choices.

parenting is hard.  knowing what is best is hard.  push backs from the world around, the experts, the blogs, the strangers who comment, they are hard.  we do our best to choose what works for our children.  we parent Abigail and Shilo differently.  they are two different beings. 
these past few weeks I have been confronted by outsiders with the questions.  the why homeschool for Abigail?  a professional telling us we are 'limiting' Shilo by choosing not to push speech therapy and oral communication on her.  I stood my ground. 
and then I went through my days watching my girls.  wondering.  did we make the right choices?  are we doing anything well for these two little that we are trying to parent, and raise, and love to pieces?  are we being selfish in our choices?  are we limiting them?
and like the amazing little beings they are, our girls show us, and remind us why we have chosen the what we have, and why it is right.  for now.  getting to send Abigail out into the snow this morning, before we started school work, all bundled up, and full of light and laughter reminded me how great it is that she still gets to spend so much time playing.  we can get all of our school work done, and she can have lots of time to run, and play and be six.  and that is a beautiful thing for her.  and for me. 

almost ready to play.

and shilo.  and language.  and limits.  oh, if they could only see what we see.  a little girl who crawls over and asks for music, and then does her best to fingerspell, 'lecrae.'   three.  my three year old is trying to spell.  and then she tells me, amidst wiping banana in her hair that the banana she is eating, is a fruit.  and indeed, it is.  and i'm blown away that a little girl who can't speak many words, can communicate things to me that I did not know she even had in her little brain.  as if those reminders weren't big enough, weren't sure enough for us to know that we made a choice that took the limitations of speech away, and left her with language, we find her signing, in her sleep.  yes, people who use sign language as their first language do indeed talk in their sleep, with their hands.  and, it had never occurred to me.  but, the beauty and greatness of it left Jason and I laughing and full of joy.
parenting is full of choices.  there are some absolutes.  there are things that are never okay, and things that always are.  and most of us are limping our way along trying to figure out if we are doing, or saying anything right.  we're full of guilt, pain, and shame from the days we have been less than stellar in the parenting department.  we put the pictures out there for the whole world of the things we are doing well.  and, we watch those around us trying to measure up as better or worse. 
when my parenting and my decisions are called into question I quickly become defensive and snarky.  you see, most of the things i'm doing with, for, about, my children, those were things we decided with deep love for the ones who we were deciding about.  questioning those things feels a lot like questioning whether my love for them is.  and it is.  so i'll do my best to assume that your choices come from a deep well of love, the exact same place mine do. 

hearing, language, choices.

it seems that I've had about thirty conversations in the last month about shilo's hearing, and our choice to not use hearing aids (for now), as well as using ASL as her first language.  some of the conversation has been because we had another sedated abr, and there was a new audiologist who delivered the results.  some was a result of going to a conference for parents of children who are deaf or hard of hearing.  and, some are because shilo will be three in a few weeks, so she ages out of early intervention and into the school system.

so here's some more information for those who are interested.  first of all, there is a whole community that some know exist, and some don't.  it's the deaf community.  in this community, being deaf or hard of hearing is not seen as something that needs fixed.  the adults in this community are just like the adults in any other community.  some went to college.  most of them have jobs.  they raise their children, go to soccer games, and have hobbies.  they might use apps on their phones to help make doctors appointments or to help with ordering in a restaurant.  but, they are perfectly capable of functioning in the world, just like everyone else.  some of them choose to use hearing aids for themselves or children.  some don't.

most hearing parents who find out that their child is deaf or hard of hearing choose to use hearing aids, have cochlear implants, and to work hard to make certain their child speaks.  the view is often that being deaf or hard or hearing is something that needs fixed.  for people who are hearing, it's hard to imagine functioning in a world where hearing, and speaking are the norm, and not having those things.

our personal view lines up more with the deaf community.  while shilo has some hearing, and we have hearing aids for her, she doesn't like to wear them.  matter of fact, without them on, if their is a loud noise, she puts both of her hands on her head and makes a whiny noise, or sometimes cries.  she is completely overwhelmed by loud noises.  hearing aids just amplify this.  so for her, her hearing aids cause her to feel overwhelmed.  she stops playing or interacting.  most of the professionals we have worked with have pushed us to have her wear them as much as possible so she will get used to them.  we have followed her lead and decided that if they are overwhelming for her, we aren't using them for now.  some day, she might change her mind. 
also, while this isn't always true, because people with Down syndrome are individuals, and there is no one thing that describes everyone with Ds, often times, people with Ds can be hard to understand.  they have low muscle tone, and it's harder for them to move their mouth and tongue in the ways needed.  people who are deaf or hard of hearing also, often times, have trouble with speech because they don't hear certain sounds.  for us, this meant that it was possible that shilo would have extremely hard to understand speech as a result of her Down syndrome and being hard of hearing.  our goal for her was communication.  we wanted her to be able to communicate her wants and needs easily.  so it made sense to us to have ASL be her first language.
at this point, we are not working on speech with her. I don't foresee it being something we do in the future, either.  we still talk to her while we are signing.  she still hears music, and watches signing time that is both signing, speaking, and music.  we are not preventing her from learning oral language.  however, we are also not willing to spend hours of therapy every week trying to make her imitate sounds.  i'd much rather we use that time for motor skills.
so at this point, shilo's communication is almost all through ASL.  (she verbally says, mama, papa, go, and Abigail sometimes.  however, she signs those things more often than saying them).  she actually has a vocabulary on par with that of other three year olds, and uses two and three word sentences.  she uses feeling words, and blows us away all the time by signing something we had no idea she knew.  just like all toddlers, she has some words that are the same, and we have to figure out in context what she is saying. 

we know that everyone makes the choice for their child that they think is best.  I am not saying that people who choose to use hearing aids, implants, and/or oral language are wrong.  but, for whatever reason, every conversation we have about hearing, language, and the choices we have made based on what we are doing for Shilo, I have to defend it.
here's our defense:  we love our daughter.  we are the ones who spend more time with her than anyone else out there.  we know her.  we have tried to do what is best based on what we have observed from her.  it's working for her, and our family.  i'm going to assume that the majority of people I meet are doing the same, whether it has to do with hearing, schooling, or the millions of other things, we, as parents, have to make decisions about.  if you could make the same assumption about us, we would appreciate it.

shilo.

a video of some of our little's signs, as well as her being her very usual active self (i.e. a black eye (you can see in the video) and fat lip all in the same week). there's also some awesome crazy post bath hair, and she has a cold so her mouth is hanging open through most of it.
she can't yet crawl, but she can get where she wants to go, and get into what she wants to...the video ends when she decides to try to go for some electrical cords.

sitting.

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.

dreaming.

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.

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.

the sign.

some of you may recall my brief story of the fight i had to partake in to get a sign put up to warn drivers that we have a child who is deaf.

this would be our sign.  and that would be our house in the background.  thank you very much, i will get the things i believer are important to keep my children safe.

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.

holland, italy, and wherever we are now.

so most parents who have children with special needs have read the poem, 'welcome to holland.'  i have written about it here, and here on my blog before.  the grand idea is that as a parent of a child with special needs, you think you are going to italy with all your friends, and they when you land you find out you are really in holland.
so with shilo we knew we sort of chose holland.  but we also would say that the part of holland we thought we had landed in is not where we are.  there was just much more that came up than anyone could have guessed ahead of time.  it is the ply of parenting.  it holds no absolutes.

however, the part of, wherever we are now, that has been the biggest 'adjustment' is (re)learning how to talk to our daughter.  you see, having a child who is deaf, and choosing to use sign, is like waking up one morning and someone telling you that your child is going to speak another language, oh, and by the way, it's your job to teach them that language.  it's a wee bit overwhelming to try to learn, speak, and teach a new language all at the same time.
we have awesome resources available to us, that we are utilizing.  the state's school for the deaf has an outreach program, and one week we have a parent advisor (who talks about language, and lots of little idiosyncrasies that one might not think of because they can hear) and the next week a deaf role model (who is deaf, and only signs, and so we fumble through trying to understand each other and learn new stuff).
but becoming fluent in a new language takes a lot of time.  and it's really hard to hold a baby, a book, and sign all at the same time.  so you have to re-learn how to read a story to your child.  and trying to sign while someone is talking at the same time, it's nearly impossible for my brain to function in both modes at once.
so right now i speak broken asl.  i sign the words i know, and just leave out the ones i don't.  and i feel self conscious, and guilty that i can't give my daughter all of the language she needs.
but there is also a really fun element to it.  an element of our family have a language that we can use, that not very many other people will pick up on.  a language that makes our little wiggle and smile every time we use it with her.  a language that our big pulls out when she is feeling shy or overwhelmed.  and it feels sort of special and intimate, like it knits our family together, as a unit, in a way lots of other families aren't.

are you interested in learning some basic signs?  we love www.aslpro.com , signing time, and then youtube you can find just about anything as well.  maybe you can learn some small part of what we are at mannchester estate, and join us, in wherever we seem to be now.

understanding hearing loss.

imagine your child is riding her bike.  she somehow manages to fall at just the right angle, and it becomes obvious immediately that she has broken her leg.  you take her to the doctor, have x-rays done, and wait to hear how bad it is, how long you will need a cast, and if any surgery will be needed.  the doctor walks in and says, 'it's broken.  i'm just going to go ahead an amputate it.'  you're thinking, wait, is that necessary?  would a cast not work?  pins or screws?  having it set?  is this really our only option?
it's pretty unusual for a child who breaks their leg to need it amputated, although not completely out of the realm of possiblity.  and if a doctor suggested this as the first option you would likely want a second opinion.  i'm going to compare this to my youngest daughter being deaf.  whenever someone inquires about her hearing aid, or finds out she's deaf, i immediately get a 'oh, are you going to do cochlear implants?'  of 'you should get those implant things so she can hear.  have you ever seen those youtube videos where a child hears for the first time?  it's just amazing!'
i don't expect the general population to have information on hearing loss and how it's treated.  i only knew basics before shilo came along.  so i'm going to try to explain why cochlear implants do not work for everyone, and why shilo has a baha.
first of all there are tons of little components that make up your inner ear, and aid in hearing.  you have an ear drum, some tiny bones, air and space, and a cochlea.  the first few things take the noise in and send it to the cochlea, which is hooked to a nerve.  that nerve sends the signal to your brain to tell you what you are hearing.  if any of these things isn't developed correctly, or does not work, your hearing is affected.  even an ear infection causing fluid to build up behind the ear drum can cause temporary hearing loss.
there are three different types of hearing loss:
conductive hearing loss:  Conductive hearing loss occurs when sound is not conducted efficiently through the outer earcanal to the eardrum and the tiny bones (ossicles) of the middle ear. Conductive hearing loss usually involves a reduction in sound level or the ability to hear faint sounds. This type of hearing loss can often be corrected medically or surgically. 
sensioneural hearing loss:  Sensorineural hearing loss (SNHL) occurs when there is damage to the inner ear (cochlea), or to the nerve pathways from the inner ear to the brain. Most of the time, SNHL cannot be medically or surgically corrected. This is the most common type of permanent hearing loss.
mixed hearing loss: Sometimes a conductive hearing loss occurs in combination with a sensorineural hearing loss(SNHL). In other words, there may be damage in the outer or middle ear and in the inner ear(cochlea) or auditory nerve. When this occurs, the hearing loss is referred to as a mixed hearing loss.
all these definitions were taken from this website.
and now the basics of a cochlear implant.  a c.i. actually takes the place of your cochlea.  in essence the doctor goes in and kills the cochlea to implant an artificial one.  so like a prosthetic limb that an amputee might wear.
so someone with a conductive hearing loss doesn't need a cochlear implant.  there's no reason to kill their cochlea since it is working just fine.  someone with sensioneural hearing loss could benefit from a cochlear implant.  and someone with mixed may or may not benefit from an implant.
shilo has mixed hearing loss.  both of her cochleas work perfectly fine.  she has either tissue or fluid in the inner ear where there should be space.  and her snhl is past the cochlea and on her auditory nerves.  so killing her cochlea would be like amputating a leg that would work just fine with a few pins to help the bones do what they should.
shilo uses (and i say that term loosely, because she's not a very big fan of wearing her hearing aid at the time) what is called a bone anchored hearing aid, on a soft band.  (they don't actually implant the anchors until children are at least five.  fda regulations).  so what her hearing aid does is bypass the outer ear, and send the  sound through her skull bone directly to her cochlea.  even a hearing person and put this on their head and 'hear' through it.  it's a pretty spectacular piece of equipment.  we have a friend, baby aria, who uses a baha as well.  her hearing level is normal with it.  shilo's hearing levels will never be normal because of the damage to the auditory nerves.  so even with the baha on she is still only hearing at a moderate level.
so the next time you talk to someone, and find out their child is deaf or hearing impaired, please don't encourage them to have an immediate amputation.  parents are being bombarded by so many different types of hearing aids, as well as trying to decide whether they want to use sign or an oral method (or both).  they have lots of different professionals telling them different things already.  i personally, am not even a fan of the 'i'm so sorry.'  we aren't that sad about her being deaf.  she's an awesome little girl.  she can feel music.  she LOVES signing.  LOVES it.  she has multiple words she signs regularly (mama was her first).  she understands so much more than she can sign back to us.  a hearing person feels like being deaf means you are missing out.  since she's never been able to hear, she isn't missing anything.  her world is what it always has been.  and we accept her just exactly the way she is.

why would we want to change her?

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.

a piece of paper

last week we went on vacation.  it was fantastic.  and hopefully in the next few days i will write a little more and post some pictures.  but today's post, is once again, dedicated to the process of helping shilo hear.

i wrote a post here about the ridiculousness that has been trying to get shilo's hearing tested and get her hearing aids.
so a couple of weeks ago, jason, shilo, and i met with an audiologist.  i called their office multiple times before hand (like a crazy mom-don't judge me, you'll understand as you read on) to make certain they understood that we weren't needing regular hearing aids, but bone conduction aids.  they understood.  they could do those.  great.  because i definitely don't want to waste my time seeing someone who can't help, and for my child to have to go even longer without being able to hear.
so anyway, we meet with the audiologist.  i didn't love her.  i didn't hate her.  she would do.  i was annoyed that she obviously hadn't looked over her file until the five minutes before she called us back to talk to us.  but, she did say she thought that it might be possible for her left ear to be aided with a normal (very high power) hearing aid.  she doesn't do bone conduction hearing aids (enter a long string of horrible words for the woman who said they could do them).  so we got an ear mold and made a follow up appointment for yesterday.
so let me explain a little further before i talk about yesterday's appointment.  first of all, shilo can hear nothing.  okay, i guess, from what they tell us, that if we were at an airport, it's possible she could hear an airplane taking off.  but as far as voices, music, toys, there is nothing.  secondly, shilo's hearing aids are covered by our states early intervention program.  her insurance would cover them as well, but by being part of early intervention, and having them done, we also have had a parent advocate, and a deaf role model on board in helping our family learn sign, and things that are important for a child who is deaf  (that i, as a hearing person, had never thought of).
so yesterday, i load abigail in the car with a promise of game time on my kindle fire during the appointment.  i am feeling emotional because there is a very real possibility that my daughter will hear for the first time.  how cool is that.
we arrive at the office and walk in.  the office manager (the one who assured my they could do bone conduction hearing aids) says, 'oh didn't you get my message?'  ummm....i was on vacation, and i checked messages upon arriving home, but no, didn't get it.  apparently there is a paper that i haven't signed yet, and then our doctor needs to sign, and then we have a ten day wait period before i can get her hearing aid.
they have her hearing aid in their office.  it's sitting there, waiting on a piece of paper in order for me to be able to get it.  i held it together as we walked out the door.
abigail started crying because she didn't understand why we were leaving (and why she wasn't playing the kindle).  shilo is puking on my shoulder.  i am standing in the parking lot losing it.  i had hoped, i had longed, and i had looked forward to my daughter hearing.  and my heart felt like it had, had all the screwing with it could take.  i considered going back in, and telling them i would just write the damn check for the thing because my kid needs to hear.  yes, it's 'just a delay.'  we will eventually get the hearing aid.  but, my daughter is nine months old.  she has significant cognitive and developmental delays, and she can't hear.  we aren't even certain that this hearing aid will work for her (and are waiting on a referral to another doctor for her bone conduction aid for the other ear).
someone implied not too long ago that the reason jason and i have taken the whole deaf thing so well is because she is adopted so we aren't as disappointed, you know, because 'she's not our own.'  let me make known that as a family who loves music and books, it is extremely sad to me that MY DAUGHTER, MY OWN CHILD, can't hear.  it's hard to know that even with aids, she likely will never have full hearing.
as i laid her and abigail down for a nap today, and sang a song to them, i started crying again.  she was supposed to be able to hear me today.  i was supposed to enjoy her learning to respond to her name, watching me as i sing, and smiling at me.  instead she looked at the wall because she had no idea that there was noise coming out of my mouth.
i am not certain how to fix our system of red tape, referrals, testing, re-testing, and stupid missing signatures. i do know that there is something extremely wrong when all that is standing between my nine month old getting her hearing aid, or not, is a piece of paper.  one that i'll sign a hundred times just to make sure she gets what she needs.

my daughter is deaf.

i mentioned before that shilo is deaf.  we have been working through the details of all of this for a ridiculous amount of time, while my daughter was left without the ability to get hearing aids quite a few months now.  so i thought i would share from the beginning of when we 'knew' and where we are going with it currently.
shilo failed her newborn abr.  this isn't completely uncommon for children with down syndrome.  so we made a mental note to get that followed up, along with lots of other things.  we were in the process of getting a referral for it (because you can't just call and say, my daughter failed this and needs retested, a doctor has to tell another doctor that) when she was admitted to riley in december, for what turned out to be congenital hypothyroidism (also common with down syndrome).
by this point, jason and i were VERY suspicious that shilo really couldn't hear.  she didn't startle.  she didn't react to her very loud sister. ever.  she didn't make any noises outside of crying.  she showed all the signs of a child who can not hear.  so we got home, went through the holidays, and were working on the referral (wrong paper sent, new one for the referral, new rules, different information needed, RIDICULOUS) when shilo was readmitted in february.
an abr is most accurate on an infant when she is sedated or under anesthesia.  shilo was intubated, and sedated for nine weeks.  and so i was all, 'hey, while we are here, just waiting on her to get well enough to have surgery, maybe we could go ahead and do another abr.'  and after asking a few different doctors i finally got one who said yes.  audiologist came and results were not surprising.  right ear had severe and profound hearing loss.  left ear had moderate to severe hearing loss.
i'll do my best to be mostly factual here, and not so ranty, but i'm likely going to rant a little.  children with down syndrome also are more likely to have fluid on their ears.  so before the audiologist were willing to give me a referral to get my daughter her much needed hearing aids, they wanted to do ANOTHER abr.  i kindly explained that this was ridiculous.  so they did another test to see if the ear drum reacts.  shilo's didn't, which they explained meant she likely had fluid on her ears.  they also explained that children with fluid on their ears don't usually have the degree of hearing loss her abr was showing.
as a mother who tries to educate herself, i also knew that the majority of children who had hearing loss due to fluid still reacted to noises.  the fluid might make things sound muffled or quieter, but someone screaming would still cause them to turn their head and look.  shilo, no response.  so i tried to have this conversation with a second audiologist and an audiology extern at the hospital.  the extern finally said to me, 'well, children who have fluid on their ears could lose hearing.  if we do tubes, then we can get an accurate view of what her hearing really is.  i think we could *both* agree that you would like your daughter's ears to be healthy.  right?'  so in my equally sing songy and condescending voice i explained that my (then) seven month old had cognitive and developmental delays, and the longer she goes without being able to hear, the more of a problem that is.
thing is, in this process, i can't just take her to get hearing aids.  she has to have a referral.  so tuesday, shilo got a g-tube, ear tubes, and had a sedated abr. again.  turns out, shilo didn't have fluid in her ears.  the reason her ear drums didn't react to the test is because something in her ears doesn't work.  she can't hear.  so much so that regular hearing aids wouldn't help her.  she will have to get hearing aids called bone conduction aids that sit behind her ears on her cochlea bone to help transmit sound waves directly to it.  and even with that her hearing will likely only be at a moderate level.
her official assessment is profound hearing loss (she is completely deaf) in her right ear, and severe in the left.  the extern who talked down to me was the one who got to come tell me after surgery all about my daughter's (lack of) hearing.  i'm trying not to stay angry at her, but i do hope that since she isn't an official audiologist yet, that she walks away from this specific case learning that sometimes, parents do know what they are talking about.
it's also been hard for some of the audiologist we have worked with to wrap their heads around all of this.  multiple ones have said, this just isn't something we ever see in down syndrome.  i think, sometimes, when your kid has a label, that doctors forget that they also are people.  yes, shilo has an extra chromosome.  she ALSO has 46 normal chromosomes.  and just because her body has lots of the features that come along with down syndrome, does not mean that everything about her is down syndrome.  shilo is not down syndrome.  she HAS down syndrome.  it does not define her.
and as far as shilo's hearing, we are doing our best to expedite the process of getting her hearing aids. we have been signing with her since she was very little, and have some awesome people through early intervention who will be coming to help us become fluent in asl.  there are aspects of it all that make us sad. but right now we are trying to focus on getting shilo what she needs.


just a little end note: i know ALL of the options for hearing aids, and cochlear implants.  please don't ask me if we are going to do implants, or tell me why we should.  don't send my you tube links to the first time some little boy heard.  we will figure out what is best for shilo, and go from there. :)  however, if you have a child with bone conduction hearing aids, i would LOVE to hear from you, ask questions, get advice, etc.