Wednesday, June 12, 2013

test. doctors. blah.

so big has been having headaches for about a month now.  it all started with a weird 36 hour high fever accompanied by a headache and neck pain, as well as light sensitivity and vomiting at some point.  it came on all of a sudden, and left just as quickly.  (and yes, we went to the doctor to make certain it wasn't meningitis).
almost every morning since then has been started with a headache.  so i finally called her neurologist.  tomorrow we will see the eye doctor to make sure there's nothing going on there, and have a head ct to see what is going on in there.  (yes a ct instead of an mri.  there's a good reason.  i don't desire to write it all out right now).
i mostly think she's fine, and she might just have headaches.  one of those fun NF things that can happen.  but also, she has we can't write things off quite so quickly.  thankfully, i'm aware that her mri in march was clear of tumors so i'm not freaking out about it.

and little has been on her new seizure med for almost a week now.  one of the potential side effects is glaucoma. it's a low risk, but it's there.  and a sign of it would be red eye.  guess who's eyes started to get very red this afternoon.  i have no idea if it's from spending time outside at the splash park today, and just being tired from being in the sun, or if we were lucky enough to win the 'unlikely but worst side effect possible' lottery.

as i'm sure you might be able to guess, i'm a little all done right now.  and there's no time out in this game.  i got to keep pushing forward even on nights i want to collapse on the couch and be tonight. so please pray. for the girls. for me. for jason.  and for our family to have rest.  not just sleep at night, but some real rest.

she loves the water. 

so did she! (i just did this hairstyle-first time doing yarn twist/extensions. she's in love with having 'long hair.')


  1. I have NF and have headaches all the time, like pretty much daily at some pain level, all the way up to a true migraine. I've had so many CTs or MRIs to keep an eye on things because you know, it isNF so...but thus far the headaches are just one of those things.

    Will pray for Big, living with NF and all that goes along with that.

  2. I couldn't edit the post for some reason, adding that the migraines aren't daily, that is just the headache range I have.

    NF is such a juggle on what/how much to go have tests or when to just chalk it up to "one of those NF things" it is a struggle, I know.