Lately, Sonya has been loving her Ruby Bands cochlear implant swim head band. It has the same design as the other Ruby Band cochlear implant headbands, which we adore, but is made from swim suit fabric and the pockets are slightly larger to accommodate the waterproof sleeves. (Note – if you are going to use the headband with a swim hat, be sure to choose a back tie). Sonya is wearing the front tie option above. We will definitely be using this on our trip to Italy next week!
You might notice that we are no longer using the waterproof sleeves. I talked about our struggles with it here. The sleeves are just too bulky and huge – and they don’t fit when coupled with the compact batteries we use for Sonya. We decided that it was more important that Sonya hear comfortably when doing water activities rather than struggle with heavy equipment that she ultimately refuses to wear and winds up swimming without sound. So far (fingers crossed) we haven’t had any issues without the sleeves. The cochlear implants (Nucleus 6 in our case) is water resistant. Since her water activity is relatively light, we simply place the damp processors in our Zephyr dryer overnight. They are fine the next morning.
In addition to the swim headband, Sonya has worn (and stained) her Polarn O. Pyret baseball cap. It fits snuggly on her head and keeps her processors in place on days when she just doesn’t feel like wearing a headband (and I just don’t feel like freaking out over a lost processor somewhere between our house and Central Park). Plus, she probably thinks she looks as cool as I do in my Yankees cap 🙂
P.S. Some additional fashionable cochlear implant / hearing aid solutions and travel tips for kids and babies with cochlear implants and hearing aids. Also, check out the wonderful book Sonya is holding in her hand in the top picture above: Harmony Hears a Hoot . It was written by a speech pathologist and is a great resource for kids and parents on how to address hearing loss in a mainstream school setting. We love it!
Sonya is attending CampedUp, a unique camp where kids with hearing loss can socialize, gain self advocacy skills and have an awesome time!
Sonya (bottom right) is with her buddies and counselor Brandi Prell at CampedUp, a summer camp located in Manhattan for Cochlear Implant and Hearing Aid users.
“Thanks, but we don’t do playdates with other deaf kids.”
These very painful words believe it or not came from a mother who, like me, was raising a baby with profound hearing loss. She explained that she didn’t want her child to be held back by other children who couldn’t hear.
Thankfully, we also had Ketty Baalla in our lives. Ketty has been Sonya’s Early Intervention Service Coordinator for almost three years. More than that, she has been a friend who has personal experience raising a child with hearing loss. This past fall, I asked her about summer activities she would recommend for Sonya. Her response?: CampedUp, a day camp for children with hearing loss.
“But shouldn’t we focus on programs with hearing children?” I asked. My fear that this mom was right had made its way in.
Ketty and I spoke on the topic for an hour. Her experience with CampedUp was not limited to her work as a service coordinator for kids with hearing loss. Her own daughter had attended the camp and it had been life changing for them both. “After CampedUp, my daughter had great interest in her devices,” Ketty told me. “At audiologist appointments, it was my daughter – not me – who asked the majority of the questions. She gained a confidence and interest in her devices she didn’t have before. She had taken ownership of her hearing loss!”
I signed Sonya up that afternoon.
For two weeks, Sonya has attended the camp. I can’t say enough positive things about it. Created and operated by Hearing Loss Specialists, CampedUp provides a unique community in which children like Sonya can socialize with other hearing aid and cochlear implant users of different ages, gain self advocacy skills and above all have a wonderful time.
“We recognized the need for kids to have an opportunity to form relationships with other children with hearing loss, outside of a therapy setting,” says Dana Selznick, co-Founder of CampedUp and a Hearing Education Specialist. “We wanted to create an environment where campers can play, create and build a community among their peers starting at a young age. Brittany Prell [CampedUp’s other Co-Founder and Hearing Education Specialist] and I grew up going to camp and our experience helped shape who we are today. We wanted our camp to have the same impact on their lives as it did ours.”
So far, Sonya has enjoyed projects such as marble painting, creating a color changing chameleon, meeting a “real life” princess and a super hero, decorating paper fans with bubble art and making homemade bouncy balls. The highlight was a reptile show!
Note that the reptile guy is wearing an FM around his neck which is synced to all the kids’ devices. “All the kids love seeing that they are not the only one wearing an FM,” Dana says.Can’t believe this is my kid. Brave girl!
While Sonya attends half days, the camp goes from 9 a.m. to 3 p.m. each day. Kids enjoy a morning snack and an afternoon “fun with foods” activity (yesterday they churned butter!). A hot meal is provided during lunchtime. Each afternoon kids play water games on the roof of Stephen Wise synagogue and this week (among other activities) will meet children’s book author (and speech pathologist) Fara Augustover, author of Harmony Hears a Hoot, a story about Harmony an owl who has hearing loss.
Sonya, a turtle, and her counselor/Co-Founder of Camped Up Dana Selznick
“As a hearing education service provider during the year, I typically see these campers in a mainstream school setting. It’s great to connect with the campers outside of an academic environment and to see them build friendships with other kids wearing cochlear implants and hearing aids. I love to see that ‘aha’ moment, when they realize that there are other people just like them.” – Brandi Prell, CampedUp counselor.
One of the most valuable lessons CampedUp teaches to its campers is self-advocacy. These skills are interwoven into the activities campers do all day long. “We foster conversations among our older kids about their hearing loss and talk about how they describe their hearing loss to their hearing friends,” explains Dana. “Campers share what they like about their listening devices as well as challenges that they may have experienced, so that the campers can help each other problem solve solutions.”
For CampedUp’s younger kids: “We read stories about characters who, like them, have hearing loss. We also encourage campers to include their listening devices in their art work. Throughout the entire camp day, campers are encouraged to identify when they need a word repeated. We help them figure out how to find the best seats for their listening needs. Campers also learn to take care of their equipment during sprinkler time when we are taking off and switching devices,” she says.
As I put Sonya to bed the other night, she asked me, “Mom, do we have camp tomorrow?”
“Yes,” I responded.
“Okay, good.” she smiled sweetly, “I love to go there.”
When we came back from Sonya’s cochlear implant activation, we received two large suitcases (one for each processor) filled with equipment. Learning how to use the equipment has been one challenge. Figuring out how best to store it has been another. I thought it would be helpful to walk you through how we have stored her devices and equipment!
As I discussed in the video, storing the various chargers, cords, etc., is challenging. The Grid It is an amazing tool. It is compact and fits tons. We LOVE IT.
Hope this is helpful! Look forward to learning any tips parents might have for storing their equipment. And I should probably start dealing with my “broken equipment” container 😉
“Missy, I am calling to discuss the genetic results from your Counsyl test,” my OB said over the phone one February afternoon in 2014. At the time, I was just ten weeks pregnant. Like many Jewish couples, Yan and I underwent genetic screening early in our pregnancy. Prior to this call, my main concern as a newly pregnant working woman in America was how to attend the numerous doctor appointments when my job wasn’t showing much flexibility. This concern soon changed.
The doctor’s voice slowed as she delivered the news. We are both carriers of a hearing loss gene called Connexin 26, she told us. This means a one-in-four chance that the child I was carrying would have profound hearing loss. I remember how the doctor paused after she gave us this information, as if to prepare us for another blow. “You will also need undergo IVF for any future pregnancies, if you want to screen for the hearing loss gene.”
For those who are new to the world of fertility problems, IVF is the process of fertilization by extracting eggs, retrieving a sperm sample and then combining an egg and sperm in a laboratory dish. Since we have a known genetic issue, the embryos are then sent to a lab for preimplantation genetic diagnosis (“PGD”), where a cell is removed for genetic testing. The goal at the end of the process is to have at least one embryo that is tested for chromosomal normalcy and for known genetic mutations, which is then implanted back into the uterus where it will hopefully establish a pregnancy.
Three years later, I found myself at NYU Fertility Center, where I underwent a full physical, a saline infused sonogram (to ensure the fallopian tubes are functional and that the uterus is normal) and what seemed like 20 vials of blood before I was determined a candidate for IVF and PGD testing. Four months after that, I had completed a cycle. We had spent thousands of dollars. My body hurt. My emotions were all over the place. And unfortunately, we will do it all over again in the coming months.
For parents in our shoes who are confronting the reality of screening future pregnancies for genetic hearing loss, I thought I would share my main takeaways:
The timeline is SLOW especially when you include PGD testing. Once I was cleared for IVF, we started the PGD testing. Yan and I both gave blood. Sonya gave a cheek swab as did our parents (they were able to mail them into the lab). From there, the lab went to work creating a “probe” which is a test they perform on the future embryos. We could not start the IVF process until the probe was complete, which took about eight weeks. We used Natera to create the probe, and they were great to work with.Once the probe was complete, I had to wait until my next period. The IVF cycle started on day two of my period and was complete around 12 days later. Then I had the retrieval, where the eggs are removed from the ovaries. Four weeks later, the results. All-in-all, it took five months from beginning to end. My future cycle will not take as long, however, since the probe has now been created and can be reused in the future.
The injections were the least bad part of IVF. My prior knowledge of IVF was limited to the fact that there were injections. Lots of them. And I would have to do them myself at home. The idea of the injection is much worse than the reality, however. In fact, they weren’t hard to administer at all (especially after childbirth, I mean, come on 🙂 Every morning and/or evening I administered at least two different medications subcutaneously – meaning just under the skin. The needles are short. Having my eyebrows threaded every couple weeks is WAY worse 🙂 My favorite part of this process was forcing Yan to watch. It completely freaked him out and I definitely dramatized the pain. I considered this my revenge for the fact that for women IVF is a bitch of a process. Men have no idea.How the medications affected me, however, was another story. Manic is the best word to describe it. The first week, I felt great. Bloated sure, but great. I was happy. I went shopping and bought way too many clothes. I explained to Yan later that this was due to the increase in estrogen levels (although it also could have been due to the fact that the Summer ’17 collection at Joie was pretty cute this year 🙂
The next week things quickly went south. My mood tanked. The smallest annoyance or frustration would cause me to break down and cry. While I was completely in love with Yan the week before, this week I wanted to murder him. Poor Yan. Even Sonya noticed the drastic mood shift. To this day, she continuously asks me “Mama are you happy?” I wish I could have hid my emotions better.
The retrieval especially was tough. This was the first time I had gone under full anesthesia, so I didn’t know what to expect. I cried as soon as I woke up from the pain. The nurses administered some kind of narcotic that helped. I was up and walking a few hours later but still incredibly sad. It took about two weeks for the hormone levels to stabilize. Worse still was the fact that I was bloated for a month after retrieval. I looked six months pregnant and felt I had nothing to show for it.
The odds are not in your favor. At my retrieval, I was thrilled to learn I had produced 23 eggs. An excellent number. Of those, 19 were successfully fertilized, nine embryos survived the five day mark, and a month later learned none – not a one – were normal. As you can imagine, we were heartbroken. I blamed myself. I thank God that I had such amazing support from Yan, my family (especially my mom and Yan’s mom who both flew to New York to take care of us during the cycle and after the retrieval), and above all, a beautiful and smart Sonya already in my world. I don’t know how I would have coped without them.
A healthy pregnancy truly is a miracle. The most important takeaway for me was the realization that while healthy babies are born every day, each one is truly a miracle. I don’t think I truly understood that until enduring a failed IVF cycle. I’ll never forget it.
Hearing Sonya Rose 