Cochlear Implant Surgery

After our failed attempt at cochlear implant surgery in August, we consulted a new surgeon at a different children's hospital. It felt right to get a fresh start after so many glitches occurred at our first one. Our new surgeon has completed 1200 cochlear implant surgeries and the office staff was helpful and experienced.

After our hospitalization earlier in the month, I feared our October 20th surgery would be postponed, but we received all clearances in time to move forward. Afua was healthy, her strength was returning and we felt an overwhelming peace about the decision.

enjoying some pre-surgery snuggles

On October 20th, we woke up early and made our way to the hospital. While I didn't want her to have a yet another surgery, this held much promise. 

happily waiting

Everything went smoothly and her implant was tested under anesthesia. It worked well which was a relief. We received our suitcase of technology and a brief explanation by the hospital audiologist.

Before long, Afua woke up and we went home. She was very nauseous the first day but the second day she was comfortable. We stayed home from school the rest of the week and she will return to school on Monday.

a get well bear got her smiling

snuggles

we named him "the most expensive stuffed animal that includes a cochlear implant as a bonus gift"

Our activation will be November 21st and I am not sure what her reaction will be. Afua has had profound hearing loss in her left ear and severe hearing loss in her right ear since birth. She can hear some sounds from her right ear but she has never heard speaking (at least not clearly). This may be frightening or this may be exciting to her. Knowing Afua, she will display her usual determination to figure it out.

 Will she be able to speak in the future? We don't know, but we sure can dream. 

What an October

This month has been different than I ever imagined. Instead of pumpkins and apple orchards, it's been hospitals and surgeries. But that's the way life goes sometimes, especially when you parent a child with medical or special needs.

A few weeks ago, Afua began to have staring spells and we suspected focal seizures. Teachers and therapists all saw them and we made an appointment with our neurologist. they couldn't get us in for 10 days so we waited and documented the seizures.

cutie pie always ready for road trips

Before we could get to that appointment, we had to be rushed to the ER and admitted to the hospital. She was having a hard time, we just didn't know with what....

EEG leads were in and we waited for results

Within an hour, the EEG picked up seizure activity and medication was started.

At the hospital we discovered that Afua had been bleeding in her stomach for weeks and this imbalance was bringing forth the seizures. We were in good hands and a quick procedure was performed under anesthesia. 

most of the days her eyes were closed, this morning i was able to see her eyes

Once we were home, I was sure our cochlear implant surgery would be canceled, but our surgeon was comfortable with us going ahead. Flu season was approaching and the surgery needed to happen before then. We had two weeks of blissful happiness at home before the surgery.

within a day at home, she was happy again

snuggles with daddy

Today, we are home after a successful cochlear implant surgery and Afua is recovering well. In the coming days, I will tell you all about it.

Parenting a child with special needs is unpredictable. I am grateful for the timing of all of this though, we absolutely needed to know about Afua's bleeding before we had the cochlearn implant surgery. Now that it's diagnosed and under control, she is more comfortable and happier than she had been in weeks, even months. 

School preparations

With 5 kids, school preparations have to start early. This year, I will have a junior in HS who is taking college classes part time on campus. I will also have a 4th, 3rd, kindergartener and an all day preschooler.

I've especially thought about Afua and how to make a smooth transition for her this year. She will have the same teacher as last year, but new classmates. Her class also interacts with another half day preschool class and they do things like show and tell together. So here are some ways I give my non-verbal child a voice:

1. Photobook

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I made a small photobook about our summer adventures. It will go with her to school and can stay there a few weeks as she meets new therapists or support staff. It can also help break down barriers with other students who can see pictures of our Disney World trip, swimming, blowing bubbles or playing with siblings.


2. Make the medical stuff look like non-medical stuff

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Afua has a wheelchair, leg braces, a new body suit (that is great, btw) and many other outward signs that she is different. But when possible, I try to get her non-medical looking things that still do a great job. Like these shoes by Plae, that are great with AFOs but are regular looking shoes. Or sometimes a shirt with a familiar character sparks a conversation with another child. Kids are naturally curious and that is fine. My focus is on the things we can make look more typical and we love pink sparkly things here anyway:)

3. Communication

We have expanded Afua's sign language over the summer. I want her teacher and aide to know all her signs and there a few different ways we could do that. Some families take a chart like above and circle the signs their child knows in one color and the ones they can sign in another. As new signs are mastered, more can be circled.

I have been taking pictures of Afua's signs since hers are modified signs and at times look different. I hope to make a little book out of it since we will be using modified ASL as her primary communication.

4. Safety

I have many safety items on my Pinterest page. Medical alert necklaces, wrist bands or tattoos are all necessary tools for a non-verbal kiddo. yes, our school has all her information but in a medical emergency. I want things to be accessible. Especially after our cochlear implant surgery, Afua cannot have MRIs done without removing the magnet that is implanted. I have ordered a few different options that we will try over the first couple of weeks.


I would love to hear from other caregivers of kids who are non-verbal: what do you do to prepare you kiddos for school?

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. 

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.