Amaya has continued to have good nights and sleep in her own bed since last week. Friday was her best night in awhile. She didn't wake me up once! She said she woke up a few times, but just laid there and fell back to sleep on her own. Yesterday when she woke up she said that since she's having such good nights she wants to try falling asleep alone; without me rubbing her knee or foot. But at bedtime she changed her mind (I kind of figured she would). Tonight she's stirred and moaned a few times, so I'm hoping for another good night's rest for her.
Yesterday she had a great day with her friend Mason. She had invited him up for a pre-birthday play date. Her birthday is in a week and we wanted to keep things low key, for many reasons. One of the things she wanted was to have a play date with Mason. Its so neat to see their friendship grow, change and stay true for so many years. They first met when they were babies, and started hanging out when they were about one and a half years old, so they've been friends for pretty much their entire lives.
At bed time last night we talked while she stretched her leg to lock the bar in for the night. She asked when Dr. Nelson's birthday was. I told her I didn't know, so she asked if I would ask him at our next appointment because she really wants to get him a gift. Isn't that sweet? I asked her how her pins were doing and she said that they were still itchy, but not as bad. She said that she needed more practice walking fast because she's been tripping and falling a lot. I was sad to hear that, but glad that she knows how to help herself. she must be doing it at school, because I don't see her falling or tripping very much. We agreed that we would practice at home, and then on Monday ask Melissa to work on it some more with her. The last stretch before she locked the bar in hurt the most, but she fell asleep within ten minutes of me massaging her foot and knee.
I've been going through some of the old blogs that I use to read to help prepare me for this surgery. I'm so thankful to those families for sharing their own journeys. Ever since our last appointment I've been curious about the rod that Dr. Nelson said he would be putting in Amaya's femur. I wasn't sure if I heard him correctly or not. Would it actually go in the femur? Or next to it? How does it go in? How long does she wear it for?, etc. I found a picture of another boy two months after his fixator was removed and you can clearly see the rod inside his femur. I couldn't believe its actually in it. I didn't think that was possible. That mom said that for her son she was told that it would be in somewhere between six months to two years. I found the picture from the day he was in the hospital to have his fixator removed and the rod inserted. It looks like he had a gauze bandage on his hip, so I'm assuming that's where they put it in through. She didn't say how long he was in the hospital for that. It helped to see an actual picture of it, in fact I keep going back to look at it ever once in awhile to try to understand what is going on and how to prepare for that. It looks like its only the width of one of her pins, but as long as the femur. I'm not sure how it stays in, because I didn't' see any screws or pins or anything. It helps just as we prepare our list of questions for our next appointment. I haven't told Amaya that she'll have to have the rod removed at some point down the line. I don't want to overwhelm her with too much information right now. I just remind her that Dr. Nelson is in charge and he lets us know what's best for her leg. That way I'm not promising her that she'll only have "x" amounts of surgeries, etc. She said she's still a little bit nervous about her fixator being removed, but not that bad anymore.
This morning was her last swimming lesson through SwimAbilities. The staff gave all the participants a towel, which she thought was so cool and "like a medal." I told her that in a way it kind of was, because nobody else got one, only those that participated. I told her that I was proud of her for wanting to join a swimming class even though she had a fixator on. I'm proud of her for living life, thriving and enjoying it to the fullest no matter what's going on with her. She could have been too shy or afraid or embarrassed or not want to work as hard as she did. Instead she pushed herself, and didn't give in to any of those thoughts or fears. Today her instructor asked if she wanted to go swim in the deep pool (12 feet deep). She said sure then headed over. She swam for about forty minutes. The other five she worked on floating and going down to hold her breath. She worked on the breaststroke, freestyle, and backstroke. He had her start off by swimming half way across the pool then she started swimming the entire length of the pool. She ended up going back and forth the entire way about ten times. She did great!
She overheard someone say that the pool was like the ones used in the Olympics and she thought that was pretty cool. I told her that the PossAbilities triathlon that Melissa mentioned to us does the swimming portion of it there in that pool. She thought that was cool and said that this could count as her triathlon training. On the way to the car she said she really wants to do the triathlon and was asking how long she has to wait for it. I told her its usually around April. So in the spring she'll do her first triathlon! I love that she's always setting new goals for herself! And meeting them! And exceeding them!
Amaya and her friend Mason decorating cookies yesterday for her pre-birthday play date.
As I walked Amaya over to the deep pool for today's session I happened to notice our shadows. I have several pictures throughout her life of our shadows while we're holding hands, but this is the first time when you can see her fixator so clearly. As I looked at the photo I had some thoughts; the fixator looks so big compared to her legs, she looks so tall, her left leg looks so different now (longer and thinner), and I love to see her holing my hand.
After swimming halfway across the pool and back a couple of times her instructor asked if she wanted to swim all the way across. This was the first time she did it. When she was done she said it was pretty easy. Her instructor removed the floating vest/jacket thing and then she went on to swim the entire length of the pool about ten times.
Here she is swimming back for the last time. She was so focused as she swam, she did great!
Here she is after her last swimming class!
Later we took the girls to the school below us to ride bikes and play on the equipment. As you can see Lidie had a great time! As Amaya rode the scooter she worked on bending her knee without me asking her to.
Amaya swung across the bars.
Lidie gave it a try too.
I love the determined look in her eye. She went across several times as Josh spotted her. On her last time she fell on her bottom, but only managed to hurt her hand and not her leg.
While they played on the bars Amaya invented a new way to swing. I thought it was pretty funny and clever.
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