Month: December 2016

We are STILL Failing at Sleep Training and Eating is a Disaster

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In the age of social media (not to mention the many play dates we attend), it is impossible not to compare yourself to your seemingly perfect peers. A year-and-a-half after Sonya’s cochlear implant surgery, she is doing wonderfully. She speaks in complete sentences. She is a leader in her mainstream twos program. She is learning and speaking Russian.

Yet, I sometimes feel like I am failing her.

For one, I can’t seem to properly sleep train her. I have read the books. I have hired the professionals. I purchased the night lights and lullaby machines. Yet, Sonya still cries for me to lay next to her while she falls asleep – and as hard as I try – I have yet to succeed from weaning her from my presence.

At night, Sonya does not wear her cochlear implant (CIs) processors. She is deaf. This has been the challenge – and I have yet to encounter a sleep training guide, professional or friend who has a good solution for it.

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When Sonya cries for me, I find the sound unbearable. The sleep training books say she is using tears to manipulate us, but all I hear is her fear. It is dark, silent and she is alone. Who wouldn’t be afraid in that type of situation?

When the books tell me to offer comfort by the sound of my voice, I sigh in frustration. As soon as I give up, I lay back in her bed. Her breath shaking from crying eases and she smiles while closing her eyes. “I love you mama. I love you so much,” she says as she lays her arm around my neck.

Eating is another challenge. Sonya is a “stubborn” eater. She basically subsists on a diet of challah, ricotta and pasta, protein pretzels, berries, cheese and milk. Behavioral methods to improve the diversity of her food intake haven’t worked yet. We were chastised for allowing her to have an iPad at dinner, but the fact is – the iPad worked. It kept her distracted and she would eat a broader array of foods. Without it, she grows frustrated at the sight of foods she doesn’t think she will like and takes her CIs off.

While it is hard to convey these challenges to friends of hearing kids, I try to remember that every child has their challenges – whether deaf or hearing. Every parent probably feels the way I feel to a degree.

In happier news, here is a video of Sonya taken just a few days ago. She is speaking non-stop these days. We couldn’t be prouder of her progress:

Could We See a Cure for Hearing Loss in the Next Decade? Scientists at Stanford Are Optimistic

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Sonya hanging out in her favorite place: The American Museum of Natural History. She already loves science 🙂

Sonya was born deaf, but she was also born into an amazing age where symptoms of hearing loss can be relieved. When she was just seven months old, Sonya was implanted with cochlear implants which provide her a solid range of sound – particularly within the vocal range. Because of this technology, she is learning to speak and listen (and at two-years-old is on par with her hearing peers in terms of speech and comprehension!)

While cochlear implants are an amazing solution – they do not cure hearing loss. For example, Sonya likely does not hear music as we do. She likely does not access the subtlety and grandeur of sound that we are afforded.

But imagine, one day, if there was a way to restore hearing loss — even for people who have cochlear implants.

Researchers at Stanford not only believe it is possible – but within our reach in the next 10 years. Imagine what that would mean for someone like Sonya? Someone who never had use of her ears. Imagine what it would mean for the nearly 48 million Americans who report some degree of hearing loss and the nearly 278 million people worldwide.stanford

This week, we met with Dr. Robert Jackler, the lead researcher at the Stanford Initiative to Cure Hearing Loss  and Dr. Stefan Heller (who runs Heller Lab at Stanford) and whose mission is to create biological cures for major forms of hearing loss. Unlike other institutions which are focusing efforts on improving the symptoms of hearing loss, Stanford is working to address the (main) underlying problem: loss of inner ear sensory hair cells.

Let me explain. We are born with thousands of hair follicles that live deep within the inner ear — inside the shell-shaped cochlea. These hairs transmit vibrations to the brain, which interprets those vibrations as sound.

For Sonya – who was born with a genetic mutation (Connexin 26) –  and is missing a necessary protein to grow the above hair follicles – the diagnosis of deafness seems intangible. But Dr. Jackler and his team believes such hair follicles can be regenerated. To do so, Stanford has pulled together researchers in four key areas: stem cell therapy, gene therapy, molecular therapy and targeted neural stimulation. In 2015, Stanford scientists discovered biological mechanisms that appear to play a role in the regeneration of cells in the inner ear. They have also been able to regenerate such hair cells in mice.

Dr. Jackler brought up one avenue of research, that is particularly compelling. Many children suffer from hearing loss because of complications at birth. Aminoglycoside antibiotics are given to babies (especially in developing countries) to prevent infection. Yet, for some infants, the use of these drugs can cause hearing loss. Aminoglycoside antibiotics can travel into the inner ear and kill hair cells. Stanford researchers across an array of disciplines are very close to developing a way to protect the inner ear, while still allowing the drug to kill bacteria – thereby saving the patient’s hearing. This development would literally save millions of babies from hearing loss.

To many, Stanford’s Initiative to Cure Hearing Loss might seem too challenging, too expensive, too far out there to fund. Investments in hearing loss technology including hearing aids and cochlear implants have been society’s focus – but I would urge people not to disregard such research. The future of all our ears depends on it.

Check it out: https://hearinglosscure.stanford.edu/

They also have an interesting blog where you can stay updated on their research: https://hearinglosscure.stanford.edu/blog/