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?
*sigh*
(Thanks in advance for the prayers and warm thoughts.)
Oh dear! I am so sorry. I would give up blogher in a heartbeat if there was something I could do to help. You do shoulder more than your fair share. And that sweet boy. I want to give you all a hug and make it better.
I’m so sorry for you and Nik! It must be so frustrating. You’re definitely in my thoughts and prayers as you seek an answer. Many hugs.
Wish I had some answers (or even one answer) for you. Instead will send the {hugs} and prayers.
Joe
It’d be SO much better if you were at the conference! Hoping it’ll be somewhere back East next year/soon. Wish you didn’t have to play detective again—–hugs and thoughts and all good vibes for Nik and you.
sending prayers your way, my dear. for answers and relief from mysterious pains and illnesses of ANY kind.
maybe i ought to sneak over there and pick you up and jet us both out to SF for the day? wouldn’t that be divine?
What a mess. It’s so difficult to deal with so much at once. Wishing a speedy recovery and some answers for you and Nik.
Thoughts and hugs for you and Nik. Hoping tomorrow is a better day
dang girl! hugs to the whole family. If I had any patience or answers, I’d surly share with you. I just chant to myself “ride the wave” and try not to ignore the feelings of sea sickness.Hope Nik feels better very soon!
Oh, dear, I hope this gets figured out very soon. Sending lots of hope and love to all of you.