Tuesday, April 9, 2013
Today I woke up and it was just like any other morning. I lay in bed for a while in pain wondering if I could get up. I went to eat breakfast and my teeth and jaw were killing me so I just pushed through it. Then I had to take a shower and the water was cold. Normally when I get out of the shower, I get in the bathtub with Epson salt to relax my body; but this time I couldn’t do it because I had class and I was running late.
After my class, I was too tired for a bath; so I took a nap. Then things got even worse my mom had to wake me up to go to O.T. When I woke up, I was crying in pain. I walked into O.T. in tears. My O.T. began to test my range of motion while trying to cheer me up.
O.T. was hard today but when it was over I felt a little better. When I got home, I had to do math… so I was prepared and tried to get into my virtual school but they updated the software, so I had to reschedule. I downloaded the software and it took a lot less time than I thought. I called my virtual teacher back but she was already busy so she told me another assignment I could do independently. I did it and felt really good about myself.
This morning when I woke up I didn’t even want get out of bed but by the end of the day I was happy and feeling O.K. So do you want to know how I do it? Well, it’s all because of my mom. If my mom didn’t wake me up and encourage me, I would not have gone to O.T. and wouldn’t be happier. And throughout all this, she was by my side cheering me on. So my advice to you… never under estimate the power of family and always keep them close to you.
Sunday, April 7, 2013
Ever since Parker’s last hospital stay, his health has been a struggle. We literally had to call him in sick to hospital/homebound teleclasses for the last month. Thank goodness they were able to freeze his grades. For the pass month, he has complained that his bones hurt and it feels like they are going to break and he has slept the days away. We could barely wake him to take meds and eat.
We kept thinking he would bounce back because we would give him the rilonacept shot each week and he would be a bit better for a day or two…but then it would just continue to get worse and worse. He was taking daily Epson baths and crawling back into bed. He wasn’t even up for playing his Xbox (this is huge).We kept trying to encourage him to get up and succeeded a few times only to see him make it to the couch and fall asleep again. As I expressed to his doctors, this was really starting to concern me. As I got to thinking (sometimes thinking is dangerous), I realized that it had been 9 months since he started rilonacept and I began to fear the worst…another biologic failing. All other biologics that we had tried failed between 6 and 9 months. And the last time he was on the verge of MAS (macrophage activation syndrome – a very dangerous complication that some kids with systemic on-set JA get), he acted similar. So as a mom and dad, we were quite concerned about how he was presenting and behaving. So of course, I contacted his primary pediatric rheumatologist and we were advised to come to the hospital.
They did blood work, an MRI of his hips/groin, and meds were started. That first night, I did lots of thinking (this time, not so dangerous…). I realized that he has gotten worse since adding one of his two newest meds, prograf and baclofen. So, the next day I asked if flushing and being extremely lethargic were side effects of either of his new meds. Yes! Prograf causes flushing and the baclofen could cause lethargy. Then, while reviewing his labs and MRI results, we got marvelous news. Our prayers had been answered…the rilonacept and hizentra are definitely working. All his lab numbers look better…way better and his hips also looked good. The meds are doing what we had hoped and are stopping this darn JA from progressing! After further discussion, we also realized that Parker could not handle the baclofen at the dose he was at and also it shouldn’t be given with one of his other meds, which we have since discontinued. We are already seeing a huge difference. His is AWAKE, interacting, playing, and chitter chattering up a storm.His doc also told us that she is re-checking his vitamin D. Those results should come in tomorrow. When children have extreme D deficiency it can literally feel like their bones are going to break. So if that is the case, we simply need to increase his D. Another great solution! We are so happy to be home and to see our Parker looking better and feeling more alert.
Now we can focus on getting him better and better, getting back on track with school, having some fun and getting ready for the upcoming walk! Thank you to all of you who continue to cheer Parker on and who send us positive vibes, prayers, and a giggle from time to time. We are so fortunate to be surrounded by love.
Link to Parker's Purple Playas Walk Page: http://awtampa.kintera.org/faf/donorReg/donorPledge.asp?ievent=1042465&lis=1&kntae1042465=A84F7AF1A0954307A54209E85C953A06&supId=345360575