Overcoming fear

   Thursday night was another good night for Amaya. I can't tell you how wonderful it is to have her sleep peacefully and pain free. I'm getting more sleep at night than I have in almost eight months. I'm slowly recovering my sleep, but midday still get tired and want to nap. Amaya fell asleep quickly and only woke up once in pain. I gave her her next dose of Tylenol w/codeine then she slept the rest of the night. Yesterday she woke up in a bit of pain. We gave her Tylenol and her antibiotic (she'll be on it for 14 days total). We wanted to see how she would do with regular Tylenol instead of Tylenol with codeine. I wanted to wean her off of the codeine soon because it messes with her mind, and mood. She gets very cranky and a bit on edge. She cried and complained of a very itchy back. Josh rubbed some anti-itch cream which seemed to help. After about twenty minutes her pain, and itchiness lessened. She didn't mention itchiness again all day and the Tylenol seemed to take care of her pain. She didn't ask for pain medication all day. I'm very surprised by how minimal her pain is. She aches when she moves, or when someone moves on the couch and sometimes complains of spasm-type pain, but for the most part she doesn't complain of pain. Which is a pleasant surprise.

    Yesterday was about facing and overcoming fears. Amaya had two big things to face; walking and removing her gauze for the first time since her fixator was removed. I have pictures below walking you through the process. I included pictures of her pin sites. I'm not sure if you want to see them or not, but I think its important to document. Not only for us but for others who will be going through this and want an idea of what to expect. They're really not that bad (at least not as bad as I thought). 

   I tried to prepare her all day that we would be removing her gauze later in the day. As evening approached she asked if we could skip it, or postpone it by a day. We could tell she was nervous and tried to calm her nerves by letting her know that its similar to the daily gauze changing we did each day for months. But for her it was a new thing because there was no fixator, no pins, and she was scarred of what her pin sites and leg would look like. As we prepared for it I wished we had Valium; for her and us. She was frazzled, but calmed down once we started to remove the ace bandages. That is until she saw the blood on the gauze. There were three gauze pads on each pin site, then it was covered by a cotton type wrapping. There were many layers and it took a long time to remove it. We did most of it outside of the shower but waited to do the last parts in the shower to help loosen the bandages from the pin sites. Amaya removed the gauze and the cotton type wrapping alone. She struggled with wanting to do it by herself (she had been removing her gauze the last few months with her fixator), but not wanting to see the new pin sites. She was scared, nervous and freaking out. It was one of the worst times ever. The only other time that compares is the first day we changed her gauze when she first had her fixator put on. I was with her for the first forty minutes but then got just as frazzled as her. Josh took over when she was in the shower. Her screaming, crying and yelling had us all on edge. It's hard to accurately describe how crazy and sad it was. My body was flushed, I wanted desperately to spare her anymore pain, remove her fear and just get it over with. Its a balance of pushing through to get it over with, and giving her time. She didn't seem to be in pain which was nice, only afraid, which is just as intense and painful.

  In the shower Josh used some scissors to cut the gauze wrap free from her leg. It took another thirty to forty minutes to remove that, the gauze on the three pin sites plus the bandages on her hip (they were glued onto her skin). It was draining and sad. Even when I wasn't in the room I couldn't help but be bothered by her screams and tears. In the shower the water made the blood drip out of her bandages which only gave her more panic. She tried to help, only let Josh do a little at a time, wanted to look then didn't want to. When I went back in to help I was struck by the smell. Ugh, there was so much iron in the air it was gross. I instantly thought of a war scene or a surgery or something else equally intense. It was such a raw, overpowering, intense smell of blood. It was crazy. I hope this isn't too graphic for you parents who will be going through this. I just hope that it helps prepare you for the possible craziness that lies ahead so you're better prepared. I wish there was a parents guide to life with a fixator. I hope this blog serves as that to other families. That's one of my main motivators in sharing the good, the bad and the ugly of the lengthening journey. 

   After she shower Josh carried Amaya to bed. She still refused to look at her pin sites and didn't let Josh look at them either. I told her I had to document them so I took some pictures before wrapping them up. She was still a bit skittish and nervous as I wrapped her pin sites. As I wrapped I noticed how tight her skin looks; like its being stretched. By the time I finished wrapping she was calm and all smiles. I'm always amazed by her ability to bounce back. Josh and I certainly take a few more minutes to bounce back. Its crazy because in many ways we've had to become desensitized to her cries, screams and blood. I don't think people understand what "normal" is like for us now. I'm looking forward to returning to our old normal. I'm grateful to have Josh on this journey with me. His calmness helps get me through such intense moments.

      I encouraged her all morning to get up, put some weight on her leg and try some steps. I told her that by lunch time I wanted her to walk half way across the house. Although I wanted her to relax I knew that her leg would benefit from walking. This was the sequence of her first steps. She decided to do them without her walker since she was just going from the couch to the coffee table and back. I was a bit scared that she would fall without her walker, but she did great. She said it felt good to be up.

Here's video of her first steps. I'm not sure if you can hear her, but when I ask how does it feel she says "easy. It just hurts a little." I had asked her to walk halfway across the house, but she decided to do the entire house. Later she got herself up, walked to and from the bathroom all by herself. She's getting a bit more comfortable each time.

Here's the second part of that video. You can see how much quicker and smoother her steps got just in a matter of seconds. Its so nice seeing her up and walking.

Removing the ace type bandage (aka her "fake cast"). There were three pieces to unwrap. This part was pretty easy, but hurt a bit when she had to lift her bottom to unwrap it. She said it felt good to have that bandage off her leg especially when she took it off her foot. It let  her leg breathe and relax. Do you notice the good bend in the knee? It's pretty close to ninety degrees all on its own. Her leg is bending a lot more than it is straightening. We're going to begin some light hamstring stretches tomorrow to help with that. Melissa said that walking will help with that too. Its crazy how quickly her leg is adjusting to not having a fixator. 

This is when she started to get nervous and freak out a bit. Seeing the blood, and how much was there bothered her. 

Here are her bottom pins. The very bottom one is almost completely closed. Each pin site looks so small. 

Here are the ones just above her knee. Sorry the picture is blurry, but she kept moving (she was getting anxious about seeing her pin sites and kept covering her face & leg with a towel).

Here are her top pin sites. I was surprised how small these look. I was expecting them to look worse because of how much drainage they had. But you can see that these have long scars from each pin site. I'm guessing from where they pulled.  All of the pin sites looked good and had no signs of infection. They all seem to be healing well and quickly. 

Here's a look at the incision where they put the rush rod in. It is smaller than I thought it would be. Dr. Nelson said it was about an inch, but I still pictured it to be much larger than that in my mind. It doesn't show up very well in this picture but there was some bruising by the incision area. 

Here's what her leg looked like after I wrapped it. I decided not to wrap the entire leg so that it could breathe. The pin sites were so small it didn't make much sense to cover all of her leg for four sites. Although over night her middle and bottom gauze did slide up and down, so maybe one long piece covering both sites would have made more sense. Maybe I'll try that tonight. You can notice the bend in her leg as she lays flat on the bed. It has a bend and a hard time straightening on its own. It looks like she's leaning on the side of the bed, but she wasn't.

Look at that smile. After all she went through, she still had a smile to give. And that's what makes her so special; her bravery, her ability to deal with tough things, her ability to move on and smile.