heaven.

some of these things may come across different than how i mean, but i think it's important for people to hear this.

there are lots of things about Down syndrome that have changed over the last thirty plus years.  we no longer institutionalize people with Ds.  matter of fact, lots of them are being mainstreamed in school, and some even go on to college.  there are people with Ds getting married.  the beliefs about Ds are slowly shifting, and people are learning that it is not the horrible, life sentence that people once viewed it as.
when we set out to adopt a kiddo with Ds, i was prepared to push hard, and show the world that our child could fit in with everyone else.  we would push hard in and out of therapies.  we would have the same expectations for obedience that we do with big.  we would be a family that showed the world how great Ds is.
i have had to be kicked in the gut a few times to realize these were all my thoughts and dreams.  i have had to come to accept that shilo may live with us the rest of her (or our) life.  she may have significant delays physically and be on the more extreme end of cognitive delays. please note that nowhere in that paragraph do i say that these things are true of shilo, just that i had to accept that they were possibilities.
we have no idea what the future holds for our little (or our big for that matter).  but, i have come to realize something.  this story, it's not about me.  i can kick and scream, whine and fuss (and i have), that this was not what i envisioned when i tried to be obedient to God's call.  matter of fact, i think i believed i deserved a child with Down syndrome and no other complications, to some degree; like adopting a kiddo with Ds meant that i got one of the 'easy' cases.
but shilo isn't one of the 'easy' cases.  matter of fact, she is on the more extreme end medically at this point in her life.  but, with deepest honesty, i can't imagine a more perfect little for our family.  we are all head over heals in love with this little girl.  she has revealed to me ugly parts of my heart i didn't know existed.  she has shown me  that while her 'special needs' may be glaringly obvious to outsiders, mine are there too.  i just have the opportunity to hide mine.
 for a long time, i envisioned heaven as a place where there would be no more Down syndrome.  i have to apologize for that.  i hope in heaven there is no more 'normal.'  no more sorrow over things like extra chromosomes, and no more woe is me.  because the idea of spending eternity with my little, and her not having an extra chromosome, well, that looks more like hell to me.
don't get me wrong.  i'd take away the heart surgery, the hypothyroidism, and the other medical junk faster than you can imagine.  but the Down syndrome, and even the cognitive delays, i'll leave those intact.  certainly in the garden of eden, where everything was perfect, God envisioned a beautiful little girl with almond shaped eyes, and short chubby hands.  i can't for one second believe that when He made the perfect place for mankind, that He didn't already have a plan for a person with an extra 21st chromosome.  it was the fall that lead to the medical things that can come along with it.
and perhaps, when He created the same garden, He also saw a dark skinned girl with chocolate chips everywhere, and one loan freckle in her right armpit.  and it was good.  until that fruit was eaten.  and then it became the marker for scarier things that could come.  but, when all things are made right, i hope that my big still has her chocolate chips.  and her freckles.  she wouldn't be my big without them. 

when most of us say that we long for things to be made right one day, we envision heaven being filled with people like ourselves.   i have begun to pray that heaven will be full of the beautiful differences, that we have decided are mutations.  i pray for almond shaped eyes, and low set ears.  i pray for brushfield spots and lisch nodules.  perhaps when God says He will make all things new, He is talking about the minds of those of us who believe that we are what 'being made new' will look like.

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.