amaya at lake

amaya at lake

Thursday, April 5, 2012

Two days worth of posts

     Last night Amaya had the worst night she's had since the surgery. She was in a lot of pain, could barely sleep, needed lots of massages, and pain meds throughout the night. Therefore I wasn't able to post about our day, even though I had so much to say. Thankfully I keep notes on my phone, otherwise I would have forgotten a lot of it, since I had such little sleep. 
    Yesterday when I dropped off Lidie, she again didn't want to leave. Several times she said, "I wanna stay with you mama."It was hard to leave her, but I knew she was in good hands. Once I was gone she did great the whole morning. It's hard caring for two girls. One has to wait while the other is taken care of, and its a bit heart wrenching to not be able to care for them both as I would like to. At school Amaya did great. She complained a few times of knee pain, but did fine. We had carpooled with Josh and when he needed to go to the other school he services I took him and left Amaya alone for fifteen minutes. It was a great "test" to see how she would do at school alone (which I'm a bit uneasy about). When I told her I was leaving she had a look of panic on her face, but then it quickly passed. She said, "I'll be okay. I'll have fun and I won't have pain." I knew she was being brave and lying (I knew she would have pain, she can't control that). When I returned she was doing good, working at her desk. During recess her teacher asked her if she wanted to stay in the class, but Amaya said no, that she'd rather go outside. I'm glad she did. It's nice to get outside and get a change of scenery and fresh air, but I did appreciate Ms.Gillespie's thoughtfulness because their might be a day when Amaya is too tired to go outside and she'll know that she can always stay inside if she likes. Amaya is so fortunate to be surrounded by such caring, thoughtful teachers. While we were on the blacktop an older girl came over to talk to Amaya. She was very sweet and kind. She asked Amaya how her surgery was, how she felt, if she was in pain. I appreciated the girls courage to come over and talk to Amaya instead of just starring. Another little boy asked Amaya questions about the pins, then asked if he could touch them. I told him that I appreciated him asking her first instead of just touching. 
      At physical therapy we let Melissa know that Amaya has been complaining of knee pain a lot. She wondered if maybe some of the nerves were compressed during her fall a week ago. It wasn't a big fall and we couldn't tell any damage immediately, but maybe there was some harm done. It's hard to tell, because pain is a part of the lengthening process. Melissa said that if the nerves were damaged in the fall, that could be what is giving Amaya a weird sense of where pain is at (when we stretch certain muscles instead of saying that those hurt, she'll point to other parts of her leg). Melissa said to continue to do the hamstring stretches at home (which I have been, a lot). Amaya was able to get her knee to 110 degrees today.  Melissa said that as the lengthening progresses the muscle that is usually the tightest are the quads. Melissa said that Amaya does a great job of pushing herself during physical therapy. 
    After therapy we picked up Josh and headed to Downtown Disney to meet the Wasserman family. They were here on vacation from Washington State. I had "met" Christine online about a year ago and we made loose plans to meet up if they ever came down here. We were excited to meet them for so many reasons. Their son Ben, (aka Ben the Brave) also has PFFD and is very close in age to Amaya (he'll be seven next month), and their leg length discrepencies are so close. Ben will be having his limb lengthening surgery next year and I was glad that Amaya was able to share her fixator with him to help prepare him and his family for what's to come. I can't tell you how wonderful it was to spend time with them. So often we feel alone. They are the first family we've ever met with a child with PFFD. They are a sweet family and we have so much in common. The girls had a great time playing with Ben and Zoe. Amaya shared her fixator with them and let them touch it. We also showed them how we turn her rod for lengthening each day.  It was so great to be able to share stories, and compare our journeys. To quote Josh, "We had an incredible afternoon, meeting up with another family with a similar situation to ours...dealing with shoe lifts, limb-lenghtening surgeries, and everything else in between. So refreshing to meet others with similar experiences, and still managing to thrive and enjoy life!" When we left I felt like we were saying goodbye to old friends. I teared up as we waved them off; tears of joy, and thankfulness. 
      The kids are going to continue to be "pen-pals" and hopefully we can go visit them soon. On the ride home Lidie said, "I like when Zoe played with me." and Amaya said, "I like that he was sweet. And I liked playing Star Wars." Then she added, "Dad, you think I'm tough as nails? No, he is!" It's cute, they both had an awareness of what the other has been thru and compassion and respect for each other. Ben called Amaya, "Amaya the Brave."
    As for today, Amaya woke up with lots of knee pain again. I skipped the children's tylenol and just gave her the tylenol w/codeine since her pain was so intense. On our way to physical therapy we got stuck in traffic and even though we had an extra fifteen minutes we were ten minutes late. When we finally got back to see Cassie she wanted to see if anyone else could see Amaya since she would only be able to work with her for fifteen minutes.  Thankfully another therapist, Jeremy was able to see her.  Jeremy immediately recognized her as one of Dr.Nelson's patients. He said that he hasn't seen a fixator like hers before, only the top or bottom part but never together. Jeremy had Amaya get on her tummy to stretch the knee that way (he said that was a harder stretch than when we do it sitting down), and he stretched her hip out. He said he was very impressed by her range of motion (that she could get from zero to 110 degrees in the knee) and that she did no fussing at all. He said most patients fuss a little or a lot, but she didn't fuss at all. Then he noticed the bar that sticks up on top of her fixator. He said he didn't realize just how far hers came up and that, that made the stretches she did ever harder, so he was even more impressed that she didn't complain. She's a trooper! On her own she got her knee to 102 degrees and with him pushing he got it to 110. He gave her some homework to work on when she practices using the walker at home. And gave us some advice; he said to lock the bar in, in the middle of the day. Dr.Nelson said to wear it for an additional hour or so during the day to help relieve some of Amaya's knee pain, but we weren't sure when to do it. Jeremy said that adding and extra hour before bed isn't as beneficial as wearing it in the middle of the day. So Josh was right and I was wrong.
     Since Amaya had such a rough night and was still sore I decided to keep her home from school today. We stopped by Marilou's office and then went over to grandma Lilli's for a quick Easter egg hunt. Both were good ditractions for Amaya. When we got home Amaya wanted to rest, but unfortunately I had to put the bar in her fixator. Which was tough. I did some stretches before to help straighten it, but the muscles are so tight! You can even see how tight they are thru her skin. It's hard to see her in pain. After a few stretches I was able to lock the bar in place, but not without any pain. She was clearly uncomfortable. I got her a hot pack, then a cold pack and massaged her feet and knee the whole time. I kept it on for an hour. After that she got to relax while I made dinner. During her shower her top pin sites and the middle ones were a bit gunky and stuck to the gauze. It was very painful to remove the gauze. I soaked it as best I could and softened it with the soap, but it still pulled at her skin. She screamed and was relieved when they were off, so was I. I brought her down to bed about six and she was exhasuted. She fell asleep quickly by six thirty. But woke up by seven in pain. I had put Lidie down by then and then was able to lay with her. Then she asked if both dad and I could rub her knee. He rubbed the bottom and I rubbed the top then we all fell asleep. I woke up at eight. I put dinner away,washed dishes and sat down to post. I'm exhausted too so I'll be heading to bed now (after I post the blog, turn her bar, and get her pain meds ready for the middle of the night). Thankfully Amaya has stayed asleep, although I do hear her moaning every once in awhile. I hope we can get this knee pain under control.

Melissa helped stretch Amaya's hamstring.

Melissa tried to see how high Amaya could kick up her leg. She was able to get it that high.

Amaya played "soccer" with that big orange ball. She was able to score one goal (getting past their legs).

Lidie gave her "talking cat" a cast yesterday out of a gum wrapper. I wonder if others people's kids do this as often as ours do?

Amaya, Zoe and Lidie building at the Lego store. Lidie ended up getting a Lego sailor girl with one arm. And Amaya got two Lego people; one that Ben made and one that Zoe made. They love them!

Here's the kids posing for a picture. Aren't they cute?

During a potty brake, Ryan and Ben showed us Ben's shoe lift and foot. Amaya thinks Ben's toes are cool!

Here's the kids playing Star Wars. The girls are using "the force." 

I love the smile on Amaya's face! She had so much fun playing with Ben and Zoe, and Lidie.

Here's a close up picture of the kids. They really are a sweet group of kids; creative, fun, kind, loving, and accepting. 

During physical therapy today. Jeremy had Amaya laying on her tummy to do her leg bends. Ouch! This was also the first time she got on her tummy with her fixator on. Lidie decided she needed to stretch as well.

While Amaya was on her tummy, Jeremy helped push Amaya's hip down to stretch it.

On the other end of the table, I got to snuggle with Lidie. 

Jeremy measuring Amaya''s knee.

Amaya practiced walking down the hall and back on the walker. She needs to work on two things; keeping her left leg straight and bending the knee on her left leg as she steps.

We had a parade down the hall. Jeremy led on his chair, Amaya followed on her walker, then Lidie on her scooter then me pushing Amaya's wheelchair. We brought the wheelchair along in case Amaya got tired and couldn't go the whole way, but she did it!

We stopped by Marilou's office to give her a much overdo thank you card (Amaya made sure to sign it; it was very cute!). Marilou had some supplies she had gathered for us and then we were able to get a picture with the two of them. Now you can all put a face to the name. Amaya was so glad she was able to see Marilou. She knows how much Marilou does for her and is very grateful, as are we.

Later we stopped by Grandma Lilli's for an early Easter egg hunt. The bunny ears were gifts from Grammy Diane. Both were huge distractions for both girls especially Amaya. 

Lidie was running around so fast I could barely catch her in a picture. This is the least blurry of them all.

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