New Year's Eve

     Today is the last day of 2012. I have to sigh and take a deep breath after that sentence. I can't begin to explain or sum up all that this year was, brought, taught me, and showed me.
     Intense. That's the one word that fits this year. Intense. This year was intense. The pain was intense, the successes intense, the love intense, the joy intense.
    This year I watched my girls be brave, bold, kind, empathetic, supportive, strong, resilient, amazing. Our family faced two surgeries and overcame them. This year my girls learned that amazing things can happen. Like growing 3.1 inches of new bone! They learned that you have to work hard for dreams to become realities. Like countless hours spent at physical therapy. This year our family relied on one another for survival, strength, comfort and hope. This year has changed us. Forever. We are stronger, resilient, humble, grateful, kind. I know that if we can survive this year, we can survive anything. We can always look back with pride. I am so proud of my family: Amaya, Lidie and Josh and myself. We faced a challenging year and survived. We not only survived, but found ways to thrive, to help others and to enjoy life. This fixator didn't break us. We survived.
     Regardless of what 2013 brings we will embrace it knowing that as survivors of a lengthening we can endure it, we can get by, we will find a way to thrive and enjoy life. Yes part of me is hoping and looking forward to an easier year. A healthy year. A year without surgeries. But, I have no guarantee. The only thing I can count on is my family and love, and joy and hope and friends.
    I hope that we have inspired you, challenged you, encouraged you even just a little bit. I hope we've to he'd your lives as you've touched ours. I wish good things for you. I wish you peace, love and joy.
      Thank you. I'm grateful to you all for being a part of this year and our journey. You helped lighten our load. You sent your love in cards, emails, calls and gifts. We are so humbled by the love, help and kindness you all showed us. Thank you. Your friendships mean the world to us.

I don't want to go

     Friday morning I made another round of calls. Still no answers on any of the referrals. Finally I got a hold of someone who thought they were faxing the requests to the wrong number so I gave them the correct number. I'm trying to be patient because its during the holidays and many people are out of the office. They deserve a break and time off to be home with family. 

   We had therapy in the morning so we had to get up and get going. Not exactly fun during winter break. Amaya said she didn't want to go. She never says that. She said she wanted to stay and play with Lidie and her cousin Jude. On the drive down I reminded her why we go to therapy, that she's not the only one doing therapy, and that I was going too. Neither one of us got a day off. She was quiet for awhile then thanked me for going to therapy with her. I reminded her that this is a team effort: Dr. Nelson, Melissa, Josh, Lidie, myself and her are all working hard to help her. I told her that our friend Rory was going to have therapy that day and that she should think about her instead of herself. Rory is in pain and having a hard time with her recovery and therapy. Not to mention that she's only two years old. Amaya loves Rory and decided to work hard for her that day. She asked to listen to "the Eye of The Tiger to "pump me up!" Once we were in therapy Amaya did excellent! She worked hard, was focused, listened and cooperated.

 Melissa had her start by balancing on this ball thing. Then she had her move her legs in to make it a bit more challenging. 

Then Melissa had her squat with an exaggerated butt sticking out. Unless its was exaggerated Amaya couldn't get her posture and bend well. 

Then Melissa did the blood flow work on her left foot.  

Then Melissa had her stand on her left leg. She was really wobbly and was only able to do it for a eight seconds. The day before she was able to stand for thirteen seconds. Melissa said its because her legs are tired and sore from working three days in a row especially after having a week off. 

Then Melissa put a pound weight on her leg and had her lift her leg sideways. She said the weight would force her to use her butt muscle. Melissa said that there are many muscles that Amaya uses to compensate for her lack of muscle in her butt. Melissa said she can tell just by looking at her what muscles she's using instead of her butt muscle. She said its a hard muscle to isolate because there are so many that Amaya can and has been compensating with. 

Then she had her do a crab walk. It was hard for Amaya to bend her left leg. You can see how much she bends her right leg. the left leg comes nowhere close to that. Melissa had her slow down to try to get her left leg to bend past the right foot. But she had a hard time doing that and keeping her butt off the floor. I could tell amaya was tired and worn out. But she didn't give up. She just kept on going. After that Amaya told Melissa that her knee hurt so Melissa massaged it for her before moving on to the next exercise. While she massaged it Melissa touched Amaya's bottom pin sites. The top left one was really sensitive to the touch. 

Melissa tied Amaya's knees to help keep them aligned while she squatted. 

Then Melissa had Amaya work on the elliptical. This picture is blurry but you can see Amaya's face is grimacing in pain. 

Then I told her to smile for Rory and she did. I'm always amazed how she can smile through pain and tough times. But she really wanted to send an encouraging picture to Rory who is working hard in Florida. Amaya worked for five minutes and did 2/10 of a mile. She's gotten as high as 1/4 mile before. 

     Amaya's knee measured at 95 degrees to start. She jumped to 98, 102, 103 where it started to hurt a lot. Melissa had it stretch and breath through the pain. Then Amaya got up to 107. Melissa asked her if she wanted to go to 110. Amaya said, "yeah, okay, go for it." Then she got 109 then 111 degrees! Melissa held it there to let it stretch. Melissa mentioned that Amaya's knee looked puffy and that I should ice it for ten minutes at home.

      When we got home there was a message from Marilou telling me she tracked down the referrals and was processing them. She ordered rush orders on them. I called her to thank her for her help and efforts. She was so kind and checked on the orders while I was on the phone with her. She said the orders for the plastic surgeon were already approved (within a few hours). She got Amaya a referral to a pediatric plastic surgeon at Loma Linda Children's hospital which I appreciate her doing. She said the referral for the boot was finally received and submitted (it had been faxed to the Yucaipa office instead of the Redlands one all this time) and they should receive and answer on Monday. She said it will be handled through an office in Redlands so we should be able to get it quickly once its approved. She also said that the referral for the opthamologist was approved and we should be able to call over and schedule an appointment.I called the eye doctors office and they said the doctor was reviewing the notes and deciding what to do. He had already left for the day and would be out on Monday so we should hear from them later next week. Marilou still hadn't received the orders for continued physical therapy (they had to go to Dr. Nelson's office then to Amaya's pediatrician first). But she made a note to keep an eye out for it and to make sure its processed before her last appointment on the fourteenth. I let her know how much I appreciated all her help and efforts. She's amazing. She thanked me for my patience and wished us a happy new year. She was sympathetic to all the new referrals we were needing and said she had hoped things would be easing up for us. I said "me too." Then thanked her and wished her a happy new year. 

     Even thought we don't have any referrals in hand yet, or any appointments scheduled or a boot in hand I know things are finally in motion, so I'm a bit more relaxed, very thankful and optimistic. 

     Later in the evening I iced Amaya's knee, which she didn't really enjoy at first. Later she asked me to ice it again because it hurt. At bedtime she said her knee hurt but she fell asleep without pain medication. But she woke up in pain about twenty minutes later. I massaged her knee until she fell asleep then she stayed asleep the entire night.  

  Thanks again for reading along and caring about Amaya and her journey. And keep sending loving thoughts Rory's way.

The queen of physical therapy

     I started Thursday morning by spending half and hour on the phone trying to track down Amaya's referrals especially for the boot that the wound doctor wants her to wear. I wasn't able to get any answers, just more numbers of people to call and I left some messages. Its very frustrating! All I kept thinking was that we're never gong to get that boot in time! Her wound care appointment is on the tenth and we still don't have it. The wound doctor wanted her to wear it two to three weeks before he saw her to see if it helped at all. I'm not sure if it will help at all, but I know I want to do my best to try if it means sparing her from another surgery. 

    Since we had some family come up for the day Josh and Lidie stayed home form therapy. Amaya didn't like having to leave family to go to therapy and I don't blame her. I was glad that Lidie got to say and had a day off from therapy. Josh mentioned that he gets a day off form work, a winter break, but I don't get one from therapy. He had offered to take her and that I could stay home. But it just doesn't seem right. She doesn't' get to miss so why should I? And I like going. I get to learn things from Melissa; new exercises and homework to do with Amaya to help her recover and heal. It was nice that Josh acknowledged that I don't get a "day off" though. 

   On the drive over we said listened to The Eye of The Tiger (over and over and over). As we passed by the Children's hospital we said our hellos to the people at the hospital and at the Ronald McDonald house. Amaya said it seemed like a long time since her fixator was removed. I told her it had been three months. She said that was a long time. But, its funny because its not even half as long as she had it on (7 1/2 months). But, its funny because originally Dr. Nelson told us that she might have to wear it for ten months. Its only because she lengthened so quickly and healed so well that it was able to come off ahead of schedule. She told me she was excited for New Years and for 2013 to come. When I asked her why she said, "Because I get to see Dr. Nelson in January." I don't know of many kids that look forward to seeing their doctors, but Amaya does. And that should tell you something about how great Dr. Nelson is. 

    Melissa said she submitted the new prescription for continued therapy for Amaya. She said it will be for the same amount, three days per week. I think we hoped and many expected it to drop down to twice or once per week by now, but Amaya isn't at that point yet. Melissa wants Amaya to be able to walk okay so that she can build to running. I asked her how long it takes to develop a muscle after its had some atrophy. She said minimum one month of hard work. Then she mentioned how much of a difference a week off made for Amaya. As much as I'd like a break or to be done with therapy I want what's best for Amaya and at this point it means continued physical therapy. Her walk still needs help, her muscles need more strength and she needs to rebuild that butt muscle. 

When we got back Melissa started by doing a technique that Mark, one of the physical therapists there invented. She said it helps to redirect the blood flow and we should see some change in sensation. Mark has been fine tuning the technique and gathering research to support his theories. Melissa held up Amaya's feet and pinched an area above her foot. 

Then she had her lay on her side while she pushed on her back. Melissa suggested that I add it to our daily physical therapy homework. 

Here's a close up of what she did to her foot. She said I should hold it for five minutes each day.

Melissa asked Amaya to balance in front of the mirror on her left leg. Amaya said she would try to do it for one minute. Melissa told her that was a lot for anybody and to try to hold it for fifteen seconds. Amaya did thirteen seconds!  Melissa was very impressed. The most Amaya has been able to do up to this point is five seconds. So thats a big improvement!

Melissa had Amaya get up and down on the step. She does it, but its very labored and takes some effort. Melissa suggested that at home we have her walk up and down the stairs without holding the rails (as long as one of us is spotting her).

Amaya used this machine once before but its been awhile. As soon as she pushed her leg back she said, "ouch. I remember that." Melissa said that its good to help with her buns and thigh work out. We both laughed at the old buns of steel videos form when we were younger. 

     Then Melissa had Amaya walk sideways carrying thirty five pounds. She did it several times facing both directions. I was walking in front of her doing it with and and when we were done I could definitely feel some of the muscles in my leg. Melissa said that it forces you to use different muscles than when you walk forward. I can't imagine what Amaya's legs felt like because I did it without any weights on and she had thirty-five! Not to mention she only weighs forty-six pounds.

    While Amaya was doing this exercise one of the other therapists told Melissa, "she's looking good, Melissa." I looked over, smiled and thanked him for his encouragement. Melissa said, "yes she is." Then Melissa told Amaya that she was the queen of physical therapy because everybody there knows her. Amaya just smiled. On the way out I asked her if she thought she was the queen of physical therapy and she said, "No. I'm not, they are. The therapist are the queens and kings." Then she looked up at me with such a sweet smile. 

Then we headed over to the elliptical. Amaya did five minutes but halfway through she complained that she was sore. Melissa said the pain she's feeling is normal after having a week off. Melissa told her that this will really help with running.

Melissa had Amaya walk in front of the mirror. Amaya kept leading with her shoulders so Melissa had her hold some bowling pins to help her arms lay down by her side. 

 

When Amaya got to Melissa she jumped and marched with joy. Melissa pointed out that you could hear a difference in her two feet. As I listened I couldn't believe how drastic the change was. When Amaya marched in place her right foot was loud and strong, but the left was so soft. Melissa had her push really hard with the left and it louder, but nowhere bear the right foot. It was crazy to hear and see such a difference. 

Melissa had Amaya climb up the ladder while shifting the weight in her hips. Melissa showed em the difference between the two hips and how the hips shifted.

Then we went out into the hall to ride the train. Amaya had good movement on there and looked very smooth. 

     Then Melissa let Amaya swing into the ball pit three times before doing her knee bends. When she started the bends her knee was at 95 degrees, then 100, but at 103 Amaya was in pain. Melissa held the stretch and had Amaya breathe. Then she got up to 105 then got to 108! 

Winter break

    We're about halfway through winter break and enjoying our time off. Josh and Amaya have been off school since Friday and Amaya has been off from therapy for a week. We all needed a break and have been recharging. We've all been tired, worn out and stressed out so we've been trying to enjoy our time and trying to relax. I've tried hard to relax and not worry, but it isn't always easy. My worries are always in the back of my mind. The girls enjoyed Christmas and seeing family members. We've also gone to the zoo, a new candy store in L.A, and the aquarium. We've made sure to do physical therapy homework each day. When we can't do a full session, I make sure that Amaya does the four basic exercises Melissa suggested we do over the break. We've also been making sure Amaya sleeps with her pink cushion on her heel and wears the sponge material on it during the day. While I put her to bed the other night she cried saying she hated wearing the cushion to bed. "It doesn't feel good." she said. She asked why she had to wear it at all. I sympathized with her and told her I was sorry she had to wear it. I told her we are trying to get her heel to heal for good and this is what her doctor suggested we try. I didn't mention the possible surgery yet. I figure I'd wait until we know for sure wether she'll need it or not. It's still very frustrating for me, but at this point I just need to press on to help it heal. 

    Today we had to get back to reality. In the morning I made some calls to follow up on her pending referrals; for her opthamologist, plastic surgeon, boot for her heel and more therapy. I got a hold of a woman at the wound center. When I told her about the situation and why I was calling she said, "oh, for the little girl." Amaya is their youngest patient. The doctor said they mostly see older patients most of which are diabetic. It was nice that the woman knew who Amaya was even thought she didn't work with us when we were there. She said the referrals for the boot and plastic surgeon were referred over to Amaya's pediatrician. I called the pediatricians office as well as Marilou (our referral coordinator) but I wasn't able to get much information or help because they were all out of the office today. So tomorrow morning I'll have to make more calls and hopefully get some answers. It's always hard waiting on referrals to be processed, but the holidays just add to the processing time. Josh asked me why I would bother calling the day after Christmas, but I just couldn't risk her boot being there and us not knowing about it. I want to get it to her as soon as possible so that she can wear it as long as possible before our follow up appointment with the wound doctor in two weeks. 

   We had a physical therapy appointment this afternoon with Melissa. I filled her in on our wound care appointment and she was sympathetic to our stress. She said she hadn't submitted a new referral for continued therapy, but that she would be. 

Melissa asked Amaya about her nerve pain in her foot then had her work on those stretches first. Amaya's pain has been minimal, but still there. Her muscles are still a bit tight there. 

Then Melissa had Amaya lay on her tummy and lift her left leg off the table. It was a bit tough for Amaya. Melissa said, "It will be hard for you, most definitely." She lifted her hips to help her lift her leg, but Melissa told her that when she does that she uses other muscles to lift her leg beside her butt muscles (which are the ones she needs to strengthen). Melissa had her redo them while working on not lifting her hip. Melissa said that at home she needs to do it twenty to thirty times a night. When she was done Amaya said, "Yeah, that was hard."

 

Then Melissa raced Amaya in a crab walk. You can see that Amaya doesn't bend her left leg as much and wasn't as steady or fast. Amaya said her back hurt so Melissa taught her to use the muscles in her butt to lift her and support her not her back. By the fourth time Amaya improved a bit. Melissa had Lidie race Amaya so that they could race at home and get good practice in. Lidie really enjoyed it, so hopefully it'll be a fun "game" to do at home. 

Then Melissa had Amaya balance on her left foot. She leaned to her side and would fall over. Its sad to see her leg be so weak. Melissa had her move so that she could see herself in the mirror. Melissa helped her readjust her hips to help her hold her balance. 

Melissa had Amaya walk in front of the mirror. amaya still was leaning over and not shifting her weight so Melissa had her walk with exaggerated hip shifts to help her body get use to it. 

Melissa had Amaya climb up and down the ladder four times. 

In the adult gym Melissa had Amaya work on her squats. She tied the yellow band on Amaya's knees to help keep them in a good position. 

Then Amaya stood on a step with her feet hanging off. Then Melissa had her bounce up and down. Amaya said it hurt her foot and she could feel it in her quads as well. 

     Then it was time for knee bends. Melissa said she could tell Amaya's knee was tight and that she didn't bend it very much over the week off. I was so focused on the other stretches that I only had her do some squats and knee bends and didn't focus too much on her knee bends. Its crazy what a difference a week off makes. That's one of the reasons I'm glad we're still doing therapy three times a week; because Amaya really needs it and benefits from it. Amaya's knee started at 91 degrees. Then it went to 94, 96, 99 then 102. The climb was slow and painful. Melissa had her stretch in between bends and to breathe to help her muscles relax. But 102 was as high as Amaya was able to get it to today. On her last day before break she was at 110 degrees, so that's a loss of eight degrees in a week. 

   Before bed we did stretches, squats, bends and worked her muscles. As I massaged Amaya's foot before bed she said her knee hurt. She started to fall asleep but woke up saying it hurt. I massaged it, but that didn't seem to help very much. She said it was about a six or seven on the pain scale. Which is really high for her. And for the first time in months I had to give her Tylenol before bed. It's been so long that I had put it away and had to go dig it out. We have therapy again tomorrow and Friday so hopefully that will help ease her pain and get her knee stretched out again. And I'll of course add more knee stretches to our physical therapy homework. 

   It's sad to see her in pain and how much she lost from missing just one week of therapy. Patience and perseverance, thats what we need. 

Amaya got her glasses! She said we look a lot alike now. What do you think? 

Here's Josh and the girls at the Long Beach aquarium.

Here's the girls at the L.A. zoo. We brought Amaya's wheelchair because it was a lot fo walking and its also very hilly there. She got out and walked quite a bit, but it helped having her wheelchair to give her a break. 

Here are the girls with "the REAL Willy Wonka!" That's what Lidie said after she saw him. They met him at Sweet, the new candy store in L.A. 

Here's Amaya writing with her blueberry flavored chocolate crayon that she got at Sweet. It was so cool! You could write with it, eat it, and she even licked off the writing she did. She shared some with me and it tasted delicious!

Eye appointment

     First of all let me start by thanking all of you. After my post yesterday I got to talk to several of you about our appointment. Many of you let me vent, consoled me, offered encouragement and offered to help anyway you can and to watch Lidie during appointments to give her (and I) a break. I sincerely appreciate all your kindness. I'm grateful for your friendship and support. It's clear I need some help and I'm glad that I have many willing people around. 

   I'm still frustrated and upset about a possible surgery, still anxious and worried about her heel. But, like all things, we'll deal with them, and move on. Like I tell Amaya, "you've survived a fixator, you can handle pretty much anything." So we'll survive this too. It just stinks, that's all.

   Another thing I haven't mentioned is that at Amaya's eye exam on Friday they got some really high readings on her eye pressure test. We went in for a routine eye check-up because we thought she needed glasses, which she does and she's excited to get. But, while we were there they kept re-testing her eye pressure. All her readings were between twenty-one and twenty-nine. The optometrist said that anything over ten is considered high. One of the assistants said that the reason they were so concerned and kept testing it was because "it can be a sign of glaucoma" and "which can lead to blindness." 

     The eye doctor gave us a referral to an eye doctor (different than an optometrist, one that's a doctor of the actual eye itself). The specialist will check her eye to see if she really does have elevated eye pressure, why she does, if she has glaucoma, and what to do from there. So between that appointment on Friday and yesterdays I was spent. Drained, worried, frustrated and trying super hard "to not worry or freak out." Not to mention feeling like, "hey can't Amaya (and us) just get a break?! Can things not be an issue for once?!" (Not sure if that makes sense).

    So I still have moments of frustration, fear, worry, wonder, anxiety, emotion but I also have moments of peace and hope. So thank you all for your care, concern and friendship. Will you continue to send good thoughts and prayers our way and Rory's (she's our two year old friend with PFFD. She's recovering from a super hip, super knee surgery and had to have another surgery today). 

Here's the foam that we used to put to on Amaya's heel. After her shower I had to replace it with a new piece. 

Here's what her heel looks like. It's funny, it doesn't look that bad. It's a bit puffy, and pink, but that's about it.  

Here's the tape they gave us to tape the foam on. Amaya said she liked it because it didn't hurt when she pealed it off.  

And here's what her heel looks like after I taped it (and Lidie helped). She said she could feel it during the day a little bit and it was uncomfortable. She also didn't like the foam thing she's wearing around her heel to bed. She said its too hard to move during the night and it feels heavy like a cast. 

A full house

   On Monday we had Amaya's last therapy session before Christmas. Amaya decided to walk in without her walker. She did good, but I had to keep reminding her to keep her toes straight. When we got into therapy Amaya gave Melissa her Christmas gift (a very cute elephant mug she designed and made herself). I wish I would have taken a picture of it, it was very cute. When we got into the children's gym it was busy! There were about five kids in there being helped plus their families. It's the busiest its been in there. 

    Melissa asked how Amaya was feeling and what her pain level was. Amaya said she was fine, but I mentioned the pain and numbness she's been feeling in her foot and toes. Melissa said it might be because the nerves are tight because they didn't grow as much as Amaya's leg did, or possibly they are being pushed by the muscles that are tight. Melissa taught us a new exercise to do to help alleviate the pain (regardless of why its there). At first Amaya just complained during the night, just before bed, but this weekend she mentioned it during the day as well and asked me to rub, squeeze, massage her foot and toes.

    Before we left I asked Melissa what we should focus on during our week off from therapy (because of the holidays). She said the three main exercises to do are to one, lift her hips. Two to push her left leg back (to develop her butt muscle). I asked if we should use the yellow band (the one with the least resistance), but she said that she's not strong enough for that yet. To just do her own body weight for now. And third to do the stretch she taught us to help with the nerve pain. She said those three should be the minimum that we do each day until we see her on the 26th. I also asked her if we would need a new prescription for therapy after this one expires (we're about halfway through our eighteen session snow). She paused, then said that yes she thinks we'll need at least one more. She said we have to get the walking taken care of. She said we have to get her hips to shift. 

   Its a bit disheartening hearing that she'll need another prescription (even though I suspected it) and to hear that she "isn't strong enough yet." But, I know that Amaya works hard and will accomplish a lot. I know her hard work will pay off. I know she won't give up. 

Thank you all for reading and caring and following along. Thank you for your care, concern, love, prayers, and support. 

Lidie riding the bike while Amaya works. 

After Melissa checked Amaya's leg to see what was causing her pain she gave us this exercise to help. We hold Amaya's leg in that position then lift the foot to get a stretch. She said to push it until she can feel it but to be careful to not "get the nerve angry" by working it too hard. Melissa said its important to keep the toes straight and we should see some loosening of the muscle.  

Then she had her lay on her tummy and worked her butt muscle then did the plank pose. 

Here's another angle. I was trying to get a shot of her face but she was too focused to look up at me. She's quite focused at therapy (well, most of the time).

Then Melissa had her stand on her left leg to hold herself up.  Her muscles had a hard time holding her balance and she kept leaning in funny positions. Melissa kept reminding her to keep her hips straight and had her do it until she was able to stand straight for five seconds. Amaya said it was hard and Melissa reminded her that "yeah its hard work". 

In the adult gym Amaya walked sideways while lifting thirty pounds. She did it five times. She had a hard time balancing so she held Melissa's hand for support. Lidie was sweet and wanted to do it with Amaya to "help" her. 

Amaya rode the bike, pulling the orange roll (About thirty pounds and Lidie, for part of the way). Then she pedaled up the hill, which was a challenge.

Amaya's knee measured at 94 to start (her highest starting number since the fixator was removed). She jumped to 97, then 100. At 105 she started hurting and asked to stop, but then would keep going. She asked Melissa, "how much do you want me to get?" Melissa answered, "I'd like to see you get 110 since that's what you got on Friday." Then Amaya said, "Okay, I'll give it a try." and she did. She got 110 degrees, again! 

Wound care appointment

     Today we had our appointment at the wound care department at Redlands Community Hospital. I was anxious about our appointment; nervous, curious, hopeful and optimistic. After a thirty minute wait to register the nurse came out and took us back in so that we didn't have to wait any further. That was great, because Lidie was worn out and getting squirrely. We went back into a room that looked like a recovery room after surgeries. Just beds and curtains. We were the only ones back there so that was nice. The nurse was very kind and told Amaya she would be getting a lot of attention since she was the only patient there today. The nurse looked at Amaya's heel and asked some questions. She said it was a pressure wound and the best way to let it heal was removing any pressure. We have been told that before and have tried to do that. At this point its been over nine months since she's had it and I'm ready for it to heal, for good.

   When the doctor came back to check Amaya out he also had many questions (about the surgery, why she had it, how she got the bed sore, when, what did it look like, did it change, etc). He said it looked like a stage two pressure wound and took a picture to document it and to measure its size. He pushed on it and asked Amaya how it felt. She said it was sensitive and hurt when they pushed on it. He drew a picture for me showing the bottom of her heel. The bone sits then there's a fat pad underneath it then the skin. He said that part of her fat pad is gone. She's had fat atrophy. He said he wants to refer her to see a plastic surgeon to see what he recommends. He thinks that a surgery might be needed to replace the fat. I asked where the fat would come from and he said that's what we would have to ask the plastic surgeon. He said that possibly fat could be moved there or new fat inserted. He wasn't sure, but said the plastic surgeon there was great and would help us. But it would have to be a surgical procedure. Ugh. 

   He said that if they had seen it sooner they could have done something more, but at this point that's all hindsight. He said when the blister was there they could have popped it. Because he said that the fluid in the skin was putting pressure on her heel and caused it to spread and for the fat tissue to disperse and for the consistency of her skin to change. He said that now she has no cushion on that part of her foot to absorb the pressure when she walks. I told him about how she's modified her walk (walking on her toes more) and that it gets sore the longer she walks. He said that might be because of the bedsore. He said at this point there's no ointment or anything like that, that he could prescribe to help it heal. He and the nurse brainstormed things to put on the heal now to help it from putting pressure on it. Since she's so small they didn't have much, but went and asked one of the physical therapists to come look at her. The therapist and the nurse looked in catalogs for something that could help Amaya. I was very grateful for their help, and kindness. 

   He wrote us a referral for the plastic surgeon, then gave us some "conservative" options to try in the meantime. The nurse wrapped Amaya's heel with some cushiony material and a special tape. He is requesting a boot for her to wear all day (she can remove it for physical therapy). It will help protect the heel from any more pressure. In the meantime they gave us a cushion to wear at night and some of the cushiony material and tape to tape her heal for daytime. Hopefully she'll get it within the week so that it can start to help her soon. He wants to see how her heel responds to having no pressure. Does it heal? Does the fat come back? We have to wait and see. He's hoping there will be some change in three weeks. We have an appointment to return in three weeks. At that time he will take another photo of the heel, measure it and see how it is doing. 

    After mentioning another possible surgery the doctor asked how Amaya handled the last surgeries. Mentally, emotionally, psychologically? How was she doing at school? Is she happy and doing okay? I told him that she did really well. She healed well, worked hard, and continued to go to school throughout it all. 

    By the time we got out to the car I was in tears. Overwhelmed with frustration, filled with sadness, and a general sense of worn-out-ness. Frustrated with Lidie's fit during the entire appointment, mad at myself for calling Josh out of work to help me, angry with the heel not healing, frustrated with the idea of having to see another specialist, and dealing with more referrals. Sad and frustrated that Amaya has to have another thing to have to wear, and another possible surgery. Sad and desperate for a break, for all of us. Disappointed that there is no ointment that can fix this heel now. I was hoping we would get a shoe insert or something simple like that.

     So any prayers or good thoughts or kind words that you have please send them our way because this momma is worn out. And I can't bear to have to explain to Amaya that she will need another surgery. Let's hope that boot helps. 

Lidie waiting in the lobby. This was just before she lost all her patience and started getting super fidgety and throwing a fit for the entire time we were at our appointment (about an hour and a half). I was so desperate I asked Josh to come be with us to help take care of her because I was having such a hard time trying to parent her and listening to all that the doctor was explaining to me. Thankfully the doctor was kind and patient. 

I found this picture on my phone. I had let Lidie play with it in hopes that it would distract her and keep her busy. No luck. Here's a visual of how crazy Lidie was getting. She was so close to the doctor (who was sitting close to me trying to show me a drawing and talk to me). Lidie sandwiched herself in between us and kept moving and throwing a fit and almost kicked the doctor several times. Ugh, super embarrassing.  

Here's Amaya laying on a bed while they examined her. 

On the ride home there was a rainbow that helped brighten our day.

Here's what the tape on Amaya's heel looks like. 

Here she is doing her physical therapy homework before bed. She has the pink cushion on her heel that the wound doctor gave her today. She said it felt like a cast. She's going to be sleeping with it on until she gets her boot. 

Here's a close up of it. It's a lot nicer than the towels we use to wrap around it. 

Here's another shot of her doing PT homework.  She did four exercises before bed. 

     Here's a picture of what the boot looks like that they are ordering for Amaya. We're hoping the insurance will cover it because it cost ninety dollars. And I'm really hoping she gets it soon because the doctor wants her to have it as long as possible before her appointment with him in three weeks. The good thing is that she'll actually be able to walk in it. The doctor said they usually don't let adults walk in them because they break them, but she should be okay to walk in it.