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.