It’s been four years since SJ got the priceless gift of her very own American Girl Doll.

You can read the whole story here, but basically I wanted to get her a doll that could have hearing aids but knew there was no way I could afford an American Girl Doll. So, I posted this ISO on Facebook Market Place and received an overwhelming response.

I was just praying I could find a USED American Girl doll that I could afford and God provided above and beyond that! I received an American Girl Doll still in the box from a stranger which I was able to gift to SJ on her birthday.

It was the best birthday gift ever! The first year was really sweet and my mom brought SJ and Isabella to the American Girl doll hospital at the Mall of American in Minneapolis and she got hearing aids.

It could have ended there and it would have been worth it, but the fact is four years later she still loves her doll. It’s been such a treasure to watch her grow and change and still cherish Isabella. She’s 11 now and just got some new accessories for her birthday.

I know this imaginative play won’t last forever so I am documenting it while I can! Here are some of my favorite snap shots of SJ and Isabella throughout the years.

Look at how little SJ was when she was 7! Someone get me the tissues!

Here are a few other special memories with Isabella.

Isabella doesn’t go with her everywhere, but she’s been fortunate enough to travel quite a bit in her four years.

She’s been known to wear Elle and SJ’s old baby clothes.

Oh and you’ve gotta love the bows. 

They’ve had their fair share of matching outfits.

The dress in this Christmas photo was actually SJ’s when she was a baby.

Isabella was there when the world shut down and the kids suddenly had to do distance learning (SJ’s on a zoom call in this photo).

Spotted this scooter at a yard sale this past summer.

When you homeschool sometimes you have to do your school work at the car dealership while your mom is getting the oil changed.

SJ has made so many cool things for her doll and I wish I photographed more of them but here is a stage made out of a pizza box and the mic stand is adjustable!

I wish you could peek inside and see all of the details of this little bedroom that SJ made.

This year Elle got a My Life doll and so that’s been a lot of fun for these sisters.

Up in the tree house

Reading time!

Time for bed.

It’s been a fun four years.

We’re Big Wonder Fans!

Z and I both read Wonder over the summer and fell in love with Auggie, his family, and the characters that R.J. Palacio created in her New York Times Best Seller.

It really hit home for me on a  personal level because not only do I have a special needs child, but I also have hearing aids. When Auggie describes his experience of getting hearing aids for the first time and hearing the white noise become quiet I knew exactly what he was talking about. I’ve experienced that! The part about genetics was really insightful too and describes our situation well in terms of deafness.

Z really loved the book and it’s perfect for his age group (he is 10). A lot of people have asked me about if there is any questionable material for younger children. There were a couple things in the book and movie that involve a tiny bit of kissing (the older sister and her boyfriend) or a secular worldview implying that what we experience is all because of the universe. None of it was heavy or pushy at all, but if you are really sensitive to stuff like that, as I can be, it’s nice to know about it ahead of time. Also, the book talks briefly about girls who are flat. It was so subtle I wasn’t even sure if they were referring to girls chests or not, but it is in there. Nothing shocking I can assure you!

We loved the book so much Z was the one that begged me to check out Auggie and Me.

Wonder is written from different perspectives throughout the book. Auggie and Me is not a sequel but it gives more side stories that are related to the book. I personally LOVED Auggie and Me. Julian’s story was incredible. It was so heartfelt and deep. I won’t give any spoilers but it brought up some great discussions for Z and I. Some of the parts he brushed over and didn’t really get as emotional about allowed me to explain to him what happened in this part of our world’s history, why it was so horrific and why we need to remember the lives lost.

Okay, next up is Wonder Boy.

When I saw that 20/20 was doing a segment about a real boy that had the same kind of cranial deformities as Auggie I knew I wanted Z to see it. I warned him that while the movie was fake and made up by Hollywood costumes and makeup, the disorder is real and this is what it really looks like to be impacted by it. The show was extremely touching and informative. I learned a lot from watching it and if you have some kind of cable provider you can still watch the segment online. It is really good!

Lastly, Z and I had our annual mother-son outing on Sunday. We’ve been counting down the days until we could see Wonder on the big screen.

 I’ll be honest, the whole movie from start to finish was one giant tear fest for me.

I cried probably a dozen times. I don’t think other people will cry that much but it really affected me. The very first part is about Auggie going to mainstream school for the first time in his life and how nervous his mom is. In just 9 months I am going to be in that same position sending SJ to mainstream school for the first time in her life, so that scene hit me like a ton of bricks. I did laugh throughout the movie too and I clapped at the end with the rest of the audience in our theater. Z and I both agree that the book is better because there is just no way to cover all the material from the book in two hours. In fact, the hearing aids are one of the things they cut out. It was still a good representation of the book though. They stayed true to the original story.

At the end of the movie Auggie is graduating and his parents (played by Julia Roberts and Owen Wilson) are sitting in the crowd. Z leaned over to me during this part and says Hey! There is the author! I turned toward him a little bothered that he was interrupting another crying scene. What? I whispered back. It’s RJ Palacio in the movie! Z said pointing to the screen. Then I saw her too. I was impressed that Z picked up on that. R.J. Palacio’s photo is in the back of the book and she is interviewed in the 20/20 segment, but I would have never noticed her cameo appearance.

So I googled it later and wouldn’t you know I can not find a single shred of evidence that the author of Wonder makes a cameo appearance in the movie. But check out these pictures and tell me that’s not her!

This image released by Lionsgate shows Julia Roberts, left, and Owen Wilson in a scene from “Wonder.” (Dale Robinette/Lionsgate via AP)

RJ Palacio the author of Wonder

If it’s not her, then it’s a look-alike that’s for sure!

Between book one, book two, the Wonder Boy and the movie, I think it is evident that we are pretty big Wonder fans. When my other kids are a little older I plan to introduce it to them too! 

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. 

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.

We are about 10 days away from SJ having her cochlear implant activated. Right now SJ has the internal device, but that doesn’t mean anything without the sound processor, which is typically given 3 weeks after implantation. When scheduling the activation the Doctor gave me several dates to choose from. I had to pause for a moment to let it all sink in. I am selecting the day that my daughter will hear. They actually call it her hearing birthday. She will start hearing from that day forward. I chose the soonest date possible of course!

Am I excited? Yes, absolutely, but to be honest I’m guarded.  This isn’t the first time I have expected SJ to hear. The first time was after the initial sound booth test. I felt confident that she was not deaf. We left the ENT’s office doing our own hearing evaluations. We would ring bells, shout her name, look for reactions as airplanes flew overhead and she never responded. One time I went in the bedroom where Z and SJ were still asleep and I banged some pans together loudly. Neither one of them woke up so that experiment was kind of a wash. Then we got the hearing aids and when they turned them on they said it would be gradual because they wanted her to be able to adjust to hearing. Sometimes I thought I saw her making progress with the hearing aids, but still nothing significant.

I feel like I have spent the past 8 months trying to catch flecks of dust floating in the sunlight. I want to reach for something and really be able to grab onto it. I want to know that she hears and I am hoping it will not take extensive detective work to be able to recognize it. J and I have been given a lot of information from her team preparing us for the realistic and even then there has been some confusion about what to expect when they turn the implant on. In order to alleviate some of this confusion for us and everyone else I emailed her Doctor. This is part of what she said in response.

The first day is different for everyone.  When I turn on the implant,
she may hear beeps, bells, or whistles at first.  Or she may hear
voices that sound more like Charlie Brown’s teacher or mushy speech,
or it may sound close to normal. I would suspect that our voices will sound
more like Charlie Brown’s teacher for the first week or so. Then,
after she is wearing it consistently, voices and speech will sound
more normal. 

She will be able to hear soft sounds, voices, airplanes-all on
the first day. No sound will be too loud, because I will control that
volume on the implant.  Her “hearing” with the implant will be normal
or close to normal when the CI is on.  She may not be able to
understand what you are saying right off with the implant although she
is technically hearing you, but the understanding part will follow
shortly.

Right when I turn the implant on, she may have an awesome reaction,
like pointing to her ear, laughing, etc. or she may have a not so
great reaction, like crying.  Like I said before, every child reacts a
different way.  Basically, expect any reaction as a sign that she is
hearing!

So that is what you can expect from SJ on her hearing birthday, and you can expect me to be a nervous wreck. I would say I don’t want to get my hopes up, but to quote one of my favorite lines from Monk “That’s what hopes are for.”