amaya at lake

amaya at lake

Wednesday, March 26, 2014

Amaya's powerpoint

   Like I mentioned in my last blog post, we recently celebrated two years since Amaya got her fixator put on and began her first limb lengthening (back on March 6, 2012). When we asked the girls how they wanted to celebrate they of course said with cake. But later when Josh asked Amaya if there was anything else she wanted to do to celebrate she said she wanted to talk about it with her class mates.
    Together Amaya and Josh began to work on how best to do that. Together they came up with the idea of a PowerPoint presentation so that she could show pictures of what it was like. She helped pick out pictures and decided what to say on each slide. She also decided to talk during throughout the presentation. Josh helped her type it and prepare it.
    It was neat seeing her work so hard to prepare it. I knew I couldn't miss such an amazing presentation so I made sure to take the time off from work.  Below are pictures of the slides and photos from the day.
Josh and Amaya prep erring the PowerPoint.
Amaya gathering her fixator to bring in to share with her friends.
Amaya delivering her presentation to her class. The students were attentive, had thoughtful questions and were kind and empathetic. 
Josh working the computer during her presentation.
Here's a little bit of Amaya's presentation. I think she did amazing!
Here are the slides from the presentation...
    Josh, Amaya and I took turns to help answer the questions from her class mates and her teacher. Together we explained how the lengthening process worked, what the toughest part was, how therapy worked, etc.. 
     Amaya did a great job! She was calm, poised, did a great job explaining things and answering questions. She was brave, mature and amazing! Thanks again for following along. We appreciate your love and support!

Thursday, March 6, 2014

Two years later

 This was us two years ago... 

Lidie, age 3 and Amaya age 6 the night before Amaya got her fixator put on.

Here's a before and after shot from March 6, 2012.
Here's our sweet girl giving a thumbs up getting ready to head into surgery. 
This is what her leg looked like after surgery. She wore that fixator for seven and a half months. 

    But, I should also show you another 'after' picture, of where Amaya is now two years later. Where she was two years ago brought her to where she is now. With two legs firmly planted on the ground.  With legs of equal length! She grew 3.1 inches of new bone during that time! It's amazing to see her standing strong, and tall. With no need of a shoe lift or wheelchair or walker. To see her happy and healthy. It's a gift. I'm forever grateful to Dr. Nelson and to Melissa our therapist.

This is how she stood two years ago. 
And here is how she stands now. Its amazing and something worth celebrating!
The girls getting ready to enjoy some celebratory cake.
Here's a close up of the cake. 
When I picked up Amaya today she told me about a writing assignment she had today. She was suppose to write about a "Cinderella dream." Anything she dreamed of for the future. Here she is telling me about her dream and what she wrote... I can definitely see that dream coming true. 

A mini-interview with the girls while they had cake...


What do you girls remember about having the fixator on?
"It was boring helping some times." -- Lidie
"The fixator helped me. Dr. Nelson helped me." --Amaya

What was the best part of having the fixator on?
"Getting my leg fixed. It grew my bone!"

Do you regret it?
"Never."

What was the hardest part?
"Not being able to run fast with it on."

What was the easiest part about having it on?
"The handle to move my leg with."

Is there anything you miss about having a fixator?
"The handle to move my leg, therapy (it was actually very fun)." 
Lidie "I miss playing at therapy and getting candy there."

Anything you want to say to anyone who's getting a fixator?
"Don't worry, you end up with a way to use your leg and you'll enjoy it, some of the time. And you won't have to struggle with some of the things. Good luck!"

Anything you want to say to our blog followers ?
"Don't worry about your kids, it'll be okay. You don't have to struggle. Thank you for reading my blog.
That's all."




      We have several friends who just got their fixators put on or are getting very close to that. I can say that two years later it was definitely worth it. So hang in there! 
I was talking with someone earlier this week who is going through a very difficult time. I said that sometimes when we go through difficult times, we're not exactly sure how we do it, but we do. Two years later that time seems so long ago. I remember the day to day stuff (the pin care, the three hour long trips to therapy, the doctor visits, the daily physical therapy, the stress, and worry and sleepless nights, etc.) that was difficult and exhausting. Somehow we did it. We survived and are better for it. Not only as individuals but as a family. It wasn't easy, yet two years later the hard stuff isn't what we remember. We remember  the accomplishments. We remember those who helped us along the way. 



Here are some quotes that helped encourage me, I hope they do the same for you. 

                                                
                                              
Thank you all for reading along, for being a part of our journey, for your care, prayers,  kindness and friendship. 

Wednesday, March 5, 2014

Six month follow ups

    About a month ago we had our six month follow up with Dr. Nelson and with Amaya's wound doctor. We've had several family emergencies since then so I haven't been able to update the blog until now. And even now I still have a cast on my left arm (it was broken in a car accident in December), so I'm typing this one handed. I apologize now for any grammar mistakes.
    We were excited to see Dr. Nelson, get new X-rays and get some answers. When we were called back a resident looked at Amaya's incision site (where the rush rod was removed in August) and said it looked great. We've never seen this resident before so he asked about all of Amaya's past surgeries. After I filled him in, he said "oh, wow. Mom should be an ortho." But I smiled and said, "no, she's our ortho." And pointed at Amaya. He smiled at her and said, "oh, you should totally do it! It's a fun job!" I love how encouraging all these residents are to Amaya.
    After the resident left the room we waited for Dr.Nelson to come in. While we waited Lidie said, 'he's the best doctor for you Amaya." Then asked her, "Amaya does he hurt you?" Amaya laughed and smiled then said, "no." As a parent its nice to hear Amaya say that. Even though I know it isn't true. Her procedures have been painful. I witnessed it first hand. But she doesn't dwell on the pain or associate Dr. Nelson or surgeries with pain. Which is great. That helps me know that she's doing okay and will handle the next ones well.
    When Dr. Nelson came in he had Amaya lay on her back. Then he began to move her legs, bend her knees, and turned them. He said she was doing "great!" And said that it was a testament to the great therapy she received and her hard work. While he examined her he noticed his orthopedic book. He laughed and asked her if it was hers. We told him it was one of her Christmas gifts. Then he offered to sign it for her (she was hoping he would). Dr. Nelson was very pleased with how Amaya is doing then sent her back for x-rays. While we waited for the x-rays Dr. Nelson was called to an emergency at the medical center so one of his senior residents came in to look over the x-rays with us. I can't believe I forgot to take a picture of them. Ah! The bones looked straight and strong. The resident measured Amaya's legs. Her right femur is 36.3 mm long and her left femur is 36.8 mm (a .05 mm difference). Her right and left tibia's both measured 300 (which would be 30 mm). The resident said that her legs are equal, "probably more so than mine." And added that they are "perfect right now." That was great to hear! After the lengthening Amaya's left femur was longer so she's gone through a growth spurt since then.
     The resident asked how much new bone we gained during the lengthening. When we said 8 cm he said, "oh wow. What a really good result!" The resident said that Amaya had excellent range of motion considering how much she lengthened. We mentioned our concern that Amaya's knee has been popping and hurting her lately. The resident manipulated her knees and said that her left one is looser than the right one. But added her knee is in "stellar shape" considering the super knee surgery she had. He said he would make a note and mention it to Dr. Nelson.  He noticed Dr. Nelson's orthopedic book and asked if it was ours. We told him it was Amaya's. He said he loves his and uses it "everyday."
    We were a bit sad we didn't get to say goodbye to Dr. Nelson before leaving, but we were happy with the results and hope to see him in a month at the triathlon. A nurse called us the following day to let us know that Dr. Nelson said that Amaya is doing great and he doesn't need to see her for a year. A year! Awesome! I still have some concerns and questions, but nothing immediate so I'm going to try and enjoy this year "off."
Lidie and Amaya playing a game while waiting.  
Lidie can always put a smile on our face, even after a four hour doctor appointment. 
Josh and Amaya. Look at those smiles!
Lidie playing a game while waiting (there was a lot of waiting that day. But, like I always say, Dr. Nelson is worth the wait). Notice the "doctor glove" beside her. We came home with five pairs of them. Dr. Nelson is so kind to let the girls have them; they play doctor and nurse so often and look forward to getting more supplies when we go to appointments. It's one of the perks of having frequent doctor visits.  
Amaya was thrilled that Dr. Nelson signed her copy of his book! He's awesome!
    After our appointment we walked over to the therapy department, hoping to see Melissa. We got to see Jay on his way back from lunch (he was our back up therapist). Thankfully Melissa was there. Here are the girls with Melissa, Amaya's old physical therapist. We all miss seeing Melissa on a regular basis. She is kind and made therapy fun, not only for Amaya but Lidie as well. Like Dr. Nelson mentioned, we owe so much of Amaya's healing and recovery to the great therapy she received. I am forever grateful to Melissa.
      We mentioned to Melissa that Amaya has been complaining that she's slower than the other kids in her class. Melissa invited the girls to a race down the hall. I had to smile. I've watched Amaya roll, walk with and without a walker, ride a bike and run down those halls countless times. This time I could see how fast Amaya was and that her limp was hardly noticeable. She's doing great! Afterwards Melissa said that Amaya has a long stride, which is an advantage over other kids. I let Melissa know that Amaya has been doing therapy "homework" and stretches at home to improve her stride, strength and speed (voluntarily and without complaining). Amaya does a great job of working hard, without complaints! Melissa said Amaya is doing great and to keep working at it and she'll continue to see improvements. 
    We'll be seeing Melissa in about a month at the PossAbilities Triathlon. Melissa said she'll be doing the triathlon this year because, "if you could do it last year, then I can do it this year." Melissa added that Amaya is inspiring us adults to do stuff, get in shape and "get off our bottoms." 
    Here's a look at Amaya's heel. This March will make two years she's had the bed sore. Its starting to look the same to me, but I was happy to hear her wound doctor say that he could see some improvement. "I think she'll be okay," is what he said, which was music to my ears. He said that the area is filling in with fat and scar tissue (she had some fat atrophy from the original bedsore). He thinks it will continue to heal and fill in (but we're still looking at several years for it to fully heal). He said we need to continue to tape her heel daily for the next six months to a year to help the healing process along. As well as having her sleep with her heel pillow. We will return in six months to follow up and decide if we need to keep taping the heel or not.
     He told us to get Amaya some good quality shoes with good arch support. He said the arch support will alleviate between ten to fifteen percent of the pressure off of her heel and the ball of her foot. He said this was very important for her healing. He said that when we shoe shop its important to have her try on both shoes and to have her walk around in them. He said if she complains of any pain or discomfort to not get them. He said getting comfortable shoes for her was important. He said she can wear flip flops, but to not let her go barefoot for one year, especially while out doors. He asked if Amaya was scheduled to have any more surgeries in the future. When I said yes he asked me to make sure we are careful during future surgeries (to protect the area from re-injury). Before we left the nurses took photos of Amaya's heel to measure its size and document how it is healing. They gave us more taping supplies,  then we were off.
Here's Amaya on the way out of the hospital. I wanted to show you her "style." Her doctor, asked her, "are all the kids wearing ties and dressing so formal? She smiled and said, "no, not really." Her style is like her; one of a kind and cute! She was giving a thumbs up to her aunt Hilary, since we were outside of the waiting room where my nephew Nixon was born almost two years ago.