ebenezer.

my girls have a flare for the dramatic.  some kids break bones or get stitches, mine eat glass, and go into seizures after bumping her head.  it was a crazy chain of events that ended with shilo scaring me more than i have ever been scared.
the brief of it is that shilo fell, hit her head, and went into seizures.  we made a trip to the e.r., and all ended well.  scans were clear.  she did need the emergency med, diastat, used to stop seizures, but it worked so we'll call it a win.
i, on the other hand was left with my mind circling the same question over and over again.  'will hitting her head always trigger seizures?'  she isn't mobile in a way where she injures herself very often, right now.  and, i know that when she becomes that type of mobile, head injuries will abound.

so this afternoon, i was reading in first samuel.  in the seventh chapter, samuel takes a stone and sets it up, naming a 'Ebenezer,' which means 'stone of help,' because, 'thus far the Lord has helped me.'  i love the simplicity of it.  it doesn't feel like this profound faithful statement causing me to put samuel up on a pedestal as someone who is way better at this whole loving God thing than i am.  it was just simply that up until this point in his life, he could see that God had helped him.
and i sat and reflected. i remembered the incredible in pouring of donations so abigail could have a tumor removed.  from friends.  from strangers.  the home that was opened to us while we spent those ten days in chicago.  and the grace of the tumor not being malignant.
i remembered the friends who took abigail when shilo was born, the house that was extended to us in kentucky while we waited on the icpc paperwork so i could leave the state with shilo.
the long hospital stay where friends very willingly watched abigail, came to visit, made decorations for shilo, mowed our yard, fixed our mailbox after it was hit by a snow plow, and loved us more than we could ever know.
and in the past almost two years, since we've been home, i thought of all the times someone has showed up with a mcdonald's coke (my very unhealthy vice) when i've admitted to having a bad day.  i've thought of the kind messages, the friends who have stepped up last minute to help during smaller hospital stays, and the outpouring of love we receive quite often.
and i narrowed it down to today.  the gift of both children sleeping in.  the kind note from my husband, reminding me that i am a great mama, and that the guilt i felt over shilo falling was not necessary.  the drink on my porch to start my day off right, and remind me that i'm loved.  and the people who have called or sent messages to tell us they were praying, thinking of us, and loved us.
i reflected on the fact that for us, often times, the outpouring of God's love comes through people.
right after i read about samuel raising his Ebenezer, the neurologist office called, and confirmed my fear. some kids with epilepsy, go into seizures when they hit their heads.  this could be something we see again and again.
but, all i could think was, 'thus far the Lord has helped me.'

let them eat glass.

while we have spent quite a bit of time in the e.r., most of it has revolved around things like seizures, and tumors tripling in size overnight, asthma attacks, and non-stop vomiting.  i can't actually think of a time when we went for a typical kid situation.  and this morning might sort of count as that, but i'm pretty sure not many parents go for this....

abigail woke up a little earlier than she is allowed to get up.  i let her and her sister (who was also already awake) hang out in her room for about the last fifteen minutes before those magic numbers on the clock allowed her the freedom to leave her room.  she came in at the end of the fifteen minutes and told me she had broken one of the light bulbs in her strand of christmas lights.  we went downstairs and i planned to sweep it up after breakfast.
and then, during breakfast she nonchalantly says, 'i swallowed some of the light bulb.'
(i responded by laughing in dumbfoundedness and exasperation.) 'you ate the glass?'
'no.  i was chewing on the light bulb and it broke, and i swallowed some of it.'

this was accompanied by a phone call to our doctor and my husband.  jason felt similar to me, but was more on the angry side than seeing some comedy in it.  when i hung up she asked what papa had said.

'he's pretty frustrated that you ate that light bulb.'
'why?  there's tons more of them.  i only ate one.'

right.  so apparently she didn't eat all of the light bulbs, she left plenty of them up there to enjoy, so really there is no reason to be upset.  one e.r. trip, complete with x-rays, later, and we're pretty sure she'll be just fine.  you know, aside from her affinity of eating glass.

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.