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."

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.

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.

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!

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.