Just, a little....

It's a phenomenon that most people probably don't fully understand.  But, I've heard it from lots of other parents.  I've heard it from spouses.  I've heard it from people themselves.  So, I know that lots of people experience it.

Doctor crushes. 

Now, let me start by saying, a doctor crush is in no way shape or form of a sexual nature.  If you are truly attracted to a doctor, that's not what I'm talking about here.  This is a whole different form of crushing. 

It can be a male or female.  Old. Young.  Attractive.  Or someone you find not so attractive.  But, whatever happened with that doctor led you to get fluttery feelings every time you see them, talk about them, or think about them. 

I have a few of them.  Doctors who have gone above and beyond. The fellow who literally made the life saving call to check Shilo's thyroid numbers when she got very sick at a few weeks old.  The developmental pediatrician who looked into issues with Abigail when she was really young and figured multiple things out. The doctor who delivered Asher.  The list goes on and on for me. 
And, a friend who's husband broke his neck felt this way about one of the doctors who cared for him.  A friend who had a mass removed from her abdomen, talks about feeling this way.  A parent who had a doctor step in and step up to prevent unnecessary interventions.  A parent who stepped up and stepped in to make certain a child got a surgery that some doctors thought wasn't needed.

I find myself thinking about these doctors.  Looking forward to the next appointment with them.  Wanting to bring them gifts, and invite them over for dinner.  I replay our conversations, and can't help but smile when I think of how they treated me, and my children. 
For a while, I thought it was just me.  And, that it was a little weird.  Until I admitted it.  Then, time after time, in conversation, someone else would describe something similar. 

So here's a public declaration for those of you who didn't know this was a thing.  And, here's a thank you to the doctors who are so great, that a phrase needed to be developed to describe the feelings they invoke.  You make the world of navigating medical stuff a little more enjoyable. 

 

a one story house.

we're on a little journey here.  one where we spend a lot of time searching.  one that will hopefully end with finding.  but for now, we pick things up along the way.  one little thing here.  then another over there.  and sometimes they make lots of sense together.  and others it seems like maybe we'll end up going down lots of paths to find. 
and in this searching, Jason and I, we spend time taking notes.  and discussing those notes with doctors.  and therapist.  and each other.  and trying so hard to pull all the things together.
we knew at the beginning of these sorts of journeys, and onward, no matter how long, there is often a lot of energy focused on the fight.  fighting to make it over, across, through.  to just be heard. to figure out what's best, and do that.  to learn to live in a place of hope.  of faith.  no matter how big the piles of shit are that we just seem to always be stepping in.

today. today felt like we managed to move forward at sprint pace, but marathon distance.  our first victory of the day, a new house.  a new, one story house.  a house where I will no longer have to carry children up and down steps multiple times a day.  a house where little can crawl into her bedroom and play until her heart's content.  a house, where, in the future, tiny can do the same.  a house that will work so much better for our families needs right now. 

and then, an appointment.  I pulled up tiny's shirt and said, we have noticed his back looks weird.  i'm not going to point it out.  I just want you to look at it and see if you notice anything.  and she listened. really listened.  and looked.  and told me something I almost suspected, then pushed out of my head very quickly.
1 in 10,000.  that's the statistic for children who have congenital scoliosis.  tiny has congenital scoliosis.  we have no idea what this means down the road.  we will have some imaging done. we will see a specialist. we will do what needs to be done.  we will continue on searching for answers. 

but, somehow the fact that we got word that we got the one story house, one hour before a doctor said my ten month old has scoliosis seems like a beautiful mess.  maybe they aren't connected at all.  maybe it's purely coincidence.
then again, maybe i'll cling to my faith in a God who would make certain we had the exact right place to live, just in time to find out a little more about how important it will be for our family.
to continue to live in a place where the piles we step in often seem to grow in size and quantity on a daily basis, I have to cling to the second conclusion.  without it, this is all too much. it's too cruel.  but, when there is hope.  when there is faith.  then, can we move forward on this journey.  then, can we remember that the small things are tiny sparks of what lies ahead. of all things being new. of new bodies.  and no more brokenness.
but for now, for today, heaven showed up in a one story house.

drowning.

i'm swimming.

most days, against the current.  and the current is strong.  and it threatens to pull me back with it.


 

but, I keep fighting.  kicking.  going places.  then, a day comes along.  and it threatens to not just drag me backwards, but to pull me under.  and the water from above just keeps coming.  washing over me.  leaving me breathless.

there are days that start with the continuation of processing the neuro-psych evaluation we got back about our big.  the words the doctor spoke, both gently, and encouraging, still left us unsure of how to best move forward in schooling her.  and, it looks like home is the way to go.

and a little, who's IEP is still not yet done.  and we should get services in place in time for the school year to end, and nothing to have actually ever been implemented.  all because we fought for what was best for our daughter.  and today she's sick.  and having seizures.  and incessantly asking to watch signing time. and starting to walk up the steps by herself.  and climbing onto the couch to unfold the laundry as I fold it.

and a tiny who only turns his head to the left.  so much so that he can't turn his head to the right, and the back of his head is getting a flat spot.  so we schedule an appointment for p.t.  and a follow up renal ultrasound to see if he outgrew his hydronephrosis.  and the tucking away of the anxieties about him not yet meeting any milestones, and regularly crossing his eyes.  and longing.  wanting something to feel easy. 

as the waters rush over, I hear the voices from above.  the ones that asked me while I was pregnant what I was going to do with a healthy kid, a typical kid, a normal kid, this time.  and wanting to grab them and pull them down with me.  to let them see that nothing feels normal from down here.  that once you have been here, you lay in bed at night evaluating every thing your child is, or isn't doing.

when you have been down here, you end up needing a counselor to walk you through your anxieties.  they are big, and they feel real, even when everyone else around you is telling you that everything is fine.  it doesn't feel fine. it feels hard.  and overwhelming.  and, a little bit like things aren't allowed to be easy.

from the outside,  it all appears normal though.  most of the people on the sideline just see someone swimming.  and some of them cheer loudly.  the cheering is often what keeps me from completely being swept away.  it lets me know I can do another lap.  every now and then, I even have someone who tags in for me for a while.  who takes a few laps, and lets me sit on the side, huddled under a towel, catching my breath.

tonight, i'm tired of smiling through things.  i'm tired of specialist, and therapies, and meetings, and evaluations.  i'm tired of hospital stays, and learning new diagnoses, and the fears that have taken up residence in my head.  so i'm going to choose to share those things.  i'm going to choose to be real. because today, tonight, it feels like i'm drowning.
tomorrow morning, i'll get up, crank up some music, and sing louder than the fears in my head. 

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.

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.

heart.

 i changed her diaper, and blew raspberries on her belly, legs, neck, and cheek.  she giggled, and tried to play with my hair.  i stood up and just looked at her a minute.  remembering.  one year.  it's hard to believe.  the nine hours of sitting.  the nurse who came by every hour to update us.  the surgeon who did his best to warn us that he didn't think she would do well.
walking into the huge room we were given because the doctors all believed she would need to be on bypass still. she wasn't.  rejoicing when she began pacing on her own.  rejoicing when they closed her sternum the next day.  tears of joy when that damn tube finally came out of her throat.  seeing her whole round face for the first time in nine weeks.
it's hard to believe it has been a whole year.  it's hard to believe it has only been a year.  it feels like some sort of alternate universe we lived in.  one i have tried hard to forget.  but there's this scar.  i see it everyday.  the ugly and beautiful mingle together.  all i can find is thankfulness that my little is here.
yesterday, as a sat at the funeral sofi,  i was reminded of where we had been.  i remembered trying to prepare my heart to say goodbye.  i remembered middle of the night text to my husband, 'i don't think she's going to make it.  her sats are five, they are bagging her, and she isn't coming out of it.'  and i remembered the day that so many other parents of little's who need ohs fear.
but we weren't afraid. it was our only chance of ever having our little back.

happy heart day, sweet little.

we experienced a miracle.

a year ago right now, i lived in what felt like to me, some level of hell.  day in and day out was spent in the corner of a dark picu room.  i would hear, 'heart surgery' and then the next day all hopes of that happening would be shot because someone changed a medicine and shilo went down hill.  

i felt, deeply, that God had given us this little girl, and then quickly ran fleeing the opposite direction.  it felt like some sort of ugly and cruel trick.  why, why, why, would He call us to adopt a child, and then have us end up living like this.  there was no good explanation.  and so i sat.  and i became bitter.
when we got home, i would love to say it was better.  but i came home to a child who was constantly hooked to a feeding pump, an oxygen tube, and was on so much medicine we had to get up multiple times every night to give it to her.  she was also being weaned off of narcotics, and had days where she cried a high pitched horrid cry.  all day.  the little baby who had smiled for the first time just days before being hospitalized  just laid there.  she didn't smile.  she seemed completely uncaring that we were even there.
home was more work than ever before.  i was a hot mess.  i yelled at abigail a lot.  i felt more alone than i did in that hospital.  jason and i just made i through the days, and at the end of the night, we crashed so we could do it again the next day.
and the nights.  they were some new level of hell.  i didn't sleep well.  i would wake up confused, not knowing where i was, how old i was, and then it would all hit me, and i felt this ugly guilt from what had happened over the last months of our lives.  i felt like i had ruined us.  and satan was quick to confirm that thought.
slowly, slowly, slowly, things improved.  she came off of meds a little at a time.  she didn't need oxygen all the time.  she started smiling again.  she didn't have to be hooked to her feed pump so much.  we didn't have to get up at night time.  i yelled less.  i got more sleep.  life began to feel better.
i won't pretend that i now have happy thoughts and feelings about that time in our lives.  it was hard.  i hated it.  i still am working through moments of bitter, and confusion about why that needed to be.  but the last few months have shown me something i would have adamantly denied before hand.  we experienced a miracle.  the fact that shilo is here, with us now, smiling, loving, and full of life, is a miracle.
not so long ago i got a phone call from my mom.  my uncle had, had a heart attack.  he was in the hospital awaiting triple bypass surgery.  while his situation was certainly different than shilo's, i couldn't help but notice the similarities as the days went on.  he aspirated, ended up with an infection, was intubated, and passed away.  shilo had an infection, aspirated while being intubated, worsening the infection, went into heart failure, and she's here.
as i sat at his funeral, i felt, for the first time, like maybe, just maybe, God had heard my prayers all those days in the hospital.  He definately didn't give what i asked for at the time-a quick trip, back home, a baby who could still eat-but she's here.  and our lives would be less without her.
i recently met another mom of a child with Ds while at an outpatient appointment.  her daughter had an av canal-the heart surgery shilo had.  after surgery, she has had to be re-intubated multiple times.  they couldn't figure out what was going on.  finally.  finally, they found another hole in her heart, that needed patched.  she had that surgery monday, and thus far is doing okay.  she still has a road ahead of her.
shilo, when she went in for her av canal, had an extra asd that nobody knew about.  it hadn't been visible on her echos.  it hadn't even been noticed during her first heart surgery.  but the surgeon noticed it when fixing her av canal, and repaired it as well.  i didn't know, until recently, that sometimes, those extra holes aren't caught, even during surgery.  sometimes, kids continue to struggle, and nobody can figure out why.  sometimes, it's not caught in time.  and i'm blown away that my little, with her fixed heart, is currently playing with her sister in their room.
it may take me the rest of my life to get all the small bites of what God was doing during those long months in the hospital.  but, what i can clearly say now, one year later, is that we experienced a miracle.  for that, we are thankful.

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.

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. ;)

fighting.

parents of littles with special needs always hear, 'i don't know how you do it?!'  people seem to have this grim picture of how hard day to day life is.  and while my day to day is definitely different than it otherwise would be if my kids were typical, i can't say that i generally find that the hardest part.  here's a little story to demonstrate (this is 100% true).
jason and i decided that with shilo being deaf, and having cognitive delays, that we wanted to have signs put up near our home that said, 'deaf child area.'  i talked to our parent adviser from the deaf school to see how one goes about doing this.  she gave me the information on who i might contact.
i call the local board of works and talk to a woman.  i'm not going to rehash the whole thing, but she told me she didn't think they did things like that, and that she would pass my name and number on to her supervisor to find out for sure.  a week later, i still hadn't heard anything.  so i called again.  i talked to a different woman, who was equally as confused. she started by responding with, 'there are no signs like that,' which i patiently explained that there were, and matter of fact there is one two blocks from my house. the she told me, 'there's really no way to enforce those signs.'  i have no idea what that even meant.  it's a warning sign, to alert drivers that i have a child who can't hear them coming, if she darts into the road.  there's nothing to enforce.  and i end the conversation with the same idea.  i have the wrong department, but she'll let me know who i should contact.  so i e-mailed the supervisor.  he calls me back the next morning.  i do, indeed, have the right department.  and what he will need from me is a note from our doctor saying she is deaf (because i guess there are lots of fraudulent request for signs like this?), and for us to come to the next meeting for the board of works.  i comply to both of these things (actually our whole family went to the meeting), and then i have to stand up while he 'presents' our desire.  he is adamant that the sign not say 'deaf child at play' because that gives her permission to play in the street, but would be okay with voting on a 'deaf child' or 'deaf child area' sign.  it passed.
as this played out, and as i write this out, all i can think is, 'why do i have to fight so hard to get things that seem simple?'  i feel like a simple phone call explaining our situation, and i would have even happily complied with the note from our doctor, should have been enough to get things moving.  we live within city limits.  we pay property taxes. everything around is either rentals, empty, or empty lots. so no neighbors that would be upset.  i  just feel like this isn't something i should have had to fight for, for my daughter.
when your kids has special needs, you have to fight for a lot of stuff you shouldn't have to fight for.  specialist appointments.  hearing aids.  appropriate therapies.
and this is where i bring this around to now.  i wrote a while ago about an incident shilo had in november.  quick rundown, she woke up and was unable to hold her head up for a while, glassy eyes, lethargic.  twenty four hour hospital stay, mri, one hour eeg that showed she was at an increased risk for seizures, but didn't have any during.  follow up with neurology in march (very soon).  almost four weeks ago she had a second incident like this.  i videoed it because i knew it would not be happening by the time we got to the hospital.  i sent it to the neurologist.  i called.  every day.  for a week.  he couldn't get the video to open.  sounded like seizure activity.  i said multiple times, 'we don't care so much about the video.  we want a twenty four hour eeg.'  i heard nothing.  no call to schedule.  (i should mention that the doctor we're working with for this is NOT going to be her neurologist.  we have to go through him because he saw her inpatient.  however after her first neurology appointment, she'll officially have the same neurologist as abigail.  and we like him.)
shilo had her 15 month well check.  i asked our family doctor if we could somehow bypass neurology to get an eeg.  the test is innocuous.  it's just a bunch of probes hooked to her head, and a video camera pointed at her at all times.  not invasive.  not painful.  maybe annoying, but nothing big.  she agreed, and they worked behind the scenes.  so i got a phone call offering me a one hour, sleep deprived (bring your child in minus a nap) eeg for the day of shilo's neurology appointment.

     1.  we've already done a one hour eeg.
     2.  there is no way  that i can keep my deaf, rear facing, one year old awake on the 1-1/2 drive there.
     3.  shilo was worked in for her appointment because it's abigail's yearly nf clinic with neurology.
          i can't watch abgail and hold shilo for an eeg at the same time. not. happening.
so we said that doesn't work well, and is a waste of our time, and insurance's money.  thanks, but we want a twenty four hour one.  then this happened (pay close attention to 29 seconds, 1:16 and 1:32-also just to add to it, shilo doesn't usually have tongue protrusion, nor does she drool-both of which are happening here).

this happened off and on for around thirty minutes.  not bad enough to call an ambulance.  if i put her in the car and start driving, it will be done by the time i get to the children's hospital (or if i take her local, by the time they call me back to a room from the waiting room). i won't even share all the details of the ridiculous ten minute phone call with the neuro nurse while we were trying to figure out what to do.  i called a friend who is a doctor and just said, 'what would you do it if was your daughter?'
so we spent a couple hours in the e.r.  i'm very thankful we had the video so i wasn't just describing what was happening.  the most infuriating thing about all of this for me though, is that after her first eeg, i specifically asked the doctor who gave me results, 'did she have focal spikes?'  (these are an abnormal finding on an eeg that, while they aren't actual seizures, are pretty good indicators that they are happening).  she told me no, she just has some small finding that mean she's at an increased risk.
e.r. neurologist says to me, 'well we know she's at an increased risk because her last eeg had focal spikes and...'   wait.  what? she had multiple focal spikes on her one hour eeg.  i would have asked for a 24 hour eeg immediately if i had known that.  a doctor lied to me. about my kids test results. important ones.
we will be seeing neurology this week.  and we will be having a twenty four hour eeg.
but, here's the bottom line.  why did it take four months, large quantities of my time fighting, and me having to video my child having a seizure, for someone to listen.  do you want to know the hardest part about having a child with special needs?  it's not taking care of them.  it's fighting for every. last. thing. they. need.

february.

i stand in the kitchen watching the large snowflakes fall from the sky, and i think of the line from a nichole nordeman song, 'wrapped in blankets white, all creation, shivers underneath.'  i can hear my big giggling in the other room, and my little loudly proclaiming, 'dadadadada!'   and, even those happy noises make me feel guilty.  i don't even try to stop the tears.  they are around for a little while.

when i woke up i could feel the lies creeping in immediately.  the grew bigger and bigger, threatening to swallow me.  and i know over the next couple of weeks that i'm going to be fighting hard with myself to let go of all that i want to hold onto tightly, believing that if i just hold on tight enough, it really will change the past.  i can somehow go back and undo that one decision that left us living separately for months, and nearly took my little's life.
i text jason and ask him to pray for me.  and, as always he reminds me of all that is good about me.  but, the good doesn't erase that one moment in time.

and i know as that 'one year ago today' draws closer that the memories will keep flooding me.  and they will do their best to remind me of where i have failed as a parent.  i'm not sure how to undo those thoughts, and i most certainly can't undo the past.  i will, however, remind those thoughts that they are not welcome to take away my here and now because that's all i am able to do, is the here and now. and so we live.  we love.  and, we take lots of pictures, just in case our here and now ever becomes an ugly hospital room again. or something worse.

looking for a new doctor?

abigail has expressed the desire to be a doctor when she grows up.  she definately understand more than most four year olds about medical stuff.

listening to her back

and front

holding her hand

is something wrong doctor?  you look intense.

checking reflexes.

taking her temperature.

looking in her ear.

checking her mouth and teeth (yeah she's also a dentist).

checking her blood pressure.

checking her eyes.

and the other one.

giving a shot (notice shilo's amazing ab muscles that she refuses to use for sitting?)

rock star.

so while i try not to talk on the internet much about my children's elimination habits, that is going to be what this post is about (sort of).  if you are uncomfortable with the topic, feel free to sit this one out.  there are no hard feelings.  and just to make certain you are aware, i will NOT be (nor will i ever) posting pictures of my children's eliminations, nor of them in the process of eliminating.  fair enough.  here we go.

children with low muscle tone are more likely to be constipated.  low muscle tone happens throughout the body, including, take a guess, the g.i. tract.  therefore things moving through are slowed down.  when this happens more water is pulled out in the intestines, and causes stools to become larger, harder, and hard to pass.
lots of kids with low tone take some form of a stool softener.  miralax is the drug of choice for most of shilo's doctors.  but i fought long and hard against her taking anything.  there are a variety of reasons, and i won't go into all of them.  however, this fight also meant that i worked hard at doing natural things to make certain everything stayed regular.
most of what i do is through food.  high fiber (flax seed), coconut or olive oil, fish oil (although this is also for brain development), probiotic, and lots of p fruits in her blends that i make.  on top of that i do something a little less 'normal' and a little more on the 'out there' realm of thing.
if you have ever read anything about potty training, you may be familiar with the elimination communication method of training.  the basics of it are, that in early infancy you watch for small signs or cues that your child needs to use the potty, and you take them.  some people make a noise with it so that they can take them and when they make the noise they go.  there's lots of variances.
the other half of my explanation for what i'm about to tell you is that all over the world, people often squat to go to the bathroom.  studies have shown that people who squat to have bowel movements are less likely to be constipated, don't have the hemorrhoid issues experienced here, and have over all less bowel issues.  squatty potties have become a sort of rage here in the u.s. as a result.  you can buy tons of different things to make this your reality, a stool to put around your toilet, a different toilet, and so on.
so here's more of my crazy, out here on the web, for all to read.  on top of making certain shilo's diet is one that helps things along, we also hold her in the squatty potty position about fifteen minutes after each meal.  we have been doing this since november, i think.  as a result, she no longer poops in her diapers.  at all.  two to three times a day she goes on the toilet.  she also regularly pees when we take her.  we show her the sign when we take her as well, just so she knows what we are doing.  i don't know that it will or won't mean that she'll be potty trained any earlier than other kiddos with Down syndrome.  i do know that we will keep doing it if it prevents us from having to use any other medicines, and double bonus, change a poopy diaper.

so this big long explanation leads into this one excited thing i wanted to share.  today, during lunch, shilo was babbling in a sort of animated angry voice at me.  and then she did a sign.  and again.  and i signed back to her 'you need to go potty?'  and she got very excited.  i took her, and she pooped.  my not quite fifteen month old, with low muscle tone, and cognitive delays, told me she needed to poop today.  i'm constantly blown away by things that she does.  i think my little might just be showing me, like her big sister did, that she'll do what she wants, and not what doctors and books say about her.  i'm raising rock stars here.

welcome to my crazy, part deux.

if you remember, i wrote a little bit ago about switching shilo to a blenderized diet.  i let you all in, just a little bit, to my crazy with nutrition for my kids.  not all the way in, just a little.
and i would like to revisit that, now that we are a couple of weeks out.  first of all, i have NEVER been in love with an inanimate object before.  but, i have considered taking my blender out on a little date.  perhaps a little snuggling on the couch would be appropriate?  i'm not sure.  but seriously, this blendtec blender can pulverize just about anything, and i can push it into my daughter's belly.
but that's not really what i want to talk about.  i'm not the first parent to do a blenderized diet.  and i'm not the only one who can attest to what i'm about to write.  so while i'm aware that i sound like a complete nut, every last bit of it is true.
within a few days of switching from formula to blenderized foods, shilo rolled over for the first time from back to belly.  and then did it like a 100 more times.  she is sitting on her own for a few seconds at a time (and getting closer to doing it well all by herself).  when her therapist put her up on her hands and knees, she rocks back and forth, like children who are getting ready to crawl.  she is mouthing everything, like typical babies do.  she didn't do this before. she doesn't gag anymore.  at all.  i can put things in her mouth, and she doesn't gag.  most kids with low tone have issues with constipation.  nope.  not here anymore.  she just seems happier, more alert, and to be taking off with all of her skills.
and this thing deserves a paragraph all it's own.  my kid, doesn't. puke. anymore.  she went from puking anywhere from 2-20 times a day, to not having puked in....i don't know how long.  and when i say she puked all the time, i'm not talking like she spit up.  i'm talking projectile, multiple feet out from where she was, her whole stomach quaking and retching   and the biggest miracle of this, is that the meds we are pretty sure make her puke, have been increased.  still, no vomiting.  i'm not sure if any of you have cleaned up puke all the time before, but i tear up every time i think about it now.  i can also give her bigger volumes.  before we switched, 4 oz was about as much as she would tolerate during the day.  even then she still puked.  and they had to be run over so many minutes, causing us to spend at least a few hours every day sitting with shilo hooked to her tubing. her night time feeds could be bigger because she slept through them.  now i can do 5-6 oz. of food, a few ounces of water between meals, and push it in as fast as i can, and she's completely unphased.
the bigger things we know are coming, because she's not puking, she is more interested in putting things in her mouth, and letting me put things in her mouth.  she will suck on/chew on hard crackers i give her to play with during meals.  she will put the little fruit in a net (i'm sure there's a more technical name for these baby things) in her mouth and chew.  i think we aren't far off from her actually eating by mouth, because she no longer has negative associations from all the vomiting.
while it feels like common sense that feeding my kid real food as opposed to sugars and chemically enhanced milk proteins has made her feel better, i'm still in awe of how much it has changed our lives.  and the blender we have doesn't make it hard.  measure the stuff into it, push the soup button (sometimes twice) and i have a puree of awesome food for my kid, that is good for her.  the other night, she had soup with cannellini beans, kale, quinoa, carrots, and bluberries.  even my veggie and fruit loving big, likely would not have eaten that combination, at that age.
all right, thanks for sticking with me through my crazy excitement.  if you have a kid with a g-tube, and are interested in this, please, please, spend some time reading other people's experiences.  i have yet to hear anything negative about this. and very few doctors or even nutritionist are completely on board with this sort of thing, for whatever reason.  luckily shilo's dev. ped. is.  i am so excited to tell her what we are experiencing!  i feel like our lives are no longer dictated by a feeding pump, and puking.  the freedom is amazing.

for those who are interested in the nitty gritty, here's the breakdown of what we do:

on formula:  4 oz each at 8 a.m. noon, and 4p.m.  200 m.l. at 7 p.m. 200 m.l. at 10 p.m.  wait for the pump to beep so we could go to bed.  totaling around 506 calories a day.

on food:  breakfast, lunch, dinner at whatever times we are eating, and whatever we are eating (for the most part).  1-2 oz of water about 20-30 minutes before lunch, same before dinner.  i use milk as the liquid base for her meals, and then she gets 200 ml of milk at bedtime as well.  she also gets a slow flow of water all night long.  her fluid (without figuring in the fluid in the foods) equals around 18 ounces.  her food volume anywhere from 12-18 ounces.  and her calories are anywhere from 650-800 or more a day.  i have pretty much stopped counting calories, because every time i do, we are so far from where we were on formula.


*end of my crazy excitement*

welcome to my crazy.

all right. so i want to start off with a disclaimer, because in parenting, i experience a lot of guilt.  and the very last thing i want to do for anyone else, is heap guilt upon them.  so please, if you are reading this, do not be like, 'well obviously, i suck because i didn't do that.'  not the case.  this is what works for our family  *end of disclaimer*

when abigail was a baby i made all of her baby food.  all of it.  we were able to not ever buy one jar of baby food.  and i didn't buy any of the other things like puffs or toddler meals.  jason and i have both struggled to make good food choices, and we know that what children eat between birth and three, determines a lot of lifetime habits.  we wanted to try to give her the best start we were able to.  so she ate avocados  blended broccoli, beets, and so on and so forth.  whether it was because of that or not, i can't say for sure, but she loves foods that lots of other kids her age don't.  she likes beets, brussel sprouts, and is even known to ask for raw spinach.  i'm so grateful we were able to do this for her, and feel very proud that she got yummy healthy foods in the beginning.

when shilo got her g-tube, it didn't seem like an option.  i know that there is definitely an easy factor to heating water and mixing formula in.  but in reality, i am feeding my daughter chemically processed foods, when at this point in the game, if she could eat by mouth, she would be drinking whole milk.
so i caught wind of something called a 'blenderized diet for tubies.'  i was curious, and did some research.  after reading, and just thinking some more i realized i could blenderize healthy foods and give them to shilo through her tube.  there is no reason she can't have regular foods.  there is no reason my one year old needs to continue to be sustained by formula.
there are lots of ways to go about this.  some people keep track of calories.  some people have to add extra things to increase calories with smaller volumes because their children won't handle large volumes.  some people just blenderize whatever they would have fed their typical child, and push it through the tube.
i'm pretty new to this, but i'm guessing i'll fall more on the lackadaisical side, because there's no reason that shilo needs me to count calories at this point in her life.  if she were eating by mouth, i wouldn't be.  however, to keep specialist happy, i will likely keep track of at least some of the meals and calories in order to be able to give them a general, 'here's about how much she gets each day.'  (specialist can be a little obsessive about numbers.)

okay.  so the biggest obstacle in doing all this: blending.  making regular baby food is done easily in a food processor or store brand blender.  blending things like whole pears, tuna, and crackers into a liquid base that can be pushed through a small tube, not easily done with a regular blender.  so i began the search for an awesome blender.  i chose a blendtec.  they are expensive, but we were willing to do what it took to be able to feed shilo food.
i e-mailed the company to see if they had a medical discount for their blender.  they were AMAZING to work with.  and we were able to get a blender.  it arrived today.  i can't tell you how excited i was to push the same meal of tuna, gluten free rice crackers, cottage cheese, carrots, and pear through her tube, that her sister and i were eating.  same volume she gets from her formula, more calories, and way healthier.
i know that not everyone gets as excited about nutrition as i do, but this was something, for me, that helped me feel a little more in control of caring for shilo and her needs.  i often feel like i'm being told to feed her this much of this, give her this medicine, work on this skill, don't do this with her, and so on and so forth.  lots of those things are important, but for many parents, we start to feel overwhelmed by a list of do's and don'ts and begin to feel incapable of making important decisions without a doctors opinion.
i made this decision.  i get to decide what to feed my daughter.  and i get to feel a little more empowered as a mama. (and a big thank you to blendtec for helping to make this possible and affordable for our family.)

another hearing aid chapter.

this hearing aid saga has been a long one.  filled with frustration, red tape, being dinked around (possibly for financial gain), and then there was today (although i guess i need to fill you in on the mri and results as well).
we saw an e.n.t. at the end of august.  he also scheduled an mri to look at the inner working of shilo's ears.  he had sort of wanted a c.t. scan, but i told him that after around 150 x-rays in her short life, that a c.t. scan would take a lot of convincing due to exposure to radiation.  he agreed.
the day of was fine.  it was strangely calm, likely because i've sat through six sedated mri's before, and this one, they weren't even looking for tumors.  so it felt, strangely normal.  about a week later the doctor called to give results.  not a nurse.  the doctor.  and he apologized that it took so long, but 'he read the report, and had to see the mri for himself because he was just having a hard time believing it.'  seriously, that is an AWESOME thing to hear about your child.
so shilo's right ear (which is the ear that has the worst hearing ability), the nerve between the cochlea (the bone that vibrates to transmit sound to your brain) and the brain was underdeveloped.  he had, 'never seen anything like it.'  and the other ear had some issues in the middle ear with some sort of build up.  we could possibly get that worked on surgically (we will actually have to have a c.t. scan to see what is in there before they can do anything) and it would help her hearing on that side.  so we took the results in stride. we had no high hopes of it being an easy fix.  and we made our appointment to get the bahas today.
so we showed up, and had been told to expect it to take around two hours.  it did not.  and the audiologist we saw is the same one who treated me like an idiot when shilo was inpatient.  when we left jason even said he didn't like her (as a doctor, i'm going to assume she's a kind person outside of work)-and he seems immune to the condescending and rude things that make me want to lose it on some people.
in order to get the hearing aid, they will have to apply for pre-approval through insurances.  as soon as she said it, i immediately asked if we weren't getting a hearing aid today (because i likely would have laid on the floor, crying, screaming, and throwing a tantrum).  but they give loaners.  so she showed us how to work it.  but we can only get one (even after insurance approval?!) until she is old enough for the anchors to be implanted-when she's five.  only four years and one month left for that....
and then they explained they would do a special test every time to see if her tubes in her ears were open so the fluid she had in her ears wasn't causing her any extra hearing loss.  i pulled out the name of the test (a tempanagram) and impressed everyone, and then had to tell her about eight times that she never had fluid in her ears (if you didn't reread, or don't remember, she was the doctor who insisted on tubes before she would do hearing aids).  the other 'surprise' of the day was the band for the aids.  we are not opposed to paying for whatever we need to for our children.  we didn't realize we would have to buy a band today in order to come home with the hearing aid.  it's a soft band, much like an elastic headband, with a hard plastic peice to attach the aid to.  anyone want to guess how much it cost us?  anyone?  $75.  i almost fell off my chair.  it's not so much because of the price (i'm aware that medically stuff gets marked way up because they know we don't have other options) but that nobody gave us a heads up before the appointment.  we did, personally, have the money to pay for it outright.  but i can't imagine being a parent who didn't, and having to say, no, we can't get what my child needed because we weren't expecting that expense.
so the big picture is: she has a hearing aid.  she still doesn't understand what she is hearing, because she has never done it before, and it will take a bit for her brain to assimilate the noises and such.  we are super excited about it.
the other side is, i feel torn at this point.  we have a follow up in november, with this doctor.  i plan on keeping the appointment-because she should get her actual aid.  but frankly, after that, i don't want to see her.  ever. again.  we have a few other options, but i'm not sure where to even go from here with those.

sooooo....we have at least one more chapter in her hearing aid story, but more likely many more as we figure out her aids, what to do with her left ear, and getting anchors when she's five.  for now though, here is a picture and some brief info on bone conduction hearing aids-or a bone anchored hearing aid on a soft band.

shilo in her hearing aid.  i plan on blinging this headband out, as well as making some big clip on flowers to cover the plastic look of the aid.

a bone conduction hearing aid, takes sound, turns it into vibrations, and conducts those vibrations (through the bone in your skull) to your cochlea-which then sends the info to your brain as sounds.  shilo's does not bring her hearing to a level of perfect (she is now at a mild to moderate level).  there is a piece we got with it that is hard plastic, that you can attach it to to test to see if it's working.  so we did play a little.  and it's crazy weird.  you can bite down on the piece and hear through your teeth.  sort of fun.  if you are interested in reading more than my amateur interpretation of how a bone conduction aid works you can go here.  or just google bone conduction hearing aids or bahas and read until your heart is content.

...and the saga continues.

yes, my friends.  it's another chapter in our hearing aid story.  if you haven't already read about it you can go back and read the first and second parts to catch up.  the piece of paper had now been halted to prevent someone from paying for something that should not be paid for.

in my first post i mentioned that the doctors thought that bone conduction hearing aids are what would work best in bringing shilo some degree of hearing.  so i found a local doctor who said they could do them (if you remember, she can't do them-at least not what is needed for a very small child).  however, shilo's left ear is slightly better than her right.  she still can't hear us, but the testing showed less loss in that ear.  so the doctor we saw locally said she thought she could bring shilo's hearing up into the normal levels.  normal.  i was SHOCKED.  shilo has what is called mixed hearing loss-so it's both conductive and sensorineural hearing loss. from what i understood, with the degree, and the mixed loss, we would never see normal with her hearing.  so we had a mold made of her ear and the hearing aid was ordered.
monday we had a follow up e.n.t. appointment for post ear tube placement.  we knew they would schedule some sort of imagery testing to see if the conductive hearing loss is something that could be surgically repaired.  and we knew he would be the doctor that sent the referral for her bone conduction hearing aid.  so i asked him about the bhe (behind the ear) aid we had ordered.  he said, 'if you try to bring her hearing up to a normal level, it will be extremely painful for her.  she will never have normal hearing.  she needs baha (the bone conduction aids) on both sides.
i left monday with my head spinning.  two different e.n.t. doctors, and an audiologist at riley all said bahas.  one audiologist said bhe.  i talked it through with jason, and a few other people, and still just felt really uncomfortable with what our best choice was.  do we walk away from the person giving us some hope of normal hearing?  was she spewing rainbows and sunshine onto a situation because that's what she does?  was she choosing the bhe aids because she would benefit monetarily if we chose to go with those (the other three specialist will not be doing her aids so they gain nothing from whatever our choice is).  i don't want rainbows and sunshine.  i want the truth.  and if the truth is that a bhe aid will bring her to the same level of hearing as a baha, then why would we go with a hearing aid that is tons more work (remoldings every time her ears grow-which is a lot on a small child.  feedback issues.  so much more work) instead of the one that we can use and will stay the same as she grows.
so at the end of the day i decided to send an e-mail out to my father in law.  he's an audiologist.  he works at a v.a. hospital, which is obviously different than pediatrics, but he's smart, and i know he will give it to us straight.  and he did.  it turns out that we are going with the baha aids.  i wish i had known in july what i know now.  i would have already had a referral and our appointment would have been much earlier.
so it looks like shilo may get to hear by her first birthday if all things pan out well-and she will have an mri in early september to see if they can figure out what caused the conductive hearing loss.  i also get to figure out how to make a diplomatic attempt at saying to private audiologist-what were you thinking?  because two e.n.t. and two audiologist have all said the same thing-the opposite of what you are telling us.  are you going to continue to stick with what you originally said or do you want to change your story?
i know that some doctors either believe that patients are uninformed or think that patients should take what they say as 'word.'  we believe that information and intelligence are available, and that we will make the choices we believe are best for our daughters, even if it means fighting with a doctor who made a really poor call.