eeg and more on that mri.

so last wednesday shilo had her mri, with less than stellar results.  and this week she had a 48 hour eeg.  we had been waiting on those results as well as the mri from a year ago to compare to in hopes of learning a little more about the changes in her brain.

our (awesome, amazing, above and beyond) neurologist came to see us wednesday before discharge, and took my husband's cell phone number (since we are visiting family) so that she could call us today, the day after thanksgiving, with results of everything.
while i had no hope of that before she said she would, since it was a holiday weekend, as a parent with tons of possibilities rolling around in my head, i was beyond grateful that she said she had already planned to go in on friday, and would make it a priority.
she called at noon today.  she had everything,  aside from the mri to compare it to. as i suspected, shilo had lots of short episodes during sleep.  this means we will increase her seizure meds again and see if she doesn't start sleeping a little better.  the thing i was unsure of, perhaps her seizures were coming from the temporal lobe now, instead of the frontal lobe where it has always showed before.  but, the seizures did not change location in her brain.
so that mri.  let me start with what we know (which isn't much).  shilo's mri showed bilateral temporal lobe stenosis (scarring) and atrophy.  both of these things are really common in geriatric patients with alzheimer's.  they are also not unheard of in patients (generally teen and older)  having temporal lobe seizures, although they are almost always unilateral in this case.  but, in a two year old, well, it's just not really found.
had she been having temporal lobe seizures, there was a high possibility that she would have been recommended for a temporal lobe lobectomy.  and i don't know that, that's completely off the table.  but at this point we still have to figure out what's causing it.
so please keep praying with us for answers, and that there would be no more changes.  brains are pretty important.  and your temporal lobe takes part in lots of functions.  the idea of her little personality changing in any way is very sad.  we really like her, just the way she is.

our sweet snuggle monkey.

the night before.

tonights are my least favorite kind of nights.  it's 'the night before.'  packing.  making list.  being filled with dread.  and more dread.  tomorrow morning, we will arrive a the hospital around 8:15 a.m.  we will check in and do a 48 hour e.e.g. with little.  some part of me starts to panic a little.  what if we are there longer?  will she sleep?  will i sleep?  how much will i have to fight with doctors over stupid stuff?  will they keep her medicine schedule right?  will there be a mom across the hall who stops in every time she walks by to tell me this is their 18th e.e.g. and they brought their own mountain dew because the hospital doesn't have any?  sometimes, the anxiety is overwhelming.
and the other part of me is really sad. big was ecstatic to go stay the night somewhere, and play there all day tomorrow.  she will be so excited about the (healthier version of) hotdogs i bought for her and jason to have for dinner.  she will love the daily notes i left for her.  but i will miss her.  and i will miss having my husband close by to tag out when i need a little break.  to decompress with at the end of the night.  to snuggle on the couch and laugh together.
it will be me. on my own. so pray for me.  pray for shilo.  and please pray that i don't have to fight over ridiculous things like giving my kid the name brand medicine because the generic doesn't work for her.  (yes, that has really happened).  every now and then, an 'easy' would be nice.

this and that.

first of all, a little advice.  if, by chance, you will be stuck inside your home for multiple months due to a need to avoid germs, giving up all of your vices is not in anyone's best interest.  thankfully, i can still nap.

secondly, jillian (from the biggest loser) hates my legs.  and the feeling is mutual.  two days in to one of her work out videos, and i am considering purposefully dehydrating myself. the pain that comes from sitting and then standing back up, to go to the bathroom, is not worth it.

third, we are mere weeks away from re-entering the world.  i just purchased one of these bad boys for shilo to use.  i'm pretty excited to get to grocery shop in the mornings again, with both of my girls, while the rest of the world is at work.  sunday afternoons suck in grocery stores.

fourth, our video eeg results were....abnormal!  no big surprise there.  so we will be starting on seizure meds, and i will spend hours upon hours reading about the type of seizures she has, and watching youtube videos.  it's what all of the cool parents do.  i would tell you what they were, but abigail was talking at me while the nurse was talking to me on the phone.  i only grasped the really important things.

fifth, abigail and i had a three minute back and forth discussion, completely in asl.  now if only she would apply that to me signing, 'please wait' while i'm on the phone with aforementioned nurse.

last, i gave up facebook for lent.  so most of these things are what i would have posted there, but i can't.  and so, instead, you get my small life blurps.  you're welcome.