breaking up is hard to do

i've been a bit behind on updating little m's cochlear implant surgery progress...so let me catch you up to date!

as most of you know, we had picked our surgeon and hospital back in october, and we even had a surgery date for halloween, when at the last minute our insurance company denied the surgery until she was a year old. (for thoughts on why it matters to have her surgery earlier rather than later, go to this earlier post or here for an overview.) the amazing let them hear foundation began advocating the insurance company on our behalf in the hopes that little m could still get her surgery before she turns one in april. our lawyer at lth, amy, warned us not to have unrealistic expectations. she said our expectation should be that the surgery would not happen before april 2009, but that we could at least fight the insurance denial in the hopes:

• of the very slim possibility that blue cross/blue shield would relent and actually approve little m's surgery before she turned one.
• that our case would down the road help other babies who need ci's before they turn one. hopefully the more cases that are brought and overturned, the sooner the fda will adjust the guidelines for cochlear implantation + therefore the insurance companies will approve these surgeries. if other families don't have to go through the roller coaster of emotions that we've had to, then this whole process is worth it, as much as it sucks for us.

children's hospital oakland's audiology department had already had some shake-ups in 2008, but we really liked everyone we had worked with there, and we loved how close it was to our house. sarah, our audiologist (and the person who first told us that little m was deaf), was consistantly super accomodating to us and was great about keeping us informed of all of the changes in their program. BUT. in between october 31st, when our first surgery was scheduled, and december, when our first insurance appeal was denied and we went for the second appeal, our surgeon who we were using at children's hospital moved across the country. ay. when someone is cutting into your lil' baby's head, you kind of want to make sure you know who is doing the surgery. first we hear it is going to be one surgeon, and then another surgeon, and finally  we hear really great and unexpected news! children's hospital is going to have dr. roberson - the best cochlear implant surgeon in the bay area be their new surgeon. we were thrilled that in this whole messy, complicated process that cho's new surgeon was dr. roberson. 

i'm already making this post longer than it needs to be (i know, shocking), but basically we found out a couple of weeks ago that at the last minute, for whatever reasons, dr. roberson being the surgeon for children's hospital fell through. all of a sudden they were going to have a totally different surgeon who we had never even met. again, let me remind you that whatever surgeon we go with will be opening up sweet little m's head.

it may seem like we are making a big deal about who we pick to go with for this implant surgery, but in addition to the actual surgery, we will be working with an entire team of people for an extended amount of time. little m will have to go in many times to get her ci's mapped (basically the levels set and adjusted), for speech therapy, and follow-up. it isn't just a one time kind of thing.

in the end, we decided there were just too many changes at children's hospital for us to emotionally handle. we needed to pick a team that was currently in place, and stable. as much as we love everyone who we worked with at children's, we are now schlepping across a bridge to palo alto to california ear institute and the let them hear foundation (they do advocacy and also audiology + a bunch of other stuff.) when i emailed our audiologist, sarah, i kind of felt like i was breaking up with the hospital. "it's not you, it's me" sounds as lame, by the way, when you are breaking up with a medical facility as it does with a sweetiepie. 

we'll see what happens down the road, but for now we cant wait for little m's surgery!

it may be soon...

bad news bears

stupid highmark blue cross blue shield's building, pittsburg, pa

we just got news that our insurance, highmark blue cross blue shield insurance, is denying little m's surgery on friday. when matt called me tonight to tell me i just broke down sobbing. honestly, i feel like we have handled much of this very hard year pretty well, and this felt like a breaking point. i am so, so tired. despite all of the big decisions and constant appointments, i felt like we kind of got into a rhythm on this marathon of hearing loss. then we got hit with the avalanche of everything with my dad, and emotionally i've felt completely leveled. our family is sort of gathering together, huddling up, and figuring out how to move forward with these gaping emotional wounds. 

but at the same time i was thinking, ok, we have m's surgery so soon! this is a good thing in our world! SIX months is so young to have the surgery but our surgeon made it seem as if everything would go through without a hitch, insurance and all. originally i had thought that there was no way she could get implants until 9 or 12 months, so when the surgeon said 6 months, it was such a shift in expectations. it's one of those things where as soon as we found out 6 months, then everyone we would have appointments with would say, "oh, yes. bilateral surgery at six months is SO much better than at a year..." it kind of felt like when you are dating someone and your friends smile and are polite until after you breakup, upon which they all tell you how they really felt all the time. so, as more and more professionals told us that 6 months was so much better, that is what my expectations became.

and now, a big fat no from the insurance company. i feel deflated and exhausted and beaten down. i want to plead with someone and say, "if this was your baby, and your baby was deaf, and could access sound when it was most important, and in a way that would benefit her for the rest of her life, wouldn't you want that?" we don't get this time back, we can't rewind and get these six months again. this may sound like no big deal, but it is in our world.

i have no problems fighting for this. but i am so tired. and just ready for something to be easy and effortless and battle-free.

and it makes me so mad that if we had the money lying around to pay out of pocket for this surgery, that we would be at her pre-op appointments thursday morning, and in surgery on halloween. that seems so unfair.

drumroll please...

{an old school sign for children's hospital oakland...don't worry, their facilities are more up to date}

so, after much deliberation, matt and i have decided to have little m get her cochlear implants at children's hospital oakland. this is a huge decision in our world of hearing loss, and it took a while to decide as there were many pros and cons to both of the programs we looked into. we really super liked everyone at stanford and their program and we actually even preferred one of the implants they use that children's hospital does not (it's the european model and has way better style, but is less used in the u.s. and our surgeon at children's doesn't work with it. leave it to the europeans to be both fashionable and functional! what's new.)

at first, as soon as we said it out loud to each other, i had buyer's remorse and wondered if stanford would have been better. but then we went in for an appointment thursday (yes, we had not one but two appointments there this week), and it just confirmed to me that this was the right decision. i love little m's audiologist. i love her speech therapist. i love that they gave us free loaner hearing aids until her surgery so we didn't have to pay thousands of dollars for a few months of use. i love that it is ten minutes from our house. i love that it is blocks from our pediatrician. i love that there are huge stuffed monkeys hanging from trees in the foyer. i even love that bakesale betty is so close (the most amazing sandwiches. ever.) (ok, that wasn't actually on my list of pros and cons, but now that i think about it, it is totally a pro. while i'm at it, sweet adeline's bakery is also so close and that now bolsters the pros list even more.)

while we were at m's pre-implant speech and language assesment, i met my new hero. adeline mcclatchie, who directed the pediatric audiology department at children's hospital from 1968-1994, and who started their cochlear implant program in 1990! she played with m while i answered umpteen questions for the therapist and she was just amazing with m. in just a few minutes she taught me all of these new ways to interact with little m to communicate with her effectively. honestly, i want her to move next door and be my personal tutor for all things developmental. m loved her too, and as usual, charmed her way through the session as she cooed, played, and rolled around on the floor.

we also found out that if our insurance approves it, m's cochlear implant surgery will be SO soon! either october 31st (yes, as in 20 days from now) or november 7th. wow. surreal, exciting, scary, all rolled into one. that means she will still be 6 months when she gets it- isn't that crazy? i will say that it is all becoming more real, and after her mri this week it remains frightening to think of doctor's opening up my baby's head. wow. so many emotions....

but for now, at least we have a decision as to where her surgery and followup will be, and as much as it is a cliche, we are taking one day at a time around this house!