5 Years with Cochlear Implants

This week marks five years since SJ got her first cochlear implant.

I looked back at the blog post I wrote about her surgery and it brings me to tears.

Then I look at the blog post about the time I had to fish for her cochlear implant off of the downstairs neighbor’s deck! I’m able to laugh about it now, but my heart still pounds a little just thinking about it.

Then there was the first time she muttered some hardly intelligible words into the microphone for the school Christmas program and I beamed with pride.

When I am old and grey I might remember this 5 year stretch as a blip on the radar of life. However, let me put it in writing that it was not! It has been a long 5 years. There have been ups and downs, challenges and rewards, but by the grace of God, we have made it to this very significant milestone.

What is so significant about 5 years?

1. It’s half a decade so that’s pretty big in my book.

2. She is in second grade now which is as far as you can go at her school. So this is her “senior year”. She graduates this spring.

3. The Cochlear warranty is 5 years and then you are eligible for an upgrade. You know how some people go berserk about the latest phone upgrades? Imagine that times one hundred!

For the record, the upgrade is for the sound processor. That means all the external parts which come off and on: the microphone, battery, and magnet.

A lot of people ask if she ever has to have another surgery as the technology improves and the answer is no. I remember watching promo DVDs from each of the three manufacturers that we had to choose from for SJ’s CI (cochlear implant). One thing they raved about was “backward compatibility” That means that whatever technology they come up with will work with the electronic medical devices that are implanted in her head. I know it’s very sci-fi but stay with me.

When SJ’s was implanted in 2012 she received the Nucleus 5.

The processor is hooked on her ponytail because her ear was still healing from surgery.

A couple years later Cochlear released the Nucleus 6 and the audiology world was abuzz with what all the new features would be. Some of SJ’s friends got upgrades. There weren’t that many noticeable changes except that it came with a snug fitting aqua accessory to make your processor waterproof. CI processors are like glasses. You take them off for “the three S’s”. Sleep. Swim. Shower. There are disposable baggies that you can order to allow you to swim with sound processors on, but they are pretty bulky so they’re hard to keep in place and it’s tricky to keep the right amount on hand for everytime you go swimming. Kind of like swim diapers, except you can’t just go to the store and pick up a pack if you run out.

That’s why the new aqua + was such an improvement.

The next time I caught wind of a new CI device was last year when they released the Kanso.

This is the same as the Nucleus 6, but instead of having an over-the-ear sound processor there is a round processor that attaches to your head and that’s it. I guess it’s more discreet. I was freaking out for a little bit wondering if SJ would want that or the traditional style that looks more like a hearing aid. J and I both decided to stick with the over-the-ear for a number of reasons, especially since she’ll be starting a new school and be responsible for all of her equipment. We want it to be something she is used to.

Now here we are at the end of 2017 and they just released the Nucleus 7 which is what SJ will be eligible for. The coolest part of this new CI is that it the first hearing device ever to be compatible with Apple products!

Okay this is where I geek out!!! I am a long time Apple user and it’s exciting to think about deaf people, including my daughter, being able to stream from their phones and iPads directly into their CIs and change their settings without carrying around an extra remote. The REALLY cool part though, the thing that makes me shriek for joy, is the FIND MY PROCESSOR feature.

You guys. This is a huge game changer.

Over the past five years, SJ has temporarily lost her processors dozen of times. We’ve driven back to parks in search of a missing processor. We’ve gone back to a playmate’s house searching every inch of area she may have crossed that day. Or the story I already mentioned where SJ slid her processor through the crack in our porch. It is so stressful and these things are not cheap. We are talking $20,000. Yes, I meant for there to be four zeros. The good news is if your child flushes their processor down the toilet or has it fly off on a roller coaster (I know people who experienced these examples first hand) you get a ONE TIME loss at no cost.

After all the headaches and heart attacks we always managed to track down missing processors. So we never needed the loss insurance, that is until a few weeks ago. SJ was rolling downhill in a Tonka truck (one of my kids’ favorite activities) and when she came in that night and was getting ready for bed I noticed she was missing a processor… again. Ugh. So we went out looking that night. We went out looking the next day. We talked to the neighbors and they were looking. One or our neighbor friends even had a metal detector.

Despite our best efforts the CI never turned up and I had to file a claim for our one time loss. The good news is we are months away from getting new ones anyway so I feel like we already reached the finish line.

That’s life with bionic ears. It’s not always easy, but it’s definitely a blessing.

By Natalie|2023-06-12T06:22:20+00:00November 2, 2017|Cochlear Implants, Our Hearing Loss Journey|0 Comments

The 5 Year Mark

It’s been five years since we found out that SJ was deaf.

5 years of trying to unlock a world of communication for her.

5 years of moving our family from house to house to get to a place that would have the resources that she needs.

5 years of aiming to balance a fulfilling childhood with the ground work for unlimited options.

Before SJ was even officially diagnosed I longed to be able to speak with her. I didn’t care how, but I wanted to be able to love her and teach her through words and for her to express her thoughts to me as well. I wondered what was going on in her mind. She was clearly an intelligent, independent thinker, but she had no words to piece together.

Having no time to loose I scraped together every resource I could find on ASL. That’s when I met a lady who is an ASL teacher from Denton Texas and she recommended the show Switched at Birth.

I found it on Netflix and binge watched all of season one (which was all there was at the time). I could watch deaf actors and hearing actors sign in a comprehensive way that was easy to follow. I would pause and repeat scenes until I was able to understand the signs without reading the subtitles. Eventually I could see exactly what they were signing and why they used certain signs even when it wasn’t a direct translation of the audible script. This show was an answer to prayer for me.

There were a lot of cheesy or even frustrating story lines along the way, but I craved the sign language and Switched at Birth met that need. The show was obviously dwindling down a while ago, but then last year they officially announced the final season. I watched the final episode to get my ASL fix and was completely unprepared for how it would affect me.

The first scene was with the two moms, Katherine and Regina.

Regina: Do you realize it’s been five years since the switched was discovered and we met?

Katherine: No. Has it been five years?

Regina: Mmm hmm.

Then Regina talks about how much everything has changed and announces that she is going to move out.

Katheryn says No.

Regina says-

It’s time.

Thanks a lot for leaving out the trigger warning Freeform! Of course I’m joking. This would mean nothing to most viewers (other than getting a little teary eyed about their favorite teen drama), but it represented so much for me! That’s when I realized it was May of 2012, the day of the Kentucky Derby in Lousiville Kentucky that SJ was diagnosed, exactly 5 years ago.

5 seasons of Switched at Birth is so much more than just five years of watching a show. It’s been a huge part of my new life as a mother to a deaf child. So when the characters say that so much has changed and that it is time to move on it touches a nerve.

As you know we just recently moved and in just a few months SJ will begin her final year at her deaf school. It’s a big season of closure and I am feeling all the feels. So to have closure with this show as well just seems too perfect.

In one scene they show flashbacks from season one and Emmet tells Bay that it is “the end of an era”. I know this is ridiculous, but it’s almost like God put this show in front of me for the exact time that I needed it and now I don’t need it anymore because this battle to give SJ a language is ending. We did it! She can communicate now! We are just tying up a few loose ends over the next year before she spreads her little wings. No, she’s not going to college, but close enough.

I remember when SJ said her first word. She was three years old and we were living in my brother’s basement. She wanted to go upstairs and said “up”.

I remember the Christmas that she was finally able to say words like gloves, snowman, and angel.

I remember when she said I paint pumpkin and I was thrilled that I could hear a little about what her day was like.

I remember when she said In 2018 I will graduate and then I will go to my new school. That was a couple weeks ago. Each passing milestone has brought tears to my eyes because what may be a routine achievement for some is a major victory for us.

Switched at birth was a major stepping stone for me in learning a second language which helped my daughter learn a first language, and for that reason Switched at Birth will always hold a special place in my heart.

Signing “brush teeth” when SJ was two-years-old

By Natalie|2023-06-12T06:28:56+00:00May 16, 2017|Our Hearing Loss Journey, Uncategorized|1 Comment

Meet Isabella

For SJ’s birthday this year I thought it would be really special if she got an American Girl doll and and then we could take the doll to the American Girl Doll Hospital for hearing aids. The problem is I knew we couldn’t afford an American Girl doll right now. Normally I would just buy second hand, but even then I couldn’t find one anywhere near my price range. You can hardly touch them for under $75.

So I had this wild idea to post an ISO on some yard sale sites on Facebook.

And the response was INCREDIBLE. Strangers were sharing my post and contacting friends and offering dolls left and right. I could hardly keep up with the outpouring of generosity! I had one lady send me a private message saying that she was deaf in one ear and really wanted to give a doll to my daughter. She said that she would let me choose one from the three that she owns STILL IN THE BOX! I tried to refuse her offer telling her it was too generous. How could I accept such a personal and valuable gift from someone I don’t even know? She told me it was what she wanted to do and the doll needed to be played with. In almost no time at all I met up with her and gave her a huge hug while expressing my deepest gratitude.

Then the doll waited and waited quietly in my closet until the big day final came. The gift bag was so big we had to move it from the table to the floor so that our little birthday girl could reach inside. As SJ pulled out the doll she instantly fell in love with her new friend.

I explained how her name is Isabelle and that she is going to get hearing aids. SJ calls her Isabella because she told me there is a girl named Isabella at her school who has cochlear implants.

It’s only day three of having Isabella and SJ has hardly let her leave her side. Sometimes I mistakenly call her a doll and SJ will correct me saying “She is not a baby. She is not a doll. She is Isabella.”

It’s been really sweet to watch and later this week SJ and Isabella will take a trip with Mémé (my mom) to go to the American Girl Doll store at The Mall of America.

The original idea of having hearing aids put in on the spot fizzled out when I learned that it doesn’t work that way. You have to ship the doll to the AG hospital which is not located in the store and then they will ship her back. That’s okay though, we still plan to do that and the outcome will be the same.

On top of all that I am wanting to start a non-profit for special needs girls that have hearing aids, or a wheel chair, arm crutches, a service dog etc. to be able to get a doll that they can relate to. All of these disability accessories that I have mentioned are offered through American Girl. Just think of all the dolls that need a new loving home that could be donated to girls that would otherwise never be able to have a doll that shared their uniqueness.

There is still so much that would have to happen to set up a doll sharing program for special needs girls, but I just can’t shake the idea so I do believe that it is something the Lord placed in my lap.

I want to give a special thanks to the two women that donated dolls already and for the many others that were willing to. These days “feel good stories” are hard to come by in this divisive political climate, but I am encouraged to know that there are still so many people out there whose hearts are overflowing with kindness. This whole experience has been such a blessing and I am encouraged to never stop paying it forward.

By Natalie|2023-06-12T06:20:00+00:00March 6, 2017|Hearing Aids, Hearing Loss, Special Needs|1 Comment

15 Months Old With Hearing Aids

Elle is now 15 months old and has had hearing aids for almost a month. Have you seen any of those viral videos of babies hearing for the first time with hearing aids or cochlear implants? They are always so sweet and touching. Elle was not hearing for the first time when she got her hearing aids, but she was hearing differently (and improved) so I had my video camera ready. Here is a screen shot from that video.

She never cried. She just scowled. She gave her notorious stink eyes to everybody in the room. I should have known then that we were going to have a long road ahead of us.

SJ had hearing aids when she was two and they didn’t work for her at all because she had such profound hearing loss. She quickly progressed to cochlear implants. Elle’s hearing loss is not the same as SJ’s. They are both genetic and they both have the same parents, but Elle has mild hearing loss which she gets from me. She hears sounds and even speech, but she is missing out on some of the softer sounds like “s” “f” and “sh”. So the hearing aids help with picking up on the sounds that she is missing and making the ones she does hear more crisp and less muffled.

That means that all of the girls in our family of six have hearing loss and we all have hearing devices.

Elle and I have Phonak hearing aids and SJ has Cochlear Americas Cochlear Implant.

Unfortunately they all three take DIFFERENT batteries. Go figure. Making sure we have batteries charged, changed, or in stock is just one of the many hurdles we face having children with hearing loss. It does get easier with time, but having a baby or a toddler with hearing aids takes a lot of work!

Elle doesn’t seem to mind wearing them, but at the same time she does like to mess with them and rarely leaves them alone.

After a week of struggling to keep them on we went to Hanna Andersson in the mall to get some pilot caps. These hats aren’t made specifically for hearing loss, but the pilot cap is perfect for keeping the hearing aids on while the child is still training.

The problem is, Elle can still get the hearing aids off even when she wears the cap. So it may not be the ultimate solution, but it’s a significant help. She messes with the hearing aids a lot less, when she is wearing the pilot cap.

We have had some VERY scary close calls with lost hearing aids in the past month. I think I am going to look like I am 90 years old by the time Elle is trained to wear them. That is how stressful it is. I compare it to having a child that has to wear socks every waking hour, and each sock costs a thousand dollars. Now if you are anything like me your baby kicks off or takes off their socks all the time and they inventibly get lost. It’s annoying when it’s $2 socks, but with hearing aids it’s ulcer worthy.

Time marches on though and I know that we will get through this. Elle still isn’t really talking much yet and is considered delayed at this point. I am sure all of this effort will be worth it in the long run.

As I type this Elle is napping in the other room so she is not wearing her hearing aids, but she did manage to loose one (with the cap on) before she went to bed so I guess I’ll go search the house. AGAIN. Wish me luck.

By Natalie|2023-06-12T06:18:20+00:00February 24, 2017|Hearing Aids, Uncategorized|1 Comment

Update on Elle’s Hearing Aids

This time last year I was already starting to make new years resolutions (or reservations as Z calls it). Except all of my big plans for 2016 came to a screeching halt when on December 18th Elle was diagnosed with hearing loss. I was devastated. Even though her hearing loss was shown as mild at the time we knew from experience that she was more than likely going to be deaf like her sister. No one knew for sure, but the entire team agreed it made the most logical sense.

The word that the Lord gave me for that season was NEXT, as in “Just Do The Next Right Thing”. I had so many ideas and aspirations that had to take a backseat at that time. All of my focus was on Elle and getting her the treatment she needed. The Doctors, schools, and early interventionist were calling and I was preparing for the long haul. Except as you know if you’ve followed our story, Elle does NOT have the same form of hearing loss as SJ. This news was like an enormous boulder being lifted off of me. It’s life changing for our whole family because since Elle is not deaf we don’t need to figure out a way to pay for her treatment/schooling or live near the deaf school for an unknown amount of time. We would have been fine and if that were God’s plan I would trust Him as I always do, but I am so so so grateful that we don’t have to walk through that again.

Still, I do not want to overlook the fact that Elle does have some hearing loss and it needs to be taken seriously. Her audiologist recommended holding off on hearing aids until she was upright. She can hear MOST things, so it wasn’t urgent that she be aided. In her case it probably would have been more harm than good to try to keep hearing aids on in the early months of development. Here we are a year later and Elle is definitely upright and learning to talk. So it’s time to move forward with the hearing amplification.

She has been tested several times to get an accurate reading for her audiogram so that the hearing aids can be set appropriately. Yesterday after the test I sat down with the audiologist to go over the final results and talk about treatment.

Elle can hear almost everything that a normal hearing person can. If a phone rings, or someone calls her name or plays peek-a-boo she can hear all of it. The part she is lacking is the highest frequencies, or as I was told “the crispness” of sound. That means she doesn’t hear the f, s, and th speech sounds. That is why hearing aids weren’t really important until the stage where she is learning to speak. The ball is rolling now with getting the hearing aids and we will have another appointment to get her fitted at the beginning of the year when school starts back up.

She will also continue to have speech therapy once a month per my request. She technically doesn’t fall into the qualifying parameters because she is age appropriate. She responds to simple commands and she can say uh-oh, mama, and sometimes bye bye. But because of her medical diagnosis she is automatically eligible and I said YES, let’s continue. After what I have been through with SJ, and even Ezie is in speech therapy now I feel like it won’t hurt to have more eyes on her making sure she’s on the right track.

So that’s the latest. I appreciate all of the prayers and support. I’ll post pics and updates again in 2017 when she gets her new aids. Here is a pic of her napping in the car. It doesn’t get any cuter.

By Natalie|2023-06-12T06:18:29+00:00December 8, 2016|Hearing Aids, Uncategorized|1 Comment

Having a Child With Hearing Loss

This post is made possible through the support of Cochlear. This company is a huge part of our lives and something I am very passionate about. As always all opinions are my own.

I will never forget the day we found out that our daughter SJ was deaf. The intensity of those feelings that seemed like they would always be raw have since been diluted with time. It took a good two years though to find our new rhythm.

No one in our family was deaf. So at the time all I had was a stack of books and pamphlets from the audiologist about “Understanding Your Child’s Hearing Loss.” To say it was overwhelming would be an understatement. I knew nothing about hearing loss. I honestly had never even heard of the cochlear implant before. Now I don’t know how I missed it, but it just wasn’t a part of our lives at the time.

When I did hear about the cochlear implant I thought it was brain surgery, which isn’t true. I also thought it would be better to wait until my daughter was an adult and let her decide for herself whether or not she wanted cochlear implants. However, after learning so much about how critical those early years are in language development we decided we wanted her to hear. Deaf children as early as 12 months old may qualify for cochlear implants and SJ was already two and a half years old. There was a lot of time to make up for and we wanted her to hear as soon as possible.

Like I said, we didn’t have any friends or family that were deaf that I could talk to, but I heard that my friend’s dad had cochlear implants. I was desperate to hear his thoughts. So even though he lived in another state I got his email address and reached out. He told me about his hearing loss and why he chose Cochlear for his hearing implant. In short, he explained how Cochlear has an amazing track record. Cochlear has been in operation for over 30 years. They are the global leader in implantable hearing solutions. SJ and my friend’s dad have Cochlear implants, but they also provide other products such as bone conduction implants. Cochlear has helped over 450,000 people worldwide who have moderate to severe hearing loss.

Deciding to implant a hearing device into your child’s head is not an easy decision and then deciding which manufacturer she will be committed to for the rest of her life is certainly something we did not take lightly. In the end we felt like we could trust Cochlear. She’s only had her hearing implants for 3 1/2 years now, but Cochlear has gone above and beyond when it comes to partnering with us to provide SJ the opportunity to live a life without limits.

Nearly 90% of children born deaf come from parents who are hearing (source), as was the case with our family. It’s hard to know what to do and who to reach out to. If you are one of those parents, friends, or grandparents in the middle of a hearing loss journey www.IWantYouToHear.com is an incredible resource. It can ease the sting of that overwhelming shock that you feel at first. Cochlear isn’t there to pressure you into making a decision about what to do when your child has a hearing loss. That’s something extremely personal and you have to decide what’s best in your situation. However, if you have decided that you do want your child to hear they are committed to being a support for life.

When people ask me about parenting a deaf child or a child with a disability I always say the same thing.

Being a parent is a full time job. Being a special needs parent is a like working a second job on top of that.

You can’t and shouldn’t do it alone, but luckily there is help out there. I encourage you as an advocate for your child to get a support system in place. This could include doctors, early intervention specialists, teachers, therapists, and even the team at Cochlear and iwantyoutohear.com.

Another thing I say on repeat about raising special needs children (and this applies to raising children in general) is that It isn’t easy, but it is a privilege.

Speech, language, and hearing are skills that take a lot of extra effort for these precious deaf children. But as you teach them you will learn too. You will learn how to really pause, and listen, and to not take any little sound for granted.

I am truly thankful for this journey we’ve been on. I have been connected with so many amazing people along the way. I have never regretted our choice with Cochlear. We wanted our daughter to hear and now she can. We wanted our daughter to have a life with out limits and she does.

By Natalie|2023-06-12T06:25:47+00:00July 28, 2016|Cochlear Implants, Hearing Loss, Our Hearing Loss Journey, Uncategorized|6 Comments

My Personal Hearing Loss Story

This might be a bit of a bore, but I just got hearing aids and there are a lot of people shocked to learn that I have hearing loss. Shoot, even I am a little surprised in some ways. So here is the story start to finish.

When I was a little girl my parents took me in for a hearing test because it didn’t seem like I was responding as well as I should. At the time I was diagnosed with stubborn toddler syndrome. In other words there was no sign of hearing loss.

I never struggled in school or carrying on a conversation so the idea of hearing loss didn’t come up again. In high school I realized that I couldn’t hear really high pitches that my friends could hear, but that’s not a big deal.

When I was 20 (2002) I had a bad episode of vertigo and experienced ringing and stuffiness in my left ear.

I expected it to subside, but when it didn’t I found an ENT and had a hearing test done. Their report showed mild hearing loss, but I was told there was no remedy and to just play music to distract me from the ringing. It was such a discouraging consultation considering I had no insurance at the time and shelled out $350 for the exam. I just wanted some answers. I wanted help.

Fast forward about 10 years (2012) and my daughter SJ was diagnosed deaf.

Her hearing loss is genetic, but we were told that J and I are both carriers of the genetic mutation. So it’s recessive. We have no history of deafness in our families.

In the mean time my hearing seemed worse, but I put my needs on the back burner. I thought maybe I was imagining it because there was so much focus on hearing loss in our home. I was always misunderstanding people or not hearing them at all. One day my sister in law asked if I ever considered getting hearing aids. I dismissed it because compared to SJ I was hearing just fine. I was in denial.

However three years later (in early 2015) I bit the bullet and decided I would have another hearing test done. I went to a GP who referred me to an audiologist. The audiologist tested me in a sound booth and the results showed that I had moderate to severe hearing loss on the left and mild on the right. I had so many questions for the audiologist, but she had no answers. She said that I needed to see a different doctor. They told me they would call me and they never did. I could have followed up and been more assertive, but I had three children plus one on the way and again I put my needs on the back burner.

After Elle was born she failed the newborn hearing screening. I swore she could hear because she flinched and startled to noise. Yet she failed the screening over and over again. Sadly, I knew this meant she would eventually be deaf like her sister. HOWEVER, the genetic test (which takes about 6 weeks for results by the way) showed that her hearing loss is different than SJ! Her hearing loss is still genetic, but it’s generally a mild hearing loss. None of us saw that coming. The geneticist said the only way this is even possible is if either the mother or father also have this hearing loss. I voluntarily suggested that it was me. Basically between SJ’s DNA and Elle’s DNA they uncovered the missing link to my hearing loss mystery. So they ordered a genetic test for me just to be sure. I got it back a couple weeks ago and it confirmed that I do in fact have hearing loss due to genetic mutation (I know that sounds weird). I asked about why it didn’t show up as a real problem until later in life and so far no one has an answer for that.

Regardless, now that I had it in writing with DNA evidence I was ready to do something about it. I went back to the same doctor, and was sent to another doctor, and then to the audiologist and was tested AGAIN and FINALLY got my hearing aids. So even though it looks like this diagnosis and treatment came from out of nowhere it’s kind of been leading up to this point for a long time.

So that’s the back story. I have a daughter who is deaf, a daughter who has mild hearing loss, and between the two of them I finally recognized that I have moderate hearing loss.

Of course everyone wants to know if it’s related to gender at all, but it’s not. That part is completely coincidental.

I am still getting used to the devices, but I do feel like I can hear a lot better with them. That does not mean that I hear perfectly though, so please be patient with me if I am not understanding or if I have to ask you to repeat yourself. Thankfully I have been reminded by several professionals that no one hears perfectly so I don’t need to feel bad.

This whole hearing loss journey has been a wild ride, but I at least we’re getting somewhere.

By Natalie|2023-06-12T06:19:00+00:00July 1, 2016|Hearing Aids, Hearing Loss|3 Comments

The First Day With a Hearing Aid

Yesterday was my first day with my new hearing aid. As with most physical therapy treatments you have to press through a lot of challenges in order to get your body to respond in the way it is supposed to.

So it’s been a rough 24 hours (minus when I slept). I knew there was skill involved in learning to listen with a hearing device because of having a daughter with a cochlear implant, but I assumed since I can hear and was born hearing that I would be exempt from such a difficult transition stage. I was wrong.

It is way more challenging than I ever imagined. When I put the device on yesterday it sounded like the world was on “speaker phone” mode and I don’t know if you have ever had your voice echo when someone else has you on their speaker phone, but it’s annoying and that’s how it was at first. Luckily, the initial reverb didn’t last too long. However everything still sounds like I am in a cave or something. It’s not natural. Have you ever talked while plugging your ears? If not, go ahead and try it. Do you hear your voice muffled inside your head? That’s what my voice sounds like all the time to me right now. I feel like I should be whispering because the sound of my voice is so loud. Some things sound close to normal, but there are thousands of small sounds that appear to be amplified. This is what happens when you go without typical hearing for a while (or have never had it). Your ears interpret all sound the same. It’s all coming at you equally and your brain gradually decides what is needed and what to filter out.

One example I can think of experiencing this phenomenon was when we moved into our first home which was a few miles from a railroad track. I will never forget that first night while our mattress was still laying on the floor of a room full of unpacked boxes. I thought the train sounded like it was running through our house and rattling my brains. It was SO loud. Oh no. What have we done? I thought. I wasn’t sure how we would ever sleep with the train and it’s notorious whistle so close by. However, the sensation didn’t last. I am not sure how long it took, I just know that despite the trains schedule and location remaining the same I no longer heard it. My brain filtered it out. That’s what is supposed to happen with hearing aids. I even asked my daughter’s audiologist for second opinion. Are you sure it’s not being amplified louder than it should be? I shouldn’t be able to hear the toilet paper slide off the roll. She assured me that my case was no different than the others and I just had to push through and allow my brain to file away that distracting background noise.

It can be debilitating though. This is what it is like running a simple errand.

When you walk to the car you hear footsteps on the pavement and the grass. You hear wind (the way it sounds on a phone or home movie, very loud and distorted). You can hear your keys jingling and cars driving by.

As you get in the car you hear the door unlock, unlatch, and the seatbelt slides and clicks into place. You hear the engine start, the AC starts, there is lots of beeping and clicking with putting the car into gear or using the turning signal. And if you are thinking that you already hear all of those things, you are right. But do you always notice them? Do they distract you? Would you consider them loud and intrusive?

As you drive you have some coins in your console that keep sliding back and forth with every turn and slope. You grab a bottle of water and the plastic crumples and sounds ear piercing. You hear the cap unscrew, you hear the water go down your throat, then you hear yourself put the cap back on and return the water to the cup holder.

When you arrive at the store you hear the music which sounds normal, but the hangers on the rack sound extremely loud, a child is playing with a toy in the distance and you hear that. You feel like everyone that is talking is close by, but they are not. When you pay you hear yourself get out your wallet and all the items inside your purse starts banging up against each other like some kind of violent mosh pit. You hear yourself open the wallet, and I kid you not, you hear the debit card slide out of the wallet. You hear the beeping of the cash register as you normally would, but the magnitude of the stapler that the employee uses sounds like she must have used an industrial strength nail gun to combine two receipts. You flinch and hear yourself clasp your purse and grab the plastic bag which never stops crumpling loudly up against your leg.

Are you tired yet? I am. It sounds like I must be exaggerating, but everything I have read and all the professionals I have spoken with tell me this is just how it goes at first. This article form Starkey.com was really helpful and explains everything so realistically. They say “the learning curve can take anywhere from six weeks to six months. Success comes from practice and commitment.” So I am going to keep at it. Many of the articles I have read describe the adjustment time as tiring and disorenting which are the exact words I have used.

I go back in 2 weeks to see my audiologist and see how I am coming along. It may not be perfect by then, but it should be much easier. I hope. Feel free to ask me any questions. I have said so much, and yet there is so much I haven’t covered. Thanks for the prayers and encouragement.

By Natalie|2023-06-12T06:19:14+00:00June 15, 2016|Hearing Aids, Uncategorized|2 Comments

Baby Elle 5 Months

Here we are on the tippy tail end of Aril and Elle is closer to 6 months than she is to 5, but I haven’t posted an update yet.

At 5 months she weighed 17 pounds. She is in the top 25th percentile for weight. Maybe that’s why she isn’t very mobile yet.

The day she turned 5 months (April 10th) it snowed, which is crazy, but as soon as the weather cleared up a little I took her outside. I wanted to get a picture of her in some winter clothes that she wouldn’t be able to fit in next year.

Unfortunately Elle was captivated by all the sights, textures, and sounds of the outdoors and she didn’t give me and my camera the slightest glance. I eventually gave up. The perk of being a photographer is that when she woke up from her nap with a big smile on her face I grabbed the camera again and started shooting.

She rolls over now. Mostly back to tummy and she can push herself up a lot more than what you see her doing in this photo.

She still has blue eyes although I can already see some pigment coming in. The jury is still out on whether they will be brown or green though.

Elle continues to do well in occupational therapy and speech therapy. She is also still exclusively breast fed and obviously not missing any meals (I hear that comment a lot). So everything is going great with baby Elle. She could not be loved anymore than we all love her, that’s for sure. She is precious and I am beyond blessed to be her mom.

By Natalie|2023-06-12T06:34:08+00:00April 29, 2016|My Life, Speech Therapy|1 Comment

Create Your Own Speech Therapy Book

When SJ was first diagnosed with hearing loss I was encouraged to create an experience book. Books are a great resource for speech delays anyway, but a book that has pictures and experiences that your child can directly identify with is even better.

I try to make a new one every year so that we can expand on what she has learned. Here is a look at how easy it is to create and implement.

First Words

The first book was the most basic both in it’s design and the words that were in it. For this one all you need is

4×6 photo album
Pictures of your child or objects that are familiar
Index cards to spell out the words you are encouraging the child to say

I chose words like hurt along with a picture of SJ with a boo boo

or sleep with a pic of her sleeping.

Trash is a word you may not find in your typical “first words” book, but trash (or some people say garbage) is a word we use everyday. That’s the beauty of customizing your own language book. You get to choose what to put in it.

When we first made this book we weren’t even ready to start with saying words we were mostly working on the ling sounds like “Shhhhhh” for sleeping or “mmmm” for eating. Eventually she learned all the words and it was time to make a new, more advanced book!

First Sentences

At this point she was learning the names of everyone in the family

Along with the places we visited frequently (like the grocery store, museum, or school).

When we started the book we kept it very simple and I had her repeat the words “Breakfast” “Lunch” “Dinner”. Eventually she started saying sentences and so we could expand to say “I see my teacher”. You can show a picture of a friend or a teacher, but it’s more meaningful to the child when they see their friend or their teacher.

Early Reading and Abstract concepts

She got this book for her birthday and she absolutely LOVES it. For this book I wanted to put in some sentences that she could read on her own because she is learning to read now. So for example “I love my family” is not expanding her speech because that is a sentence she has been able to say for a while now, but it’s simple enough to read. SJ loves to point to and sound out all the words.

Then I included parts that are a little more difficult to read, but they are words and ideas that I hope she will start to have a better understanding of. For example, this page says “Sometimes I am sad, but I still obey mommy and daddy because that is a good choice. If I make a bad choice I say I am sorry. Mommy and daddy love me when I am happy or sad. They will always love me.”

This can certainly apply to any child, not just special needs. My oldest son has recently requested that I make a book for him and I plan to do that next.

Now let’s look at the progression

If the first book says “School”

The next book says “I go to School at Ohio Valley Voices”

Then the next book says “I go to School at Ohio Valley Voices in Loveland Ohio”

It’s been so rewarding to watch SJ learn to communicate. I am really grateful that the idea for this was introduced to me and I hope it can be helpful to others.

Both of the hardback photo books shown here are from Shutterfly and I cannot recommend them enough. Right now there is a promotion going on for a free 8×8 photo book just like the one I’ve shown on here. The coupon code is ” SPRINGONIT “It expires tomorrow (March 22, 2016) so I know that’s not much time, but I will tell you that the Shutterfly website makes it so easy to throw these books together, so it doesn’t take much effort and they turn out beautifully. If you miss this offer you can catch the next one. Just Like Shutterfly on Facebook or sign up for their email to be in the know on the latest deals.

Your child will love seeing their pictures in print and you will love hearing them say all the new words. It’s a simple, but wonderful tool all the way around.