The surgery that almost wasn't

We are just a couple of days away from Afua's cochlear implant surgery. The last several months have been surgery and sedation free. Our days have been filled with therapies and new equipment, but relatively speaking we have enjoyed a normal, even lazy summer. Now it's time to switch gears as we know the next week will be different in a nervous/exciting way.

We stayed home last Sunday to avoid germs at church and watched a live streaming of the service.

Last week, we had a call that started a bit of craziness. Our Dr wanted to change the surgery date to accommodate another emergency procedure. I tried to come up with a plan how I could reschedule a bunch of appointments, FMLA leave for hubby, childcare etc. Ultimately it was not needed but boy did it get me worried.

Then, last Friday, I received another phone call: our insurance denied the surgery at the last minute after finding a convenient loophole in our policy. I cried....and that's all I can say about that nicely. It was devastating. Crushing. Awful. Terrible. Insurance runs so much of our life already. They decide what equipment we can have, what doctors we see, what medications we use. They tell us how many therapy sessions she needs without ever having met her. And now they were going to tell us Afua could not have a chance of hearing? Ugh. Good thing Eric was home and he went into "hero mode" and I could curl up on our couch and cry. 

Jake and Afua watching tv and holding hands...inside her new ballpit:)

The weekend had us praying for a favorable outcome. Our last hope was our secondary insurance policy that normally just helps us with co-pays and such. We requested that they would take the role of our primary insurance. Within a day (today), they agreed to cover the procedure, the implant and the follow up care!!! An answered prayer for sure.

At the county fair: peekaboo with a chicken

Many children are hearing impaired and they do not wish to have a cochlear implant. Sign language is a wonderful communication method and as you can watch in this Nick News documentary, different families arrive at different decisions. Some children wish to have it but the cost is prohibitive and that is sad for those who truly feel this option is for them.  Afua NEEDS this. She can't sign effectively because  CP affects her hands. She can't use most other communication devices because they require a person to hear. She is so aware of the world around her, we see her make connections about our life all the time. So we are relieved we get to at least try giving her access to speech sounds and enhance her ability to communicate with us. Our expectations are realistic and cautiously we dream new dreams for her.

And....we got to meet Mandisa!!! She was so awesome with the kiddos.

Would you please pray for us this week as we prepare for surgery and after care? Specifically that she would be able to come home the same day and that she would have a smooth recovery? For Mommy and Daddy's hearts as handing our sweet girl to medical professionals is always a bit unnerving? For the siblings as they also are a bit anxious about all of this? Thank you friends!

Green light

This week, we had our final consultation before Afua's cochlear implant surgery. I had my questions memorized and went through them one by one. We talked about recovery, future MRIs (the magnet needs to be removed or specially covered to have an MRI) and what the follow up therapies will be like. 

Her surgery will be next month so we have a few weeks of summer to enjoy. After that, she will be recovering and then her CI will be activated. 

We have big dreams for Afua and feel that this is the best decision for her. At the same time, we know this doesn't cure her hearing loss, she is perfect the way she is and we will continue to teach her sign language. 

Decisions like these aren't easy, but once we have peace about what to do, we move ahead with excitement. 

Product Review: Hearing Halo

Afua has been using hearing aids for 3 months now. Developmentally she is very much like a curious toddler; pulling on the hearing aids and putting them in her mouth in 3.5 seconds. We lovingly call her a ninja, she is that quick :)

This lead me to a search for different products that help children keep hearing aids on. She has been wearing a hat over the winter but it's finally warming up here so a heavy winter hat has to go.

I saw the Hearing Halo on  ETSY and I ordered two different colors for Afua. It looked breathable and something Afua couldn't take off.

It arrived in 2 short weeks and we tried it last weekend. Afua did not try to take it off and it seemed very comfortable. 

I was trying to take a picture as she is grabbing my phone :)

Last Monday, I sent it to school along with her hat and waited for her teacher and aide's verdict. They seemed to like it and have used it daily since then. At home, it gives me the added security that her hearing aids don't end up in her mouth, a potential chocking hazard. The product is well constructed and it is easy to clean. 

Keeping hearing aids on a 4 year old who is developmentally a curious toddler is a challenge. Most products are babyish and it poses an issue with dignity. Hearing halo is an excellent choice for us as it different from the baby products on the market. And I know as Afua gets bigger, I can order a larger size that does the job well.

Thanks you Hearing Halo for making such an awesome product for my girl!

Disclaimer: I review products that I feel are beneficial for my family. Some products I receive for free to try, others I have purchased to try myself. Either way, opinions and experiences presented are 100% mine.

No words needed

Afua is non-verbal. As her mom, I long to communicate with her. When she cries, I would love to know what's wrong. The more I get to know Afua though, the more I understand her body language and how she communicates with us. Looking through recent pictures, I could tell exactly how Afua was feeling.

Mom, I'm bored....where are my brothers and sisters? (This was spring break week and Afuas siblings spent a few days at in-laws)

Brother....I am not letting you out of my sight. 

Ahhhh...I got my sister back

More tickles!!!! 

Mom...I'm waiting for my lunch. 

Afua is teaching us that words aren't needed to convey feelings and thoughts. We have learned that sometimes "talk is cheap" and words can actually get in the way. Afua communicates with her whole self, she is communication. And part of my journey has been to learn her unique language. We celebrate each time she uses ASL and learns a new sign. And we appreciate all the ways that she has found to communicate with us.



Related: How to Keep Your Non-Verbal Child Safe

Finally!

For months we have processed Afua's hearing loss and how we should proceed. For months we have hoped for someone to give us a roadmap from the medical community but we realized that there were many different choices and many different opinions. And the best thing we could do was to pray and go with the path that brought us peace.

Earlier this week, we met with our "team" and explored the option of cochlear implant once again. Afua's CT scan makes her a perfect candidate for the implant. I was hoping we would find out also the reason for her hearing loss and we did narrow it down a bit. 

Currently the best option all around is to place a cochlear implant into Afua's left side and keep using a hearing aid in her right ear. This would allow Afua to hear speaking and begin to recognize more environmental sounds. 

The outcome of the cochlear implant will depend on so many different factors. Afua could learn to speak, it could enhance other communication tools and it could improve safety as she will hear more noises around her.And no matter what, it will improve her quality of life, which is what all the surgeries to date have done.

We will start the process next month and depending on insurance the process I surgery can be quick or slow. 

Most importantly, we have passed our fork in the road and once again are moving forward with a plan.

rock and hard place

What I have learned in the 2+ years that I have been an adoptive parent and 8ish months I have parented a child with special needs is that sometimes there isn't a good choice to be made. Sometimes you find yourself here:

image source

We have had numerous discussions between Afua's audiologists (school and private), specialists, teachers, pediatrician and therapists. Each has a different opinion about Afua's hearing loss and how we should address it. And with each strong opposing opinion, my Mommy guilt goes up a notch. The truth is, there is no perfect solution to this. 

Afua has the choice of keeping her hearing aids turned up as they are, which causes a lot of squealing and very little benefit hearing wise. We can continue to work on modified sign language or move to other communication devices (that she can't hear but could possibly learn to  make connections without hearing). The other choice is to move to the process of getting a cochlear implant (one side or both) which could give her the ability to hear us speak to her, but that wouldn't guarantee that her communication issue would resolve. She may still need ASL or a communication device to make her needs known. 

I have read opinions that children should get cochlear implants as soon as possible so that they can have the best chance of speaking. So it feels like an invisible clock is ticking. On the other hand, there is an opinion  that children should not receive a cochlear implant but they should make that decision as adults. I look at both sides of the argument and I feel the pressure. I am caught in between the proverbial rock and hard place. 

Where we are today, is that Afua has no real way to communicate with us other than crying and other behaviors that are not positive. Many of these she has outgrown but some remain. She can sign "more" while she eats and with help, she can sign "eat". Other than that, she is often a passive participant in life and I long for her to take initiative so often. 

This decision is one of many that parents of children with special needs struggle with. We look to modern medicine to help our children and remove barriers standing in their way. But we also know there is a price to pay when making these decision. Every surgery carries a risk, every procedure is costly in more ways than one. 

If you are wondering how to support a mom like me, my advice is: just listen. Friends, acquaintances, medical professionals, teachers....be gentle. We are so hard on ourselves and second guess every decision. I know the passion is there and you can see exactly what we should do. But  let us explore every choice, let us allow the information to sink in and let us pause the process for a while. Because we are the ones who are ultimately responsible for the outcome of the decision. This is one of the hardest parts of parenting a child with special needs. 

Busy Life

I have neglected my blog greatly and it's not because there is nothing to report. I wrote a post in November and just couldn't hit "publish". It would make the news too real.

During a minor surgery, Afua had a hearing test done under anesthesia. The news was not good and it was unexpected. Afua has profound hearing loss and according to the experts has not heard people talking to her. Ever.

Nothing changed in her world with the news, but for us, it seemed really hard. I have friends who are fluent in sign language, who would not consider being hearing impaired a huge special need, but we felt so out of place. I was sad because she has never heard me say that I love her. Our lullabies are probably vibration and mumble to her. And we KNOW she loves Frank Sinatra....were we just dreaming this? And this would be yet another barrier between her and the rest of the world. My heart was so heavy for weeks as I processed this.

We started the process for hearing aids and we will get them soon. Ultimately she may need the cochlear implant and that is what we are planning on. That way the hearing aids will not be a huge disappointment if they don't help.

December came and Afua had surgery to correct her eyes. The difference was amazing!

Her eyes were still swollen in the "after" picture on the right, but they were both looking in the same direction!

December was full of Christmas activities after the eye surgery.

Lots of family time, bonding and making memories. We constantly dream about the possibilities with Afua while loving her in the moment, just as she is. If nothing changes, she is a precious treasure. But we know we have only seen a tiny fraction of her potential. Walking this journey humbles us, stretches us and teaches us each day.

I will end this with a song I recently found. It is perfect for where I am today. If you don't see the video here, the link is http://youtu.be/B9RZ4V34WhY