Today I am hanging out at home again, though this time not because of the weather. This time its because Jellybean is suffering from the effects of Sickle Cell Disease. We've been pretty lucky so far with Jellybean and his Sickle Cell. In the 2 years the boys have been home, we haven't had any major problems. No hospitalizations, no missed days of school. He's had some fairly minor pain episodes (4 of them), but they only lasted a day or two and we've been able to keep the pain under control with over the counter pain meds. We know that he won't always have things so relatively pain-free, so we've been really thankful that things have been going so well.
Since Z has been spending so much time away from home for Army duties lately, he decided to treat me to a night out with a friend on Friday evening while he stayed home with the boys. This, of course, meant that they spent the evening eating "man food" (chili dogs), watching a movie, and playing video games. It also meant that they stayed up later than usual and drank some soda (a pretty rare treat for the boys).
There was more staying up late, getting up early, lots of family fun time, snacks and sodas throughout the rest of the weekend. This (combined with a bit of a cold), unfortunately resulted in Jellybean's pain episode today.
Last night, after completing the last of his homework, Jellybean started complaining that his knee hurt. His knee is not usually his "hot spot", so I didn't think too much of it. I assumed he had bumped it on something while he and his brother were goofing around. By bed time, he was limping around and complaining a lot more. So, I gave him some medicine and sent him to bed.
At 1:00am, he came downstairs to tell us that his leg still hurt really bad. Z gave him some water and sent him back to bed. At 2:15am, he was calling for me so I headed up to his room to find him rolling around on the floor crying, holding his knee. So I sat with him for a while, got him some more medicine, talked with him about why it hurt ("It hurts all by itself - I didn't bang it on anything"), gave him some more water, and tucked him back in to bed. When he woke up this morning, it was the same story again. Jellybean writhing in pain, clutching his knee.
I wish I could take this pain away from him. I wish there was a magic pill I could give him that would stop the pain, help him sleep better, and allow him to play all the sports he wants without having to stop every few minutes to drink water and rest. I wish he didn't have to miss school because he's in pain. I wish that he didn't have to feel singled out when he has to go to the specialist for check-ups.
And most of all, I wish that he didn't have to get used to this. I know its likely only to get worse over time, not better. Oh how I wish I could change that.