Tuesday, August 25, 2015

what is auditory neuropathy?


both of our boys have the exact same type of hearing loss. and the crazy thing is the team at our children's hospital has never seen auditory neuropathy in twins before. so they've kind of become a cute little science experiment. there are a lot of unknowns with AN because every case is different. no black and white answers like with other types of hearing loss. something happens in the auditory nerve that makes what you hear (if you CAN hear anything) sound distorted. so for those of us with normal hearing- when a car drives by and honks that sound enters our ear and our auditory nerve sends a signal to our brain saying "that was a car honking its' horn". but for people with AN, that signal doesn't get sent. and if it does it's most likely a wonky version of the actual sound so you don't really know what you're hearing. 

both oliver and judah can hear low pitch sounds that are VERY loud. like, we have to wear sound proof headphones when we go in the booth with them. and they don't even flinch. other than that they can't hear. with their hearing aids their hearing is ever so slightly improved, but not enough that that would be the solution. so we are hopeful cochlear implants will be the answer. there isn't a 100% guarantee, but the team we are working with feels very confident this route will be extremely effective. some days i think how the boys can't hear the trash truck beeping, the birds outside, their sister bossing them around, me saying i love you. and it makes me so emotional. you don't think about these sorts of things until it effects you and your every day life. i catch myself every single day making noise at the boys to get their attention and then stopping myself because hello, that's not gonna work! but we are working through it, and we know that one day soon these two cuties will hear us. 

Sunday, August 16, 2015

welcome

the last year of life has been pretty insane. found out we were having twins. identical twins. identical twin BOYS. countless doctor appointments, ultrasounds, non stress tests. a super speedy-crazy-intense-amazing labor and delivery. two perfect tiny little babies just in time for christmas.

and then we found out they are deaf.

it's been this kind of weird, drawn out process. first we found out oliver has auditory neuropathy in his left ear, so we figured because he passed the newborn screening on his right he'll be ok. sure, one ear doesn't work but the other will and he'll be totally fine. then we go back to test his right ear and...same issue. we then begin the cochlear implant evaluation process. meanwhile, judah is asked to come in for a hearing test just to make sure he's ok even though he passed the newborn screening on both sides. and what do you know, he gets the exact same diagnosis as his brother.

so here we are. oliver has officially completed the evaluation process and has been approved for bilateral cochlear implants. and judah has just started the whole process. i really wanted to start documenting all of this for all our family and friends to stay updated and follow along this journey with us. because these boys are one big phenomenon over at children's. i mean, they are a phenomenon period. how the heck did we make identical twin boys with red hair and blue eyes?! and how did they end up with the rarest type of hearing loss?! craziness. so please follow along as we trek through this process...times two!