Tonight it feels like I can’t catch a break even if I used a net.
My wunderkind is down again. A dear friend emailed me yesterday “apparently no one told Nik he has special needs.” Apparently no one told him he was sick, either.
Today was a bumpy day after a bumpy night in a string of bumpy nights. Then the wheels fell off the bus. Nik broke out in a very fine, pinpoint raised red rash on his back, his feet and ankles, his arms, under his arms…
What’s a mother to do when her child is on so freaking many meds and has multiple medical diagnoses? It could be from the antibiotic —unlikely as he’s taken this one many times with no side effects, but you never know. It could be —waaaay scarier —a rash caused by one of his seizure meds. We talked to our awesome neurologist this evening (he even gave us his cell phone number!) and he told us to stop the medication entirely. Not something that is normally recommended with this kind of med but he wanted to err on the side of caution as the alternative could be, um, potentially permanent.
Then again, it could be something viral like roseola. Or, possibly, something else entirely.
Yeah, Niksdad and I really relish the idea of spending a sunny, beautiful Saturday traveling to the hospital to have someone that doesn’t know anything about Nik tell us, “Um, well, we’re not really sure…” Yet, we have to cover all the bases —just in case. Nik’s fooled us in the past and it hasn’t been fun.
There’s a little more to the story but I don’t have the mental energy to try to tell it. Something about the increase in all the icky “mysterious pain” behaviors and the angst of watching my son struggle so. I tried to tell him tonight, as he cried and pulled me to him —clinging to me like a monkey —that his Daddy and I are trying really hard to make it all better. I think he understands that; I hope he does. My heart aches and I am frustrated.
Can’t we just deal with one stinkin’ thing at a time? ARGH!
And have I mentioned that I’d sooo much rather be at BlogHer with Susan, Kristina, Vicki, Jennifer, Kristen, Jordan, Stimey, and a bajillion other potential blogging friends? Or DisneyLand with my pal, Drama Mama, and her awesome girls?
(Thanks in advance for the prayers and warm thoughts.)