we won't tell her that).  And look even Mom and Dad signed it." Lidie looked on and said, "Oh, that's pretty." Amaya asked her again if she wanted to hear the story of her short leg. I hoped she would say yes because I wanted to hear her tell that story so badly.  I had never heard her say that she had a story about it, so I was quite curious what it  was. But, Lidie being two and having the attention span of a two year old declined and decided to dance around and sing instead.
     I was quite disappointed to miss out on the story so later I asked Amaya if she would tell me the story and she said "Yeah, when I was a baby I was born with a short leg then I had two surgeries and that was it. I was better." It was so simple, so concise, no drama, no pain, no complaints.






   

Friday, November 18, 2011

A new self-portrait


     I found this on the table today. It's a self-portrait Amaya colored of herself yesterday. I love the colors in this picture so much and the big smile on her face. I think its pretty cool that she drew one leg shorter than the other and that she drew a lift on the other shoe ( a little mixed up, but that's okay).




Thursday, November 17, 2011

Appointment with Dr. Nelson

     Well I was fine all day until about lunch time, that's when the butterflies in my stomach started acting up. I tried hard to stay calm so the girls wouldn't pick up on my nervous energy. We got ready and left to drop of Lidie at her aunt Hilary's house. It was nice not having to worry about keeping Lidie entertained during the appointment (thanks again Hilary).
     On the drive over to the orthopedic office Amaya told me that she was nervous about the appointment. She was worried that she would need another surgery on her knee (since it has been popping and hurting her). I calmed her by reminding her that it made no sense to worry about things we didn't know about or have control over (advice I need to follow) and that if in fact she did need another surgery, that we would handle it and she would be okay.
     When we got there and checked in I noticed a new sign that said that wait times varied by doctor and are unavoidable but, to please be patient ( I wondered if that meant we would have a long wait). Waiting is just part of the deal. After checking in we were sent over to radiology to register and get Amaya's x-ray taken. While we were there Josh made it in and met us in the waiting room. I was glad to see him (he always brings a calm energy to these appointments). While I was registering the receptionist had a hard time finding the referral for Amaya's x-ray in the system. Thankfully I remembered my copies (I always bring them as a back up) because they didn't have the codes in the computer and weren't able to allow her to have x-ray taken without them. I showed the receptionist my copies and then they were able to enter the codes and get Amaya registered. Then we moved into a hallway to wait to be taken back in for the actual x-ray. Amaya and Josh played bejeweled on the iPad, which helped pass the time, since there is a lot of waiting involved with these appointments. I asked Amaya who she wanted to go back with her when it was time to take the x-ray. She picked dad, as I suspected, and to be honest I was a little relieved.
     When they came back we went back into the orthopedic office, let them know we were back from radiology and waited to be called back. A few minutes later a nurse led us into an exam room. We waited in the room for Dr. Nelson to come in but, were first greeted by one of the fellows that works with Dr. Nelson (there were three there today). He pulled up the x-ray, asked how Amaya was doing and why we were here. He checked her knees and compared the right one to the left one. He pushed and pulled on her left knee (this part always makes me kind of queasy. It's so strange to see someone pulling on your child's knee trying to see if it'll dislocate). After he left we waited (more waiting) for about fifteen minutes until Dr. Nelson and the team of fellows came in. While we waited we looked at Amaya's x-ray on the screen. It was really cool to see her bones up there and she loved seeing them and asked why her clothes didn't show up on the x-ray. We explained why and then went back to looking at the x-ray. She hasn't had x-rays taken in several years and I was so excited to see how much she's grown. I noticed that she was standing on plastic blocks totaling 7 cm.(2.8 inches), so that her hip would be level in the x-ray.
     When Dr. Nelson came in with his team they greeted us all then began to review the x-rays, take measurements of her femurs, the angles of her hips, her left knee and made calculations. Dr. Nelson told us that right now the difference between Amaya's two femurs is 6 cm, but the projected difference is 8 cm (3.1 inches). So when she's done growing the difference between her femurs is going to be 8 cm. He watched her walk (said she looked great and did good with her lift). Then he looked at her knee; moved it, had her bend and straighten it, pushed and pulled on it and said it looked great. I mentioned the popping and pain but, he said that even though he didn't have an explanation for the popping, the knee was in good shape and the pain was within normal range. He said that the left knee will never be like her right one, but that his goal is to make it the best possible so that the lengthening will be successful. He said that the goal of the lengthening is to gain the full 8 cm that she will need (usually when they perform lengthenings they gain between 4-8 cm. 8 cm is the maximum). Hopefully there won't be any complications and she'll be able to achieve the full 8 cm. That would be ideal, because it would give her all the length that she needs. He said if the full 8 cm isn't reached he would later perform another surgery on the right leg to stunt the growth to let the left leg "catch up."
     During the surgery in March Dr.Nelson will not only attach the fixator, but he will also make minor adjustments to the ligaments in her hip as well as straightening the curve above her knee(you can see it in her x-ray below). She will wear the fixator for about ten months, so about this time next year she'll be having her fixator removed (hopefully, if all goes well). The lengthening process is divided into two phases, the first is the distraction phase (this is when the lengthening occurs, and lasts about three to four months) the second is the consolidation phase (this is where the new bone hardens, and lasts between four to six months). He also reminded us that Amaya will need daily physical therapy (hour long sessions) as well as bi-weekly appointments and x-rays to monitor her lengthening. Dr. Nelson seemed optimistic about the outcome of the surgery for Amaya and said that Amaya was a prime candidate for the lengthening procedure because the surgery would be greatly beneficial to her and provide good results. He also said that she was in good condition and would do great. It will be a pretty intense procedure, but well worth it in the end. Josh reminded me, that at least it's not her brain, heart, lungs, etc. that we're dealing with. It's just a leg, it could be much worse, way worse. We have much to be thankful for.
     All in all it was a great appointment. We confirmed our surgery date for March 6th. And will be returning in late February for our pre-op appointment. Thank you all for the well wishes, calm thoughts, calls, letters and prayers. A strong support system is invaluable, thank you all.

This is Amaya sporting her new binoculars, waiting to leave for the appointment.

This is Amaya's x-ray. 

Amaya and her dad enjoying some veggie food from the Loma Linda Children's Hospital cafeteria.
   

Tuesday, November 15, 2011

Another ouch

     Last night Amaya was playing in the living room with Lidie. They were letting go of a helium balloon that Lidie got at the grocery store then they would take turns jumping up and catching it. I watched them from the kitchen as I made dinner. They played for about twenty minutes until Amaya let out a loud cry of pain. That loud cry startled me and I wondered what she could have done to cause her that much pain. Amaya has a pretty high tolerance of pain and rarely cries out like that. She had jumped up to get the balloon and when she landed she said she heard and felt her left knee pop. She was barefoot, and not wearing her lift, so I wonder if maybe she put too much weight on it when she landed. She sat on the couch in pain for a few minutes while Lidie helped take care of her; bringing her a pillow and an ice pack.
     This is the second time Amaya's knee has popped since her surgery in January that has caused her pain (that I've seen, she said its happened more than that).  Not only does it hurt me and sadden me to see her in pain, but it also makes me worry and wonder. I begin to question, did something happen? Did she injure it? Did she undo something? Did something come loose? Why is she experiencing pain now when she never has before? All these questions just lead to more worry and stress and pain. It's a difficult cycle.
     Thankfully it's only two more days until we go see Amaya's orthopedic and have x-rays taken. Hopefully he can help answer some of these questions, make the pain go away and calm my fears. Hopefully.

Kindness

     We are so fortunate to have the love and support from so many people. Not only from family, but from friends and strangers as well. This week some of my aunts volunteered to pay for Amaya's next pair of shoes and her shoe lift. Her shoes usually run about thirty dollars and the lift is eighty one. That can add up to one costly pair of shoes, which she out grows in a few months. Their kindness and generosity really touched me. I'm always surprised by the kindness, generosity and the willingness of others to help.  In the past others have offered to pay for Amaya's shoes, lifts or knee braces. We are lucky to have such loving people in our lives.
     Amaya also had a new friend, Amethyst, offer to cook something for her while she was in the hospital and get her a snuggly from Build A Bear. This nine year old was so sweet, thoughtful and loving. It's nice to see other kids respond with kindness to Amaya.  When Amaya told Amethyst about her leg, and why she wears her lift. Amethyst told Amaya "I like your shoe, its cool." That put the biggest smile on Amaya's face. That's what the power of love, and kindness can do.
     Yesterday I received a call from my aunt Eren in Georgia. She called to see how me and Amaya were doing. She had been thinking about us and wanted to let us know. Her call gave me the support and love I needed. Her call as well as the emails from old friends are priceless. People checking in on me, having friends that I can vent to and give me gentle reminders to stay calm and let things out are so helpful. Thank you Todd and Yvette.
     All these small acts of kindness are really rather big. Thank you all.

Wednesday, November 9, 2011

Amaya's yearly check-up

     Yesterday we had Amaya's yearly check-up with her pediatrician, Dr. Dixon.  After getting weighed (she's still only 45 pounds), checking her height (she's 46" tall) and checking her eyes, the nurse led us back into an examination room to wait for Dr. Dixon. When the nurse pulled out a hospital gown for Amaya to put on, Amaya looked at me with worried eyes and asked why she had to wear it (it was similar to the one she had to put on before her last surgery). I assured her she was just getting a check-up today and then she complied. She didn't like it very much, but just "dealt" with it. 
     Dr. Dixon came in and examined Amaya. She said Amaya looked great then she looked at her knee and could tell a huge difference from the last time she saw her.  She hasn't seen Amaya since her last yearly check-up (last November), prior to her super-knee procedure. She was so happy with how Amaya's knee was working.  It was nice to see her excitement and joy. She said that she remembered that before the surgery Amaya's knee "was all over the place" and now it was "stable."  It's pretty amazing! I remember after she got out of surgery I told Dr. Nelson "I can't believe you fixed her knee in just two hours."
     Dr. Dixon asked what was planned next to correct Amaya's leg.  I let her know that the lengthening surgery was scheduled for March.  Dr. Dixon paused and gave me a look that kind of made me feel nervous. She said  "that one is the difficult one."  Which made me feel a bit nervous; knowing that the future holds some trying times leaves me a bit uneasy. She said that we need to think about the possibility that Amaya might need home hospital (so that she doesn't fall behind at school). She said that from her own experience other kids miss about a month or so of school.  I told her that we have Amaya's surgery scheduled during her next off-track session (a five week session). And she agreed that that was good timing, and hoped that Amaya would not miss as much school. She asked how Amaya was doing in school, and how she handled the last surgery. I let her know that she did great during the last surgery but, that she still had some lingering fears of death. Dr. Dixon looked at Amaya and asked her if she was still afraid, and Amaya said "yes." Dr. Dixon told Amaya "your leg won't kill you. Whatever is wrong with it is nothing that can kill you. You don't have to worry about that." I could see Amaya was understanding and believing Dr. Dixon.  Dr. Dixon went on to ask Amaya how often she worried, if she lost sleep over it, or felt sad during the day. Amaya told her that she did think about it, but was able to sleep and eat and didn't feel sad. Dr. Dixon let us both know that what she was feeling was normal. She said that children begin to understand, become aware of and fear death around age seven or eight. But, since Amaya was around hospitals and had a surgery, that made her think of it sooner. She said that Amaya seemed quite mature for her age. She made the analogy that since Amaya was around hospitals and surgery she knew more about them than another child her age who hasn't gone thru that. And if a friend of hers had gone to Hawaii, that friend would know more about Hawaii than she would. That made a lot of sense and gave me the reassurance I needed.  Dr.Dixon let Amaya know that if she did begin to worry more or lose sleep to let me know so that we could get her the help she needed (a counselor). 
     Dr. Dixon suggested we give Amaya the flu vaccine since she'll be exposed to many germs and offered to have her take the nasal spay vaccine instead of the shot (she said Amaya has put up with a lot this year so we should give her a break). Amaya was relieved and enjoyed this special treatment. While we waited for the nurse to come in with the vaccine we got a surprise visit from Marylou (she is the insurance referral coordinator at the Beaver Clinic). It was such a nice treat to see her smiling face. Marylou has given us so much help for several years now; making sure that all the insurance papers are processed in a timely manner to get all of Amaya's medical referrals taken care of and her procedures covered.  I've said it before, she's amazing! While others are more passive in helping us Marylou always makes a big effort to help us. It was so nice to see her and the fact that she made the effort to come by and say hello meant a lot.  She asked Amaya what she was going to have done to her leg, and how she felt about it. Amaya told her that she use to be scared, but now she's ready. Marylou told Amaya "we'll be rooting for you!" Then I hugged her, thanked her and off she went leaving us feeling refreshed and encouraged. It meant a great deal to me that she has followed Amaya's  journey and made the effort to come visit her.  Kindness like that means so much to me. I also appreciated how Dr.Dixon handled Amaya's fear of dying, how happy she was for her that her knee was fixed and her honesty in letting us know about the upcoming surgery.  
      I'm so thankful for the great medical team that helps Amaya and our family. They are talented, gifted, kind and go above the call of duty. We are so fortunate.

This is Amaya wearing the sticker she got from the doctor's office "Built Tough."


Amaya asked me to "take a picture of Lidie, to show people who my sister is that takes care of me."

Saturday, October 29, 2011

Fears

     Fear seems quite normal for me. I'm a pretty big scaredy cat. Growing up I was afraid of the dark, sharks, the "boogie man," and any scary movie ever made. I'm not sure if others are as scared as me, or scare easily. But some fears are normal, aren't they? Don't we all fear many things? Don't we strive to conquer those fears? I know I have.
     Lately I've noticed the things that Amaya's afraid of or intimidated by. Like today when she arrived to nutcracker rehearsal and the room was filled with lots of kids practicing their parts. She paused, looked up at me and said "okay, I don't wanna be here, let's go." I gave her a hug, a kiss and told her that she is brave, strong, amazing and can do anything. And off she went, just like that. And as I watched her rehearse, she did great! So maybe sometimes fears are insecurities or sometimes they're nerves. And sometimes we can conquer them.
     Later when we went trick or treating thru town at the local shops we saw many spooky, creepy, gruesome and scary costumes. I tried to play it cool(even though I'm very afraid of scary things). The fact that it was day time and I was the only adult with my girls, forced me to really act cool. Amaya kept pointing out the ones that scared her, at times she'd ask if we could avoid them. I reminded her that they were people dressed up, just like she was. I later had to remind myself that very same thing, when I saw Michael Myers(from the Halloween movie) starring in my direction. Before I went into full panic mode, I had to remember that even if it was him, he wouldn't try to kill me in front of all these people in broad daylight, would he? I don't know, I've never seen the movies.
     Amaya has one reccuring fear that she just can't shake. And even though we seem to calm and reassure her, it still comes back. She has a fear of dying. It all started around the time she went in for her surgery. Which I understand, but I hoped that it wouldn't have stuck around. It's not often, that she brings it up, just every once in awhile. For instance the other night on the drive to Las Vegas she told us that she never forgets anything (that's pretty true) even dying. Her dad said "dying? How can you remember dying if you've never done it?" "Well that I'm afraid of it, that's what." And it reminded me that somewhere inside of her, she has this fear. Perhaps it's still looming, since she knows she has another surgery coming up. I'm not sure. We talk to her about it, calm her, reassure her, are honest, and answer her questions. That's the best we can do, although it does sadden me.
     I'm glad that it isn't debilitating or affecting her life;it doesn't limit her, affect her sleep or eating. It's just there. I'll just continue to give her the information, love and reassurance she needs.

A pop and an ouch

      Tonight Amaya was cuddling up to me on the couch as we watched some television. She moved her body then I heard a "pop" from her left knee followed by an "ouch." This is the first time I have heard her knee pop since she had the super knee procedure done in January. This is the first time, ever, that it's been followed by an "ouch." I don't like to hear "ouch" coming from my girls. Her knee use to pop quite often. We didn't know why or what was causing it until she was several months old. Her doctor at the time told us that her knee was dislocating, hence the popping sound we heard. She said that it didn't hurt Amaya. Her second orthopaedic told us that we had to be careful because all that "popping" could damage her knee. That's when Amaya began to wear a knee brace. When Dr.Nelson did the super knee in January and actually got to go in and see the knee, he could see that Amaya was missing all the ligaments in her knee. That's why her knee would dislocate, that's why it would pop. Often children with PFFD have weakened or missing ligaments in the knee. If she was up she'd usually end up falling or tripping or losing her balance. If she was sitting or laying, it would pop and that was that. We all became quite use to it.
      We started hearing the "popping" when Amaya was a day old and heard it up until January. So to hear it now, after ten months without it, was quite of a surprise for me. But, what I'm most surprised and unhappy about is the "ouch" that followed it. I'm not sure what this means, but at least we already have an appointment set with Dr. Nelson for less than a month from now.
     When I was putting Amaya to bed, and rubbing her leg I asked her some questions about the popping.
     "has it popped before?"
     "yeah"
     "how often does it pop? Every day? Once a week?"
     "once a week, sometimes, not a lot. It's when I move my leg in a funny way, or if I'm tired, then it'll pop."
     "does it hurt?"
     "I can feel my bones move, one goes above the other, and it hurts."
      Not exactly what I wanted to hear, but I'm glad she's able to clearly explain what she feels. What must it be like to feel your knee dislocate and have one bone move above the other? I don't know. I'm trying to stay calm and positive and wait to see what Dr. Nelson thinks about this.

Friday, October 28, 2011

Lion King

      This week we went to Las Vegas, NV to see the Lion King. It was a birthday gift for Amaya from her grandparents and us.  It was wonderful! She loved it and had a great time. It was neat to see her so moved by the music, costumes, set design and puppets. At the end she stood up and gave a standing ovation.  This was so cute to see, especially since she's usually a bit reserved.  Seeing her so happy made my day! 

In the lobby at Mandalay Bay waiting for the show to start. The side ponytail was her idea.

Me and Amaya in the lobby.


The excitement is building!
Lidie cruised the Strip with her dad and got to pick some M&M's from the M&M store.


Here's Lidie strutting her stuff.

Thursday, October 27, 2011

Pumpkin Patch

     Over the weekend we went to the pumpkin patch with some family friends. This is the fourth year we've gone with them, and it's nice to see how each child and family has grown over the year.  While we were waiting for them to arrive I noticed a woman I recognized and had not seen in almost three years. She was the ICU nurse that took care of Lidie when she was admitted to the hospital when she was only a week old.  As you can imagine it was one of the most difficult weeks of my life. Having Lidie be so sick and helpless at such a young age left me speechless and a bit lost. The nurse was so kind and gentle. I remember how sitting with her waiting and hoping for Lidie to improve reassured me and calmed me.  Not only did she take care of Lidie and provide excellent care to her, but she calmed my nerves and fears. At the time Amaya was three and Josh was spending all of his time taking care of her, so that I could be with Lidie. So, when I was in the hospital I was alone. 
      As soon as I recognized the nurse I was flooded with emotions; gratefulness, joy, pain. But, mostly just overwhelmingly thankful. I went up to her, introduced myself, hugged her and thru tears thanked her for all the help she had given Lidie and me. I was excited that she remembered Lidie! She asked how she was doing, and was happy to hear that she is doing great. She said I made her day, but I think it was definitely the other way around.
      Looking back at such a scary, painful time in our lives I'm reminded of just how lucky, blessed, and fortunate I am to have such a wonderful husband to help me get thru these tough times. His help, support, and calmness got me thru a seemingly impossible time. Along with the help and support of friends and family we have gotten thru many trying times.  I am thankful for all of those who have helped us in both big and small ways. And ever so grateful to the doctors and nurses who have taken such excellent care of both my girls. 



Amaya and Lidie climbed to the top of the hay castle. I love how Lidie is looking up at Amaya.

Amaya, Lidie, "cousins" Lilli, and Carter enjoying some silliness in a wagon.

Look at this flower we found. Amaya's middle name, Xochitl means flower.

Here are the girls with baby Mason. By this time next year he'll be walking around picking his own pumpkin. 
Thank you Czekaj family for a great day and your friendship!

Thursday, October 13, 2011

Aimee Mullins on the word disabled

    I watched a video yesterday called Aimee Mullins: the opportunity of adversity on TED.com for the first time. It moved me to tears. I appreciate how eloquently she talks about the power of words and how we label others. If you haven't seen it I highly recommend it. She talks about the word disabled, and how we label and view people who are disabled. Personally I like her definition of disabled a lot more.
     I had never heard of Aimee until yesterday. She is an athlete, actress, model and double amputee. She was born with  fibular hemimelia (she was missing her fibula bones) as a result both legs were amputated below the knee. The video is about twenty minutes long, but well worth your time. I hope you enjoy it as much as I did.
You can view it at http://www.ted.com/talks/aimee_mullins_the_opportunity_of_adversity.html


Reality setting in

     Although we've had Amaya's surgery set for quite some time now, it still feels a bit unreal. Perhaps because when we set it, it was so far away. In June we scheduled her next surgery; the lengthening procedure. October was the first date available, it would have been her first off-track session, and "good timing." But something about it felt too rushed. Just thinking of it made us anxious and nervous. And that's not how we wanted to feel heading into such a big procedure. Especially one that would take so long (ten months). Since there was no rush to do the procedure we decided to schedule it for next March, during her next off-track session. At the time it was ten months away and felt so far. The distance of it, was comforting and made it seem somewhat more bearable. Ten months seemed like a good enough time to transition and prepare for it. This would give Amaya enough time to adjust to her new school, and all of us time to adjust to new schedules and routines.
     Last week we received a referral from Amaya's primary doctor to set up a follow-up appointment with Dr. Nelson (Amaya's orthopedic surgeon at Loma Linda Children's hospital) and get x-rays taken. I must admit that while I was opening the letter I felt some tension rise up inside of me, maybe it's just a reflex now. I instantly remembered all those early x-rays that were so traumatic for Amaya and us. Where she would scream, cry and wiggle around. Her doctor at the time would end up taping her down to the table while three of us tried to hold her down. All the while she would cry out and beg "please, mom, please, help me. Please, stop." Oh it was awful, just awful. Seeing that referral reminded me of those painful early appointments we endured.  My eyes teared up at those early memories.
     It took me a few hours to call in and schedule the appointments. Which of course took three days to get scheduled (for referrals to be sent to the correct offices, etc.). We'll be seeing Dr. Nelson on November 17. At this time he'll have some x-rays taken and he'll get all the measurements he needs to plan and prepare for the lengthening surgery. He'll also be able to get a good look at Amaya's hip and decide what to do to correct it. These are the first x-rays she's had in a couple of years, so I'm curious to see what her hip looks like now.  We've never gotten a good assessment of what needs to be corrected in her hip. If you remember she was suppose to have the super hip and super knee surgery done in January, but Dr. Nelson decided the night before that she only needed the super knee. He did say that he would correct the hip when he did her lengthening surgery.  We're not sure what exactly she needs done to the hip or how he plans to correct it.
     So, I'm excited to get some answers, but feeling some anxiety and nervousness because of how quickly time is passing. We're down to five months left, which may seem like a lot of time, but I know it will pass quickly too. I am so glad that we decided to wait until March and didn't try to do it in October (it would have been in two weeks, on the 25th).  This extra time has proved to be quite helpful to prepare Amaya. She's had lots of questions, concerns and fears. And even though we've made a lot of progress in preparing her she still has so many unanswered questions, like we do. She asked her Dad last week if she we would have "a robot leg" and asked me if her fixator would come off like her brace did.  She still doesn't quite understand everything, which is normal. Some of the adults in her life still don't understand it either. That's why I'm so thankful for these next five months, where we can continue to reassure her, comfort her, show her other kids pictures and blogs and answer her questions.
     I'll make sure to post after we meet with Dr. Nelson in November. Until then keep sending calm thoughts our way; we continue to need them.

Thursday, September 15, 2011

Blogs

     After my last talk with Amaya (see previous post) she asked if she could look at other kids blogs. I found several for us to look at together. Some of children, some adults, some are younger than her, some older, some more severe, some not. But each has a common journey. We looked at each blog and gained inspiration, comfort, and friends. Amaya would look on with great compassion and empathy for each child. She asked how many surgeries they had had, how old they were, what else they would need to do. It was nice to see her worries be eased, questions answered and to see others just like her.
     I am so thankful to the parents who create and update their blogs. They have given me helpful information, hope, comforted me, and guideded me. I frequently read and reread these blogs. They make this journey a little bit easier, by giving me the comfort and support that only someone who truly knows what your going thru can give. So again I say, thank you. Thank you for your time, your honesty, your advice, and your willingness to help. I can only hope that my blog does the same for someone else. It certainly serves as a therapeutic release for me, so thank you for reading these thoughts, vents, rants and words.

At bedtime the other night

     As I laid In bed rubbing Amaya's leg and singing, I started to rub her other leg. She asked me "Mom, why are you rubbing my right leg?" "Because I love both your legs," I said. "Can you rub my left leg instead?" "Sure" I said, "Why?" She answered with "because it's my short leg and needs lots of love." "Of course" I said and continued to rub her leg. A few minutes later she sat up and said "Mom, I don't think I'm ready for my next surgery. I think we need to wait until November,19. I'll be ready by then. Or maybe when I'm six and a half, definitely by then." I reminded her that it's okay to be scared. But, inside I'm sad to know that she worries about this so often. I wish I can take her cares and worries away, but I can't. I can't even take my own away.
     After a few minutes of comforting her, she said "Mom I'm so lucky, I only have to have two surgeries." I'm glad that even though she is dealing with her own fears, she is able to keep some perspective and remember that she is not the only one dealing with this. And her empathy for other kids is heartwarming.
     I reassured her that her surgery won't happen until she's six and a half, that she can do this, she will be okay, and we will be here to help her. She started to list all the people that would help her; her parents, family, friends, doctor, teacher, classmates and dance teacher. I'm so thankful for all these people whom she can count on, thank you all.

Monday, September 12, 2011

Ballet

     Today was Amaya's second ballet class. After the first class her teacher pulled me aside to talk. She showed me how she taught Amaya to stand. She had her shift her hips forward so that her hips would be level. When she's in ballet shoes, without a lift, her left leg is shorter than her right one and doesn't touch the floor in the same way as the other. That's the same issue we have when she tries to wear any other slip on shoes. That's why I always push for her to be in her shoes with a lift. Her teacher's suggestion would help keep her hips and back aligned while she's in her ballet shoes or any other flat shoes.
      I was touched by her teachers kindness and willingness to help. I appreciate how she acknowledged it and dealt with it in a tactful, kind and professional way. It's been nice to see Amaya meet new girls who live in our area, to try something new, and to push herself. During ballet Amaya does a lot of exercises, stretches and balance work that is similar to what she did during physical therapy. She's also going to be performing in the Nutcracker this year as a gingerbread. In a few weeks, in addition to her weekly class, she'll also have a weekly practice. Although it'll be busy for a couple of months it's a nice distraction before the surgery. And this will be one more thing that she CAN do. It's so important for me that she and others believe that she CAN do anything.

Tuesday, September 6, 2011

Bedtime routine

     Over the last couple of weeks we've made a minor adjustment to our bedtime routine. I usually lay next to Amaya and rub her head and sing until she falls asleep. A few weeks ago Amaya asked if instead of rubbing her head if I would rub her left leg and scars. I was kind of surprised when she asked me to do it. I wondered "do I not rub it often? Or enough?" I rubbed it and have been ever since. I try to not only rub it at bedtime, but also during the day. It's such a sweet little leg.
     As I rub it I realize that sometimes I've been a bit hesitant to rub it. I was afraid to hurt it or make it uncomfortable for her. Her leg was sore after her surgery in January and I tried to not bother it. It's so nice to be able to rub it. I try to take advantage of every chance I get to rub her leg, because I realize that my time to do so is limited. In about six months she'll have her lengthening surgery and have a fixator on for ten months. I'm not sure if I'll be able to rub it during that time. So I'm going to take advantage of it while I can.
     Speaking of scars, I'm always amazed at how big her scars are. She has one on her upper thigh that's about four inches long and then one that starts above the knee goes over it and makes an "s" shape. That one is about eight inches long (these are from the super knee procedure she had done in January). They look so big on her leg, (she's only about four feet tall). I'm amazed at what she's endured, overcome and survived. She's amazing.
     Another great addition to our bedtime routine; after we say "I love you" she responds with "and you love my little leg." "I do, very much," I say. Then I just smile and hold in my tears.

Friday, August 12, 2011

Sarah Reinertsen

     I just finished reading In a Single Bound: Losing my leg, finding myself, and training for life by Sarah Reinertsen. I had never heard of Sarah until a few weeks ago when someone posted a you tube video of her on the PFFD facebook page. The video moved me to tears. If you haven't seen it I highly recommend it.  It's only a few minutes long, but very inspirational. I googled her name and found her website and her book, which I ordered that same day and read in about a weeks time.  Sarah is an athlete who regularly competes in marathons, bicycle races, and triathlons. She was born with PFFD and had her leg amputated at age seven.  It's a great read especially for a person or parent of someone with PFFD. It was nice to read her perspective as she grew up with and dealt with PFFD, and an amputation.  I appreciated her honesty and her spunky/feisty spirit.  She's a great role model for me, and my daughters.
    Another thing I found were the Sarahbears that she created. It is a teddy bear with an amputated leg, and it wears a prosthetic. How great is that?  I'm sure it would be a great comfort to a child who also has had an amputation or wears a prosthetic. I'd like one for my girls, because it's important to build tolerance and acceptance at a young age.
     It's funny even though I've finished the book, I just can't seem to put it on a shelf quite yet. It's still sitting on our coffee table, as a visual reminder. I like seeing it on a regular basis, reminding me of Sarah's courage, honesty, determination, and strength.

Tuesday, July 19, 2011

Today was kind of a rough day

     Well today was kind of a rough day. As we were getting ready to go Amaya was stalling and not putting her shoes on. After a few reminders she finally went over, grabbed her shoes, put on the right one then began to cry. She quickly became overcome with emotion and tears. She let out some of her feelings, frustrations and fears. Some for the very first time.
     She began crying and fell to the floor in a fetal position and rocked. I watched her and tried so hard to keep it together(this took every ounce of self control and strength that I had). She began to say ..."I don't want to wear a lift. I'm never wearing one again. I just want two flat shoes. Lots of shoes, like everybody else. I don't want a shorter leg. I don't like having a shorter leg. Why do I have to have one? I just want to be like everybody else! I'm scared to have another surgery. I don't want another surgery, one was enough. Why can't I just have one?" I sat next to her, cried with her,listened, and rubber her leg. I began to explain to her that nobody is "just like everybody else," we all have things that make us unique. I explained that even though wearing a lift can be a pain, so is a retainer, or glasses, or hearing aide or being in a wheelchair. I reminded her that other people struggle with other stuff that they don't necessarily enjoy doing. I also reminded her that it could be so much worse. Not only could she have another more serious disease, but her PFFD could be more severe(she has one of the mildest cases). I let her know that other kids with PFFD have also had to go thru what she's going thru, that some have had more surgeries, many more. And that in the scheme of things two isn't really all that bad. I told her how the first surgeon we met with when she was only a few months old recommended four surgeries and that we were so lucky to have Dr. Nelson who could correct it in two. I also told her that it was okay to be frustrated, and upset and not want a shorter leg(this seemed to allow her to relax, almost like it gave her permission to be feeling what she was feeling). I admitted that I didn't want her to have a short leg (even though I love and accept her just as she is), or to have to deal with any of this. I reminded her that she isn't in this alone. Josh, Lidie and I are here to help her every day for the rest of her life. We're going to help her get thru this surgery and every other challenge that comes her way (she smiled).
     During all of this, Lidie sat so sweetly next to Amaya, rubbing her back and singing Born This Way. I'm amazed by the empathy and compassion of my two and a half year old.
     After a few minutes Amaya said, "You're right mom, two surgeries are better than four. I'll have my other surgery. I love you mom." This was followed by a hug then she calmly put her shoes on and was ready to go. Just as quickly as it came, it was done.
      I felt so sad and helpless. It was so hard to see her this way. She's never once said that she didn't like her leg or that was shorter. She's never once questioned why she had PFFD. Maybe its because as she gets older she's able to think on a different level, or wonder, or maybe she's more aware of the world around her. I just don't know. I can't imagine what her little almost six year old mind must think and feel. Today I got a glimpse of it. I was so glad that she was able to let it out and not hold it all in. I'm amazed by her ability to speak so honestly and to clearly express what she felt and thought.
     I was so glad that after her venting was over she was able to accept things and move forward. She's just amazing.
     I don't think others realize that when people(and their families) have a disability, it's something that they deal with on a daily basis. It's hard, all we can do is offer love, help and support.

Sunday, July 17, 2011

Summer Claus

     This morning we got up early, got dressed quickly and headed out the door by eight twenty so we could make the forty minute drive down to the Loma Linda Children's Hospital in Loma Linda.  This was a fun visit, no surgeries, no IVs, no over night stays, nothing.  It was the fourth annual Sons of American Legion Christmas in July Motorcycle and Car Show.  The girls were so excited that Santa would be coming to the children's hospital. I was glad to have time there that wasn't scary for the girls.
     As we waited we ran into some old neighbors. Both their boys were born with a heart defect and both had their  surgeries at Loma Linda.  Both boys looked happy and healthy and had recovered well. Aside from yearly check-up's they've recovered and moved on.  In some ways I envied them; I wish that Amaya's birth defect (did I mention that I hate calling it that. Even though I know that, that is what it is. A random birth defect. I still don't care for the term) was something to quickly correct and then move on from. I know that her condition is something that has and will affect her for quite sometime. I know it's not devastating, or debilitating, but I wish I could spare her from it all.  But, as I sat stood there with these thoughts, I noticed the other families. I saw other children who had other, more severe illnesses, defects. Each child, and family has their own struggle.  So I accepted ours for what it is; grateful that it isn't worse.
    We waited patiently for Santa to be brought in on the back off a pick-up truck filled with toys. He was led in, not by reindeer, but by several motorcycles. When we heard the roar from about a block away we were all excited.  He was in his "summer gear;" a red hat, shorts, sandals and a red Hawaiian shirt.
    As I watched Santa pull up, the motorcycles park, the classic cars park (some had hydraulics and "danced" and "hoped"). I was overcome with emotion and deeply touched by the kindness and generosity of strangers. None of these people knew Amaya or any of the other patients, yet they gave up their Sunday morning, shared their cars and donated gifts.  I hope they know how much they brightened the day for so many kids and their families.
     Both girls chose Barbie's and were so excited to have them opened up right away. Amaya and Lidie both went back and thanked Santa again for their gifts.  Josh also made it a point to thank one of the women who helped coordinate the event. We were both so grateful for an opportunity to take some of the fear out of the hospital. Amaya's next surgery is about eight months away and she sometimes mentions, being nervous or scared. I can't say that I blame her, but we want to help her be as calm, relaxed, and unafraid as possible.  That's why events like this are so great.
    It was interesting to me that both girls really wanted to go into the hospital. We did and had some snacks at the cafeteria. Amaya led me to the table where Josh and I sat about seven months ago while we waited for her to get out of surgery. That was such an emotional time. I remember not really being able to eat, starring off and crying.  We had a pager that the hospital provided to us give us updates from the operating room, and we both looked at it so often.
     And now here we were seven months post surgery. Grateful that the superknee procedure was so successful and gearing up for the next surgery (where she'll have her femur lengthened, her hip corrected, as well as the knockedness of her femur corrected). We feel a bit anxious, nervous, scared and hopeful.  Very hopeful.



  

Tuesday, June 28, 2011

Dictated by Amaya

"I was scared, but not anymore. About getting the other surgery and taking the medicine too. The medicine I had to take last time that helped me and the IV too. And I like that the doctor helped me and I really like that my mom made a blog for me."

A conversation between sisters

     I overheard the girls talking this morning. Lidie sat next to Amaya as she was going potty and asked her, "you got owwies Amaya? Are you okay?" Amaya responded, "yes Lidie. I have one short leg, and one long leg. And I didn't have any ligaments in my knee, so my doctor put some in. That's why I have that scar, that's where he put it in. Do you wanna touch it? And guess what Lidie, I'm gonna have another surgery, and I'm gonna have a robot leg and then people can sign my cast. And I'm gonna ask my doctor if I can see my x-rays and keep the robot parts when he's done. It's gonna be cool!" To which Lidie responds, "I'm gonna have surgery too!"
     I was so glad that I was able to overhear such a conversation. Something about how calm Amaya is when she explains her condition and her treatment that always makes me smile. And it's so sweet how kind and compassionate she is for the other person. She told Lidie, "it's okay sweetie, I'll be fine, don't worry, it doesn't hurt me, I'm okay." She always tries to comfort and console others. I'm always amazed by her understanding and compassion. Times like these reassure me of her ability to handle all the challenges that will come her way. And if she can do it, so can we.


Here are a couple pictures of the girls.

Sunday, June 26, 2011

Interview with Dr. Paley

     I just added a link under the link section titled "interview with Dr. Paley." I found it on another blog that I follow, Daniel's Steps.  The link goes to an interview conducted with Dr. Paley last February.  Dr. Paley is an orthopedic surgeon who has pioneered many treatments for PFFD including the super knee procedure that Amaya had done this January.  He does most of the lengthening surgeries in the country. Many people travel from other states and other countries to seek his opinion and treatment. He's located in West Palm Beach, Florida.
     The interview focuses on the lengthening procedure and gives lots of information about the process (which we will be doing next spring with Amaya). If you get the chance I highly recommend reading it, especially if you or your child have PFFD.

Dolphin Tale

    We went to see Cars 2 on opening day and saw a preview for the movie Dolphin Tale. It's based on the true story of Winter, a dolphin who lost her tail when she was three months old. Winter got separated from her family when she got entangled in a crab trap. She lost her tail and was adopted by her "forever family" then had a prosthetic tail made for her. I was immediately excited to see the movie, I'm a sucker for movies based on a true story or loosely based. Either way I enjoy them. But this one really got to me.  As I watched the preview I got teary eyed. I thought of all the children who've had to wear prosthetics and the journey they have gone on.
     I thought of my Amaya and her journey. I remembered all the things she's worn throughout the years to help her. Countless shoe lifts, a Pavlik harness at two weeks old, a neoprene knee brace, a custom made ACL knee brace. Not to mention her surgery, the cast and wheelchair that helped her recover as well as the hours of physical therapy.  Her journey is like many before her.  I wasn't so much sad as I was grateful for all the help that she's gotten along the way. And grateful that although her disability is a real one, it is something she can handle.





    Here's some photos of Amaya and her lifts, braces, cast, and wheelchair.

Monday, June 20, 2011

March 6th

     Well we set Amaya's surgery date, for you guessed it, March 6, 2012.  When Dr. Nelson's nurse called last Wednesday to schedule Amaya's surgery my heart tightened.  I feel like the past six months have flown by and we've been in survival mode. The thought of two surgeries within a ten month time frame seems so rushed and hectic.  Josh and I had been discussing it with Amaya and trying to decide when is the best time to have it scheduled.  Her surgeon said that there was no benefit to doing it now or waiting until spring. He said to plan for the "best" time for us since it will be so time consuming (weekly and bi-weekly follow-up appointments, daily physical therapy). Our first thought was to do it in October when Amaya goes off track for the first time.  Then we thought about March, during her second off track session.  Although both times had some pros and cons (weather, giving her time to adjust to her new school, new routines, the thought of the new surgery, giving us all time to recover, etc.) we decided to go ahead and wait until March.  This will allow her time to adjust to her new school, participate in the Nutcracker ballet, and enjoy part of her first year of school.
     This has been such a tough decision for us. Part of me wishes that we didn't have a say in it, that her doctor would say this is the day were doing it, then we would just deal with it. But having to decide to schedule a surgery for your child (it would be so much easier if it were one of us having the surgery) is not easy. Is there really a "good" time? How about never?  Although I know that Amaya will benefit from the surgery, I do not want her to suffer. How do you answer her when she asks, "Mom, will it hurt?" The answer is yes, it will hurt, it will be uncomfortable, it will be frustrating, and time consuming and challenging for you and us, but you will do it and do excellent.  It's hard trying to explain all of this to a five year old.
     The best we can do is prepare ourselves and her. We've begun to show her pictures of other kids in their fixators, of them at physical therapy, and after surgery.  We remind her that we love her and will help her thru the whole process and that she's not in this alone.  Which she always responds with a sincere "thank you, Mom."  I know that she will do fine, but my heart just wants to protect her from any pain. That's one of the hardest parts of motherhood, not being able to keep your child from pain.
   But this morning as I called Dr.Nelson's nurse to schedule the surgery I was calm and at ease. I know it will all work out.  Amaya will do great. She will be better because of the surgery.
    The date may change though, since he hasn't scheduled his vacation times that far in advance yet. We're in the books for that date, but may need to adjust it to accommodate his vacation. His nurse says that he usually takes a three week mission trip in the spring, and she didn't have those dates yet.   But, we will just deal with it when the time comes.

Thursday, June 9, 2011

Bye, bye physical therapy (for now)

       Today was our last session of physical therapy.  I say "our" because even though it was Amaya who was there for therapy, Lidie and I also went along too. Lidie was such a trooper. She provided comic relief, distractions and lots of praise and encouragement for her sissy.  I can't believe how quickly that time went by!  We were so fortunate to have two great therapists working with us. Beyond helping Amaya and teaching us new exercises. They also made us feel welcome and helped include Lidie in the therapy. I'm fortunate to have been able to be there with her for each of her sessions.  It's been great seeing Amaya push herself, try new things, and get stronger.  I've learned several exercises and techniques that we will continue to put into practice at home.  And if I forget, I can always call Cassi up (thanks again, for giving me your number!).  We were fortunate to have Tia Amanda come along for our last session. She was able to see first hand what our sessions are like; it's always nice sharing parts of our lives with others.      
      Leaving was a bit bittersweet. It's become such a part of our routine for six weeks now. We will all miss seeing Cassi and Jay on a regular basis.  Although, Amaya did make sure to invite them to her birthday (even though it's about three months away).  The girls really bonded with them.  Amaya wrote cards for each of them, thanking them for their help.  She's very thoughtful, and realizes that they truly are helping her.  After our session we got frozen yogurt to celebrate!
      After frozen yogurt it was time for our follow-up appointment with Dr. Nelson.  By this point Lidie was getting very squirmy. She had missed her nap and I was SO thankful to have Amanda there to help distract her.  This is the first appointment that Josh couldn't be there for, so it was nice having Amanda there to "fill in."  Thank you again Amanda!  After a short wait, a physicians assistant came in and examined Amaya and checked her leg.  She was unfamiliar with Amaya and her condition, so I was having to fill her in on the past few years.  After a few minutes she went and got Dr. Nelson.  As he entered Amaya handed him a card that she wrote for him.  It was short and sweet; she thanked him for "helping me" and let him know that he is "very smart."  He thanked her and said that he would keep it forever.
      He examined her knee and asked how she was doing, how therapy went, etc.  He was quite happy with her recovery.  It still amazes me when he pushes on her knee and it doesn't pop or dislocate. It's pretty amazing!  It's been six months and two days since he performed the superknee procedure on her. Wow.
       He said that from his perspective "biologically and psychologically" she is ready for the lengthening surgery.  "I think she'll do great" He said, which helped calm my nerves.  It's just a matter of when we would like to schedule it.  He's booked up until September so any time after that would work for him.  During the surgery he will do three things; lengthen the left femur, realign the femur (it's a bit "knocked" above the knee) and correct the hip (what he had originally planned to do in January).  He believes that she will only need this surgery to lengthen the leg and correct the femur and hip, but did say that she may need another surgery later on to "stunt" the growth of the normal leg.
     The actual lengthening will take about three to four months (they lengthen one millimeter a day), but the fixator will remain for another six months to stabilize and give support to the leg.  Once the fixator is put in she will have physical therapy for one hour a day Monday thru Friday.  We're not sure how long her hospital stay will be, but he hopes that she'll be able to return to school and be mobile in about four-six weeks.
      So now, Josh and I have some planning to do and decisions to make, because in a few short days Dr.Nelson's nurse will be calling to schedule the surgery.  Once we have the surgery scheduled we'll make an appointment to see him one month prior to the surgery where he'll take x-rays and measurements.
      So today we said goodbye to physical therapy, but only for a short while.







This was taken on our last day, and we are all smiles!