A day of firsts

     Yesterday we had a few firsts. The first of which was turning the rod on her fixator. Before I turned it, I added a dot of white nail polish to the top, that would serve as a good visual for when we do four turns. Amaya was very nervous, and scared. I explained what I would be doing and how. She asked if it would hurt and pull her bone apart. I showed her on a ruler just how much we would be lengthening each day (1 mm.). That seemed to comfort her a bit. Then I just did it; it was quick, easy and pain free. We were both surprised. By the end of the day we did four turns. I did three turns and Josh did one.
    Later we had our first out patient physical therapy session. Amaya was also nervous for this. Once we went back and she saw Cassie (our physical therapist from last year) she became more comfortable. This was the initial session so Cassie did a lot of measurements. She was able to get her hip to bend to 95 degrees and her knee to 105 degrees. I could tell a definite tightness in the knee from last week. We have to aggressively do physical therapy to preserve her knee flexion. Another therapist came in, Melissa, to introduce herself and check her leg. Melissa works with Dr.Nelson and does most of his lengthening patients. Melissa looked at Amaya's leg and asked about the swelling in her leg. We said that it was a bit smaller, but it is definitely still very swollen. Melissa gave us some helpful advice and information. She said that we need to keep an eye on the pins and check for any infection. She said that when there's an infection, the pin sites will bother Amaya more. She said that in a few weeks Amaya will adjust to the fixator and it won't bother her when it's bumped (that'll be nice). She recommended that we massage Amaya's leg often (another patient of hers had her mother massage her leg four times a day and there were definite improvements). She also said that the next few physical therapy sessions will be tough; that  Amaya will end up in tears for many of them. She said that it is crucial to keep the knee moving. She said the goal is to get the knee to at least 90 degrees at each session. The minimum that they'll allow is 70 degrees. Dr. Nelson recommended hour long sessions, but the therapy department only allows the therapists to book sessions in 30 or 45 minutes for kids. That's a bit frustrating, but we'll deal with it. That means that Josh and I will have to do more sessions at home. Before we left we scheduled our therapy for the next six weeks (that's what the prescription that Dr.Nelson wrote said). Our appointments are Monday thru Friday. Each appointment happens at a different time and with either Melissa or Cassie. Thankfully Marylou (our referral coordinator at Beaver) got all the referrals processed and approved in such a timely fashion. She even emailed the form to me so that I could print it and bring it with me to our appointment, so that we didn't have any problems scheduling. The forms made the process go quick. Marylou is amazing! She is efficient, thorough, kind, helpful and wonderful!
     After physical therapy we had another first; a shopping trip to Target. Amaya had twenty dollars to spend (she had earned). We had to park towards the back to make sure we had plenty of space (mental note:ask doctor for disabled parking placard). After Lidie had a mini meltdown (she wanted to ride in the wheelchair) then took a break, we made it in. Thankfully Josh was with me, and he took Amaya in while I handled Lidie. We only had a few things to get so the trip was pretty quick, but it was nice to have Amaya out of the house. While we were there I pointed out to Amaya that most people were shopping and not starring at her and her fixator (this was a big fear of hers). Although I did notice some people take double takes, and one man starring for several minutes, for the most part, people just went about their business.
   Today, Tuesday, is another first. Josh went back to work today and I'm home alone with both girls. It's almost three and so far so good. Amaya did her physical therapy with me; we did a half hour session that was demanding, and did end with her in tears. It was hard pushing her body so much, but I knew it had to be done. Since then she's been sitting in her wheelchair (which helps keep her knee and hip bent at a 90 degree angle). I also helped her get in and out of her wheelchair (to go potty). She is learning that I can help maneuver her too, not just dad. So far we have painted with watercolors, cleaned the fish's house and fed him, watched a movie, played in the playroom, played doctor and had lunch.  I also managed to do the dishes, one load of laundry, clean the bathroom and sweep the floors. There have been a few tough moments, but their few and pass quickly, then we quickly recover and move on.

This is the bar we screw in at night and remove in the morning. Amaya has been doing it herself. Sorry the picture is kind of blurry.

This was our first turn. We push that small blue square button in, turn the tool to the right (you can see the arrows showing which direction to go), then we hear a small click when he make a quarter turn. That's it!

Yesterday Amaya started playing doctor with "teddy."

Teddy ended up getting an IV, a cast on his leg and arm and a mask. It was cute seeing her play doctor. 

Here's the list of "what we did today" that she gave me and Josh. In case you can't read it, it says "What we did today; medicine, IV, shot, cast, something for doctors to not get patients sick, cast on leg." She was so thorough. Josh got a very cute video of her explaining what she did and why. Unfortunately, I'm having trouble uploading it. I'll try again later.