seizures.

little has been rocking out, seizure free, for multiple months now.  and, like always, i have been holding my breath as a result.  waiting.  waiting.  and, it happened.  i think at this point it's just something we've accepted as part of our life cycle.  seizures are controlled.  shilo has seizures.  meds are increased or changed.  start over again.

yesterday morning, shilo looked like this.

unable to hold up her head.  eyes are droopy.  a tell tale sign that sometime in the night she had seizures.  sometimes they continue through the morning and are accompanied with vomiting.  sometimes we just know she had them, but don't actually see any more.  yesterday we didn't see any more.  but, her head stays like this, and her eyes often drift in different directions until she looks like this for a while.

when she wakes up, she is never quite fully herself, but she can hold her head up right, and her eyes aren't going in two different directions.  naps do that for me too.  it takes her about twenty four hours to get back to herself again.  but, that doesn't mean our afternoon wasn't full of fun things.

 because seizures are best followed up by eating cheese puffs, and smearing them in your hair.

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.

and, test.

so last weeks appointments are over.  abigail is now officially able to eat tree nuts and peanuts again.  matter of fact, we have nothing we have to worry about food wise.  it's weird, and i still carry the epi-pens with me.  someday i'm sure i'll be able to let go of that, but they have been a part of our 'leaving the house bag' for around four years now.

shilo's mri results were less than stellar.  we are still awaiting all the details that will be emerging over the next few weeks before we share anything big.  her neurologist is waiting on a copy of the films from her mri a year ago to compare.  she is also waiting on the results of the 48 hour eeg that will take place from tomorrow until wednesday.  while i am always hopeful they will capture something, this time it's of dire importance to figure out what to do about her abnormal mri.  so please, please, pray that they get good, clear information so we can know where to go from here.

i'll leave you with some pictures from abigail and i's date today so that she could have some mama time before i'm gone for a couple of days.  and a few of little being her silly self.

'papa, will you take a picture of our snuggles?'

snowman cookie.

drinking tea.

building with jenga blocks.

jenga blocks become props for 'little house on the prarie' play.

breaking up stir sticks for the ingalls to have a 'feast.'

'take a picture of me with the cabin we built.'

i love these hands.

'let's pretend to sleep, but don't close your eyes.'

'a perfect animated story telling face.  this was not posed.'

reading some comics.

reading a book she found.

'someone left their bookmarker in it.'

home, helping me ice our carrott cake.

how shilo helps in the kitchen.

we make tasty cream cheese icing.  also, check out the little one adoring the big in the background.

even this girl likes it.

the sound of joy.

after being stuck in construction traffic for over an hour we stopped for dinner.  the girls were restless from sitting in their seats for so long.  jason and i were tired from a weekend away from home and our own bed.  we sat at the table working hard to not let our exhaustion and frustrations spill over into our parenting.  i colored pictures with abigail, and we signed with shilo while she nibbled on crackers (and spit them back out).  at the end of the meal, i held shilo on my lap, and abigail tickled her, and did her usual silly antics to try to make her laugh.  jason and i were both smiling and enjoying watching our girls interact.
but all the time we were sitting there, i could feel it.  i'm mostly used to stares at this point.  our family causes people to do double takes, likely because they are just trying to figure it out.  adoption?  two different dads?  what's going on here?  and does that little one have Down syndrome?  i get it.  we stick out a bit.  but the woman at the table behind us was flat out staring.  not occasional glances.  not the awkward look away when she notices you noticing her.  staring.  and for a moment, i wondered if abigail was being too loud.
but, she wasn't.  she was being joyful.   i wanted to share our story with her.  i wanted to tell her how we almost lost our little, twice, and that i can't help but be filled with amazement at the fact that she's still here.  i wanted to tell her that abigail had every reason in the world to act jealous of her sister.  but instead, she loves her.  and the thought crossed my mind.

this morning, i got up with little at 5:30.  seizing and vomiting.  then smiling.  then some more seizing and vomiting.  then laying in my arms and smiling up at me.  two doses of diastat.  sleeping.  smiling.  at some point, i became worried that she also hadn't peed since 6:30 last night.  and as 9:00, then 10:00 passed, and she still didn't go, i knew i had to call the doctor.
so, a trip to the doctor, a blood draw, an x-ray, and an ultrasound of kidneys and bladder.  she smiled at the ultrasound tech.  she commented on how amazing it was that a little girl that had, had such a rough day could still smile.  and the thought crossed my mind again.

joy can interrupt the longest of days.  but it doesn't generally whisper.  joy is loud.

friday, you suck.

yesterday, i wrote a post about my oldest daughter's ridiculous affinity for eating things she shouldn't.  like glass.  and our e.r. trip.  but wouldn't you know, if one has something, the other tries to outdo.  so yesterday was a two e.r. trip (sort of three, but not quite), one ambulance transport, mama needs a relaxing adult beverage sort of day.
child #2, aka, little, had a huge cluster of seizures.   after dinner, they started.  i called a nurse on call.  they said take her in.  the e.r. locally gave her a second med to stop the seizures, and after a bit we were discharged.  we walked out of the e.r., and shilo promptly had six seizures (this is where they sort of three comes in since we had to be re-admitted to the e.r.).  the girl is starting to make a name for herself with post-discharge seizures.
so we walk back in, they take us back, and the doctor says they are admitting.  i would have been surprised if they had kept us since they aren't equipped for things like video eeg or even kids as complex as shilo (and i say that knowing that she is not nearly as complex as many other kids i know).  so we get told we are being transferred via ambulance to our new neuro's children's hospital.  they are keeping us so they can give her another med to help stop the seizures.
while there were lots of frustrating things about this specific trip, we will focus on the good for now, including that fact that while we were at said children's hospital, we saw her actual neurologist. so we got to talk to someone who already knew her history, and my thoughts on treatment.  we increased her dose of new med, and we are now home.
i honestly don't have high hopes of this being the answer either because this is what she did on her first med: responded well for the first little bit, and then just had progressively more and more seizures until we switched meds.  my kid had around 100 seizures between 6:30 last night, and 1 a.m. this morning. it's slightly frustrating, and mostly scary to watch them as a parent; there's nothing you can do.
i'm glad it's saturday though.  i can't think of a friday that was more eventful than that one, in my entire life.  little is sleeping now, and we haven't seen any seizures since 1 a.m.  i plan on going to bed very early since we arrived at the second hospital and got settled in at 3 a.m.  and i plan on partaking of my adult beverage privelage tonight as well.

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 NF...so 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 done....like 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.')

follow up.

i want to start by letting people know that if you wrote a comment on my post about our frustrations, and it mentioned the specific hospital you thought we were using, i didn't publish it.  i'm attempting to be careful because i have launched formal complaints, and like a lot of things, medicine is a business. and i believe that when a business has blown it, that they get a chance to at least apologize and redeem themselves.  and then if things don't go well it's okay to publicly say, this specific place really messed up with this.  so i'm giving them the chance to make things right.  this does not mean we have to use this business again (i.e. these doctors).

that being said, we are home.  mostly by my choice.  after a very long convo with another neuro doctor today, i asked that they unhook her from the e.e.g. and send us home with diastat ( a med used to stop seizures that aren't stopping on their own).  there was a hesitation with, 'that medicine isn't recommended for children under two' to which i kindly replied, 'neither is the keppra she was on or the topamax that you just prescribed her because the keppra doesn't work.'  we got the med.  there's a lot more to this conversation, but hashing it all out on here would just make me flash white with rage again.  and i'm attempting to drink tea and calm down.
i know i've mentioned this before, but it's not the hospital stays that wares me out. it's not the appointments.  it's the fight.  i'm so emotionally done tonight.  and i am perplexed by the idea that one has to fight so hard for the recognition that their child is having seizures.
i also realize that my post last night was slightly incoherent.  lack of sleep.  white hot rage.  typing on a kindle.  the combination meant incoherency.  but what it all boils down to is that shilo has been having seizure for over six months now, and they have never been under control.  not even on meds.  and while i repeated this over and over again to the neurologist, people in the e.r., and even showed videos, nobody listened.  nobody listened until she had a cluster of seizures, exactly like i've been describing, and a doctor sees it, and then suddenly there is a recommendation to keep her on e.e.g. until it happens again so they can capture what her brain is doing.
i'm not going to go into the reason for the choices we have made to come home.  but that's what we did.  and tonight, we went as a family and enjoyed the local symphony orchestra on the local college campus.  they play in the quad every year, everyone picnics.  it's free, and it's a lot of fun.  i thought sitting on a blanket eating popcorn and strawberries from our garden was a better use of my night than sitting in a hospital room with an overly exhausted mama and little.

this is how i feel about home.

strawberries.  sunbonnet. symphony.

the girls.

all of us.

silly faces.

indignant.

first of all, I'm typing on my kindle. so be graceful with my mistakes. on november 19 we came to the e.r. with shilo for some weird spell she had. an mri, ct scan, and 1 hour eeg later we were told things were normal and made a follow up with bigs neurologist. february we saw seizures. i videoed them, came to the e.r. and we were told her first mri showed focal spikes. they also were 'unable to do an eeg through admitting her.' we returned home. march we see neuro and have a 24 hour eeg. we are told that she has seizures and we start keppra. i ask for a copy of the report and find out she has focal seizures. over the next two months littles seizures increase in number. multiple er trips. multiple pleas to switch meds. im offered to increase. after the last increase i insist on another eeg since most of her seizures are during sleep and we don't know about them this morning, they unhook my daughter. she can't hold her head up, a telltale sign she's been seizing. i get on the elevators and she has a cluster of seizures. we ride back up where they tell me that on the floor full of people hooked to an eeg to monitor for seizurrs, there is no neurologist available. they can't page one. so i have to go to the er. my daughter spends the next hour and a half seizing and vomiting in clusters. she seized for every doctor who walked in. we got re admitted...but not before being told that they thought she was having infantile spasms. while they are common in down syndrome she was much older than what kids are when they start and should have outgrown them if thats what they were. she has maxed out her dose of keppra so apparently we are going to change meds. there is so much more that goes with this. things like the regression we see after seizures. but what it boils down to is my daughter has been having uncontrolled seizures for six months now. jason and i are beyond indignant at the lack of caring we have experienced over this. mama has let everyone know that this will be taken seriously. we could use prayers for all of us as we embark on another hospital stay. this one was avoidable and we want some apologies.

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.

seizing the day. and night.

this past friday night i found myself where all the fun happens on friday nights.  the emergency room.  shilo had been having seizures and vomiting.  i called the neurology department at the children's hospital, and of course got a random triage nurse as a return call.  just want to know if i can go ahead and give her an extra dose of keppra.  that's what they've told me to do the other two times.  she says, 'take her to the e.r.'  the inconsistency in all of these calls is my favorite.
i decide not to drive the 1-1/2 to the children's hospital, and go local knowing we will likely be transferred.  what is nothing short of a miracle (i know this sounds exaggerated, but seriously, it was miraculous), we had the best emergency room experience we have ever had.  i have only taken shilo here one other time.  she had a virus and i was worried her oxygen saturations were dropping.  i sat in the waiting room for two hours.  and then once the doctor took care of everything, and it was just a virus, she looked at me and said,
'i'm pretty sure it's a virus.  i can write you a script for antibiotics.'
'no thanks.  we prefer to only use them if there is a need.'
'i've given them for less.  it doesn't bother me.'
'we're good.'

and i never wanted to go back and be offered token prescriptions for my child.  i felt as if she might be the type of doctor to offer pain meds to adults.  just because.  so i was hesitant to go back.  but if i drove to the other hospital, it was guaranteed shilo would sleep on the way there, and would wake up fine.  it would be a huge waste of my time, our gas, and they would look her over, and do nothing.
the doctor who took care of us was awesome.  apparently seizing and vomiting get you an immediate back to a room here.  the doctor did labs.  and talked to me about some options.  and looked at her history, and asked me great questions.  he decided after talking to me, looking at her history, and calling the children's hospital (they are all technically in the same network-the whole state is owned by this network for the most part) to increase her dose of keppra.  she had grown quite a bit since it was started.  i can be okay with that.
the almost week since then shilo has been sleepy. a lot.  yesterday she took three naps.  and i don't know if this is due to her increase in meds (although when she started they didn't make her sleepy) or if she's having seizures at night that we don't know about.  most of the seizure activity on the eeg was at night time.
so last night, as we are ready to head to wednesday night church service, shilo has about three seizures that i can notice.  and then she vomits.  we go.  come home.  she seems fine.  put her to bed.  she gets up, and is exhausted this morning.
i call neurology.  i get a call back.  our doctor is out for the week (which makes sense because children only get sick when their actual doctor is unavailable).  the nurse asks me a few questions.  my favorite one was, 'do you skip doses of her medicine.'  i guess you shouldn't do that.  noted.  then says she'll hand her case off to someone and call back.

*side note* if you have ever watched scrubs (we have watched all of the seasons many times) there is an episode where dr. cox says a case can be treated by 'any trained monkey' and holds a banana out.  the doctor who walks by it and says, 'ooh,' grabs it.  he is then designated to treat this case.  i picture this going down as the way they decide who will figure things out for my daughter.

anyway, call back number two says to increase her night dose more.  i then kindly/forcefully make certain the nurse calls the pharmacy, lest i get to the end of our keppra and insurance refuses a refill because we went through it too fast.
they tell me to give her around 48 hours.  if my kid is still having seizures in 48 hours, we will be scheduling an eeg.  when you start meds, you aren't supposed to go from only seeing seizures at night time on an eeg (aside from the three times we had seen something during the day prior) to seeing them more frequently during the day.
sometimes doctors are more than willing to wait it out to see how things change.  what they don't know is that a wait it out approach means that my kid, who was sitting well two days ago, could barely sit today.  she's tired, and out of sorts.  i'm unwilling to let her have, heaven knows how many, seizures at night time that we don't even know about.  seizures aren't innocuous.  and i can't imagine anyone being this nonchalant if it was their child.

easter.

i was pretty excited for sunday.  for the first time, in six months, we were going to church as a family.  jason goes every week, but the girls and i have been sitting it out because of my huge fear of germs due to the potential for a virus to make our little very sick.  again.
we had shilo's lunch blended and ready.  i had packed abigail's gluten and nut safe lunch the night before.  i had awesome dresses ready for the girls...shilo was going to get to wear the one that abigail wore for her first easter.  last year's easter was a little less than celebratory.  abigail looked cute in her dress, and shilo looked cute in her new hairbow and baby legs.  but, the whole breathing through a tube in her throat while in the picu, put a damper on the day.

easter 2012

you have likely figure out at this point, that things didn't go as we had hoped.  papa and abigail got to go to church.  mama and shilo got to go to the emergency room.  shilo woke up unable to hold her head up.  we were a little surprised since this is what she does when she has had a seizure at some point in the night that was fairly big.  she had been on her meds for a week and a half at this point.  so we continue with the morning, and figured she would nap it off like she has in the past.  she had small seizures all during breakfast. and then after breakfast, she would seize a few times, and then puke everywhere.  i called neuro who said to give her an extra dose of meds (since she had likely puked the first one up).  she promptly seized and puked that one too.  so we went to the hospital.  she's fine now.  she was fine that afternoon.

we did, however, manage, to get some pictures of the girls in their dresses before shilo puked on hers. they didn't turn out great.

i feel like this could land on awkward family photos.

but next year, we WILL be getting some great pictures.  we WILL all be smiling, and happy.  and we WILL all be well. little agrees.

i'm fine.  why were you so worried?

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.

tired friday.

her beauty.  those eyelashes.

her silliness.

larry boy getting fed through his g-tube.

doing her 24 hours.

i am not a fan of this stuff on my head.

look at all these cords i have to play with.

'what are you doing lady?'

'you're welcome, mama, for making sure you didn't forget i was here all. night. long.'

thankfully, papa let me go back to bed for a bit when i got home, and gave her a bath to get the rest of that junk out of her hair.  and now, we wait.

best. papa. ever.

i'm pretty sure i married one of the most amazing men alive.  at very least, the best papa ever.  abigail will grow up with memories of her papa on the floor playing with her little characters, dollhouse dolls, and little people items...even if it is the cause of her large amount of potty and body function jokes.

and i won't go into all of everything until we know more, but we have a definitive that shilo is having seizures, and an upcoming 24 hour video eeg.  we also have an upcoming mri for big (they both saw the neurologist today).  i'm glad for all these test, we were starting to get bored with our lack of appointments and such. ;)