amaya at lake

amaya at lake

Wednesday, November 28, 2012

Yearly check-ups

    Today both girls had their yearly check-up. They were both a bit nervous on the way there about getting shots. I wasn't too surprised when Amaya weighed in only five pounds heavier than Lidie, who is three years younger and seven inches shorter than Amaya. The doctor said that Amaya needs glasses, pretty badly so we'll be getting some soon. She's pretty excited about that. She looked at Amaya's bedsore and said it was a bit tender and she didn't like that it hadn't healed yet. So she's giving Amaya a referral to the wound center at the hospital to check it out and see what they recommend to help it heal. She thought they might prescribe some type of orthotic to help protect the heel and let it heal. Dr. Dixon was very happy and proud of Amaya for how well she did with her lengthening this past year. She said she has another patient who will be having it done in two years and it makes her feel good knowing how well Amaya did. She said that Amaya serves as a good example of what can be done. She told Amaya that she can do whatever she decides to do. Amaya told her she wants to be an orthopedic surgeon and Dr. Dixon told her she believes she'll do it. Dr. Dixon told Amaya that she'll be able to help other kids just like her. Then she told Amaya about a famous orthopedic surgeon who is a dwarf and has helped others. On our way out we got to see Marilou and give her a hug. She's such a huge help to us and its always nice to see her face to face and thank her for all her help and hard work.
    After running some errands we had our first physical therapy session. I had Amaya use her walker to go in, and she was a bit frustrated with me and hoped she could use her wheelchair instead. But since she had used it in the stores we went to I thought she needed to practice using her walker. Today we worked with Jay for half an hour. We got to see Melissa on her way to lunch. I didn't give Amaya any pain medication since she hasn't been needing any lately and I wanted to wait and see how she did without it. She told Jay her pain was at a zero before starting her session. 
   We worked in the adult gym. Amaya did great; she worked hard, followed directions, tried hard and did her best. She had no pain and didn't need any pain medication after her session or before bed. While she was working at a table I noticed another boy behind her with two fixators on. His were both on his femurs. I sparked a conversation with his mother. She said he just had them put on a month ago and he'll have to wear them for three months. I told her about Amaya's fixator and the seven months she wore it for. There was a moment of mutual empathy and silence. I told her that no one else can understand or appreciate what life is like with a fixator until they've had one. I tried to comfort her and give her my empathy, and support. Sometimes I think their should be a support group for parents of kids with fixators. Later as Amaya kept working I heard a cry that sounded very familiar. I turned back around to see that boy crying because the therapists were getting his knee to bend to ninety degrees. Ugh. I was instantly taken back to all those moments when Amaya cried out in pain. I looked up to see his moms face and had to fight back tears. I know what pain she felt. Its unbearable. Just the memory is hard to deal with. Jay told Amaya that she was there a few months ago and that he remembers her crying like that. I'm so grateful we're past that point. 
   Before we left I noticed that there were four kids in a small space who either had a fixator on now or in the past. All four are patients of Dr. Nelson. And like that mom and I said, "we're big fans of Dr. Nelson. He's amazing." I told Amaya she's a part of the "fixator club." The kids ranged in age from two to a teenager. They all wore different types of fixators for different reasons. Yet its a shared experience. These kids have endured, worked hard and are amazing. 
   After we left we went to another pharmacy to get replacement gliders for Amaya's walker. It was instant craziness. Amaya was tired and asked to ride in her wheelchair. I brought the walker in as well to try the new gliders on it, since the other two didn't work well. Halfway in the store Lidie was crying because she was tired and her legs were sore (from her shots earlier that day) and she wanted me to carry her. So I was holding her, a walker and helping push Amaya while trying to find the glider isle. I was flustered and tired and worn out. And dropping the walker a couple of times didn't help. Its crazy how quickly I could feel the extra stress and demands that therapy, and therapy homework bring. We got what we needed but Lidie had a meltdown in the car and I struggled to keep my patience. The evening was also a bit hectic because I was solo, since Josh was still in LA. Before I got the girls to bed I helped Amaya finish her school homework and then do her physical therapy homework. During the day I also had her rub and massage her scars, like Melissa requested. She was very tired and fell asleep within minutes. She was snoring by ten after eight. 
    I'm re-adjusting to a full schedule of school, therapy and all the normal things of life. Wish me luck. And patience.  Pardon any grammatical errors, I'm a bit tired. Thank you for reading along and all your continued support.
The girls waiting to see Dr. Dixon.
Lidie wondering about what would happen at the appointment. She was so funny. When she got her shots she told the nurse, "hey! That hurts!" And before bed tonight she told me, "Mom, we really have to tell those nurses the shots hurt." 
 
Jay had Amaya start by laying and lifting her hips off the table. After a few sets he had her lift her hips and hold them for a count of five. 
Then he had Amaya squat and bend her knee. She got close to one hundred degrees on her first try! Jay double checked the goals Melissa wrote for her and they said 110 degrees was her long term goal. jay was excited, because he remembers all to well how hard and painful it was to get to ninety degrees. And he was excited that she got so close to her long term goal. After a few more squats she was able to get to 105 degrees! Cool, huh?!
To help strengthen the muscles in her hip and bottom Jay had Amaya alternate lifting her legs to the side.
Then Jay had Amaya step up on a wooden step to help her put weight on her left leg. He had her work on swaying from side to side to get her use to putting her weight on her left leg. He had her step with the left leg first and stay there a bit then bring the right leg forward. She did that a few times and he added it to our homework list. He said its important that she practice walking; leading with her left leg, stepping with the heal first, putting all her weight on the left side, shifting her hips as she walks, and standing tall. 

Tuesday, November 27, 2012

Back to school and back to therapy

   After five weeks off from school (Amaya's school was off-track) Amaya returned to school yesterday. She left her wheelchair at home, took her walker instead and did great all day. She had no pain, walked around the classroom without her walker, and with it outside at recess, to lunch, and back.  She said she even got bumped in the leg a couple of times as she played at recess, but that it didn't hurt at all. Today on the way in to school one of the gliders form the bottom of her walker came off. Josh noticed it was worn all the way down. Later we picked up a temporary pair for two dollars. The ones we got are made for crutches so they don't fit it perfectly so we'll get a pair tomorrow. But these will work for now. The ones she had on earlier came off several times throughout the day. I asked Melissa if certain types worked best, but she said no, any kind would work good.
    Today we had our evaluation appointment with Melissa. We were all excited to go back in and see what Melissa thought of Amaya's progress. Melissa asked Amaya about school, how she maneuvers around, is she walking, or climbing up stairs, how often she walks or uses her walker or wheelchair. I told Melissa about the ways Amaya has adapted her mobility to get places quickly (scooting on her bottom, hopping, jumping shuffling, etc.) that aren't necessarily good for her. Melissa assessed Amaya checking her flexibility, muscle strength, how she walked, climbed on a step, her muscle control, etc. Melissa said its very important to build Amaya's strength so that walking can become easier for her. That seems to be the main thing to work on right now. She's going to see her three times a week then we can drop down to two times per week then to once per week as Amaya improves. She's hoping that we'll only need this one prescription for therapy for Amaya (for eighteen sessions). She said it was important to start strong so that Amaya will respond quickly to treatment and see some results. Melissa suggested spacing the sessions so that Amaya isn't too tired by the end of the week (possibly Monday, Wednesday and Friday). She said the sessions will be tough and Amaya will be in some pain.
    I asked Melissa about Amaya's bedsore. She said it wasn't that bad, but to keep an eye on it. She said it didn't feel blister-like, but more thick and hard with a "ledge" inside. Amaya told her that it hurts more when she wears tennis shoe style shoes because they hug the heel more. Amaya has been wearing some boots which Melissa said was fine to keep doing. I'm going to show it to her pediatrician tomorrow at her check-up to get her opinion.
  After we left Amaya said she was happy she got to go, especially to see Melissa. She also said she's excited to "get better." The work begins tomorrow, we have or first session and four homework assignments to work on. Since we scheduled today we had to take whatever dates and times were available, so we'll have a bit of a hectic schedule again, but we can handle it.
Here's what the glider under her walker looked like. The right one was slightly worn out more than the right so Josh wondered if she's putting more weight on that side. I forgot to ask Melissa. Either way they both needed replacing.
Here's Melissa measuring Amaya's knee in her left leg. She was able to get it to zero degrees (straight) for the first time in a long time (since the fixator was first put on). Amaya's right leg was able to get more than zero, to negative ten degrees. Which reminded Melissa of just how flexible Amaya is. 
Here's Melissa measuring her left knee. It was close to ninety degrees.
Melissa had Amaya gently push her left foot back with her right foot and she easily got to ninety degrees. It was so strange to see her get to ninety degrees so easily and quickly. Almost shocking. On her right leg Amaya was able to bend her knee to 159 degrees. Talk about flexible! I'm not sure if Amaya's left leg will catch up to the right one, or how soon. I'll have to ask Melissa when we see her next.
 
As Melissa was assessing Amaya she looked at her scars on her pin sites. She noticed how sensitive Amaya was to touch on her scars. Melissa told her that the sensitivity will never go away unless she intensely desensitizes it. She said it would take about one to two weeks of aggressive desensitization. You can see an indentation in the skin. That's where the scar tissue is attached to the muscles. 
Melissa used a towel to rub Amaya's middle pin sites. She said those were the worst, the top ones were the middle and the bottom ones were the best ones. One of the homework assignments Melissa gave Amaya was to rub her scars. She said to do it often with different textures (soft, rough, scarves, towels, socks, etc.), and to include massage. She did warn us not to use a metal scrubbing sponge (apparently she's had two patients do it over the years).
Here's Melissa checking the strength in Amaya's legs. I could see a big difference between her left and right leg. 
Sweet Lidie played zoo with the animals and people. She got back in the swing of things quickly.
Here's another homework assignment. We wrap the yellow band around Amaya's knees and have her pull them apart. Melissa first tried it with the blue band, but it was too hard for her (the blue band has more resistance than the yellow band).
Here's another homework assignment. Amaya is to stand on a step, hold onto a rail and lean her leg back to stretch the muscles behind the knee to help her walk easily. Her last homework assignment is to go from a standing to sitting position slowly while using both legs. 
After all the assessing and work the girls got to jump in the ball pit. They loved it!

A hard year

    During this past year we had some tough days and moments. I mean really hard. Some days were tough and then had moments of extreme hurt, frustration, pain, exhaustion, etc. In those times of overwhelming pain, exhaustion and heartache Josh would remind me that everyone is struggling with something. Everyone has a struggle, a challenge, a burden that they're dealing with. Remembering that others have pain and struggles of their own gave me some comfort and reminded me to be empathetic and kept me from getting overwhelmed with self pity. Its comforting knowing we're not the only ones going through tough times.
      I'm not sure what struggles you've faced this year but here's some of the things our friends and family have dealt with this year; sickness, death, divorce, separation, cancer, job-loss, surgery to name a few. Even the positive things have brought added stress to their lives. Things like pregnancy, new jobs, birth, relocating, moving, etc. Everyone has something their dealing with. Something that adds stress or worry or challenges them. Something that hurts them and makes life much more difficult to face. But, the fact that we're not alone on this journey, that we have one another to lean on, to vent to, to rely on, to face the day makes life bearable.
     This year has taught me that we are able to lessen the load of those around us, to brighten their day, to give them comfort and hope.  I've learned the power of empathy and kindness. And that our humanity binds us. If you're having a tough time know that you are not alone. Know that I send you my comfort, hope and love. You can email me, as others have, to vent and to share this journey called life.
   And I owe a great thank you to those who have lessened our load, brightened our day, offered comfort, joy, allowed us to vent, shared their friendship, and given of themselves. I am forever grateful.
I found this picture and quote on Facebook. It instantly caught my eye. It pretty much speaks for itself, a calm reminder to be kind to others.

     Below is a link to a music video called Everybody Had a Hard Year by Marz. Josh played this song for me several times when I was sad and overwhelmed. It calms me and comforts me. I hope it does the same for you too. It reminds me that we're all linked together in this journey called life. We all share life, journeys, challenges and experiences. Sorry I could only find this version that doesn't have the complete song. You can search on YouTube for it. There's also another version that I like just as much. It's by HASYMO and I added it below this one. I hope you enjoy them both. They both bring tears to my eyes and fill me with emotion.


Tuesday, November 20, 2012

Cleaning out the closet

     This morning I cleaned out the girl's closets. Thankfully the girls are quite cooperative and helpful when it comes to cleaning and organizing. I pulled out the clothes they've outgrown, pulled out clothes that they can fit into now, swapped summer clothes for warmer clothes, etc. I was taken back by all the things I found; Lidie is now wearing Amaya's old clothes (that are more recent than old), I looked through my old maternity clothes, through the girls baby clothes and then found some of Amaya's old shoes, her cast and knee brace. Amaya couldn't resist trying on the knee brace and cast; neither fit well. She said she remembered having to wear her knee brace when she was younger.
     She hasn't worn the brace since January 2011 after Dr. Nelson did her superknee surgery. Seeing the knee brace and cast together is pretty neat. Its a reminder of the time before the surgery when Amaya would trip, fall and skin her knee often. Then in just two hours Dr. Nelson was able to correct her knee (by using her fascia lata muscle to create ligaments in her knee). That still amazes me. She wore the cast for six weeks then never needed either one again.
    That was Amaya's first surgery, and the emotions still come up just by seeing these. There's sadness remembering the times when she would fall, shock and stress from the surgery, overwhelming joy after her knee was corrected. All these things bring up so many emotions. Mostly now its amazement, joy and gratitude.
Here's her cast and knee brace. She uses her old knee brace to hold the two pieces of her cast together.
    And then I found all these shoes that Amaya has outgrown. There were three pairs that had lifts on them from the past year and a half. The one on the far right is the first pair we bought after she started her lengthening and it's the first pair of shoes we bought without a lift on them! That's pretty amazing! The joy and energy that fills me with is huge. I couldn't bear to throw the shoes away, so I tucked them up on the closet shelf next to the cast and knee brace.

Saturday, November 17, 2012

Lidie's acceptance

     When we went to the chiropractor's office this week Lidie brought her amputated Barbies with her. She asked if she could bring one of them in to "get adjusted." I of course said yes. When we were inside she showed off her Barbie to several people and told them about the Barbie's amputation, how we did it (we cut them off with scissors), and why they needed it. Some people giggled, some thought it was cute, and I'm sure some were a bit confused. I told them that after seeing Soul Surfer Lidie wanted a  Bethany Hamilton Barbie with an amputated arm. Since they don't make them, she asked if we could make our own. I explained that amputations, limb loss, and prosthetics are a normal part of Lidie's life because she sees so much when we go to appointments at Dr. Nelson's office and especially at physical therapy. To her amputations, limb loss and prosthetics are normal and a part of everyday life. She's asked us several times why there aren't any people on TV with prosthetics, or dolls with prosthetics. It doesn't make sense to her. As I explained all that to them, people were intrigued and smiled. One of the doctors said that we'll never know where that will lead her later in life. He said that she might want to be a nurse or design prosthetics or something else in that field. All because she got such early exposure to it all.
    I wonder if she will decide to pursue something along those lines. Whether she does or doesn't I know that she will always take her empathy, acceptance, and understanding with her. At age three she's already learned to accept people, to smile, to not stare, to ask questions, that we're all different and that is okay, that all people should be represented in toys, television and daily life, and that limb loss doesn't limit someone. She has much to teach the world! She's amazing!
Here's Lidie with a couple of her amputated Barbie's. The one on the left has her right arm amputated below the shoulder. The one on the right has her left arm amputated just below the shoulder (due to a shark attack) and then both legs amputated at the knee (also from a shark attack). She also has a polly pocket with an amputated arm and another with no legs.

Tying shoes

  Yesterday I taught Amaya how to tie her shoes! Although I've tied many shoes for kids throughout the years I've never actually taught anyone to tie them before, so I was pretty excited! I was surprised how easily Amaya picked it up, probably because she's older (seven years old). She was ready to do it and caught on quick. One of Amaya's homework assignments during her off-track time was to learn how to tie her shoes. Her teacher said that several kids in the class didn't know how to do it yet and asked if parenst could work on that during the time off. 
   We had been postponing that because she wasn't able to do it earlier this year because of her fixator. It was too hard for her to bend down far enough to reach her feet to tie her own shoes. Mostly because her left knee wouldn't bend enough to allow her to do it. She would loose her balance and fall over. It was easier to use velcro or slip on shoes during the lengthening. We figured that she had enough to worry about, take care of and focus on and that tying shoes could wait. We figured that when the time was right, we would get around to it. And now that it was assigned and she's able to bend a bit better we did it. 
    Earlier in the year (about halfway through the lengthening process) an aunt of mine asked Amaya why she didn't tie her own shoes. She, very rudely, told Amaya that "she was lazy" for using slip on and velcro shoes at her age. I was furious and speechless. Lazy?! Of all the things you could call Amaya, lazy is the last thing you could justifiably call her. She has worked so hard, day in and day out for months. Obviously my aunt didn't get that otherwise she wouldn't have made such an ignorant and rude comment. Months later my aunt's comment still upsets me, so thank you for letting me vent. Because I don't care that Amaya learned to tie her shoes later than other kids. I care that she learned to tie them when she was ready. And I'm proud of her because she worked so hard to be able to bend her knee enough to be able to tie her shoes. 
Here is the first pair she tied! I thought it would be easier if she tied a pair that wasn't on her foot first then try a pair that was on her foot. Oh, and did you notice her shoes don't have a lift on them? She hasn't worn a lift since March! 
Here she is tying her shoe on her right foot. 
Here she is tying her left shoe. It was tougher to get her shoe on and she wasn't able to bend her knee as much as the right foot. It made it a bit trickier to tie it, but she kept at it and didn't give up. She ended up tying her shoes several times to practice and get good at it.

Thursday, November 15, 2012

Three stores

    This week I had some shopping to do so I took the girls to three stores in one day. It was a bit hectic at times. I wonder what people must think when they see us. The first store we went to we only had a couple things to get so I had Amaya in the wheelchair, Lidie walking holding my hand and a reusable grocery bag hung on the back of the wheelchair for our groceries. Halfway through the store Lidie asked to sit on Amaya's lap. Amaya didn't want to share her chair with Lidie (its not very comfortable for her). This led to a mini-meltdown on Lidie's part. She doesn't understand why Amaya gets to sit and she has to walk. I had to carry Lidie, help push Amaya and then pay for groceries. Ugh. So as you can imagine shopping isn't always easy. But we still had two more stores we needed to do, so we pressed on. At the next two stores I decided to do our train (where I pull Lidie in a shopping cart and Amaya holds on with her wheelchair to the shopping cart and we pull her). This way is tricky as well, but I needed to keep both girls contained, entertained and busy. It's hard to navigate through small isles, but we did okay. We usually get lots of stares and smiles as I pull the girls along.
    At our last store a man stopped me and asked if Amaya would be needing a wheelchair for awhile because he knew of a place to get them at a discounted rate. We ended up talking for several minutes about Amaya's PFFD, her surgeries, therapy etc. I showed him pictures of her fixator (most moms show off kid pictures, but I show off fixator and x-ray photos). When I told him about how hard she worked at therapy he said "I can tell. She's going to be just fine. She's got a sparkle in her eye." I was so happy and proud that he saw that in her. Several others have said the same thing to me. He said that when things happen in life you have to decide if you'll keep the sparkle in your eye or gain a chip on your shoulder. He said after his leg was amputated he had to look deep within and decide to not let himself get a chip on his shoulder. He said that when you get a chip on your shoulder you isolate people. He talked about that when you have a smile on your face you invite others to talk to you and to learn about disabilities. He said that often kids stare. He said, "I'm sure you know about the stares." We do. He said that when you smile and talk to them, then they won't be so scared later, or stare. It's like being an ambassador for disabilities. He made lots of sense. And I was so grateful that we met him.
    We found out that he is a member of PossAbilities just like Amaya and he did the swimming class over the summer too. He said he got in the water for the first time since he had his leg amputated. It was such a nice encounter. We made a new friend in David and will be seeing him at the PossAbilities diner in two weeks. He was debating whether to go or not since he's single. But we invited him to sit with us, so we'll be seeing him them. 
Lidie and Amaya in the parking lot. This is our grocery store "train" that we make.

Four weeks since the fixator was removed

    It's been four weeks since Amaya had her fixator removed. We are adjusting to "normal" life and realizing that life after a fixator isn't the "normal" we're use to. Life with a fixator wasn't normal by any means, but we adjusted and did fine. And now we're adjusting to a new normal and making it work. Here's some updates:
     Amaya's scabs have all fallen off and her scars are healing nicely. The scabs all fell of on their own at about week two or three. They didn't hurt at all, most times she wouldn't notice until they were gone. She's massaging her scars to help release the scar tissue. Dr. Nelson and Melissa (her therapist) had suggested we do that to help release the muscles.
     Amaya's pain has pretty much disappeared. She hasn't needed any pain medication or hot pads for over two weeks. Occasionally her knee is stiff, but it passes after a minute or two. We massage it and stretch it and that seems to take care of that. Amaya's knee is still popping, but not that often and it doesn't seem to bother her very much (she said the pops get up to a two or three on the pain scale). It seems to be lessing in frequency, which is nice.
     Amaya has been sleeping through the night, and in her own bed for two weeks now. This has been such a nice treat for us all. Having her fall asleep within minutes has been such a relief. Her sleeping through the night allows me to catch up on sleep. And when we're well rested we do much better.
      Amaya has been off-track from school for three weeks now and has had plenty of time to rest and recuperate. She'll be returning to school in a week and is very excited to go back.
     Amaya's appetite has increased and she's eating almost twice as much as she did with her fixator on. She had lost about seven pounds when she had it on.
     Amaya is using her walker to help her walk around the house and when we go out. She uses her wheelchair for long walks (like malls, stores, etc.). We use to put the foot rests on to give her extra support and to protect her feet from being bumped, but now we've removed them completely. Amaya is finding ways to move around (shuffling around, scooting on her bottom or holding onto things). She's been getting a bit frustrated that she isn't able to walk or run easily or independently. She also isn't able to bend her leg fully, but extending it straight has gotten easy. We are still doing our stretches and physical therapy homework. It's neat to see her move around, but a bit sad because I know how badly she wants to walk.
    After spending a couple hours on the phone yesterday (plus the calls I made last weeks) and much help from some referral coordinators I finally got Amaya an appointment with her physical therapist. Unfortunately we still need to wait another week and a half for our appointment. The appointment will be an evaluation to see where Amaya is at and to make a treatment plan. Then after that we will schedule the rest of her appointments. Amaya is excited to be going back and ready to work hard! She is very motivated and determined.
    Amaya and Lidie often mention their shock, amazement, confusion about the whole situation. They often ask questions or say things to help them process and make sense of things. Amaya has said things like, "I can't believe I had hardware."  "Do others do eight cm?" Lidie asks, "Hey remember when Amaya had her fixator?" "Why don't we go to therapy?" They talk about the surgeries, the fixator, therapy, etc. in normal conversation throughout the day. Amaya is most frustrated by her progress in walking. If you read my post yesterday you'll understand. But, now that we have the therapy appointments she's optimistic and hopeful. She didn't want to talk about anything yesterday and wanted some space. At bedtime I explained what the rush rod is, how it works (its there to support her femur and help prevent any breaks or fractures) and why she's having a hard time with walking (tight muscles and re-learning to walk). She was sad and frustrated, which is always hard for me to see. But, she's only seven and has shown a great deal of maturity and has dealt with things as best as she can. I'm hopeful and optimistic because her strength, resilience and drive will help her continue to heal and recover.
    I sent Dr. Nelson a picture of Amaya's femur and had a question about the rush rod. Toward the top it looked like the rush rod is sticking out of the femur. Dr. Nelson emailed me back. Here's his reply, "The rod is the ideal length making it less traumatic for removal. It is actually well placed down into cartilage that you do not see on x-ray. Frequently we even leave them slightly more proud than that." I was grateful that he replied to my email. His message informed me and calmed my nerves. There's so much we don't know. His patience and information have helped us so much. Amaya still doesn't understand why the rush rod has to stay in for several years. She thinks its part of the reason she isn't walking, but as far as I understand that isn't true.  She asked, "If its a rush rod, why don't they rush to take it out?" She's not sure why it would stay for years. I'm sure its hard to process for a seven year old.
Here's my determined girl! She pulled her four foot tall bear off her bed, down the hall and up the stairs all by herself! This is Freddy Weddy, a bear she won at the chiropractor's office.
Here's what Amaya's heal looks like. Remember she had a bed sore there. Its still there a little bit. She said it hurts when you push on it, and when she steps on her heel first. Maybe that's keeping her from walking as well. 
Sisterly love; Lidie was spotting Amaya up the stairs. Its sweet to see Lidie help take care of Amaya.
Here's the picture I sent to Dr. Nelson. Doesn't it look like the rod is sticking out of the femur?
Here are her pins at her hip. These look so long. 
Here's her pins above the knee.
Here's what her shin looks like. 
 
Here are her pin sites during the day, they don't seem to look as red then.
Here's Amaya before bed doing some of her stretches. We use that blue band to help her straighten and bend her knee.

Wednesday, November 14, 2012

A dream

    When Josh went in to check in on Amaya this morning she seemed a bit off so he asked her what was wrong. She had a dream, but said she didn't want to talk about it because it wouldn't come true. She said that in her dream a nurse came to the house and was prepping her for surgery to remove the rush rod in her femur. She said the nurse told her she could only eat three things the night before the surgery so she chose macaroni & cheese, pudding and chocolate milk. She said she was sad when she woke up because it wasn't true. Amaya said she wants the rod to come out. She said she can't bend her leg or walk very well because of it (that's not true). She was frustrated and a bit sad. She told Josh she wanted to stay downstairs all day and be alone. When I went in she didn't want to talk to me about it at all. I was a bit sad. Josh said its okay because there's nothing wrong with taking some time to yourself. Its just hard for me to know that she's sad, frustrated, and dealing with some "heavy" things. I want to remove all her pain, anxiety, fear, stress and worry.
    Its been an hour and a half and she's still down stairs. She's in my bed watching a movie and eating breakfast. She said she doesn't want to talk about it and just wants some space and to be alone. About two hours later she came upstairs and joined Lidie and me on the couch, but asked that we not talk about anything. So although I have many questions for her and things I want to say, I'm honoring her wish for space and not mentioning anything. So I'll wait until she's ready to talk.
    The past few days Amaya has mentioned her frustrations. She's frustrated that she isn't walking yet. She often expresses a big desire to run, walk, cross her legs, be able to move freely. Several times she's asked about when she'll start therapy again. She's very anxious to go back so she can start learning all these things. She's excited and motivated to progress, so I'm confident that when she goes back to therapy she'll work hard and progress quickly. We've been doing our stretches at home, but its not the same. She said she wants me to up the amount of therapy we're doing here at home.
     I put another call in to therapy this morning to see if we could schedule her appointments yet. They said they processed some paperwork last week, but still didn't have a referral processed and in place. I put in a call to Marilou (our amazingly helpful referral coordinator). Marilou said she sent paperwork over last week, but will resend it today and email me a copy. Its always a bit or a process to get referrals processed and approved. Its a bit frustrating and time consuming. As I'm typing I already received the referral from Marilou. It says its for a re-evalutaion and continued therapy for six weeks (3 times per week). It says its for "PT evaluation, manual therapy, gait training therapy, nueromuscular reeducation, therapeutic exercises, vasopneumaic device therapy." Now that I have the paperwork I need to make a few more calls to get things taken care of,  hopefully by the end of the day. Wish me luck and lots of patience.

Monday, November 12, 2012

To bounce or not to bounce

   This weekend we went to a birthday party for our friends Abby and Alex. At the party there was a bounce house, which the girls were excited to bounce in. Amaya asked if she could bounce in it, and I wasn't quite sure what to tell her. She just had her fixator removed three weeks ago, and even though Dr. Nelson said Amaya was cleared to fully weight bear, I wasn't sure if that meant it was okay to bounce. Josh told Amaya that she could try it. He said she's good about listening to her body and would know if it was too much or hurt (she does a great job of listening to her body and only doing what she's comfortable with). Plus she was one of oldest kids at the party and the biggest kid in the bouncer so we didn't have to worry about bigger kids being too rough or hurting her. She went in and did great! She stayed by the side so she wouldn't have to worry about other kids falling and bumping into her leg. She said it didn't hurt and had lots of fun. Here's some pictures and video from the day.
Look at her go!
She got so high!
You can see that when she jumped she was putting most of her weight on her right leg. She's good about doing things in a way that allows her to do stuff but without putting herself at risk.
Later that day we went to the mall. Amaya walked the entire length of the mall! It was hard work, but she did it! That was the most she's walked with her walker since her fixator was removed three weeks ago. She walked fast for this part but still had a hard time stepping with her heel first. Then she played in the indoor playground.
In the playground at the mall she climbed up on this car all alone. With Josh's help she would jump off. It was nice to see her find a way up there. If you're wondering who the cute baby is, its my nephew Nixon. 

Saturday, November 3, 2012

Quotes

Here are some of the quotes that I found while Amaya had her fixator on. I thought I'd share them with you. I hope you enjoy them.

"If you only have one smile in you give it to the people you love." Maya Angelou

   I found this quote after a day at the playground with Lidie. I had taken her to the park for some much needed one on one time. I was tired and worn out after a rough night with Amaya an a hectic week. While we were there a little girl came over and asked me to watch her run, then climb, jump, etc. I tried to be encouraging and friendly, but I was so tired and just wanted to spend time with Lidie. I noticed the girls was there with her mother and six other siblings, and she just seemed desperate for some one on one attention. So I felt bad for her, and even thought she deserved that one on one attention I wasn't bale to give it to her. Because if anyone was going to get my one on one attention it was going to be Lidie. After all she's my child and needed and deserved some extra TLC. I kept trying to be polite to the girls, but I started to get annoyed. As I tried to focus on Lidie she started competing wit her for my attention. After we left I felt terrible. I wished I had more energy and time for that girl. After all the poor kid just wanted some extra attention. But so did Lidie. And at that moment I only had enough in me for one child, so I chose Lidie. That day I realized my limitations, especially during such a tough couple of months. Then I found this quote. It was so liberating because even though that girl deserves love and attention at that point I was only able to give it to Lidie. And she's the one deserving of my love, time and attention. I though of this quote often. especially on days when I was stressed, tired and worn out. there were other things that asked for my attention; conversations to have, things to do, etc. But it just wasn't in me to do any extra things. We were in survival mode and I had to focus on my immediate family first.

"Be a rainbow in someone else's cloud." Maya Angelou
I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back." Maya Angelou

     These two are great reminders to always strive to make the lives of others better, even when yours is tough. As we receive help from others we still need to be willing to help others and make their journey a bit brighter and easier. That's one of the main reasons I write this blog, for other families whose journey is like ours, whose challenges, struggles, hopes, fears and worries are like our own. 

"Children's talent to endure stems from their ignorance of alternatives." Maya Angelou

   I found this when we were almost done lengthening and preparing to start the consolidation phase (when the new bone hardens). Things in therapy were very tough at this point, overall most things were. Things were so hard for Amaya and yet she pressed on, enduring hardships and never giving up. I knew there was something amazing about how she handled everything. Maybe that's why young kids handle lengthenings so well, their ignorance of alternatives. But it made me a bit sad, was I not giving her another option? Was I the one giving her something difficult to endure? It was a it bittersweet reality. She had a lot to endure, but she was doing it so well. 

"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired and success achieved." Helen Keller

     If you know me you know I'm a huge Helen Keller fan. I did a research paper and a speech about her in college and I was instantly hooked. She's amazing, but that's a conversation for another day. This quote gave me hope, comfort and encouragement. All that Amaya was going through was going to help develop her character. She would come out of all this a different person, a stronger, wiser, soul. I'm inspired by how Amaya handled what came her way. In fact the same goes for Lidie who had to endure a lot at a young age. I look forward to the future and who they will become and all they will do.

"While they were saying among themselves it cannot be done, it was done." Helen Keller

     Throughout this entire journey we had several people worry about and for us and doubt us. They doubted how we would get through this, said it was too tough,etc. They would say things to us like "how are you going to get through this?," "we're so worried about your mental health." "This is going to be so hard." "We're not sure how you're doing it." And many similar things. They certainly weren't very encouraging or helpful. I'm not sure if people realized how unhelpful those comments were. I gave them the benefit of the doubt thinking that they were just surprised by how difficult things were and were expressing their shock, but nevertheless they weren't the encouraging words we wanted to hear. Yet somehow we managed, we survived and we did it. And to those of you who never doubted us, thank you.

"Although the world is full of suffering, it is full also of the overcoming of it." Helen Keller

     I love this quote. Its realistic, yet hopeful and optimistic at the same time.  

"The world is mud-luscious and puddle-wonderful." E.E. Cummings

    Something about this one stuck with me. The world is full of mud and puddles, but they're wonderful and fun! Not a mess to begrudge. Sometimes its a matter of perspective.

Tangled

    This morning I was watching Tangled with the girls. As we watched the scene in the Snuggly Duckling where they sing the song "I have a Dream" I noticed for the first time then I pointed out to the girls that Hookhand sings, "...Though I do like breaking femurs you can count me with the dreamers..." I pointed out that he likes breaking femurs and was about to tell Amaya that that was what she had done. She interrupted me and said, "Man I don't want my femur broken. I've already had surgery there and I don't want anything else." I smiled and bit my lip. She in fact has had her femur broken, but maybe she doesn't need me to remind her of that. I've explained it to her before, but maybe she's choosing to ignore that fact. I don't blame her. Ignorance is bliss.
   Then I caught myself thinking 'don't femurs take a long time to heal?' It's the biggest and strongest bone in your body after all. Then I had a flashback to one of the PFFD blogs that I read as we prepared for Amaya's lengthening. After their son had his rod put into his femur his femur broke and his rod came out of the femur and he had to be taken into surgery to correct it. To add to that craziness they had to fly to Florida like that. I know that's a pretty rare case, but I still have a bit of worry and wonder in the back of my mind. But, I'm optimistic and hopefull. Things have gone so well up to this point, she's had excellent care, and has healed so nicely. So I'm hoping for the best, but can't seem to stop the worrying. Wish me luck, it seems that a mother's heart worries and wonders and is constantly thinking of all the possibilities (good and bad).

Friday, November 2, 2012

Post-op after fixator removal

    Yesterday we had our post-op with Dr. Nelson. Its hard to believe its already been two weeks since Amaya's fixator was removed. She's finished her antibiotics, hasn't needed pain medication in a week and is slowly adjusting to walking. Over all she's doing very well.
    When we got to the appointment I went in and registered Amaya for her appointment. When I went to the office to register her for her x-ray I met a very nice woman from Santa Cruz, Ca. She had to update Amaya's account and resubmit copies of her insurance card, my ID, etc. It took longer than normal to process all the paperwork so the woman and I talked for a few minutes. We talked about Santa Cruz and how much we both miss it. What I wouldn't do to walk along the beach, explore the butterfly garden and enjoy the cool fall weather there with Josh and the girls. It's a favorite family spot, that we haven't visited in over a year. As the woman was talking she asked what Amaya had done and why. As I started to explain things to her she was surprised, shocked and amazed. I'm always surprised by other people's reactions. I forget that their outsiders and don't know what our reality has been for months and years now. They've never heard of PFFD much less a lengthening surgery. Its nice to see that reaction, the wonder and amazement. It helps remind me that not everyone shares my definition of reality and that I shouldn't take for granted just how amazing it all is! The fact that Amaya has gotten such amazing treatment and that her leg will never be the same. It really is something to celebrate!
     After x-rays we waited in the lobby for almost two hours to see Dr. Nelson. In the lobby Lidie played with two girls, colored on our paperwork, shared snacks with friends (new patients don't realize how long the appointments are and how antsy and hungry kids get), Amaya finished her book, and I got some reading done as well. While we waited a woman came over to ask how Amaya was doing. I recognized her, but couldn't quite place her. Then I realized it was because last time we saw her (a few months ago) she was still pregnant. One of her sons has PFFD. During the lengthening process Dr. Nelson introduced us to them so we could meet and share some of what's to come with them. Her son is doing well and adjusting to his shoe lift. He will need three lengthening surgeries throughout his life. His first will be next year. She was curious how Amaya did with her lengthening, how much new bone Amaya gained, and how she was doing now that her fixator was removed. She had many questions and we were happy to answer them all for her. She wondered if Amaya could walk now, was amazed by how much new bone Amaya gained, asked what Amaya's pin sites looked like now, how therapy went, at what age we started treatment, what is next for Amaya, etc. It was nice to run into that family, to see that their son is doing well and to help them a little bit. We think of them often and wish them well on their journey with PFFD.  It's so nice to meet other PFFD families and to share our experiences.
    Once we got back into a room the nurse took Amaya's temperature, and asked about pain, etc. Then a doctor came in to see us first. He went over Amaya's x-rays with us, and asked how she was doing. He mentioned that he didn't like how far out the rod stuck out from the top of Amaya's femur (I forgot to ask if something needed to be done to correct it. I emailed Dr. Nelson last night to see what he thought, but haven't heard back yet). After a few minutes the resident who helped the day that Amaya's fixator was removed came in. They had a new computer system they were using that day for the first time and things were taking a little bit longer. Then Dr. Nelson came in. He asked Amaya about her Halloween. She gave him his card and thanked him for her outfit. He asked how her pin sites and incision were doing. We said good, so he said he didn't need to look at them. We mentioned that her knee is popping occasionally. He said that was normal and could be caused by the scar tissue around the knee. He said it should get better with time. He asked if she was able to bend and straighten her knee. She showed him and he was happy with that. He asked if she was walking and how she was doing. We said she was walking more with the walker, but still hesitant to walk independently. He gave us a prescription for physical therapy. He wrote it for three times a week for six weeks. Dr. Nelson was happy with Amaya's progress. He said her bones looked good and were healing nicely. It was lots of great news. We won't go back to see him for two months from now.
    After the appointment we went over to the hospital cafeteria for lunch. Amaya requested a veggie corn dog and hospital pudding. As we ate Amaya kept looking around the cafeteria to spot out the female doctors. She was so happy to see so many there. Even at her age she's aware that their are more male than female doctors. She knows she'll have to work extra hard to be one of those few. We remind her that she can do it! She has the strength, resilience, determination and drive to do it!
     After lunch we went over to physical therapy to visit Melissa. As we walked in Amaya said, "I don't miss this place, just Melissa." I don't blame her, she's endured some very intense, painful therapy. I reminded her that when we return for therapy it should be easier than it had been during her lengthening. When we walked into the gym we looked around for Melissa but didn't see her at first. Jeremy came over first and said hello. He told Amaya that she looked about ten pounds lighter. That's about what her fixator feels like. Then Melissa ran over and  picked Amaya out of her wheelchair. She gave her a big hug and said how much she missed her. Lidie got excited to see Melissa and gave her a big hug. I gave Melissa the prescription from Dr. Nelson. She said that this will probably be the only one he writes for her. She told Amaya that it gets easier from this point on. She asked Amaya if she could show her how she walks so Amaya stood up and walked about ten steps toward her then back to her wheelchair. We told Melissa that Amaya is still doing her stretches, band work at home and walking with her walker. Melissa said to keep practicing and she'll continue to improve. It was nice to see Melissa and the other therapists. We'll be seeing them again soon.
   After visiting with Melissa we walked over to the playground on the back of physical therapy. The girls played for over half an hour. It was so nice to see Amaya ditch her wheelchair to get up and play. She was mobile; walking, hopping (sometimes she does that because its quicker than walking), climbing, sliding down the slide, swinging on the rods, and playing restaurant with Lidie. It was so nice to sit on a bench in the shade with Josh watching our girls play. Maybe I'm getting old and sentimental, but I get so much joy from those small moments. I realize how precious they are and that they don't come easy.
Amaya modeling her surgical gloves. She was so excited, she didn't take them off for hours! 
She made herself a business card out of one from the orthopedics office. She wore this on Halloween night to trick or treat. She had a great time!
In the waiting room holding the card she wrote Dr. Nelson. 
Here's the side view of the top of her femur. The first doctor said that her hip has healed so nicely.
Here's another look at that x-ray.
Here's a close up of the top of the femur. You can see the three holes from where the pins use to be and the rod in her femur. It kind of looks like a crochet hook.
Here's the front view of the femur. This is when the doctor noticed how far up the rod was. It's crazy, it looks like its sticking completely out of her femur. You can also see the pin holes here too.
     Here's the bottom of the femur. You can see where the three pins went through her bone and the healing that's gone on in two weeks. Both doctors said the bones were healing up really nicely. You can barely see the new bone growth that Amaya gained during her lengthening. Her bone is healing so well and her new bone is hardening so well that you can barely see the difference between the new bone and the original bone.  And you can also see how straight the femur is here. Before her lengthening her femur turned a bit here, but Dr. Nelson corrected that for her as well. Looking at these pictures and knowing that its my daughter's leg I'm looking at is quite overwhelming and emotional. I'm speechless. 
Amaya outside of physical therapy.
Amaya and Lidie playing on the playground. Amaya did so well on these swing-thingsp. that she didn't need us to spot her at all!
Looking across the playground I saw Amaya's wheelchair parked and her playing. It was such a great sight!
She got herself to the top of this wall by herself and Josh helped her down. 
She also climbed up and down the stairs, slid down the slide, stood, walked and played. 
     Here's a look at her middle scabs. The middle one has fallen off but the top and bottom one are still there. They're healing well. Her scabs continue to fall off on their own. When I showed this picture to the mom in the lobby she was so surprised. She said she pictured them looking like holes from a piercing, that go through the skin. She was relieved to see how well Amaya was healing and how her pin sites looked now. You can see an indentation in her skin. Its from the scar tissue. Melissa recommended massaging the skin to pull it loose from the scars and muscles. Its not very painful, but a bit uncomfortable. But Amaya has been doing it almost every day.