Tuesday, May 28, 2013


it's been multiple weeks since i've written anything.  there is a lot going on here.  seizures from little.  scary e.r. trip with big. nephew graduated.  fishing. swimming. trying to maintain some sort of organization in my house.  spring cleaning/purging. therapies. life here can get a little full sometimes.
and we're headed into adding speech therapy for big.  a 48 hour video eeg for little.  pulmonalogist appointment for both.  booth hearing test for little. dentist appointment for both. and cardiology with ekg and echo for little.
jason has also been working a lot.  weekends.  evenings.  going in early.  he's just been gone a lot.  so, in essence, it's the perfect recipe for me to get overwhelmed.  add to that that my four year old, for whatever reason, has spent the last three weeks testing boundaries, and you have a mama who is trying to get through every day with some amount of patience left.
so instead of spending a whole post breaking this all down, i'll leave you with some pictures of our lives over the last few weeks.  and when i've got a better handle on life here, or at very least, when we have had the opportunity to spend a few days at the splash park enjoying life, i'll write something awesome.

put put.  she cheated a lot, and hit one legitimate hole in one.

standing in therapy.

people slow down and stare at her when she plays outside.  the bonnet may have something to do with it.

playing with the neighbor boy.  everyday they drive their cars together.

her wizard of oz outfit for ballet.

she has learned to tie, and was practicing on her papa's shoes.  she also decided to show me a ballet move.

shilo clapping with her cousin.

fishing with her spiderman pole.

crazy bedhead.  and that face she made right as i took the picture.  silly girl.

passed out after swimming.

car ride home after a weekend with cousins.

both girls slept for a little bit.

Friday, May 10, 2013

the big.

a lot of my post lately have been about shilo.  she's in a stage of life where things are happening quickly, she's changing, and meeting new milestones.  she's also has a lot more going on medically right now than abigail does.  so to balance it, this post is dedicated to my big, and all her fabulousness.

we'll start with a few of my favorite recent anecdotes from her:

abigail holding two pieces of spinach:
'hey spinach.
hey what?
you have dip on your head.'
(talking about the civil war-and the pictures of abraham lincoln at connor prarie).
'do you know what a slave is?'
'a slave is a person that someone else tries to own. they make them do things, whether they want to or not. and if they don't do it, they are mean to them.'
'you mean like when you tell me what to do?'

'that morning laura woke up. it was hot outside. it was cold outside. laura went outside and it was warm.'
(abigail 'reading on the banks of plum creek to herself)
'chickens don't have wings.'
'they do.'
'no they don't. i saw it on the computer.'
'i'm getting some special drinks for my retreat on friday. i'm going to spend the night with some of my friends from church.'
'why you going on a retreat?'
'sometimes mama's need to take a break. it will help me be a better mama.'
'you already take a break. you stay home everyday.'

'mama can you do this for me?'
'do what?'
'will you do this?'
'i'm not sure what you are wanting me to do.'
'me neither. (skips away).'
at 10:30 i hear a loud bang from the girl's bedroom. i go up to check, thinking abigail had fallen out of bed. 
'abigail, why are you still awake? and what was the bang?'
'that was me climbing back in bed. i was looking out the window. i was trying to see the moon so i could know if it was big or little. it's going around the earth right now.'
stranger to shilo: 'hi (unintelligible baby talk).'
abigail: 'she can't hear you. she's deaf.'
'mama, could you move that knife off of the table, so i don't just climb right up, and play with it and cut my finger off?'
...or you could just choose not to touch it....
'pigs are made our of bacon.' 

and i'll share a few of our favorite captured moments of abigail's.

showing off some moves.

puddle jumping.

after an evening storm.

she brought me flowers.  the one by itself is my favorite.

trying rhubarb from our garden.

we went to conner prarie.  she is obsessed with her subonnet like ingalls girls wore.

a spoonful of chocolate.  a silly face.

we swapped vest...and made our sassy face.
have i ever mentioned how jealous i am of this hair?

that's life with our big.  she makes us laugh a lot.  she is full of energy and loves life.  

Thursday, May 9, 2013

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.

Wednesday, May 8, 2013


at a few days shy of eighteen months, shilo can sit alone.  the effort it took to force her convince her to sit makes me want to throw a little party.  i'll save that for walking though.
perhaps you are trying to navigate the same thing, and are wondering what finally convinced her to sit.  this parenting the most stubborn toddler a child with special needs in not for the faint of heart.
one night, i sat shilo on those very letter tiles she's sitting on in this photo.  they are foamy/rubber.  not hard.  not super soft.  but soft enough.  i sat her up, and didn't catch her when she decided to fall back.  it was a tough love moment.  jason was certain it was the worst thing he'd ever witnessed.  but, the next day is when she showed off her mad sitting skills for her therapist.  and she has continued to get better and better since then.  she still gets mad about it sometimes.

and we giggle a little bit at the level of drama involved.  and i remind her over and over again that she is more than capable of leaning over and rolling out of the position.  she eventually remembers and does it.  it may sound a little unorthodox.  this willful little, has to be outwilled though.  and if we rush in to rescue her all the time, it will increase the length of time it takes her to do each new skill.  i think God knew that shilo needed a tough mama who knew when to push, and when to scoop her up and snuggle her.  and He knew that shilo would push that whole, 'i need saved look' to the extreme.

i see you are all done sitting shilo.  feel free to sit yourself back up and hold up your arms to ask mama to pick you up.  this, however.  this, will get you a camera in your face.  because this mama doesn't respond to drama.  ask your big sister.  drama gets you sent to your room until you pull yourself together. and it gets you left in the middle of the kitchen floor until you sit yourself up and use your words.  we love you.  but our standards will not be lowered.

in all seriousness, we are very proud of our little.  abigail even signs to her, 'good sitting' over and over again.  our days are shifting towards as much time sitting as there is laying.  and, i have become slightly scared of what our next milestone is.  probably time to start thinking about baby-proofing.  we never had to do this for our big.  all it took was a 'don't touch that' and she was compliant most of the time.  i don't think that will be the case-between shilo's strong will and abigail often singing, 'go shilo, go' when she is being naughty.  *sigh*  for now, i will enjoy her sitting.

Tuesday, May 7, 2013

a pursuing papa.

shilo has a preference.  some may refer to it as a slight obsession.  she only wants her mama.  i can be literal feet away from her while papa is holding her, and there will likely be tears, and an attempt to leap from his arms towards me.

attempting to reach mama.

when she finally is back in my arms she gives me a hug, then sits up and smiles.  repeat around ten times.  two minutes. two hours.  doesn't matter.  she missed her mama.

shilo's elated smile when returned to mama.

this would make sense if jason was a horrible papa.  but, he isn't.  he loves snuggling.  and she hasn't always felt like this.  it was an all of a sudden one day thing, where she decided that she really only wanted mama.  when he kisses her goodnight, she turns away.  if he tries to put her down for bed, she cries before he ever makes it up the steps.  she. just. wants. mama.

as this scene was playing out for the billionth time the other day, i had a moment where i was reminded of another Papa like this.  no matter how much shilo cries, turns away, and searches out someone else to fulfill her needs, her papa will continue to hold her while she cries, and meet those needs.  she doesn't understand this yet, but with time, she will.
no matter how much i mess up, fall short, and try to pursue something other than my Papa, He will continue to hold me and love me.  we have been all over the place in the last year, God and i.  i have been super angry.  baffled.  bitter.  unbelieving.  disheartened.  through it all, He continued to be right there.  He held me even though i cried about it.  He listened to me even though He wasn't the one i really wanted to talk to.  He stayed right there pursuing me.
i'm pretty thankful for the amazing earthly example that i get to see of my husband loving my daughters, the way God loves us.

Monday, May 6, 2013


so a while back i wrote about how our family is working on learning sign.  we are at a point where we can understand a lot.  signing it back-a little harder.  this is common (i'm told) in the steps of learning a foreign language.
every monday we either have our deaf role model at our house, or we go to class with her.  on the mondays she is here we ask about signs we want to learn and stumble through carry on a back and forth conversation in sign.  on the class mondays, jason and i go and learn about deaf culture, and things like, yes and no questions are asked with eye brows lowered.  wh questions with eye brows raised.  we learn lots of other culture stuff as well, and practice conversation as well as answering questions.
these intense signing times often leave my head sort of hurting.  not like a headache, so much, but more of a brain trying to take in more than it can handle sort of thing.  but we're getting there.  we can communicate across the room in sign.  sometimes i can pick up words that are finger spelled at faster than lightning speed.  i do believe some day i might be fluent in asl.
every now and then, i think a word in sign.  and sometimes we declare quiet times at our house and we have to use sign (abigail doesn't always adhere-but she's getting pretty good as well).
but my most exciting morning, was the morning i woke up and remembered having dreamt in sign.  i had a whole dream in sign language.  it doesn't mean i'm there.  it does mean my brain is moving in that direction.

Saturday, May 4, 2013

who she is.

the other day my big came to me to show me her hands.
'mama, look.  i have lines on my hands.'
'i know.  see, mama does too.  how many lines do you see?'
'one. two. three.  i have three lines on my hands.'
'so does mama.  let me show you something about shilo though.  see her hand.  she only has one line.  most people with down syndrome only have one line on their hand.'

big is mostly unaware of shilo's differences. she knows she has down syndrome.  she is completely unaware of what that means, and how that affects her sister. i like this about her.  it helps even out nights like tonight where my heart swings between aching and anger.
i know that we live in a world that has a hard time knowing what to do with people like my little.  they look at her, and immediately her labels jump out to them.  and i get it.  when big was first diagnosed, i noticed every cafe au lait spot, every new armpit freckle, everything.  that's all i could see.  and the first few weeks with little, her down syndrome really stood out to me.  i don't necessarily expect strangers to be able to move beyond those labels easily.
there are other people though.  people who see her somewhat regularly.  people who read my blog, or are friends on facebook, or even who know me in real life.  and somehow they seem stuck on labels.  stuck on the delays.  stuck on her being deaf.
we are aware of these things.  but, that's not what we see.  that's not what we experience.  and that's not our daughter.
our daughter is super silly and loves to make funny faces.  she has a very animated angry yell when you stop doing something she wants you to do again.  she loves to play peek-a-boo.  she likes to hug her baby...and then shake her and throw her.  she's a mama's girl.  her beautiful blue eyes could get her just about anything she wanted from us.  thankfully, she hasn't yet figured this out.  she loves whipped cream.  and suckers.  she thinks her sister is the funniest.  she has a beautiful smile, and somehow she does it with her whole body.  she loves to snuggle in on your shoulder when she's tired, or just wanting a hug.  she gives awesome sloberry kisses.  sometimes they have some teeth to them. she is the most stubborn human i have ever interacted with.  her reaching with her arms to get picked up works every time.  she loves to wait until we are out of the room to get into things she isn't supposed to.  she loves snuggling her blanket at bedtime.

it's not hard for us to sort of push those other things aside as a result.  we forget them even.  when we look at our little, we see only our daughter.  because, that's who she is.