amaya at lake

amaya at lake

Wednesday, December 18, 2013

Maybe not the fastest, but certainly the toughest

     We started doing therapy stretches again this week. Since Amaya had complained that she was frustrated and disappointed with being "the slowest" at school I decided to start her therapy again. I pulled out her old therapy bands and started with a couple of stretches that I remembered off the top of my head. Its funny but once we started, I started remembering more stretches as we went along. Its funny I don't think I forgot any of the therapy work Melissa taught us. Melissa you're an excellent teacher! Thank you. 
    Amaya is awesome. When I told her that I wanted to start doing therapy stretches again she spent no time complaining or asking why. She simply said, "okay." And did her very best. She did everything I asked and has done stretches every day this week. She's so cool! One thing she knows is that therapy pays off. She's seen first hand how hard work pays off. And so have I. 
     It makes my job so much easier when she's willing, and cooperative. Each day I have her do a couple different stretches so that there's some variety. It takes only a few minutes a day, but I know that these few minutes will add up and help strengthen her muscles, help her to become stronger and improve her gait. One of our "fixator friends" Alison (who's now in college) wrote us to remind Amaya that she "may not be the fastest, but she's certainly the toughest at school." I wish you could have seen the smile on Amaya's face when I read that to her. Alison also gave us some suggestions that helped her when she was younger (like swimming). Amaya was happy to hear the suggestions and looks forward to trying them when it warms up. 
   I'm so grateful for Alison and all our fixator and PFFD friends. They make this journey so much easier. A big thank you to all our friends, your kindness, compassion and friendship help us get threw the tough moments. 
I used the bands (these are the ones she used at therapy and Melissa had given us to use at home) for resistance. You can see the tape on her heel in this picture. I tape her heel every morning before school. It helps cushion her heel and help the healing process along. 
While on her tummy she lifts her left leg off the ground ten times with a straight leg and ten with it bent. I usually hold her hips down so they don't lift off the ground, like they are in the picture. 

Here she is doing pelvic lifts. I have her do ten of these and on the last one hold it for as long as she can while squeezing her butt muscles. 
     Here's a current picture of her heel. Some of you have asked what it looks like now. Here it is. It's a bit dry so we add lotion to the area once a day. Its about the size of a quarter and looks like a blister, but without any liquid in it. Its mushy to the touch, but doesn't hurt her when we touch it. Although it is sensitive.  

Saturday, December 14, 2013

10th Annual PossAbilities Dinner

    Last Sunday we got to attend the 10th Annual PossAbilities Dinner. This was the second one that we've attended. It's put on by PossAbilities for members and their family and friends. PossAbilities offers a free membership to people with any type of disability. Currently there are over 4,000 members. They offer many programs including; adaptive sports, education, social activities, support groups, grants and scholarships (they awarded over $50,000 to members. Isn't that awesome?!), peer visits, arts and crafts, and a yearly triathlon (Amaya participated in her first this year and both her and Lidie will be participating in the upcoming one in April 2014).
   On the drive over Amaya said, "I love the PossAbilities dinner. Because I love being with people who've helped me." And that pretty much sums up why I love PossAbilities. Because they've helped Amaya and our family in many ways. Amaya has been a member for almost two years now. She's attended swimming lessons, swim parties, art classes, used the discount at the hospital cafeteria (many times), made friends, participated in her first triathlon, enjoyed the children's Christmas party, and we all enjoy reading the quarterly newsletter. As a parent its encouraging and helpful to be around such kind people who work so hard to offer resources to Amaya and many others. It was sweet to hear Amaya recognize the help she's received these past few years. She's grateful and recognizes the efforts of people around her. That makes me a proud mama.
    One of the highlights of the evening for me was when a speaker talked about the difference between a disabled person and a AB person. An AB is an Able Bodied person. He awarded Cotie Williams, the program coordinator at PossAbilities, an award for all her help and for being a person who "gets it." He called her a rare treasure for truly understanding the difference between a disabled person and an AB person. When you meet someone who sees you (or your child) and treats you as a disabled person you know. It isn't fun. But when you meet someone who sees you as an able bodied person, well that truly is a treasure. We are so fortunate to have so many treasures in our lives. Amaya is very much an Able Body! And I'm grateful to all who see that in her.
      On the drive home we talked about the event and our favorite parts. Amaya said she was so happy she got to go. Amaya said she liked hearing people get awards and the Hall of Heroes award. At therapy the Hall of Heroes pictures line the wall. We glanced at them each time we went in for therapy. They are such an inspiration to us. It was neat to see so many people get scholarships and grants. We enjoyed the slide show highlighting the years events as well as the new commercial for PossAbilities. It was nice having both sets of grandparents join us for the dinner. It was nice to share the event with them and to celebrate their love for the girls.
   It was Cotie's birthday that day so we all sang her happy birthday. At the end of the event Amaya wanted to go up and say hello to her and wish her a happy birthday. It was great to see her and another chance to thank her for her efforts and kindness. Her and Pedro do so much to help so many.
    As we drove home we had an interesting conversation. We had been talking about the upcoming children's Christmas party. We reminded Lidie that only members of PossAbiities will receive a present, but that Amaya would be getting her a gift. Lidie got upset and said she wished she had a disability and was "just like Amaya" so that she too could be a part of PossAbilities. Lidie got even more upset when Amaya told her "I'm glad you didn't." With a loud "hey!" Lidie let her feelings known. She added, "Amaya wishes I wasn't like her." Amaya tried to explain that she wouldn't want Lidie to have to go through the surgeries and therapy that she has. She doesn't want Lidie to have to deal with the pain and trials. But Lidie, being only five doesn't understand. Trying to explain to her why Amaya would want to spare her the surgeries was tricky. Because there is nothing wrong with being "just like Amaya" or having a disability. I'm proud of Amaya. I love Amaya. I love her short leg. I love her PFFD (in a bittersweet way that I can not explain). But, wanting to be like Amaya just to belong to PossAbilities or to get a gift isn't a good reason. But, somethings are hard for anyone to reason and understand, especially a five year old.
     Below are some pictures from the night. If you'd like more information on PossAbiliites you can visit their website http://www.teampossabilities.org
     Thanks again for reading along.

The girls anxious to enter. 

Here's my dad and I enjoying the evening. 
Here's Josh and his dad, Jerry.
Here are my parents, Bobby and Lucy.
The girls enjoying time with Grammy.
The girls wanted to pose for a picture with the gingerbread family. I'm not so sure about their poses.
 These girls are silly! Just look at Lidie's face!
Amaya was pretending to whisper to Santa, and Lidie made another "cool" pose. 
I wanted to get a picture of Josh and I and this is what I got. 
Lidie loved the decorations and centerpieces. Especially all the oink decor. 
She was so happy she got to keep the centerpiece.
Here's one of my favorite pictures of the night. Its the girls with both sets of grandparents. 
Here they are with Josh's parents, "Paco and Grammy".
Here they are with my parents, "Nana and Grandpa Bobby."

Wednesday, December 11, 2013

Upcoming appointments

     A few weeks ago the girls had their yearly check-ups with their pediatrician. It was a great visit. I'm happy to report that both girls are healthy and thriving. While we were there we got a visit from Marilou. She is the referral coordinator for the clinic where the girls are seen. But through the past few years she's become a friend of ours. It's funny because last year during Amaya's lengthening I would talk to her on a weekly and sometimes daily basis. But now that things have settled down a bit I can go months without talking to her. Occasionally I call just to check in. I do miss talking with her. So we were so happy that we got to visit with her for a few minutes. She was very kind and encouraging to Amaya and Lidie.
    The girls pediatrician was happy with how the girls are growing and how Amaya has recovered. Its nice when others see the growth and development in your children. Especially in Amaya. She's recovered not only from her lengthening but from her rod removal as well. She's recovered so much and is doing so well. The pediatrician gave us follow-up referrals to go see the wound care doctor and Dr. Nelson, Amaya's orthopedic surgeon.
    It took about a week or so for the referrals to come and this morning I just finished scheduling the last appointment. In January we have an appointment to see Dr. Nelson. He'll be taking new x-rays and getting new measurements to see Amaya's projected discrepancy. We also want to mention a few of Amaya's complaints to him. Lately her knee has been popping and hurting her. When it "pops" its because it pops out of place and you can hear it quite loudly. Its disheartening to hear her bones pop, its something I've never quite gotten use to. And its sad that she gets pain from it. We massage her knee, which helps her, but she refuses any pain medication and says she can handle it. She's one tough cookie. We also want to mention that Amaya says she feels "un-level." This is the first time she's complained about this since her lengthening surgery. During her surgery she grew 3.1 inches in  femur and her left leg (her PFFD leg) was slightly longer than the right one. But she's gone through a growth spurt since then and she has a hard time saying which leg feels longer, just that she feels unlevel. She also complained to Josh that she's "the slowest one" at school. Its sad to me, because she's comparing herself to non-PFFD kids. Kids who haven't gone through surgeries and therapy just to get to where she is. I wish I could help her see her strength, courage, and resilience. But, when you're eight, being the slowest isn't fun. I get that. Josh and I notice and think that part of it can be from her walk. At times she reverts to a skip-hop type of walk, especially when she's trying to go fast. She picked up that bad habit while she had her fixator on. It was easier then to hop on her right leg and swing the left one to "run," but now she's continuing it. Josh and I are wondering if maybe some therapy would help her or adaptive PE at school, or a combination of both. She still has some atrophy in her left butt muscles which can be contributing to it as well. We were doing therapy homework exercises to help work on those muscles. I'm going to begin doing them again with her to help strengthen them. Melissa, Amaya's therapist, had said that the atrophy had affected her gait. We stopped the exercise when the rod was pushing out of Amaya's femur and bothering her. But now that its out and she's recovered from that I think its time to start again.
        In January she'll also be seeing the wound care specialist to follow up on her heel. She still has a blister, mushy, type area, about the size of a quarter. We continue to tape the area every day with special tape to give it support and help it heal. We saw the specialist about six months ago and he wanted to see her again to see if the area was continuing to heal and to re-measure it. When I called in this morning the nurse and receptionist remembered us. The receptionist said, "oh, you've got that little gal!" The majority of patients there are seniors and since Amaya is so young she stands out. I'm looking forward to going, to hopefully hear that the area is continuing to heal. Its sad and frustrating knowing that were going on two years now and the area is still there and unhealed. According to the last estimates from the specialist, we've got another 2-4 years for it to fully heal. I can't tell you how incredibly frustrating and hurtful that is for Josh and I. But, all we can do is continue to tape her heel day in and day out, make sure she wears her heel pillow at night and the boot they gave her.
    I'm looking forward to the appointments and to seeing her doctors. We're very fortunate that Amaya receives such quality care from such kind doctors and staff.

Friday, November 29, 2013

Thankful

I'm celebrating Thanksgiving in Phoenix, AZ with some of our family. I began thinking about Thanksgiving and what I'm thankful for. Just for kicks I looked up the word thankful in the dictionary. Here's what I found. "Thankful: conscious of benefit received." I have received many benefits. I am truly thankful and grateful for each and every one of them.

On this day I'm thankful for Josh, my loving partner who brings joy to my life and can always make me laugh, even in the most trying of times. That's a rare gift and I'm grateful for him. He has a depth of compassion, patience and love.

I'm thankful for Lidie, our spunky five year old, who makes me laugh, is sweet and kind.
I'm thankful for Amaya, our old soul, who is brave and kind. I'm proud to be their mother. I'm grateful that I'm able to watch them grow, for the kisses I get and the lessons they teach me. I'm thankful for how close and connected our family has grown these past few years. Our little family of four is stronger. And I know that, that is a special thing. We've survived and emerged through love.

I'm thankful for my family: who've helped me grow, taught me to be kind, generous and resilient. They've given me a rich culture to share with my girls. I'm thankful for family who's near and far. Some in Mexico, some in New York, some in Michigan, some in North Carolina, and some in New Mexico. Distance doesn't stop the love. I'm also thankful for all our family who've helped us, and encouraged us these past few years.

I'm thankful for the job I have. It gives me the opportunity to help others. I'm also grateful for the co-workers I have that help pass the days with laughter and whom I'm proud to know. It's a great treat to  work with genuinely kind people who want to help others.

I'm thankful for the friends we have.

I'm thankful for our PFFD friends, and allies throughout the world.  We've "met" many online and have actually been able to meet some in real life these past couple of years. These special friends have given help, advice, compassion, empathy and support. Their kids have given the greatest gift to our girls: acceptance and understanding.

I'm thankful for the quality care Amaya has received these past few years. And for Dr. Nelson who is as equally skilled as he is kind. And for our therapists who's help and work I'm grateful for each time I watch Amaya climb and run with ease. I'm thankful that Amaya recovered from her fourth surgery (this summer) with ease; she's pain free, comfortable and recovered. I'm also thankful we get a break from surgeries for a few years, very thankful. I'm thankful that although Amaya still has her bed sore on her heel, it's under control and being treated.

I'm thankful for medical  insurance that covered the costs of her surgeries and follow up care. I'm thankful for how far Amaya has come. For her heath and strength.

I'm thankful for you, the reader, who takes time out of your busy life to read about Amaya and her journey. With the struggles, the joys, the highs and the lows. Thank you for allowing me to vent, and for the kindness you send to us. Thank you for your love, concern and compassion.

Monday, November 18, 2013

The word that hurts my heart

I've had this blog post brewing in my mind for quite some time. I started notes about it over a month ago. It was painful to write, and I couldn't bring myself to finish it or post it. But now that some time has past I'm finally ready to. At least I think I am. So here's my notes that I started six weeks ago... 
"Eight years later...still can't get use to the word "deformity." Hard to swallow. My brain understands it. But my heart hurts. It stings my ears and cuts my heart (yes I realize that's a tad dramatic). But ever since Amaya was ten days old I've heard words like defective, abnormal, weird, different, etc. those words hurt.
And I cannot talk about or blog about this without tear filled eyes. It's something I struggle with...coming to terms with the language and the feelings they evoke. I know medically PFFD is an abnormality, a birth defect. Yet it hurts because it's not PFFD that's defective. Is implying that my child is defective. And she isn't."
I'm not sure how to end this post. I've tried to make peace with the word deformity, as well as other words. Yet, eight years later I still struggle. I think mostly it is because when you talk about PFFD and it being a birth defect or a deformity, you not only talk about it but about the person who has it. And it's hard to distinguish the two: that the PFFD is the abnormality not the person. And that even though their leg is "deformed" they are not. And as a parent it's hurtful to have any word like that associated with my child, even remotely.  My brain and heart have a hard time seeing eye to eye on this issue.

Thanks for reading along and letting me vent. And for seeing Amaya as more than a child with a birth defect, or limb deformity.

Sunday, November 17, 2013

Amaya's timeline

    When I picked up Amaya from school this week her teacher told me that they had worked on their time lines that day. She invited me to come in and look at them. I was excited to see what Amaya had created. She had selected the pictures herself and what to write for each photo and time period. The class was instructed to chose one picture per year. I was very happy with Amaya's timeline and decided to share it with you all.
      Here's the first picture Amaya chose. This was actually taken when she was about three months old. She was such a cute, bald, baby. I was really taken back by what she wrote under the photo, "This is me when I was born. My parents were going to learn I had a short leg in a few days." Maybe its how nonchalantly or how calmly she says it that sticks out to me. Honestly it's kind of strange and sweet. I don't ever remember telling her when or how we found out about her short leg. Yet, reading it its as if she was there with us those eight years ago as we learned about her leg and PFFD. Her version of what happened is so calm, concise and simple. I wish it had been. I remember how confusing those first few days, months and years were. I remember the pain and confusion, the apathy of our fist doctors, the lack of information, waiting for a diagnosis, having an incorrect diagnosis, searching the Internet, etc.. I can't remember when exactly I realized Amaya had a shorter left leg. I remember learning things throughout time. First hearing her knee pop, learning her hip "was abnormal," being told Amaya had hip dysplasia and made to wear a brace for four months only to later be told it didn't help at all because she didn't really have that. Then later learning that Amaya's knee was dislocating with each "pop" we heard, then learning she had PFFD, searching out a second opinion, learning of treatment options, learning of the lengthening center in Baltimore then in Florida,  finally meeting Dr.Nelson when Amaya was five. Once we did we continued to learn more: that Amaya was missing the ligaments in her knee, that her hip dislocated at times, and wasn't fully formed, that her tibia and fibula were also shorter than her right ones, and that she would need several surgeries. Learning of Amaya's "shorter leg" as she called it was a long process. It was trying, and often times emotional and draining. Yet we always knew she was "okay" and would be just fine. Looking back it seems so long ago. To be honest I like her version better.
      I wondered if she would include her fixator in her timeline or not. She did. It was such a big part of her life and took up most of her sixth year of her life. Here's what she wrote below the picture, "This is me on first day of kindergarten. I was exited!!! I had a fixator on my left leg." The picture was actually taken the first day of first grade. She got her fixator put on toward the end of kindergarten and then taken off halfway into first grade. I love how matter of fact she is. She adds, "I had a fixator on my left leg" at the end of her statement. Its kind of funny, that its an added fact at the end, as if we couldn't see it on her leg. As if it wasn't a big deal. But, I think it means that even though it was big and a big deal, it wasn't all that she remembers of that time. It wasn't the highlight of the day or year.
      Here's a look at her entire timeline. Its interesting to see that of the nine pictures she included she only mentions her "shorter leg" and fixator twice. She includes a baby picture, her first birthday, climbing a tree as a toddler, holding Lidie for the first time, playing at the beach, ice skating in Rockefeller Center, starting first grade with her fixator on, hanging out at home and heading out to a Halloween party this year. 
     I think this timeline is representative of her life and how she handles her PFFD and her surgeries. Although PFFD and her surgeries are a part of her life, they aren't her entire life or what defines her. She lives life just like any other kid. She's happy, healthy and thriving. Often parents ask me if we regret the surgeries we've had done for Amaya and what her thoughts are about them. We have no regrets, and neither does Amaya. She has always says she'd do it all again. It makes me happy to know that Amaya is doing so well. That although PFFD is a part of her life, it doesn't limit or define her. She's amazing! And these eight years have been too!








Sunday, October 13, 2013

Second Annual CHOC Walk in the Park

    Today was amazing! We participated in our second annual CHOC Walk in the Park. It is a 5K walk through the Disneyland Resort to raise money for the Orange County Children's Hospital. This year we decided to walk as a team, Amaya's Goonies, (inspired by Amaya's favorite movie, The Goonies). We were joined by Amaya's Nana, Tia Amanda, and baby cousin Sierra. As a team we raised $500! Although Loma Linda Children's hospital is our home hospital and where Amaya has received her four surgeries we were happy to go be a part of the children's' hospital patient community. It feels good to be able to help another Children's hospital. I know first hand what great work Children's hospitals do and what special places they are. 
     Thank you to all of you who donated, cheered us on and sent us love and well wishes today! We appreciate all of you. 
Here are some highlights from the day.

One of the fun things about having a team this year was making team decorations.  Here's Amaya working on the sign she hung from her wheelchair. She thought of what to write and made the sign, with minimal help from dad. Isn't that awesome?
Here she is cutting part of the sign. 
It was neat to see her put so much time, effort and care into the sign and preparations. 
   
 Josh and Amaya made all of our decorations this year. 
Here's a look at the flag and some of the badges they made for us to wear. 

Amaya in the parking garage with her game face on, ready to walk the 5k. 
Sierra bundled up and ready to walk. She had her stroller decorated with her Goonies badge. Did you notice, the skull has one bone shorter than the other? That wasn't a mistake. That skull has PFFD too.
     I was so happy Josh caught this moment on video. It was powerful. I was filled with joy and tears. As we walked up to and past the starting point and stage the announcer noticed Amaya and read her sign aloud. It was emotional for me to have so many people cheering for her and sharing in her accomplishment. It's so amazing to think about and reflect all that Amaya has been through this past year and how much she's overcome. Although those people don't know all that it took for her to get to where she is now, they someone know that it took something special. You could feel their love, joy and energy. I share that moment with Dr. Nelson and Amaya's "amazing team." 
     Toward the end of the walk a cast member approached Josh and told him that some of the staff  under him were touched by Amaya. They said she was an inspiration to them. Josh thanked him for his kindness. It left both of us a bit speechless. 
     In prepping for today we talked about many ideas and at some point Josh thought it would be neat for Amaya to push her wheelchair to symbolize that she doesn't need it anymore. She liked the idea and then the idea of the sign was added. She chose the words, all by herself. Its sweet to see her acknowledge Dr. Nelson and her "amazing team" and all they did for her this past year. Her team included Melissa, the other therapists that helped and encouraged her, the residents, our pediatrician, our referral coordinator, and our family and friends. 
    


In case you don't know or don't remember  what Amaya looked like last year here's a reminder...
     Although Amaya wanted to walk last year, she ended up spending the majority of the time in her wheelchair. After ten months of having her external fixator on and lengthening her femur by 8 cm she was in a lot of discomfort at this point. She was less than a week away from having her fixator removed, her muscles were tight, she had nerve and pin site pain. At that point her walking was slow and with the large crowd it was a bit tricky to maneuver safely through the crowd. Also it was cold and she had her legs exposed and found comfort from sitting bundled up. By the end of the day she did end up walking quite a bit and making the best of it. She was a trooper!
Here's a closer look at her leg with her fixator on. 
It's hard to believe how much has changed in one years time. It really is amazing. 

Okay, now back to pictures from today's walk.

Lidie and I enjoying the walk. 
 
Sweet Sierra showing off the Goonies onesie Tia Amanda made her. Pretty cool, huh?
Lidie flying the Goonies flag. 
Lidie with the princesses. 

Amaya's Goonies walking down Main Street in Disneyland. 
Lidie wore her badge proudly on her back.  
Amaya taking a break on Dad's shoulders. I like his badge. It reads, "Amaya's Goonies for PFFD."  
A fun thing about the walk is that a lot of characters are out for the kids to see, wave at and pose with. The girls posed with Sophia the First. 


    Amaya pushing her wheelchair through California Adventure. She decided to give Minnie Mouse (with a pirate patch on), Nemo (of course we had to have Nemo! Lucky Fins Rock!) and a doll with a "fixator" on her leg a ride. In case you can't read her sign it says, "Last year I rolled...This year I WALK Thanks to Dr. Nelson and my amazing team." She got lots of smiles, high fives, cheers, and congratulations. It was neat to see peoples faces as they read her sign. Their looks were of pure joy, excitement and amazement. I teared up many times as people stopped to talk to her.

   Throughout the day Amaya felt embarrassed, shy and unsure of how she felt being called an "inspiration." At one point she even cried. Maybe its a lot to process when you're eight years old. At bedtime we talked a bout it a bit more. I reminded her that I loved her and was proud to be her mother. And I called her my reluctant inspiration. Which she thought was kind of funny.
I love this picture of the girls and I with Sierra. I love how Amaya is cuddled up to me. 
Here we are at the finish line! Way to go Amaya's Goonies! 
See you Next year CHOC Walk! Feel free to join our team next year. 
We can always use a few more Goonies!

Sunday, September 15, 2013

A great story

     Yesterday we took the girls to Legoland to celebrate Amaya's birthday. She'll be eight on the 17th. We had a great time. While we were in line for a roller coaster ride I noticed a little boy looking at Amaya's leg. Here's how the encounter went.
     The four year old noticed the scars on Amaya's knee, then he looked down to her shin. He looked a bit confused, and somewhat surprised. He started to point at her leg then whispered something to his parents. The parents were embarrassed. They quickly pushed his hand down and told him to not stare. The mom tried to change the subject by asking, "oh, do you like her shoes?" The kid looked at his mom with like she was crazy and responded with, "no, look! What is that?!" He pointed at Amaya's scars. He was only about a foot away from Amaya, but she was oblivious to it all. Again the parents pushed the boys hand down and scolded him for pointing and staring. Since we were in line we were awkwardly close together. I smiled at the family and asked, "did he notice her scars?" The parents smiled. Then the dad said, "yeah, I'm really sorry." I smiled, and told him it was okay. The boy wasn't being unkind, just curious and confused. I said, "the scars can be a bit intese." I added, "she's had a couple surgeries. She's had her knee reconstructed and her femur lengthened." The mom smiled and said, "well, she's still got cute shoes." I smiled and thanked her. I wanted to tell her how these were one of the few shoes Amaya has been able to pick on her own, and not had modified to add a lift. I wanted to share our joy that for the first time Amaya had two feet flat on the ground. After a small pause the dad said, "well, it makes for a great story." I smiled then thought, 'you know what it does.'
      It is a great story! A story about a little girl who has endured, overcome and achieved so much, despite being born with a disability. Her story is a story of strength, courage and resilience. A story that includes a little sister who has grown in her empathy and compassion. This story that has many heroes.  Our first orthopedic who gave us great advice: to never limit Amaya. Our PFFD friends and allies who help us on our journey with advice and empathy. Our surgeon, Dr. Nelson who's skill, talent, dedication and kindness has forever changed our lives. Our therapists, Melissa, Jay, Cassie who challenged and encouraged Amaya. All the other therapists who encouraged Amaya. Our pediatrician who works to keep Amaya healthy. Our referral coordinator, Marilou, who works so hard to make sure all of Amaya's referrals are taken care of and that Amaya never has a lapse in treatment. Our family and friends who've given us kindness and support. Amaya's friends who've accepted her just as she is. And a mother and father who love her wholly and completely.
    Thanks for being a part of our journey and story.
Here's our sweet girl. You know what I think is cool? That Amaya continues to wear shorts that show off her scars, that she's oblivious to the stares of others and that she lives life without letting PFFD or the surgeries or scars limit her. She's amazing! 
Here's a close look at the scars around her knee.

Tuesday, September 10, 2013

Getting ready for our second CHOC Walk

    We've signed up for our second CHOC Walk! The CHOC Walk is a 5K fundraiser for the Children's Hospital of Orange County. This year we decided to walk and fundraise as a team, Amaya's Goonies. Last year as a family we raised $450. This year we have a goal of $800. If you'd like to walk with us, sponsor us and/or spread the word we'd greatly appreciate it! Donations can e made online or by mailing checks to us and remember donations to CHOC are tax deductible.
    The walk will take place on Sunday October 13, 2013. The walk will begin in Main Street USA inside of Disneyland and continue on into California Adventure. The walk is a lot of fun and a great way to raise funds for another local Children's hospital. As you know, we've spent some time at Loma Linda Children's hospital for each of Amaya's surgeries.
  If you'd like to join our team or sponsor us visit www.chocwalk.org then click on "sponsor walker" then click on "donate to a team or walker."There you can look for our team, Amaya's Goonies. On our team page you can sponsor us as individuals (we have to raise at least $50 each) or join our team. If you have any questions feel free to email me at xochma29@yahoo.com.
    Thanks again for all your help and support along this journey. Below are some pictures from last years CHOC Walk.
Josh and the girls waiting for the walk to start. Amaya rolled through most of the walk last year. Amaya was cold and very sore at that point during her lengthening. 
And this is what will make this years walk so emotional for me. Knowing how much Amaya has endured, and overcome in a year! Last year during the walk she had a fixator on, had more therapy, healing and recovering to do. This year, things are different! 
The girls and I with Jessie and Woody. 
The girls loved seeing the different characters throughout the parks. 

Sunday, August 25, 2013

Recovered and ready for a fresh start

       Well its been a week and a half since Amaya's surgery. I'm happy to report we're all doing well and life is back to normal. Those first few days were exhausting for us all.  We couldn't believe how tired and worn out we all felt. Thankfully, Amaya recovered quickly and her pain was managed early on. By Tuesday she didn't need Tylenol for pain anymore. She's able to walk, run, jump, play, sleep and even bowl without any pain or discomfort.
    The girls start school this Tuesday. Lidie begins transitional kindergarten and Amaya starts second grade. This will be Amaya's first school year without any scheduled surgeries! We're looking forward to a new year, new start and a break from surgeries.
      Thanks again for all your love, kindness and support.
Isn't this the coolest monster you've ever seen? It was in a care package from Rory and her family. We received some sweet cards, pictures and treats that helped the girls feel loved and extra special. Thank you all for all the love, thoughts, calls, prayers, and messages. We're grateful for all your love and support.
Amaya used one of the flowers she received to play with. She pretended she was the flower and she was sleeping in recovery.
Here's what Amaya's hip looked like before her shower on Tuesday. From previous surgeries we've learned to not force the bandage removal. We had her shower like normal, but didn't touch the bandage at all.
Amaya's hip started to get itchy then the gauze started to peel off on its own. By Thursday the gauze came off on its own. Here's what her incision looked like. Amaya was surprised and happy to see how small the incision was. 
Here's what her hip looks like now. There's still a small bruise on the outside, but her incision looks great! And the bruise doesn't hurt her at all.
Here are our two lovelies.

Friday, August 16, 2013

The rod is out!

    Its the morning after Amaya's rod removal surgery. We're still a bit tired and recovering. Amaya is a bit sore and has some slight discomfort, but she's doing fantastic! She's walked quite a bit and said it feels good. She seems to feel the most pain when she sits or lays and puts pressure on her hip. At bedtime last night she had quite a bit of pain. After a hot pad, some children's Tylenol she got some relief. But she wasn't able to fall asleep on her back because her hip hurt. I had her turn on her right side while I rubbed her back then soon after she fell asleep. She continued to moaned for a bit more, but was able to sleep through the night without anymore Tylenol.
   Here's a recap of yesterday.
     I woke up at two am with Lidie. For a half hour melt down, then again at six am. I was tired. I hoped Amaya would sleep in, but she woke up at seven thirty. Lidie realized it was surgery day and she was upset. She didn't want to go anywhere with anyone. She begged us to bring her along. She even asked to stay in the parking lot waiting for Amaya. "Please, mom! I don't care how long! I'll wait for her." It was heartbreaking. Surgery days are just as tough for the siblings, if not more. We tried to keep Lidie distracted, entertained and calm.
    While we waited for our check in time Amaya saw a commercial for a trampoline bounce play place. She got so excited and said she couldn't wait to be able to go. She started to realize just how pain free she would be once the rod came out. Josh had asked her if she thought she'd be able to feel the difference when the rod was out. Very confidently she said yes. Its been such a bother for her these past few months.
    Amaya had six ounces of apple juice two hours before our check in time. The surgery center called us and let us know Dr. Nelson was running ahead of schedule and asked if we wanted to come in early. But since Amaya had finished her juice not too long ago they told us to stick to our original time.
   As we loaded up to leave Amaya told Lidie, "I'm sad for you." Lidie responded with, "I'm more sad for you." It was sweet to see these girls who can sometimes drive each other crazy with their sibling rivalry be  empathetic to one another. We went to drop off Lidie at her grandparents house, but when we got there she didn't want to get out of the car. Dad carried her out, car seat and all. that seemed to lighten the mod for her, but only added to my concern for her. For four years old she had to show a great deal of strength, courage and bravery. My heart ached for her all day. Before I left I make sure to kiss her palm (like in the Kissing Hand) which helped comfort her and I both.
   On the drive down Amaya kept telling us how hungry she was. Josh hadn't eaten anything either to show her some support and solidarity. I had only eaten at 6:30 some cream of wheat with Lidie and was getting thirsty and hungry too. As we drove Josh told me that he was feeling calm. He said knowing Dr. Nelson would be in charge today gave him confidence. Confidence in your doctor is huge! Amaya played with an iPad on the drive down and kept herself pretty distracted. Occasionally she'd look up and ask, "are we there, yet?"
    When we approached the surgery center I felt calm and comforted. Knowing we had the help and support of so many family and friends and that we had Dr. Nelson looking out for Amaya soothed my soul. It was kind of strange to be so calm at that moment. I'm usually full of butterflies in my stomach. But, not that time.
    Amaya was calm as we checked in, registered, filled out paper work, and had her vitals taken. She started to get a bit nervous when they attached the round tape things that they use to measure her heart during surgery. They usually attach those after shes asleep and she doesn't see it, so she was a bit thrown off. As the nurse left Amaya changed into her gown. She may or may not have stood on the bed. And she may of may not have jumped up on the bed once. But, only by dads suggestion. After she was dressed she said, "I feel awkward." We weren't sure what she meant by that. We waited over an hour for the surgery to start. While we did she played on the iPad, played with us, and talked. She did great! She was calm and kind.
    We met with the resident first. He looked at her hip and said he could feel the rod. He said that since it was so predominant it might only take about five minutes to remove the rod. He said it would be about an hour for the whole procedure. We signed release forms and then he wrote on her leg. After he left Amaya got a bit more nervous. "I feel icky. My left side and arm feel weird." She said. At almost one o'clock we were still waiting for the anesthesiologist. We were hungry! I rubbed Amaya's feet and tried to stay calm. I worried about her femur. What if the femur cracked when the rod was removed? What if there was a complication? And worse off what if the femur brakes and we lose some of the lengthening we gained? I worried for Lidie and Amaya both at the same time.
    After waiting for almost a couple hours things started to go quickly. Almost a little too quickly. The anesthesiologist came and talked to Amaya. She talked her through what would happen. Then a nurse came to talk to us. Then Dr. Nelson came over to talk to us too. He was kind and reassured Amaya that things would be fine. He asked Amaya about her summer. We asked if she could keep the rod. He smiled and said sure. The nurse asked what Amaya would do with it. "Add it to her collection." I said. Amaya told her she already had a fixator at home. Dr. Nelson smiled then gave me a hug then left. His hug comforted me because I know he cares for Amaya and would take good care of her. Quickly another anesthesiologist came and told us it was time for "hugs and kisses." I kissed Amaya, told her I loved her and would be waiting for her. As they wheeled her away, she turned back with teary eyes. Ugh, my heart broke. Seriously, that pain is only equal to a broken heart, or when you hear someone you know has died. The moment they wheel her away is always hard for Josh and I.  But this time, since she did look back, and had pain in her eyes. I had a hard time recovering. I knew she left pain and fear. And I was powerless to do anything. Last night before bed she told us how scared and confused she was. Usually she drinks some "pink stuff" to help her forget and calm down. But I think since it was such a short surgery they didn't give it to her. Walking out ot the waiting area was hard. I had to stop in a hall first to cry and pull my self together.
   We waited for forty-six minutes but it felt much longer. Time passes strangely when you're waiting for a surgery to be over. I had no clue what time it was. I knew Amaya would be fine, was in good hands and had kind souls looking after her, but it was still hard to wait. At two o'clock I was tired, hungry and exhausted emotionally and mentally. Its exhausting worrying about both girls. When they called us to go back into recovery Amaya was very emotional. She was confused and sad. The first thing she said ti me was " I love you mom." She said she felt like she was in a dream, that she was worried about us. We tried to calm her and soother her. She was sore. As soon as she drank some juice the nurse was able to give her some more pain medication. Dr. Nelson came in to check in on her. He said she did great. I asked about the femur and he said its just like the right one. That was great news! He left to give her time to recover.
    Amaya started to be more like herself within a few minutes. She drank juice, had a Popsicle, and some bites of a saltine. She continued to tell us how much she loved us and missed us. It was so sweet. I just wanted to pick her up. She asked to look at her hip, and when we showed it to her she was pleasantly surprised to see a small piece of gauze. Once she got her pain medications eh started ot feel better. She continued to be sweet and polite to the nurse the entire time, even when she wasn't feeling well. After a few minutes the nurse said that if shes feeling good she can be released in half an hour. I was surprised how quickly she recovered from the anesthesia and was able to go home. She had no problem getting dressed or hopping ot her wheelchair, with the nurses help. We had a very kind nurse named Kim. Her mom and I work together. It was nice having someone who knew of us be prepared to help us.
     Before we left the female resident came in with some flowers and a card from Dr. Nelson. Wow! What a sweet gift. This is the end of a phase of our journey with him. One that has left Amaya with a stable knee, hip, and two feet firmly planted on the ground! We've been so fortunate to have Dr. Nelson leading our way. He's been amazing. Seriously, amazing! We get a couple years off from surgeries then we'll be working with him again to lengthen her femur the rest of the way. The resident was kind and encouraged Amaya to continue with her dream to be a surgeon. She told her there aren't many girl doctors out there, so to never give up.
    We hit some traffic on the way home so it took us a little over an hour to get home. The last few minutes Amaya was very ready to be home! She got comfy on the couch with her pillow pet her friend Caelan gave her. Later she had some cake her Tia Lacy and Grammy brought her. She was asleep by nine pm and I followed shortly there after. Our long draining day came to an end.
   We've made it thorough four surgeries in three years time. We've survived! Amaya is very lucky to have a wonderful doctor, loving family and friends by her side. Thank you all.
Carrying Lidie into her grandparents house.
Me and Amaya in the lobby.
Getting her pulse read, and blood pressure taken. She started to get a little nervous here.
Having her heart checked.
Waiting with Teddy. She got to take him into the surgery room with her yesterday. 
That was kind of cool.
Her face after beating me at tic tac toe again.
Waiting with dad.
Amaya and dad holding hands. 
The leg is marked and ready to go.
Amaya smelling her mask. The anesthesiologist made it smell like bubble gum for her.
A screen shot of my phone the second they called us back to see Amaya. You should see us move when they call us back! We move so quickly.
Our first look at her. Aww. Her eyes were so red and puffy from all the crying she was doing.
The first look at her rod.
Heading home!
Lidie checking out Amaya's leg.
Some of Amaya's goodies.
Here's what her hip looks like. The bruise kind of scared her until I showed her the picture and she noticed how "small it is."She can't get it wet if for five days. She's happy because that means no showers or baths. Then after that the bandage will start to come off. She had that clear tape stuff with her knee surgery too. 
Here's a look at the rod. It's next to a ruler and measures twelve inches.
Amaya's flowers and card from Dr. Nelson. She was pleasantly surprised to see them. So were we.
First attempt at walking just a half hour after getting home.