Letter from Tristan’s Mom
Thank you so much for your raffle ticket purchase for the 3rd Annual Fishing To Hear Rodeo. Last year’s ticket purchases and donations helped us give our son Tristan Gabriel the only opportunity he has to communicate effectively with the world and to become a self-sufficient, contributing member of society.
Tristan has a profound bilateral hearing loss and does not benefit from high gain hearing aids. As if deafness isn’t challenging enough, Tristan also has cerebral palsy as a result of kernicterus in the NICU. Cognitively, he is unaffected but he cannot yet hold his head up for more than a few seconds, sit independently or crawl. He is 26 months old.
What is most devastating is that he doesn’t have the fine motor skills to sign even simple signs. I sign fluently and sign to him every day. He understands many signs but can only reply with facial expressions and vocalization. He gets better every week, but full communication through sign language is not an option in the foreseeable future.
If you met Tristan you would instantly see how his spirit radiates and draws in those around him. His huge, green eyes watch everything and the intelligence behind those eyes is obvious. He has new-found independence scooting around in his special walker. Tristan laughs out loud all the time. He loves to wear hats, costumes and sunglasses, as if he knows how cool he looks. He even smiles while wincing during difficult therapy sessions. He is a joy and an inspiration.
We planned to get our sweet Tristan two cochlear implants at age one so that he would have the best possible outcome. We took it for granted that our group insurance policy through Coventry would cover at least one implant and we were prepared to fight for the second. As it turned out, Coventry lists cochlear implants as a specific exclusion and our appeals had been exhausted. We were still dedicated to giving Tristan what he deserves-- two good “ears”-- and yet we found ourselves fighting for one.
With the most critical period for language development occurring between age one and two, the clock was ticking while we turned over every rock and reached out to available resources. In most cases, our income was “too high” to qualify for aid. No one considered that there is no way our income could pay for such a surgery or that our family has already been burdened with $50,000 in out of pocket medical expenses in the last two and a half years. With an average of four to five weekly medical/therapy appointments and another <very active> toddler, there was just no way we alone could fundraise the entire cost of the device and surgery.
Finally, in June 2008 we were able to get Tristan approved for Medicaid for one year based on his disabilities. This eligibility guaranteed him one implant and after all the testing and paperwork, we received his surgery approval in August. Less than 24 hours after getting this wonderful news, Ms. Couvillion called me with more great news: Tristan was to be the recipient of the Fishing To Hear Foundation fundraiser!
This winter Tristan had one surgery to implant both devices and the cost was partially covered by Medicaid with the remainder covered by the Fishing To Hear Foundation. One surgery was less traumatic on Tristan and made the best use of the money so generously given to us.
Tristan is now learning to listen, to interpret sound and to vocalize. We work with him daily to help catch him up to his peers. Tristan will attend the New Orleans Oral School beginning in the fall to help prepare him for kindergarten in a few years. What once seemed so out of reach is becoming a reality. Thank you for helping another family give their child the future they deserve!
Sincerely,
Aggie & Mike Canales