There is such a range of emotions that parents experience when finding out that their child is deaf. I won't expound in great detail on it, but I will say that I have relived every day and every memory that I had of Taylor back to her birth, how she reacted to certain situations and what I would have done differently had I known that she was deaf.
But I am a person of action, and revisiting the past isn't going to get us anywhere. What to do? We had done research before the diagnosis, and knew cochlear implants would be our preference for Taylor if she was profoundly deaf.
Let me give you an idea of what the summer was like:
June 8 - ABR, diagnosis Profoundly Deaf; first appointment with otolaryngologist/CI surgeon
June 10 - CT scan to rule out tumors and ensure the anatomy was normal and would allow CI
June 12 - Second appointment with otolaryngologist; Speech therapist appointment
June 15 - Pediatric cardiologist appointment to rule out any syndromic deafness with associated heart conditions. (None found)
June 19 - Appointment with Audiologist. Taylor got her hearing aids.
June 26 - Speech therapist appointment. No benefit shown with the aids.
July 21 - First appointment with new otolaryngologist at Hough Ear Institute in OkC. Genetic testing sample taken.
July 27 - Audiologist appointment. No benefit with aids.
July 27 - Wichita Otolaryngologist appointment. Their Goal for her CI surgery, on one side - November. Taylor would be 17 months old. Not acceptable to us.
July 28 - Genetic testing results, 2 recessive copies of Connexin 26 gene mutation.
August 3 - First meeting at Hearts for Hearing, our audioverbal therapy center in OkC.
August 10 - BILATERAL COCHLEAR IMPLANT surgery at the Hough Ear Institute!! Age 14 mo. 
This glosses over so many important decisions that we had to make along the way:
To sign or not to sign (We are!)
ASL or SEE or Baby Sign? We selected SEE, Sign Exact English.
Nucleus Freedom or Advanced Bionics - selected Cochlear's Nucleus Freedom.
Implant on one side or both? BOTH!
Simultaneous or Bilateral surgery? She had both implants done at the same time.
What colors of implants? What types of processors?
What causes deafness? How do we get genetic testing?
Do we drive 7 hours roundtrip for audioverbal therapy for the next few years?
And then there are all of the long-term decisions that we'll have to make -- will we h
ave to move to a larger city with better access to schools and therapy? With a 25% chance of having another deaf child, should we have more children? And how do we get involved to make the process easier for the parents that come after us?
CI Activation Date: September 9, 2009.
Location: Hearts for Hearing, Oklahoma City
ave to move to a larger city with better access to schools and therapy? With a 25% chance of having another deaf child, should we have more children? And how do we get involved to make the process easier for the parents that come after us?
CI Activation Date: September 9, 2009.
Location: Hearts for Hearing, Oklahoma City
Can't wait to see how she responds in activation day. Luca cried he was upset, but this is a good response, he was experiencing a totally new world. That same day he wore it for a while adn since then he used it all the time. Now he can't do without his "ears" :O)
ReplyDeleteMelinda Thank you so much for creating ths blog! I had some idea of your journey with this but not this extent. You and Jon are wonderful parents and I am so impressed at how proactive you were with all this. Taylor is a beautiful little girl and I am so excited for this new chapter to begin for her. Can't wait to hear how activation day goes! :-) Love you all - The Kunz Family
ReplyDeleteWhat a great blog! The photo is priceless, and the details you provide really help the rest of us understand what you have to consider on a daily basis in planning Taylor's future. No little girl could be luckier or more secure in love than yours!
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ReplyDeleteI'm left both speechless and inspired. The range of emotions that Sarah and I felt while reading this were powerful and deep yet I can't even imagine how they must pale in comparison to what you two of have been going through. I am saddened to learn of Taylor's struggle but I have zero doubt that there could be two better people anywhere to help her achieve the beautiful life she has in front of her. Just know that Kemper and the rest of us are here cheering you on and hoping that you are enjoying the blessed interaction that only a profoundly deaf child can provide - the silver lining. This will be the first blog I have ever subscribed to as I want to hear how well you all will continue to deal with this. We will be thinking of you all day on activation day! Thank you so much for creating this and opening up your life to those of us that care about you.
ReplyDeleteMy Dear Friends. She could not be more precious, more beautiful or more loved. She is the luckiest little girl because she has two of the most amazing parents guiding her through life. Thank you for allowing us to be apart of your journey. I look forward to watching this beautiful child grow and concur. A loved child is a perfect child. Love you all.
ReplyDeleteI just want to know what Jon was drinking prior to that picture.
ReplyDeleteMelinda, thanks alot for the posting that really helped in getting some idea. We live in kansas too. can we get a chance to talk or see Taylor as we want go for CI for our kid soon.
ReplyDeleteTo anonymous - email me at mmorgan01@hotmail.com and I will respond!
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