here.

it's been multiple weeks since i've written anything.  there is a lot going on here.  seizures from little.  scary e.r. trip with big. nephew graduated.  fishing. swimming. trying to maintain some sort of organization in my house.  spring cleaning/purging. therapies. life here can get a little full sometimes.

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

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

standing in therapy.

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

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

her wizard of oz outfit for ballet.

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

shilo clapping with her cousin.

fishing with her spiderman pole.

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

passed out after swimming.

car ride home after a weekend with cousins.

both girls slept for a little bit.

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.

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.