Last night when I went to bed Amaya started crying. She said her knee was really hurting and her feet felt numb (that feeling always scares her a bit). I gave her, her next dose of pain meds, rubbed her knee and feet and tried to calm her down. We're noticing that when it comes to night time it's part pain, part emotions. If we can get her calm and relaxed then she's able to deal with the pain better. She fell asleep after a few minutes and stayed out all night. But when she woke up this morning she complained of more pain. Today we stayed home for the morning and I was able to catch up on my chores.
Today was a teacher prep day for Amaya's teachers, they go back on track on Monday. We thought today would be a good time for her to go down and see them and prepare for returning to school. I made sure we did our physical therapy session before we left. Her hamstring muscle is still tight and causing her some pain. She did minimal complaining today, which was nice. Before we left she gave me a scare. I was loading the car up and when I came back in I saw her standing by Lidie all by herself. No walker, no wheelchair, nothing! Sheesh! I let her know that, that wasn't safe, she could easily lose her balance and fall. Standing with a walker is very different than standing alone. She finally agreed, "okay, mom, I won't do it."
When we got to the school so many people stopped to say hello, and talk with Amaya and Lidie. The girls loved the attention and kind words. Several people told Amaya that they were proud of her, and had been rooting for her. And they told Lidie that she was a great sister for helping Amaya so much. Amaya got to see her teachers, Mrs.Griessbach (her kindergarten teacher) and Ms.Gillespie (her first grade teacher. Amaya goes to first grade for several hours each day). They were both so kind and warm with the girls. Amaya's face light up when she saw them. They were impressed with how well she looked and how well she could maneuver in her wheelchair. We went into both classrooms to see if the wheelchair would fit at tables, and let Amaya practice moving about the classrooms. All the rooms are wheelchair accessible, so it was easy for her to wheel in and out of the rooms. She also practiced transferring out of her wheelchair and into a classroom chair. Amaya can either stay in her wheelchair or transfer out. I loved and appreciated how both teachers interacted with the girls, their willingness to help, and make accommodations for Amaya. Great teachers make things like this so much more easier to handle. Ms.Gillespie asked if I could come with Amaya on Monday and talk with her class about PFFD, the surgery Amaya had, the fixator and how they can help. They both wanted to make sure I talked with the class about safety, how to give Amaya space, how to help, to be careful not to bump her fixator, etc. I of course said yes to all those things. I'll be going wiht Amaya for the first few days. I'm glad they're both putting so much thought and planning into how to make this a smooth transition for their class and Amaya. We also practiced going to the bathroom. Even though their is a wheelchair accessible bathroom in the kids bathroom, since Amaya needs a "spotter" she'll be going into the nurses office to use the restroom. At least until she can start to bear weight on her left leg. Once she's able to do that then she can go in by herself. Before we left Amaya said "I want to come back tomorrow." I think going each day (she won't be going the entire day, because she'll have to leave for physical therapy each day) will be a good distraction, provide her brain some stimulation, and be a good social outlet.
Once we left we took the girls to Chuck E. Cheese. Amaya spotted a mini gumball machine before her surgery and has been wanting to go and earn more tickets to buy it. While we were there it was nice to see the girls deciding to play games together. Amaya played in her wheelchair several games, and transferred out into several others. At one point a little girl (maybe three or four years old) was starring at Amaya. Very obviously, and following her and gawking at her. I kept trying to find the mother (she was busy playing a game with her son). Amaya got kind of bothered and hurt by the girl's stares. She said "she's just looking at me cause I'm weird." We explained its just because she's young and interested. But, Amaya doesn't like much attention so she wasn't too happy, either way.
Amaya's prescription was ready to be picked up today so we went over after Chuck E.Cheese. When we pulled up Lidie yelled out "I wanna go to Children's hospital!" Of course she does, she didn't have to. I quickly ran in to the hospital (that's where the prescription was filled). As I entered I had an eerie feeling, almost like deja vu. My fast pace, reminded me of the many times I quickly walked in to go up and see Amaya after a long night apart from her. Seeing the families sitting in the waiting room reminded me of all the waiting Josh and I did, and how long those hours seemed. I was relieved, that we were no longer in the hospital, thankful that both girls are healthy, saddened by just how much she's been thru (we all have). I had that feeling; where you feel so many things at once that you can't decide which feeling or what to name it, well I felt that and remembered just how many times I had felt that in the past few weeks.
Once I picked up the prescription the lady told me that they don't put any flavoring in the medicines there at that pharmacy. I thought it was strange, but she did tell me that you can take a prescription into any chain pharmacy and that they would add it for a minimal cost. We stopped at a Rite Aid that was down the street. The pharmacy tech there added strawberry and watermelon flavor for $2.99. Three dollars is a pretty low price to pay for a child's comfort. Isn't that what Mary Poppin's sang about, "a spoonful of sugar, helps the medicine go down..." Anything to help alleviate Amaya's discomforts.
Oh, and remember that post we got from the fifteen year old on our blog? Well we found out its a girl. She lives in New York (which Amaya thinks is so cool!) and is Amaya's new "fixator friend." She's actually 18 (a typo that she was 15) and sent us a very nice email today. I'm excited to continue to correspond with her. Maybe she can be a pen pal for Amaya. I appreciate her willingness to help Amaya on her journey. She even sent Amaya a picture of herself with her fixators (she wore two at a time!). Amaya loved seeing the picture and putting a face to the words. Thanks again Alison, for reaching out to us, you don't know how much we appreciate it.
On the ride home, both girls fell asleep. Which reminded us that we have to make sure to be home early (even though it was only seven thirty) to make sure we have enough time to get Amaya ready for bed. We skipped her bath, but did do gauze changing (her top pins had a little blood and the middle ones had a reddish discharge). I miss those times when we could just carry her in to her bed and she'd stay asleep. She took about forty five minutes to go back to sleep. She cried, and said she couldn't handle the knee pain or the bar tonight. But I got her calm with massages, and singing. She doesn't know how strong she is or how much she can handle, how much she already has. But, I know.
During our physical therapy at home. Amaya sometimes uses her right leg to push on her left leg to get the bends we need.
Here's Amaya with her kindergarten teacher, Mrs. Griessbach. Can't believe I got her with her eyes closed. But, you can see just how big of a smile she puts on Amaya's face.
Here's Amaya with her First grade teacher, Ms. Gillespie. It's hard to see in the picture, but Amaya has her arm wrapped around Ms.Gillespie's shoulder. It's very sweet!
I love Lidie's smile in this picture. She's riding a horse at Chuck E. Cheese.
Amaya was playing the Mario Kart game. She was able to transfer out of her wheelchair and onto the seat by herself.
I love how intense she looks! She just might have her mother's competitive edge.
No comments:
Post a Comment