amaya at lake

amaya at lake

Monday, August 20, 2012

A new focus

     The past few nights  have been a bit easier for Amaya. She still has some pain and discomfort but it doesn't seem to be as intense as it was the past month. What a relief! It's one of those things that you just have to look at with some perspective. It's not great, but it isn't as bad as it was. So it's good, but could be better. It's all relative and it seems to change each night or couple of nights. I try to be optimistic and realistic at the same time. 
    Lidie and I had sometime off in the morning then picked up Amaya just before school got out. Even though it was her minimum day we didn't make it home until five p.m. By the time we went to therapy, chiropractor, picked up groceries, picked up a prescription, then headed home it was late. I feel bad that she doesn't get that extra time off to relax like her friends do. When she got home she played in the playroom before doing homework and having dinner.  
    On the drive to therapy I reminded her of our new goal/focus at therapy, to do her best and not say that she can't do something. Instead of "I can't" she'll say "I'll try" and do her best. She use to do this all the time but the last couple of weeks she kept saying that she couldn't bend anymore and would try to give up. Today she did great! She worked hard, stayed focused, and didn't complain once. There were a couple of times where she needed extra reminders, but she got back on track pretty quickly. When it was time for knee bends her knee was at forty degrees (pretty tight but its expected for a Monday), but quickly got up to sixty degrees. Then she had some hip and knee pain and stayed in the sixties for about a minute. She was crying and frustrated because her skirt was pushing on her top pins. Melissa asked her to keep focused and do her best and Amaya replied with "I'll try." Then in less than ten bends he was in the eighties. She kept working hard for those last ten degrees, then got up to ninety. I was proud of her for never complaining or saying she couldn't do it, even though she was in pain. 
    When we first got to therapy we updated Melissa on Amaya's weekend. She was proud of her for working so hard on Saturday. When we told Melissa about when she hit her fixator and she was bleeding from the middle pins she looked at the pins. Melissa was concerned because the discharge from the pins looked white instead of clear or bloody. That can usually indicate an infection. We had a refill prescription for antibiotics already at a pharmacy and she suggested that we fill it. So we went ahead and did. Amaya will take them for ten days and that should take care of any infection. 
     When we got home there was a message from Dr. Nelson's office letting us know that they needed to reschedule our next appointment with him. It was moved two weeks further from when we have it now so we won't see him for six and a half weeks since our last visit. So by the time we see him next it'll be almost four months since we stopped lengthening (sixteen weeks). We're assuming that we'll be able to schedule her removal surgery (I tell her its a procedure, which doesn't sound as scary to her) then (or shortly after). How exciting is that?! 
Amaya started her session today by riding the bike down the hall, up the ramp and then did half of the big loop. After riding the bike Amaya came in and worked on the ladder. She climbed up and down five times.  
Melissa had Amaya do lunges. With each lunge she had Amaya try to get her fixator to touch the blue mat on the ball pit. It's a big stretch to get her knee to bend that far. After the lunges she tried to sit into a stretch which was even harder.
Look who's hiding in the ball pit? 
     Amaya got a bag full of hand me down clothes and shoes. She loved it! As you can tell by the way she's lining up the shoes, she was so excited to get so many shoes. Ever since she was born we've only bought her one or two pair of shoes at a time (usually because we had to pay $60 for a shoe lift to be put on each pair of shoes). So this is the first time in her life that she's had more than one or two pairs of shoes at a time. Now that her leg has grown she can have as many pairs as she likes! 
Here's a picture of her bottom pins. They look so good right now. About a month and a half ago they were bothering her but now they're doing great. 
     Here are the middle pins.  These are the ones Melissa was concerned about. They don't look too bad here, but if you look close the drainage at the edge of the pins is whitish, yellowish, and pus like.  
     Here are her top pins. The middle pin looks pretty gross. It's been scabbing up a lot lately and sticking to her gauze and giving her a lot of pain. The dark spots are where the skin had peeled off and bled. This pin has been bleeding a lot lately. These pins also have some drainage that looks a bit yellow.  
Here's my little ham posing with Teddy. She said that she wants to get something like that for Rory when she has her surgery in a couple of weeks. Much love to you Rory, Hava and Jon as you prepare for Rory's surgery.
      As you can tell by how light it is outside she goes to bed pretty early. She's usually pretty tired and asleep by eight p.m.

1 comment:

  1. Well, thanks for sharing the pics. Genesis was so happy that she got be apart of making Amaya smile (as was I). Tell Amaya she looked absolutely stunning in her sparkle shoes and sparkle shirt!!
    We love you,
    Terry and Genesis