amaya at lake

amaya at lake

Thursday, March 21, 2013

Follow up with physical therapy

   Today was our three week follow up with Melissa. We have had such a nice few weeks "off" from therapy and school. Amaya has been off track from school and we've all enjoyed the extra "free" time. Amaya has been enjoying trips to visit grandparents, play dates, trips to parks and libraries, visiting cousins, a trip to a farm, birthday parties, watching movies, staying up late. 
   On the drive to therapy Amaya wore her 1.5 lb. ankle weight to help the leg stretch a bit. When we were almost there Amaya said that she was so excited to be seeing Melissa again. We've all missed seeing her on a regular basis. She's been such a part of our daily life that it feels weird not seeing her. I got a bit emotional once Amaya said that. For many reasons. Because of how much Melissa means to us, for how grateful I am to her for all her help, because I can't believe how far Amaya has come in such a short time. And in some silly way because driving to therapy reminded me of the reality of this past year. These past few weeks "off" has given a chance to not think or worry about Amaya's leg, therapy, etc. Although we've done nightly physical therapy homework, somehow it wasn't the same. I haven't had to deal with the daily stress or worry. Driving into therapy reminded me that Amaya has a PFFD leg, that she had a major surgery this year, that she's completed a year of physical therapy, that she will have another lengthening in a few years. Ugh. Its hard. Somehow not going to therapy these past few weeks let me forget all of these realities. I was also emotional because I was overwhelmed with pride in Amaya. She's been so amazing through this whole process. She's endured so much, never given up, and managed to do it all with a smile. 
   When we checked in the receptionist remembered us and didn't need to ask our names. As we sat I got a it nervous. What if Amaya's leg still need some improvement? What if we would need more therapy? What if we didn't do enough these past three weeks? I can really be a worry wort. 
   When Melissa came out she said she read in our blog that Amaya has been doing gymnastics and asked how that was going. Amaya has gone for three weeks now and is really enjoying it. Its nice because she gets to have fun while doing stretches and exercises that help her leg. 
Melissa began by asking Amaya which of the exercises have become easy for her. She showed her a picture of each exercise and asked how it felt doing it. Melissa had Amaya do her hip lifts then showed her a new way to do it at home. She said while her hips are up she can lift her right leg then the left one.
Next she had her do the side leg lifts with the weight on. These were hard for amaya to do. She couldn't' do any without Melissa's help. At this point I got nervous that we might have to come back for more therapy sessions. 
Amaya did really well with the leg lifts on her tummy! Melissa added the 1.5 weight above her knee. She said we can add it there first then lower it to the ankle. She said that once an exercise is easy with her leg at thirty repetitions then to add the weight at the knee and do fifteen repetitions. Then as they get easy add five repetitions until we get to thirty then move the weight to the ankle and add repetitions there.
Then Melissa tied a blue band around Amaya's legs (it looks like part of her skirt) and had her side step.  She did pretty good with this one but lost her balance a couple times.  While she was doing these Melissa pointed out that its five weeks until Amaya's triathlon! 
Next we went in the hall for some running. You can see Amaya still runs a little different. She has a hard time bending her left leg, lifting it and pushing it back. Sometimes when she's not thinking about it she does it really well, but other times when she's tired she has more of a limp. 
Then she did some high knees and did great! She got her knees up so high!
Here she is doing leg lifts on her back. This is her right leg (non-PFFD leg). You can see that its bent because she can't lift it up as far as the left leg. 
Here's her left leg. See how straight her leg is at the same distance up. Amaya's left leg is more flexible than the right one. Isn't that great? She was even able to lift it up to where Melissa's hand is. 
Amazing, huh?
Then she did some jumps on the trampoline. Amaya told Melissa about the jumps she does at gymnastics. After a few Amaya complained of hip pain so Melissa stopped and massaged it for her. Then she returned to jump some more. Amaya told Melissa that at night it hurts to lay on her left hip. Melissa said that since she lost some muscle from there she doesn't have much "cushion" there so it isn't very comfortable. 
Amaya worked on the elliptical for five minutes. I noticed that she wasn't using her hands to push the bars, only her legs. She was able to do .32 miles in that time!
      Then it was time for knee bends. Her starting number was 138! Can you believe it?! 138! Melissa had told us a few months ago that 135 degrees is what's needed to walk, climb stairs, etc. with ease. So we've been working towards that these past few months. So to have her start past that number is huge. When she was at 145 degrees Melissa asked her if she wanted to stop there, but Amaya said no. She gave another push and got to 146 & 1/2 degrees. She said she wanted to push to at least 147 since she's seven. But she pushed and went to 149. Melissa asked her if she was done, but Amaya decided to do one last little push and got 150 degrees! Wow! Her right let can only go to 154 degrees so that's only a difference of four degrees! And in the three weeks that we've been off from therapy she's jumped from 145 degrees to 154 degrees! Melissa smiled and said she doesn't have to worry about Amaya's range of motion anymore.
    Melissa went to get us a new blue band to use at home and printed out exercise instructions for us to do at home. I asked her "what happens next?" "Are we done?" She answered, "you are officially done with physical therapy!" I asked her if Amaya had done okay while she was off and Melissa said, "amazing!" And that's all I had to hear to calm my nerves and know that all our hard work had paid off! We still will continue to do therapy homework at home for a few months, but other than that we are done! For now. We'll be back in a few years for the next lengthening. And I'm really hoping Melissa is still working there. 
    Before we left we saw Jay. He was so happy to hear Amaya got to 150 degrees. He remembers all to well the many days Amaya struggled to get to 90 degrees. You can truly appreciate what 150 degrees is once you've witnessed a thirty minute tear filled session to get her knee to bend to 90 degrees. I'll never forget that. Jay said that I should be thanked as well for my efforts at therapy. I was very appreciative of his comment. Its been a heck of a journey. We also saw Jeremy on our way out. He said he recognized me first but not Amaya since she was walking so well. Lidie bragged to him that "she got 150!" Jeremy was happy and congratulated her on how well she was walking. I'm so grateful to the therapists for their kindness, smiles, encouragement, patience and genuine care. They helped make this year go by so much easier. 
   We gave our last good bye's and hugs. As I hugged Melissa I told her that I could never fully thank her for all she's done for us. Its true. Words don't do it justice. We'll be seeing her in five weeks at the triathlon and then try to hop in and visit when were in the neighborhood.
   To all of you who read along, who care, who send love and prayers and cards and well wishes, thank you. 
The girls waiting for Melissa to print out new therapy papers for us. She made minor adjustments to the stretches.
A last swing into the ball pit!

Wednesday, March 6, 2013

One year anniversary

    Today marks the one year anniversary since Amaya had her fixator put on. Wow. I can hardly believe it. When I tell people that most respond with "wow, that went by fast." Then they pause, then add "well, probably not for you." It's true this year did not go by quickly. It was one of the longest years I've ever lived through. It was also one of the most intense years that our family has lived through. Now that its over, it feels so long ago. I've moved on to enjoy the day to day things; the joy and smiles and triumphs. Life has gone on! Amaya is thriving and doing great! 
    March 6, 2012 will always be a turning point in our lives. It forever changed Amaya, her life and our lives. I'm so grateful to Dr. Nelson for what he's done for Amaya. With his skill and help she was able to accomplish something amazing. She grew 3.1 inches of new bone! Along with Melissa's daily help and guidance Amaya had a successful lengthening. I am relieved, grateful and thankful that it was such a smooth process. I'm grateful to all the therapists, residents, nurses, Amaya's pediatrician Dr. Dixon and to Marilou our referral coordinator. All these people helped us in many ways, on many occasions. And to them I owe a great deal of thanks. 
     Thank you all for your being a part of our journey. For your love, kindness, and support. It means a great deal to us all! Your kindness, love, prayers, well wishes and friendship supported us this past year. Thank you. 
This was last March 6th.
Amaya smiling after her first physical therapy session.
Our first look at her leg with the fixator.
This was her x-ray three weeks after her fixator was put on. Look at that hip and femur!
This is this now.
Her left leg is the SAME length as her right leg!
She no longer needs to wear a lift on her shoe!
Amaya is walking and running!
Amaya is no longer using a wheelchair or walker!
Amaya completed therapy (she did over one hundred sessions)!
Amaya can bend her knee to 145 degrees with minimal pain and effort!
Amaya is registered to participate in her first triathlon in less than two months!
Amaya is happy, healthy and thriving!
She requested celebratory veggie Big Macs.
Having fun at a friends house today.

This is her most recent x-ray. It was taken January 14,2013. What a huge difference between the two x-rays! Not only is the femur 3.1 inches longer it was completely healed.

Tuesday, March 5, 2013

Triathlon

    Amaya is registered for her first triathlon! PossAbilities is holding their 11th Annual triathlon on April 28, 2013. Amaya will be participant in the children's triathlon. She will be running/walking for a quarter mile, biking for a quarter mile then swimming 50 yards. Wow!
    We first hear about the triathlon last year. It seemed so far away and it was a good goal for Amaya to work toward as she did her physical therapy during and after her lengthening. She decided way back then that she wanted to be a part of it and is very happy that we registered her.
    Today is the eve of our one year anniversary since Amaya had her fixator put on. And now we're looking toward her first triathlon. What a difference a year can make!
    Amaya decided to use the triathlon as an opportunity to fundraise for PossAbilities. The money raised goes toward PossAbilities to help with their programs. In the short months that Amaya has been a member of PossAbilities she has been able to be a part of their swim party, swimming lessons, art workshop, the PossAbilities dinner, and attended the Christmas Party. All services are free to members. PossAbilities has helped us connect with other families and given us all a place to go and be a part of something special. Fundraising is one small way we can thank them for all they've done for us and for other families. To learn more about PossAbilities you can click on the link on the right hand side of the page.
     If you'd like to make a donation to help PossAbilities click on the link below. Simply type in Amaya Jimenez-Potter under "find a fundraiser to support." Thank you in advance for any encouragement and contribution.
http://www.active.com/donate/PossAbilitiesTri2013

Monday, March 4, 2013

Circus Party

     On Saturday we went to the Redlands YMCA to be a part of the Circus Party that the Limb Connection put on. It was a great time! We got too see other families and talk to the two other PFFD families in the group. One of our PFFD friends is preparing for her lengthening this summer. We talked with her mom and answered the questions they had. We tried to help prepare them as best as possible. She gave me a huge compliment. She said the blog is helping her so much as she prepares. "All the information is wonderful." Totally put a smile in my heart.  My greatest hope is that this blog helps others as much as other's blogs helped me.
   While we were there we ran into one of the parents of a preschool friend of Amaya. He asked how she was doing and noticed that she wasn't wearing her shoe lift anymore. When I explained the lengthening she under went this year and the 3.1 inches of new bone she grew he was amazed. He's right, it is pretty amazing!
   While we were there Lidie and I got to talk to a teenage girl who has half of her right arm. Lidie was interested in her prosthetic and wondered why the girl only wore it some of the time. She was kind and patient and helped answer all of Lidie's questions. She let us know that when she needs it she puts it on but when it gets in her way she takes it off. I'm so grateful to be a part of a group where young people get to mentor, help and support each other.
Here's a group shot of the Limb Connection. 
The first thing the girls did was walking on the tight rope. 
Then Amaya took a trip.
Amaya tried the yo-yo.
Lidie's first attempt on the ring.
Amaya's first attempt on the ring. She did well and was able to spin around.
Then they did the ribbon. The lady was impressed with Amaya's upper body strength.
 She pulled herself up by only using her arms.
Lidie did a good job as well.
Lidie's second attempt on the rings. She really liked this one.
Amaya and Lidie did this so many times I lost count. They loved trying to jump to get higher and higher. It was great practice for Amaya. It counted as part of her therapy for the day. 
Both girls took a turn swinging in here. It looked so calm.
Here's Amaya's second attempt on the unicycle. She really liked this and kept trying.

Friday, March 1, 2013

Last physical therapy session after lengthening...wow

   Yesterday was a big day. After fifty one weeks of therapy we were done with therapy. Well, mostly. We'll be returning in three weeks for a follow up visit with Melissa to see how Amaya is progressing. We're hoping to get a good report that day and to be released from therapy. After that we'll see Melissa at the triathlon in April. Melissa will be working a both that day and Amaya will be participating in her first triathlon. After that we might not see her for a few years until Amaya has her next lengthening. Hopefully she's still working there. I couldn't imagine going through this with anyone else.
   Melissa said that we don't have to push the range of motion in the knee too much because it wont regress. It will continue to progress as she goes along. She also suggested ladder climbing, bike riding and running. I asked about the atrophy that Amaya had in her left butt cheek. Melissa said that the muscle starts to come back after a month of training then takes another three to four months to build up. Melissa gave us six exercises to do for homework that will help with that. She said we can expect to do our physical therapy homework for the next two to three months then should be able to stop completely. Its hard to imagine a time without therapy homework. 
   I'm overwhelmed by this past year. I am grateful to you all for being a part of this journey with us. Thank you for reading along, for your kindness, patience, prayers, generosity, and love. We are forever grateful. 
Here's the card Amaya made for Melissa. I like how she titled it. Pretty cute, huh? Later she added a P.S. that said, "thank you for helping me get to this day." 
The girls cuddling in the lobby before our appointment.
Melissa started by testing Amaya's muscle strength. She said her left leg is actually stronger than the right leg at this point. 
Then she had Amaya do the exercises that she wants her to do at home. This is one of them.
Then she did some ladder work to help get the knee bending.
Then we went out in the hall for some running. Amaya wasn't lifting her left knee very much so Melissa asked her to try to get her to try to kick her own bottom.
Then she did some high knees.
Back in the gym Melissa and Amaya did some leg lifts while laying on their back, tummy then side. Then Melissa had Amaya lift her hips up off the floor. These are also some of the therapy exercises we need to continue to do at home.
 
When it came time for knee bends Melissa started by measuring Amaya's right knee first. She got her knee to bend to 154 degrees without any effort or work. Amaya said she wanted 144 as her goal for the day. She started at 131 degrees and continued to work until she got to her highest number since she started therapy last year, 145! Wow! I was even more impressed when Melissa said that she's never had someone be that close when they're done with therapy. There's only nine degrees difference between both legs! That's pretty amazing! Melissa said that she thinks Amaya will be able to get her left knee to 154 within the next six months. Look at how bent that knee is!
Before the session ended Melissa checked Amaya's balance and had her pick up some cones. We're also continuing to do this at home since she's still a bit wobbly. Instead of cones we'll use the clothes on her floor and the toys in the playroom.
Then she balanced on the balance beam.
Then balanced on her left leg. She was steady and held it for quite some time! I lost count after thirty seconds.
Josh took some time off form work to be with us during our last session. They were looking at a video they were going to share of Amaya climbing a brick wall.
One last swing into the ball pit!
Amaya and Melissa sharing a good bye hug. We're all going to miss her. She's been so kind, patient, professional, helpful, and wonderful. 
Afterwards I got the girls a celebratory churro. Look at those smiles. As we were in the drive thru I overheard Amaya tell Lidie, "thanks for coming to every therapy I had. I really appreciate it. I'm bending my knee so well cause you come and help me." To which Lidie replied, "You're very welcome." It was Amaya's idea to get a churro for Lidie as a thank you gift.
Then the girls had a play date with their friends Ryan and Tyler. The girls built a box around Ryan.
Then Amaya had a turn in the box.
The boys and their mom, Amy were so sweet and got the girls a cake to celebrate the end of therapy. What a sweet gesture. It meant a lot to the girls and us. We're so lucky to have such great friends in our lives.