#9.5 (HearsToFinn on Twitter)

Forgot to add in last post that I am starting a twitter account to connect with the blog. Follow me @HearsToFinn. 

Posted in Uncategorized | Tagged | Leave a comment

#9 (MRI, Approved for CIs, CI Convention)

It’s OFFICIAL, FINN IS A CANDIDATE FOR COCHLEAR IMPLANT SURGERY!!!! What an AMAZING feeling! This is a huge step in figuring out what direction Finn’s treatment will take. It opens up doors and gives us (and down the road, Finn) CHOICES.

The final step in Finn qualifying for CIs was an MRI he had on July 26th. Dan & I both wrote a lot about that day on our Facebook page so some of you might know that it was not a very fun experience. The poor guy couldn’t eat for about 10 hours and also had to have IV anesthesia – and at 3 months old, there was no way to tell how well his body would handle that. It was a pretty sleepless night the night before and an anxiety-filled day. We got to Children’s at 9:45am on the dot and he was prepped and ready to go by 10:30 and only then did we find out that the first MRI they had that day had run long so they wouldn’t be able to take us until 12 noon. Dan & I did everything possible to keep our little man happy (including some pretty sill dancing & singing) and tried to not give off too stressed of a vibe. Sitting there though, not knowing how he would do when he was sedated, not knowing if he’d have trouble breathing (the “intubation” info the anesthesiologist gave us did little to set us at ease!), and knowing that the results from this test would tell us if our son would ever have the possibility of ever hearing our voices, was a little much.

I have to give props to Finnegan though- he was a trooper! Didn’t even start fussing until they gave him the IV and he came out of anesthesia very well. He was smiling within 5 minutes of waking up and took a bottle within the next 15 minutes! This is an indication of how well he will take anesthesia come surgery time (though that will be a much heavy dose!).

This was at hour 6 without eating and he was still smiling : )

This was at hour 6 without eating and he was still smiling : )

Trying to distract him pre-MRI in any way possible! Loved the “little” Johnny they gave him to wear!

 

Poor bubby got an ice pack for his foot IV...the Pulse Ox thing on his toe was kinda cool though.

Poor bubby got an ice pack for his foot IV…the Pulse Ox thing on his toe was kinda cool though.

Daddy feeding him his 1st post-anesthesia bottle which he took like a champ!

Daddy feeding him his 1st post-anesthesia bottle, which he took like a champ!

First minutes of wake up...even though he looked terrible (to us), it was a HUGE relief to see those eyes open and take him off the machines!

First minutes of wake up…even though he looked terrible (to us), it was a HUGE relief to see those eyes open and take him off the machines!

Like I said earlier, these results set us up for a much more structured path over the next few months. Things have been pretty up in the air as to next steps for us, but with just one MRI, we have a solid map of what the next year (years to come actually)  will look like if everything goes as planned. We have been accepted into the CI Program at Boston Children’s Hospital which puts Finn on a CI team. The team includes: his family, a CI audiologist (different from his current audiologist), an administrative coordinator (to handle paperwork & fight our insurance battles for us- more about that below), a Speech-Language Pathologist specifically trained for CI patients, a psychologist (to walk us trough the process as a family & help us understand development  growth, & what our expectations should be having a child with CIs), an Occupational Therapist, again, specifically trained for CI patients, and a CI surgeon. These are just the people who Finn automatically sees, but if other specialists are needed, Children’s has just about every specialty.

We have met out CI Audiologist and she is great! We talked about some of the things to expect and she confirmed that we will be aiming for the CIs to be done when Finn is 10 months old. This is a bit of a challenge since the FDA is dragging their butts on lowering the age and still has the official recommended age at 12 months, but Children’s has been doing 10 month olds much more routinely now. It is just a matter of getting insurance on board. An interesting side-note: we  found out that NYU is regularly doing them at 8 months old because insurance in NY is not as rigid as MA. The researchers are coming out with more and more studies linking early CIs with better results and really, after 6 months old, risks of anesthesia and bone migration (the skull is still forming so the bones are still moving) don’t really differ from that of a 12 month old.

After meeting our audiologist, we also had a GREAT opportunity to attend the 2013 Northeast Cochlear Implant Convention– a convention that only happens once every 2 years that we randomly found out about and were able to attend thanks to Children’s for getting us a ticket (also, thanks to Brenda who originally let me know about it!!). We are so lucky to have been able to attend this before he has his surgery so that we could get information and see and talk to kids and adults of all ages with CIs who were implanted at all different ages. You can read all about how much a CI can enhance a kid’s life, but actually talking to a kid or a kid’s family who has one, went much further to reassure us that Finn really is going to have every opportunity a hearing kid has and though he will always be deaf, it doesn’t mean that he won’t hear.

We had a couple of things we really wanted to focus on at the convention. First and foremost probably being which CI company to go with. This is such a hard decision to make. There are three companies we can choose from ( Cochlear, Advanced Bionics, and MED EL) and positives and negatives of all of them and not having any background in the field, Dan & I are in research mode times 1,000 to make sure we choose the best option for Finn. It is a bit overwhelming knowing that we are deciding about the piece of computer they will be permanently putting into his skull!! YIKES. We were reassured by many people that there really is no “wrong” decision. All three companies are great and not one person either of us talked with wished they had gone with a different company. I think we have narrowed it down to two, but still have some research left to do before we decide.

I think one of the most important messages Dan & I have learned and want to convey to friends and family is that a Cochlear Implant is NOT a magic computer nor a bionic ear (though this term is thrown around a lot I noticed, even at the convention). Finn will always be deaf and even with CIs, he will always have to “work” at hearing. Something that drove this home for us was a conversation Dan had with a woman who was working the convention and also had a CI. She and another CI user were talking about the day and he made a joke about her using an interpreter all day. She laughed it off, but explained to Dan that with all the work she was doing, if she had to use her active listening skills all day she would have been too exhausted to drive home that night. Now, it does seem like every single person with a CI has their own version of how it impacts their life or how they manage using them, but this was something that we had not really considered. We knew that crowds might be hard for him or other places with a lot of loud noise could bother him and that we have to make sure we do things like talk face to face and (in our case) supplementing with ASL will help, but I don’t think it ever occurred to us how much he is going to have to “work” at hearing. We also know that EVERYONE is different and although the technology is getting better and better and we are on board to do the most intensive therapy we can to get Finn on a mainstream level, it is not a guaranteed success. The amount of hearing he gains could vary pretty dramatically. We just have to do the very best we can on our end and be happy with our results knowing we gave it our all.

The Keynote speaker of the NECI 2013 was an author named Michael Chorost. He has written a couple of books (and writes for Wired magazine, which is just plain cool), including the book below about getting CIs at the age of 33 years old:

Rebuilt: How becoming Part Computer Made Me More Human

Rebuilt: How becoming Part Computer Made Me More Human

 

I have read articles on CIs until my eyes blurred, but his talk went the furthest into helping me understand explaining how my son will hear. He gave a great example. I will try to repeat it here:

Try to read the following sentence:

“lk rdg txt wth hlf th lrs whtd ut.”

It took me a while, but I finally worked out that it said:

“Like reading text with half the letters whited out.”

He said that hearing with a CI is like “constantly figuring out what the vowels are”. He went into great detail about what hearing with CIs  is like and I filled about 10 pages of notebook paper that I will spare you from reading, but trust me, it was all awesome information!

Besides talking about CIs, Chorost did a great job of talking about being out in the real world and “equalizers” that put him and anyone in the world on the same playing field as anyone else. It was a pretty inspirational speech and I am looking forward to reading his book.

In addition to the Keynote speech, the other two sessions I found most interesting was the session on child development specifically for a child who is deaf and a Meet the Surgeon panel where A LOT of questions were answered about the surgery itself. I actually got to meet and talk face to face with two of the Children’s surgeons, one of whom may potentially be Finn’s.

I feel like I have glossed over a lot of what’s gone on the last few weeks because to go into detail about everything would turn into a 20 page post, but if there is anything you have more specific questions about that I mentioned, please feel free to ask me or Dan and we’ll happily go into detail. I will also write another post soon to fill in some of the other things I left out tonight.

I leave you with two things tonight: The first thing is a link for you teachers out there. It is about acoustics in the classroom and it is NOT specific to CI STUDENTS. It is REALLY dense, but definitely worth a skim through if you have the time. It shows what an impact the acoustics can have on all kinds of aspects of the classroom and the students:

http://nonoise.org/quietnet/qc/

And lastly, some pictures from the NE Cochlear Convention (some I took and the rest are from the NECI2013 facebook page):

Comic Book about a kid who saves his town because of his "Robot Ears"

Comic Book about a kid who saves his town with his “Robot Ears”

2013-07-27_08-42-34_377

Kid’s percussion instruments up for auction

2013-07-27_08-47-37_632

Teddy bear with a CI

2013-07-27_08-58-29_924

A soccer ball creature created with CI parts.

62989_625882674112388_1705353606_n

Got to meet this little cutie. Not even 2 years old and had her CIs for about 8 months and almost caught up with her peers already! Amazing.

1014174_625882724112383_927410219_n

Author Michael Chorost

a1578e0fab6b5702a488c43e5376327e_i0ey

Kris Martin. IRL Professional Race Care driver who has a CI was there to hang out and chat with the kids/teens.

2013-07-27_08-47-16_695 944566_625882790779043_1685244286_n

Posted in Uncategorized | 3 Comments

#8 (Hearing Aids)

2013-07-18_10-33-21_331

Dan putting in Finn’s hearing aid for the first time.

Today was a big day for Finnegan- he finally got his hearing aids!!! I say “finally”, but he is actually one of the youngest patients there to get them! It was an exciting, but overwhelming visit. Before I go any further, I think a lot of people were confused about the role the hearing aids play in Finn’s hearing. It is exciting because they are another step in his treatment, but they do not allow him to hear. He has profound hearing loss so that means he is fully deaf and hearing aids can’t make you hear again. What these do allow for is nerve stimulation and possibly some sounds at lower frequencies. Results can be varied- a mom in our playgroup at Finn’s school said her baby girl became much more vocal, whereas some babies with this level of loss showed no reaction at all. It will be interesting to see if Finn has any reactions- he is already a pretty vocal baby so we will have to watch (or listen) closely to see if we notice any changes. Regardless of any outward results, his nerves will be stimulated and it is another step towards Cochlear Implants!

The visit today was a bit overwhelming because there was just so much information! We had to learn all about the batteries- testing them, safety, etc.- how to check the aids with a Stethoset (see below) twice daily to make sure they are working, how to clean the ear molds and attach/detach them from the aid and, most importantly, how to put them in his ear & keep them there when he starts pulling them out!

2013-07-18_16-42-47_405

A Stethoset to “listen” to the hearing aid twice a day to make sure it is working.

2013-07-18_16-43-32_15

Cleaning spray, and tools to clean out the ear molds when they get all waxy.

2013-07-18_16-43-43_151

Batteries and a cool tester thingy to check them every day.

2013-07-18_16-44-04_612

Cute clip that attaches to his shirt so if he rips them out and tosses them, we don’t lose the very expensive equipment!

IMAG0257

Close up of the ear mold—the clear silicone is an exact mold of his ear (see entry #7 to see that process) this goes right into his ear to funnel the sound from the hearing aid that has been amplified.

IMAG0255

The whole shebang. Hearing aid & mold.

IMAG0246 (1)

Making sure the ear molds fit before cutting them down to size. Kayla said he looked like an alien. : )

980330_10151487830056059_1070280094_o2013-07-18_11-56-41_335

 

I am sure the next few days/weeks will be difficult at times while we adjust to the care & use of the hearing aids, but we have been assured by many people that in no time at all it becomes second nature to put them in and part of your daily routine to care for them.

Speaking of other people’s input, we have been going regularly to Finn’s school and playgroup at The Learning Center for the Deaf in Framingham. It is really a fantastic program and it has a mix of all types of kids whose parents have chosen all different paths. There are kids who are hard of hearing and use hearing aids, kids who are or are not candidates for Cochlear Implants and whose parents have chosen or not chosen to go that route (and if they have gone that route, they have chosen to do the surgery at all different ages), kids who have syndromes in addition to their deafness, and kids with all types of family situations. It is nice to be able to get feedback from so many different perspectives. The old days there seemed to be this dichotomy between deaf/hard of hearing kids who used devices to hear and deaf kids who would solely rely on lip reading or sign. Nowadays, from our experience, it seems like any and all paths are supported and celebrated. Don’t get me wrong, there are still some people who are vehemently opposed to CI surgery (a comment was made that surgery isn’t necessary because deaf people aren’t “broken”) and there are others who would shame deaf parents for not choosing the surgery from their deaf child.  Yes, those strong opinions exist out there- especially on the internet!-  but it is not something we have really come in contact with and it seems that more and more people on both sides are open to understanding the other side of the debate. The families we have either heard about or met through The Anne Sullivan Center (EI), The Learning Center , Children’s Hospital’s Deaf & Hard of Hearing Program , have all been varied and welcoming. It really is all about making families feel comfortable, supported, and making friends! There are all kinds of events and get togethers run by these and other programs or just independently, from Deaf Appreciation week at Disney to local outings to Drumlin Farm to conferences like The Northeast Cochlear Implant Convention this month that insures all members of the family are included regardless of age or if they are hearing or deaf. Our experience has been all about getting to know other families and build the biggest support system we can with other people who understand what we are going through.

It is kind of finny that Finn is getting so many opportunities to develop relationships and resources for both his developmental and social skills and he is just 3 months old! Though Dan, Kayla & I have also been able to make helpful connections. Kayla loves going to Finn’s school and joining the Deaf playgroup. She is getting great with her signs and she lip reads waaay better than Dan & I can. Her natural openness and “hands on” affection makes her an easy fit in the deaf community. She is also such an amazing big sister to Finn and continues to show a very protective attitude with him. People have been really great reinforcing her role as the big sister- Children’s always sends her home with a big sister gift and the doctor’s include her in all our conversations (at her level, of course). Family has been fantastic at acknowledging her importance- she even got a special “Big Sister” gift in the mail the other day which she was over the moon about (Thanks Aunt Betsy & Uncle Tim!!). I know we are only 3 months in, but I feel strongly that she will play a major part in how he adjusts to life in the future.

Now that this step is over, the next one is the most life-changing of all! The MRI to determine if he is a candidate for Cochlear Implant Surgery!! It is only 8 DAYS AWAY!!!! We are hoping to get the results the same day, but might not get them until early the following week, but rest assure, I will be posting, blogging, calling with that news as soon as we hear anything!!

I leave you with two videos:

This first one is set to the song “Waiting for the World to Change” by John Mayer and shows how, though we have come far, Deaf people still face a lot of challenges in the hearing world that we might not even be aware of. It is not the most uplifting video, but it is educational in the sense that you see how much the world is geared towards hearing people. The quotes at the beginning were hard for me to read, but I do realize that I can be the most positive person in the whole world, but that can’t change people’s ignorance; I can only control how I let it affect me and my family. (Thanks to Katie Shanahan for this video):

The second you may have seen already. I saw this video when I was about 8 months pregnant- months before I knew I would have a baby who may have CI surgery. It is a little boy hearing his mother’s voice for the first time when they activate his CI. There are actually quite a few of these videos on Youtube, but this one is my favorites:

 

Until next week!

 

Posted in Uncategorized | 2 Comments

#7 (Communication Choices)

2013-07-02_20-10-39_771

The last few weeks have been pretty interesting. The focus has not exactly shifted, but has begun to encompass more of what being part of the Deaf World will be like. Since Finn’s diagnosis, most of our appointments have been about meeting his medical/developmental needs. Audiologists, Geneticists, Otolaryngolosits, SLPs, etc. all these specialist are essential to the path we’ve chosen for Finn.

After deciding that we wanted to try for Cochlear Implants, we had really important decisions to make regarding his speech and language development. The reason it is so important is because the way you choose for your Deaf child to learn speech & language significantly impacts his future both socially and academically. The reason it is so difficult is that there are many different theories/strategies and some STRONGLY debated opinions on what is best. So strong, in fact, that some hospitals have specialists who refuse to teach certain methods that others think are the best!

There are five main options for communication: ASL, Cued Speech, Oral Auditory-Oral, Auditory-Verbal Unisensory, and Total Communication – click this if you would like to see a chart explain each in detail.

 

We are given this information and then we rely on whatever research we’ve been able to do in a short time about topics that some people have dedicated their lives to understanding, and your asked to make a decision when you have one hospital/set of doctors who swear by one method and another who swear by a different method altogether. So, say you choose to get Cochlear Implants for your child and your hospital takes the Auditory Verbal Unisensory approach. This method STRONGLY discourages ASL, lip-reading or any other visual cues. The rationale here is that if they can ONLY rely on Auditory stimulation, they will essentially be forced to develop hearing to communicate. But, what if down the road, your child chooses not to use the CI and wants to be able to communicate with ASL and be accepted by peers in the Deaf community? He’d have to start learning ASL at that point when it would’ve been much easier to have been brought up with it. I completely get why this approach works for some kids, but I find it limiting. I want him to be able to make his own choice down the road and I feel like restricting ay form of communication would not allow him to do this. Also, from a language development perspective, it doesn’t make sense to me. Yes, this might develop the hearing sense a lot faster, but is it really helping with language? From my experience with ESL students in my classroom, if they had mastered their own language and then learned English, they tend to do better overall. Also, the whole reason Baby Sign is taught to hearing babies is the theory about how the child will have an enhanced vocabulary and be a better communicator  because he/she was able to develop the communication parts of the brain before even speaking.

We’ve chosen to go with the Total Communication method. It uses every and all means of communication that is available. This might seem like a no-brainer, but there are conflicting philosophies about this and how it might not allow for the child to focus and master one form of communication. Every option has Pros and Cons, but the MOST IMPORTANT thing to me is choice. We, as his parents, need to be given the choice of what WE feel is best for our family. I could never go to a hospital or work with doctors who said it was their way or the highway! Another reason why we love Children’s Hospital : ).

This choice is what has led us to wanting CIs, learning ASL, and joining the Deaf Community. Can I side track for a second? Something I didn’t know before all of this was the difference between the phrases Deaf World, Deaf Community, and Deaf Culture. Here is what I’ve learned from ASL University:

  • Deaf Culture consists of the norms, beliefs, values, and “mores”* shared by members of the Deaf Community. Note: the term “mores” means: “The accepted traditional customs, moral attitudes, manners and ways of a particular social group.” — dictionary.com
  • In general, the global  “Deaf Community” consists of those Deaf and hard of hearing people throughout the world who use sign language and share in Deaf culture.  Hearing family members, friends, interpreters, and others are also part of this community to the extent that they use sign language and share in the culture.
  • The Deaf World refers to all “d”eaf-(physically) and hard-of-hearing people and the people with whom we regularly interact. For example: teachers of the Deaf, interpreters, audiologists, social workers, religious workers, parents, siblings, etc. They are all part of the Deaf World but not necessarily members of the Deaf Community.

The last few weeks, we have started developing our first relationship with the Deaf Community. We have joined The Learning Center for the Deaf – an amazingly supportive, nurturing program that has welcomed us with open arms. Like being in a foreign country, it can be overwhelming being in a place where English is the second language and you don’t speak the primary language, but the people there are so patient and understanding and while we are still in the beginning stages of learning ASL, we’ve never been made to feel like outsiders or awkward for not knowing how to communicate in their primary language. Kayla is offered every opportunity that her brother is even though she is hearing and has been loving the Deaf Playgroup- the teachers are deaf and a lot of time there is not a translator with them so she has been left to her own devices and they say she is communicating via the signs she knows, pantomime, and even a bit of lip-reading! Pretty cool. I am hoping that we can arrange for her to somehow continue with this when school starts in September.

We have been given a TON of information from the center (and from our Early Intervention teacher) and I am excited about learning about  raising a baby who will be part of Deaf Culture and all the resources will we have to aid us. Yesterday, there was a deaf girl in our group who currently attends Gallaudet University and she told us all about her life, growing up in a hearing family and what her life was like academically and socially. The same message kept coming through over and over and over: She lived a life just like any other person who is part of a loving, supportive family and community. Again and again her answers to our questions were no different from an answer a hearing 22-year-old would give.

We are also learning how we can enhance Finn’s development as a baby. We start a Shared Reading program in September to learn how to read books to a deaf child. We are finding toys that are much more geared to his visual and tactile responses than a lot of the toys we had for Kayla (which we are realizing now are so much more geared toward stimulating babies’ hearing sense!). Actually, I have been meaning to post something on Facebook asking if anyone out there has any baby-safe mirrors that their kids have grown out of, we’d happily take them off your hands!  We will be setting up mirrors all over the house so he can see us coming in and out of the room or other things around the house. Tricks like that are things we are learning about to help him utilize his other sense while we wait to see if he will be a candidate for CIs (the MRI is coming up so soon!! 15 DAYS!!!!)

I end this entry with two things: first,  the usual ( but never waning) thanks to everyone out there who have shown support. We appreciate every call, text, e-mail, FB message, etc. that people from both our past & present have used to reached out to us. Second, a cool list I have compiled about some things I have learned about deafness that I thought others might find interesting:

Interesting Facts About Deaf People

– There are approximately 22 million Deaf and Hard of Hearing persons in the U.S.

– Deaf people have safer driving records than hearing people nationally.

– The huddle information used by football teams originated at Gallaudet College, a liberal arts college for Deaf people in Washington, D.C., to prevent other schools from reading their sign language.

– A Deaf center-fielder for the Cincinnati Reds, William Hoy, invented hand signals for strike and balls in baseball.

– When Beethoven created his ninth symphony, he was profoundly Deaf.

– Alexander Graham Bell, inventor of the telephone, was originally an instructor for Deaf children and invented the telephone to help his Deaf wife and mother to hear.

-During the 19th Century, Martha’s Vineyard was considered “Deaf Utopia” where one in four people were deaf and all residents earned sign language and used it to communicate.
-Text Messaging originated  as a way for Deaf people to communicate.
-Mimes originated from Deaf Culture.
2013-07-02_20-35-32_703

 

Posted in Uncategorized | 1 Comment

#6 (1st ear Molds)

Finn had his first (of his bi-weekly) ear molds done today. These molds were made out of a silicone foam that took an impression of his ear canal for his Hearing Aids. The Hearing Aids were ordered today and will be in July 18th.

IMAG0183

New nickname: Puddin’ Ear

IMAG0186

Ear Mold #2
IMAG0188

Sizing up a Hearing Aid to see if it will fit.

You might be wondering why he has to get Hearing Aids if he is profoundly deaf and those won’t make him hear. Well, first and foremost, if he is a candidate for Cochlear Implants, it is mandatory that he wears Hearing Aids for a certain amount of time first. This rules out any possibility that his hearing can be improved with Aids instead of major surgery. Basically, this is a formality because with Profound Hearing Loss, Aids really don’t do much. That’s not to say that they don’t do anything for him though. At the very least, they will help stimulate some nerves in his brain. They know from the past that kids’ brains whose hearing nerves aren’t stimulated while young start switching to relying more and more on other nerves, like one’s for sight and for lack of a better term, the hearing nerves atrophy. Basically a use it or lose it situation. So even if he isn’t hearing, he is still being stimulated. Plus, there is a slight chance that he could hear some lower frequencies with the aids in, but that is not very likely.

One cool thing our Audiologist said to us is that this is the youngest baby she has gotten aids for by about a full month. She has been in the field for 30 years and says that Finn is ahead of the game in every aspect of his treatment (Early Intervention, Audiology, and all the appointments that go along with qualifying him for CI surgery) and is VERY happy (almost seemed surprised) at how well he is developing in other areas -basically no difference at this point between him and a hearing 2.5 month old, yay! Another HUGE shout out to Stephanie because without her input early on, I would not have known where to start and would never been at this point already!

One thing I knew already, but has been driven home hardcore is how much parents can influence treatment of their children by being advocates (and maybe slightly pushy…and maybe, very rarely, a snarling Mama Grizzly :o) ) There have been many calls to our health insurance where I have felt like I have to educate them on the process and usually they come around to understanding why they have to pay for an EKG or an eye exam, for example, when it is his hearing that is the issue. At other times, things are just not moving at a pace that I am happy with and it is amazing how many times a simple, polite, call or email will help nudge some paperwork through and move the process along- (actually, starting tomorrow, Children’s Radiology secretaries will be getting used to hearing my voice every morning as I call daily until they move up Finn’s MRI. Sorry, but I’m not waiting til the END of the month to find out the most important information for the future of Finn’s treatment if there is any opening to be had earlier!).  We’ve also had to make hard decisions in order to get the best care. We ended up having to switch Pediatricians because we were having to fight for every appointment to be at Children’s. We have now been to both Tufts & Children’s multiple times and I cannot tell you how much more comfortable we’ve  been at Children’s at every level. It is no contest. And if that is where we feel he will get his best treatment, we shouldn’t have to fight for it to be there, especially when it wasn’t a health insurance problem, it was a practice affiliation (which we are finding out is a lot more BS than we previously thought). We lucked out with our new Pediatrician and after one visit, both of us feel extremely confident that we made the right choice.

2013-06-27_14-38-48_207

An example of Children’s level of care: They had this book waiting for Kayla to take home to teach her about her brother’s Hearing Aids. ❤

So Hearing Aids are on their way, ASL program is in the works (a big shout out to the amazing response from family members in wanting to join us for this class; we are very touched by this and will keep you informed of when it will begin), MRI & Genetic testing scheduled for July- afterwards which we will know if he can get the Cochlear Implants!!!! I may not be religious person, but definitely willing to accept any and all prayers, good thoughts, juju, Karma, or anything else people want to throw our way as this HUGE part of his diagnosis gets closer!

One final note: I have had a lot of people come up and thank me for starting this blog, saying that it has allowed them to follow Finn’s progress and feel part of it without having to bug us or ask invasive and/or uneducated questions. I just want people to know that they should feel 100% comfortable asking any and all questions they might have. Dan & I knew nothing of what this journey would entail and have only learned about it by starting with the very basics and asking/reading until we found answers. Any questions you may have are probably ones that we have already asked and would be more than happy to share with anyone. The doctor’s warned us that when he gets his Hearing Aids, and in the future when he (HOPEFULLY) gets the CIs, strangers and others might be very keen to asks us questions (or even, as we’ve already experienced few times, offer condolences as if he has some sort of life-threatening disease) and we want to make absolutely sure that we show Kayla & Finn that there is no shame, no embarrassment  in Finn’s hearing loss. It is simply a part of his life that makes him unique. People showing interest, asking questions, etc. is welcomed because it shows that we are not alone in supporting Finn. We have had only very minimal negative experiences so far- an example  a woman in the supermarket asked Kayla about her brother and when Kayla told her that he was deaf, she said, “Oh, no, oh my God, I’m so so sorry.” Kayla’s response is one that I hope everyone who knows Finn will keep in mind. In classic Kayla fashion she replied, “ummm, he’s fine, ya know!” She was confused at why this woman would be feeling sorry for her baby brother when, to her, he is like any other baby brother in the world. So lucky to have such a great kid who knows exactly what’s up.

That’s all for know. Any questions, comments, you can leave here, but also feel free to text/e-mail/Facebook me if you feel more comfortable.

2013-06-23_07-42-08_702

Kayla reading to Finn…this is the morning that she said to him “Don’t worry, I’m going to look EVERYWHERE and find a machine that will make your ears work.” <3<3<3

Posted in Uncategorized | Leave a comment

#5 (ABR with BCH)

Great news! Went to the Ophthalmologist yesterday and they did a whole bunch of different tests and all of them came back normal for Finn’s age! It is a huge relief because that rules out some syndromes that could’ve gone along with hearing loss. The visit was at Tufts Floating Hospital instead of Children’s Hospital and I can’t exactly pin point it, but I just felt out of sorts there. Both doctors were super nice and I trusted them completely, but the rest of the place- from the condition of the bathrooms to the friendliness of reception- just didn’t have the same feel as Children’s does. We are probably spoiled because Children’s is just above & beyond from the second you walk in, but when dealing with major issues, isn’t that what you want??

The reason for Tufts is that our pediatrician does not have an affiliation with Children’s and therefore, cannot usually refer to them. Through a loophole, he did get us referrals for the Audiologist, but not other specialists. We are in a hard position again because this year there might be other specialists we are referred to and after yesterday it confirmed to us that we don’t want to be pigeonholed into any other hospital. We have an MRI coming up and I will not go anywhere but Children’s for something that major! So we are back to where we were a month ago with probably needing to switch pediatricians. The good news is that I think we found someone who not only is affiliated with Children’s, but also currently sees a child with hearing loss so she is familiar with what he is going through.

Today we were back at the Audiologists for another series of hearing tests. They re-did the ABR (The auditory brainstem response (ABR) test gives information about the inner ear (cochlea) and brain pathways for hearing.) and found the same results as Mass Eye and Ear did -diagnosis of Profound hearing loss where he had no response in either ear for anything up to 95 decibals (about the level of a music concert), which is the highest they can test at this age. This ABR went WAY smoother than the last one, which took over 4 hours. Again, Children’s being designed to treat Children they had a couple things available during testing that Mass Eye & Ear did not. The coolest being the “headphones” that played the sounds- at MEEI they balanced huge headphones next to his ear that fell every time he moved (one reason the test took so darn long). Here is what the Mass Eye & Ear headphones looked like:

Image

Example of the headphones they use at MEEI. A bit big and awkward for an infant!

 

 

Today’s test, the headphones were actually just a little wire that they stuck in his ear! So cool:

Image

The headphone is the one directly in his ear- cool, huh?

 

Besides the headphones, he had a bunch of electrodes attached to read his brainwaves. He got a nice little exfoliating facial first. Pretty much like a free day at the spa ; )

Image

Trying to get him into a deep sleep for the test!

 

In addition to the ABR, he also had a Tympanometry test (assists in the detection of fluid in the middle ear, perforation of the eardrum, or wax blocking the ear canal) which came back normal- meaning that the hearing loss isn’t cause by something like ear wax build up or an easier-to-fix issue (we were told this was probably not the case anyway, but was good to double check). Lastly, they did an Otoaccoustic Emmissions Test (Otoacoustic emissions (OAEs) are sounds given off by the inner ear when the cochlea is stimulated by a sound) which just confirmed all the other tests by showing no response.

Even though these tests didn’t give us any new final results, it was good that they were consistent so we weren’t DEEP down inside thinking maybe, possibly the tests were all wrong. There really is no room for doubt at this point that Finn definitely has Profound Hearing Loss. Also, it is good to have these results because between this and the Ophthalmologist appointent, we are starting to narrow down the outliers that would prevent Cochlear Implant surgery. Cannot wait for that MRI in July to check out his anatomy and see what’s going on in there!

It will be a busy, busy summer. I go back to work for just one week next week, and then starting the week of the 24th we have weekly visits from a Teacher of the Deaf, a weekly 2-hour parent-infant group, a weekly visit from a representative from The Learning Center (Deaf Early Intervention Program),  bi-weekly ear mold/hearing aid appointments, regular visits with the ENT and pediatrician, plus a visit to a Geneticist, an MRI, and I am sure some other test will pop up!  Kayla’s school ends June 19th so she will be thrown into the mix a lot more as well. A bit overwhelming, but we have to keep in mind what the doctors told us at our first visit: this is a very front-loaded condition; a TON of stuff to do the first year, a lot the next few years, but a few years from now, it will just be check-ins.

Kayla & Finn continue to be troopers throughout this whole process. Kayla loves to explain to people what  it means to be deaf. She also let me know that one of her baby dolls is deaf “just like Finn!”. She asks me almost daily what different words are in sign language and we go to the internet and look up the video ad practice (I could not find “Disney World” in sign language so I need to ask about that!). She seems genuinely interested in hearing about his doctors appointments when she gets home from school.

Finn is being amazing for how much he gets shuffled around and forced to either be awake for some tests, asleep for others, unfed for a little while for others- he isn’t on a schedule yet or sleeping through the night, but we get good stretches out of him and honestly, how can we expect him to get on a regular schedule when every single day he has a new schedule! All I care about is that he is happy and healthy and both of those things seem to be very true right now.

Image

Happy Baby : )

Posted in Uncategorized | 2 Comments

#4 (Evaluation Struggles/Insecurities)

Early Intervention came to do Finn’s evaluation on Wednesday morning. For anyone not familiar with EI, it is a free program that comes to your house and helps evaluate and then work with kids who qualify. Kids can qualify for all types of reasons from low birth weight to low income to autism to all types of other things. One of the reasons Finn will go to another program on top of EI is that they really work with all types of developmental issues where Finn’s is pretty specific and needs substantial intervention.

Anyway, so they come to the house, a Speech-Language Pathologist (SLP) and an Orthopedic Therapist (OT) to evaluate Finn in all areas to see if he qualifies. Finn’s deafness automatically qualifies him, but they have to eval all the kids anyway. So they were here for about an hour and a half and when they left I was in such a bad mood. I was irked and I couldn’t figure out why. We have been to so many doctor’s visits and I have spoken to so many experts and usually I am feeling like we are moving forward and happy to have more information. I could not figure out why I was feeling so annoyed. The SLP was very informative and the OT was great- you could tell she just LOVED babies- so what was my problem?

I think it boils down to my Hermione Granger personality- for you non-Harry Potter fans (shame on you for missing out on the best book series ever written), she is a character who, in crisis, is comforted by books and research and who is a bit of a know-it-all and does not take criticism well. I know you are all thinking no, Katie, you are NOTHING like that, but it’s true (haha).

While the Audiologist, ENT, and others focused on Finn’s hearing loss, these two were looking at him on a whole as a baby. They checked his total development (not just hear), analyzed it, and reported back their findings with suggestions. Therein lies the problem. They would go over different areas of development and make suggestions saying things like he needs to strengthen his neck and suggested Tummy Time or to make sure as he grew I didn’t just sit him in front of a TV. I would usually reply with a: “Oh yes, of course!” But in my head I was yelling “No kidding! Do I look like an idiot?! Do these people really think I don’t know basic parenting techniques!? Do they see the 4 year old I have successfully raised! Do they think Finn is behind in his development because I am not doing a 1000% PERFECT FRIGGEN JOB AT ALL TIMES!” 

Ok, I get a little carried away in my head sometimes (think JD from Scrubs). The good thing about this is that I’m aware of this perfectionist/controlling personality trait that seems to reach a crescendo when it comes to parenting (oh, and teaching, as any of my colleagues who have had me on their team can attest to, love you guys!). I am also aware that these professionals are just doing their job and trying to HELP me, not judge me. So even though I might get a bit worked up in my head, I need to be able to take the input they give me- whether I already knew it or not- and realize that they, like me, are just trying to do everything possible to make sure Finn develops into a happy, healthy kid. I know that deep down inside, I just need to remind myself of that in the moment.

Posted in Uncategorized | 2 Comments

#3 (Otolaryngology, other tests/visits)

Image

If I haven’t returned a call or message to you in a couple days, that’s because my head is spinning! Wow! Just take yesterday for example, I spoke with and/or visited 8 doctors/offices in one day. We had Finn’s Otolaryngologist (ENT) consult, then off to a Cardiologist for an EKG, then spoke to 2 ophthalmologist, debriefed with his Audiologist  AND Pediatrician, then had my own OB appointment and rescheduled my podiatrist. When I got home I had a few messages waiting for me via text, voicemail & FB and I’m sorry to admit it, but I shut off my phone, went to bed – barely having the energy to live stream the B’s while I fell asleep.

Image

This is what Finn thinks of Matt Cooke.

As I said before, we met with the Otolaryngologist, Dr. K, and she walked us through the process of how we determine if Finn can get the CI surgery- an MRI in July being the major test- and also about ruling out other syndromes that deafness can be a symptom of. That’s why he got the EKG done afterwards and why he will go to the Ophthalmologist on Monday. Problems with the heart, eyes, or kidneys combined with hearing loss can sometimes be a sign of something else. He seems to be healthy in all those areas, but we just need to make sure. 

I really refuse to let myself go down those “what if” paths in my mind. We have absorbed so much information from doctors, websites, books, pamphlets, etc. in the last few weeks- mostly hopeful, but some downright scary. The worries I could let myself put on my shoulders if I allow them could easily crush me. The big worries like what if he does have some other major syndrome, what if he can’t get the CI surgery, what if his eye sight is not strong enough to compensate for his hearing loss, what if this puts a major strain on my family – to the normal newborn worries that I had with Kayla and probably every parent has like: what is that new rash, is he sleeping enough or too much, etc. I form new questions almost every single hour of the day. I keep a list of the questions and who/where I can find the answer and try to attack them in chunks throughout the day. The questions- I allow myself to formulate those and get answers to those, but the worries- I just have to stop myself because there are just too many unknowns at this point and I NEED to have the “cross that bridge when we come to it” attitude, which isn’t easy for someone who has always tried to be 3 steps ahead of every tiny detail in her life. 

I also have to benefit of both being too busy to really have time to just sit there and think and when I do have any down-time, I have 2 kids who fill me up with so much love, it is hard to be too down. The last couple of days Finn has really started loving floor time. He especially loves if we go right down on the floor with him and really wants eye-contact. It’s cool that he is starting to fuss now to be played with and that it isn’t just for food or a diaper change. It’s amazing how early their little personalities start shinning through. 

Finn is so lucky to have such a great family. His sister dotes on him- ran off the soccer field last Sunday and laid on the grass and said she wanted to play with her baby for a little while, protects him all the time (especially from Marley when he tries to sniff him), and she can’t wait to learn ASL. Dan is the best father Finn could ask for- extremely dedicated, so passionate and, right now, Finn’s favorite (FOR NOW!). Our extended family has been amazing, everything from helping out with soccer, or driving Kay to school or watch her during appointments, offering support in any way they can. Also, so many people reach out to us every single day both in and outside of the family. We have that support network that everyone always says makes or breaks you in high stress situations. 

Coming up we have the SLP evaluation tomorrow (the Battelle developmental assessment) and we will set our speech-language goals through what is essentially his first I.E.P.- very strange to be on the parent side of this for once and not the teacher side! Monday is the eye exam, another ABR (hearing test) is scheduled for Tuesday, and ear molds at the end of the month for his hearing aids.

I will try to keep people in the loop about results we get as we get them, but again, I apologize if I don’t get back to you right away- I am going to try to be as faithful as possible to this blog so check back here if you are wondering about any updates/results. 

Thank you all for your support : )

Posted in Uncategorized | 2 Comments

#2 (Introduction to E.I.)

Had our first consult with Early Intervention (EI) this morning. We are going through the Thom Anne Sullivan Center. It was a visit to plan out the services and programs that will help Finn developmentally. 

Can I go off on a small tangent here? Since Kayla was born, it has really bugged me how many programs, play groups, and many more things cut out all possibilities of working moms being involved. I mean, c’mon, it is the 21st century and child care is still seen by society to be the role of a stay-at-home mom? Dads are often a secondary thought, though stay-at-home dads are becoming a bit more included in things (even when titles will still say “Mom-child group” it is often assumed that a Dad can go in place if he is the daytime care giver), but what about when BOTH parents are full-time employees (which, by the way, according to the Department of Labor Statistics is 59% of married couples in the U.S.!)? Where are the free library programs in the evening or weekends? Where are the parent-kid yoga classes that don’t meet on weekday mornings only? Seriously, name an activity that meets on a regular basis for kids and moms (or dads!) and the VAST majority of those will take place Monday through Friday before 3pm. I have been on this rant before, but today revved this up to a new level. 

The Early Intervention classes that will help Finn socialize with his peers and help Dan & I connect with other parents going through the same thing- the classes that will help us learn ASL and give us tips on how to utilize the EI visits we are getting at home. When do you think these take place??  One WEEKDAY MORNING A WEEK. WTH?! Why? Because of course, it is mostly a moms group and, of course, the assumption is that we’ll be able to arrange for that. When I asked the EI coordinator about how detrimental this would be if we couldn’t bring Finn, she gave me a line about there already being so much guilt on parents and to try not to feel guilty if we can’t arrange this. What that means to me is that, yup it would be better for him to be in this program and probably enhance the speech-language he is already going to struggle to learn, but in order for me to be involved, I would have to quit or change jobs- which is NOT an option that I could or even WANT to do. 

I love my job. I love teaching and I love that our family can be an example to our kids that a strong, healthy family does not have to be a dad working 9 to 5 and a mom staying home doing the house work & watching the kids. I AM NOT IN ANY WAY saying that is a bad thing!! I am just saying that I am happy to be able to help provide monetarily for my family and I psyched to have a spouse who I can truly call a partner. I mean, what the heck would I do if I had to cook dinner? Haha. Things in our house are divvied up according to who is better at them and who has less on their plate at the given moment- never on a basis of what the traditional role would have been. Never (ok, besides actually giving birth to the child).  

I am not upset with the E.I. program or people at all. I am upset that in 2013, programs, and not just extra-curricular programs, are still assumed to be the role of the stay-at-home parent because society still thinks of it that way- even though statistically, that is not even the case. This starts with the pitiful maternity leave laws we have (Oh, we can take 12 whole weeks, in which they do NOT have to pay us- SOME companies ALLOW us to use our own vacation/sick time); compared to other countries, even some VERY poor countries, this is ridiculous! (See: http://www.nationmaster.com/graph/lab_par_lea_pai_mat_lea-labor-parental-leave-paid-maternity ). 

I am 100% sure that Dan & I will do the VERY best we can for Finn as we continue, I just hope that things like this won’t slow us down. 

 

Posted in Uncategorized | Leave a comment

#1 (Beginning of Our Journey)

ImageKayla Ellie (4) & Finnegan Daniel (5 weeks).

Our Story

Those are our two beautiful, precious children. I love them more than I thought I could love anything and I, like every other parent, never wants to see them hurt, sad, or anything but perfectly happy every second of their lives.

12 days ago we got some pretty major news about Finn. The kind of news that instantly stabs you in the gut because that need to keep your kids safe and happy is threatened. Finn was diagnosed with Profound Hearing Loss in both ears. The purpose of this blog is to get info out to family and friends about Finn’s progress without having to rely on facebook, or clogging up your e-mail inboxes, and, selfishly, without having to retell things a million times. I swear I have logged more phone hours in the last 12 days than the previous 12 months combined! I’m starting to forget who I have told what and retelling things I’ve already said to other people (though, this could be because I will be -sigh- 30 years OLD Tuesday). By keeping this blog updated, people can check up on what’s happening with Finn at their leisure.

I am amazed and so very grateful for the overwhelming support you all have given us. The need to start a blog is a testament to how many people have asked us about Finn and the upcoming appointments and treatment. I hope this is a good forum for people to find out info, ask questions, and stay as involved as they want.

For anyone who doesn’t know the whole story, or has only gotten bits and pieces I’ll start at the beginning.

The Hospital

In the hospital when Finn was born he had a high Bilirubin count, he had 5 days of Phototherapy before they finally let us leave. While there he had 2 ABR (auditory brainstem response) tests done- now required by MA law- and he failed both ears, both times. I wasn’t too worried because they said that happens sometimes and there were distractions during both tests so I attributed it to that- plus between the Bilirubin concern -and later, a false positive on a test for a very rare, life-threatening fatty acid disorder- failing a hearing test was the least of our worries.

MEEI & Getting the Results

Fast forward 2 weeks later to our automatically scheduled hearing test for him at Mass Eye & Ear and we were walking in thinking this was just a precautionary and probably unnecessary test. We were still soaring from the fantastic news that all of his blood tests had come back within normal limits and our worst fears were behind us.

The test took over 4 hours because he was so fussy and when they took us into the room for the results, we were both more focused on how long and boring that test was than on the results that we thought would be fine- to the extent that when the audiologist started talking both of us were kind of packing up/half listening. Then whoosh, she said the line, “It looks like he has profound hearing loss in both ears.” At first, I didn’t react; to be honest, my first reaction was “what the heck is that?” followed by “does that mean deaf? Oh my God, I think she means deaf. Why wouldn’t she just say deaf then? No it can’t be that. Wait, Dan looks pretty upset, I think it is that…” and about 5 more minutes of those types of thoughts. Complete shock followed that as the Audiologist whisked us over the Mass General for a blood test to rule out a virus and sent us on our way with her e-mail address and telling us she’d call us in a week when we’d had a chance to absorb the information.

Sinking In

Anyone who knows me, knows just how patient I am, which is not at all. I was on the phone with my friend Stephanie (an Audiologist herself) within the hour. Yes, I am super lucky to happen to have a close friend who is a wicked smaaaht Audiologist. She helped answer some questions I was too numb to ask an hour before and over the next couple of days she was pretty much my own personal AudiologyWiki. It was she who told me about Children’s Audiology program and got me on the phone with one of their doctors within 24 hours of his diagnosis and from there we set up a consultation.

Boston Children’s Hospital Consultation

After 5 days that felt like we hadn’t taken a full breath, we met with Dr. L (I decided to edit out her name because I have not asked her permission to use her name in this forum) at Children’s Lexington office. She is amazing! One of the most calming people I have ever met. I was in full-fledged spaz-mode shooting her question after question and talking at hyper speed (I know, you are all SO shocked since I am usually so CALM) and she calmly and fully answered each and every one of the questions in a way that put us at such ease- even when the answers weren’t 100% positive. After talking to her, both of us felt a lot better. She didn’t really give us too much new information (after all, I had had 5 days to spend online researching ’til my eyeballs hurt), but she just went into detail about what we knew and set up a game plan for the next year. Just having a plan of attack made things better. She told us that unlike other hospitals in the area, Children’s does things with a team. So instead of getting sent to a million different specialist with varying levels of communication between them, Finn will have his own team including a Primary Care Audiologist (Liberman), a secondary audiologist, a Speech-Language Pathologist (SLP), a Otolaryngologist (basically an ENT), and a few more specialists.

The Game Plan

  • May 31st: Meet with SLP from Anne Sullivan Center (Early Intervention) and hopefully get referred to the Deaf/Hard of hearing program at Minuteman Arc in Concord. There we’ll be able to join parent-child groups with families going through the same and also work with some highly recommended people in the most intensive speech-language therapy that we can over the next few years.
  • June 3rd: Meet with Dr. K (Otolaryngologist) to consult about genetic testing, CT Scans, etc. to possibly find out a cause and to plan a more focused treatment. All of this needs to be done in order to see if he will be a viable candidate for CI (Cochlear Implants), which is what Dan & I are hoping for. She will also do tests to rule out any other syndromes that hearing loss can be a by-product of- this will be a huge weight lifted once we can rule that out.
  • June 11th: Back for yet another ABR just to quadruple check.
  • June 27th: Ear Molds done for the hearing aids.
  • July 18th: Finn’s first Hearing Aids- these probably won’t allow him to hear, but there is a chance he has hearing above 90 decibels (think a loud rock concert being like a whisper) and even if he doesn’t, the hearing aids could stimulate the brain and any stimulation would be helpful for development later. Over the summer and the next few months, we will go every 2 weeks or so to get new ear molds done because his ear canals will be growing so fast!
  • September-ish: At some point we will be given an American Sign Language tutor and hope to learn that as a family. Even if he is a CI candidate, we still want to learn ASL. This way we can communicate with him prior to the surgery and in the future if he is swimming or if there is a malfunction in the implant, we won’t ever have to go without being able to communicate. Also, I want him to feel included in both the hearing and deaf communities and I feel as though ASL is essential for that. If he ends up not qualifying for CI due to structural issues in his ear, then we will already have the ASL set up to use.

One Last Thing

Now obviously this is not what we expected for Finn and yeah, sometimes in an unguarded moment, I will think of something that he might miss out on in the future and it hits me hard, but honestly the most frequent emotion I have felt over the last 12 days is gratitude. We are so thankful to have such a wonderfully supportive family on both sides that love us and our kids fiercely. We are lucky to have friends that are there for us to vent to or just to spend a few hours having fun with (and I have an added bonus of counting both an audiologist & an SLP as very close friends). We are tremendously fortunate to have one of the BEST Children’s hospitals in the country for Finn’s treatment and for it being 2013 with the incredible technological/medical advancements we have to choose from for that treatment.

Well, I think that is quite enough for now! Please do not hesitate to ask any questions. I don’t mind answering anything.

-K

PS> Go Bruins! Finn’s got his B’s towel around him at all times and yes, we have the marker ready to re-draw Kayla’s playoff beard if necessary : )

Posted in Uncategorized | 7 Comments