We write this post to bear difficult news, and yet we write it with great hope and a sense of tremendous joy in our lives. Let us note, before we go any further, that we are all ok, safe and in good spirits. Amichai is growing like a weed, our delicious and sweet boy....he is so alert, smiley, well-adjusted to his life with us. He is a love, and we are blessed.
Just a couple of weeks ago, after failing his first two hearing screenings at the pediatrician, we took Amichai for extensive testing on his ears, and he has been diagnosed with profound bilateral deafness. Amichai was born deaf, the nerve cells necessary for hearing having never developed in his ears. We are greatly blessed that this issue is isolated, and that he has NO other associated developmental concerns.
These weeks have been a tremendous learning curve for us. We have learned that a diagnosis of profound congenital hearing loss has very different implications for a person's life than it did thirty years ago. Today, Amichai will have access to great therapies that will allow him to develop speech and language and technologies like the cochlear implant, which, if successful (God-willing), will give him the miraculous ability to hear. Through these various interventions and technologies, Amichai will be given the speech and language skills necessary to live a full, happy and productive life with the tools to integrate into both hearing and deaf communities.
Many people have asked us what they can do to help support us and Amichai over this coming year. At this time, we are feeling overwhelmed by the amount of tasks and appointments each week that will be involved in getting Amichai the best care possible over this year. The best thing you can do for Shayna and I would be to keep up with all that is going on in our lives on this blog, so that we can minimize any added amount of time we will spend to update our loved ones about all that is going on. This way, when we connect in person or over the phone, we can talk about this and have time to enjoy talking about other things in life!
In regards to Amichai, we have learned from our doctors that the greatest gift we can all give to him over this next year is to continue with him as we have over these first three and a half months....we will continue singing, playing, talking, reading, and exploring together just has we have done with him since the day he was born, and we ask that of his family and friends as well. Because he is developing regularly in every other way, he takes in all of these cognitive experiences and learning, including language development, despite the fact that he cannot hear our voices without augmentation.
We are in the process of starting Amichai in an intensive early intervention program to help him continue to develop pre-language skills. He was fit today with hearing aids to begin the integration of sound into his life, in preparation for cochlear implantation at nine months of age. We are also beginning to learn ourselves and to teach him ASL (American Sign Language) to supplement his language development and to give him long-term access to all communities with which he may want to be a part as a deaf person. We have a tremendously amazing team of doctors and educators guiding us in this process as well as the ultimate support team of family and friends here in New York and beyond.
It was important to us to share this information with all of you, both so that you know of the journey we are on, and because we expect and hope that you will always be a integral part of Amichai's life. We made the decision to tell about what is going on by email because of this current overwhelm with things to do to get our journey with Amichai on the right track. The prospect of having private conversations with everyone that we love right now felt like too much to add to our load. We hope you understand, and we look forward to having conversations with you about it in the future.
We are certainly going through ups and downs in all of this, and the to-do list is quite overwhelming, but overall, we feel hopeful and positive. It is hard not to when we have our gorgeous, happy and beautifully developing boy in our arms. He is just amazing.
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