Kylee had kind of a rough night. It wasn't too bad, but she had a few battles of pain that didn't last long, but still kept her up for part of the night. David has Mondays off so he was amazing enough to let me sleep in my bed while he went and catered to her. If someone is in the bed with her, she doesn't complain of the pain as long. And she is usually more quiet with her cries. But anyhow, she had a semi-rocky night but woke up feeling good and ready to go to school. Mondays are my favorite day of the week because it's the one weekday that David has off and that we can do things together. So we planned to go into town and do a few things. We wanted to go as early as possible because if and when we get phone calls from the school for Kylee, it's usually around 10am. So we got ready and were on the road just before 9am. By the time we drove 15 miles, the school called. The most frustrating part of Kylee's pain while at school is that it does go away eventually (after 15-30 minutes). But trying to talk her out of it and to not focus on the pain is impossible when all she wants to do is go home and rest with me. But after 15 minutes of being home, she is absolutely fine! So I hate taking her out of school. But of course she wouldn't calm down this day so we decided to take her out of school for the duration of our errands and then take her back. And of course, after about 15 minutes in the car with us, she stopped crying and her pain had subsided. O'well....she needs extra love and care during this time and I will do all I can to help her heal faster. And if mentally healing her helps, I will do it!
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We took her back to school about 2 1/2 hours after we initially took her out and she was absolutely fine for the rest of the day! She went to bed and slept all night without one peep. She woke up feeling great and just got picked up to go to school and take her AIMS test! Testing is all this week and I told Kylee that she HAS to get through her testing in the mornings. They are over by about 9am so I'm confident she won't be distracted by her pain. If I do get a call from the nurse, I'm not going to pick her up. I refuse! The gabapentin works, but sometimes has a minor lapse of control...which causes her pain to come to the surface. But it always goes away within 15 minutes or so. But when the pain is there momentarily, she just sits in her chair at class and thinks about it and makes it worse than it is. When she is at home, the pain might come for about a minute but then we distract her mind and keep her busy so that she doesn't dwell on the pain. So it's hard when she's at school because she has nothing to do but think and dwell on the pain.
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Her pain is always either in her back, legs, arms, stomach or head. But the past few days she has been complaining of pain in other areas such as her jaw and her ribcage area. So there doesn't seem to be any limits to where her pain can be. She has an appointment with the neurologist today and I have written down a list of questions for her. Hope to get a few more answers and to just keep moving on and helping Kylee's body heal fast! Kylee was supposed to start physical therapy yesterday but the physical therapist we met with (who is a friend of ours) referred us to a neurological physical therapist who specializes with strengthening and healing the nerves and muscles. I didn't realize there was such a person that does that. So we scheduled an appointment with that doctor for tomorrow (Wednesday). We are anxious to see what they will do to help her.
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So for now, we consider Monday a good day! And Monday night was perfect! Hoping for a solid day today as well.
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