amaya at lake

amaya at lake

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."