Yesterday Lidie asked if she could see Amaya's pin sites. I told her that unless we're changing them, we don't really touch or look at them because we don't want them to get dirty or infected. She asked if I could show her pictures of them. When I did, she winced and said, "ow, oh, no." It's sweet to see her so empathetic with Amaya. She really loves her and hates to see her in pain. Both days Amaya would occasionally ask to straighten her leg. She said it felt good to her to not have it bent. Since her thigh muscles are so tight, I definitely understand her wanting to do that, but know that what she really needs is to stretch it and massage it. So I would let her bend it, and sometimes help straighten it for her, but then would follow it with either a massage or stretching or both. Melissa had told us that when we do our physical therapy at home this weekend to hold the stretches for a count of thirty instead of ten. Poor Amaya, we've been working that muscle so much. But, I know that this will help ease her pain for the next six to eight weeks (or however long the rest of our lengthening takes).
Last night we tried a new routine for Amaya's bedtime (we made it a little bit later, and let her have more time to relax after her night routine). It seemed to work okay, but bedtime was still the same as it has been (falling asleep quickly then waking up in a few minutes with numbness and pain). She slept pretty good thru the night, just a few times when she moaned and cried, but she stayed asleep. I just rubbed her knee and she was able to stay calm. She slept in until seven, which isn't late, but later than five thirty or six (which is what she's been doing). Today when Lidie woke up she was still half asleep and said, "hey mom, you have legs. You have two legs." "Yes I do." I said. Then she went on to tell me, "some people don't have legs. Some just have one or none. And they dance, and wear leotards, and it's okay." I just smiled and thought how sweet, wise and accepting she is at the age of three. Growing up with Amaya as a sister and being exposed to all that she has is helping her become an empathetic, accepting and sweet person.
Amaya's morning started with a massage. Another knee, foot and thigh massage, that led into some knee bends (not a full workout, but just some bends to wake the leg muscles up). As the girls ate breakfast Josh and I were talking and comparing our situation now to when the girls were newborns. It's really a good comparison, because Amaya is so needy right now and requires so much constant care. Especially at night time and during the night. He told me I was doing a good job taking care of her and Lidie, which is very nice to hear and meant a lot, then encouraged me to go downstairs and take a break from them. He suggested I shower, or take a bath, or watch TV, or read or nap. They all sounded wonderful. I ended up resting and watching some old episodes of Friends (they always make me laugh and are a good release for me). Lidie came down at one point and "kept me company" then headed back up to play. It was such a nice break. When I came back up, he had given them lunch and kept them busy. After my rest we got ready and headed into town for some ice cream. Then we went over to the elementary school that sits below our house. We decided to do some of Amaya's physical therapy there today. She tried riding Lidie's bike with training wheels but said she prefers the one at physical therapy. But she did end up riding a scooter that we've had since she was three. She did great, and rode it for over half an hour. She pushed herself and really had a great deal of balance and strength in her legs. We also did her knee bends there (again we held all ten stretches to a count of thirty), but did her other stretches and exercises with the band at home. It was nice getting out of the house and doing something new. While we were there Josh found a ten dollar bill and a dog or cat skull (that the girls thought was cool to look at). Afterwards Amaya was sore and tired so we went straight home. We made another adjustment to her bedtime routine tonight and so far it's gone great. We had her start her chamomile tea earlier, then dinner then shower. Then we let her stay upstairs to watch a movie while I did her stretches, locked her bar in place,put her gauze on and massaged her leg. Then after about twenty minutes her foot got numb and in pain and we were able to work thru it with her awake (we massaged it and stretched it). Then a few minutes later we had her go potty then took her down to bed. She fell asleep within ten minutes and has stayed out, she has moaned once already, but massaging her knee did the trick. We'll try this again tomorrow night and see if this routine will work again.
Josh spotting Amaya as she first got on the scooter.
This is her pushing herself along. She would put her left leg on the scooter and push with her right leg.
Then she started doing it all by herself. I was a bit anxious and wanted Josh to be a bit closer in case she fell.
Sweet Lidie kept busy riding her tricycle.
Look who had such great balance! She was able to ride up and down a hill, balance while she stood still and was moving, pedal then put both legs on the scooter. She did great! She said it was easier to scooter on cement than on the carpet at physical therapy.
We did our stretches at the school as well. This is Amaya bending her knee back. She worked hard, we did ten bends and held each one to a count of thirty.
Lidie came to take a break next to Amaya. Its sweet to see them holding hands while Amaya did her stretches.
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