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| Rachel and her wild hair |
Rachel recently had a hearing test called an auditory brainstem response (ABR). This is not the first time she has had this hearing test done. Her last one was done back in July 2011. The test back then showed her hearing loss to be moderate to severe. Well this recent test showed her hearing loss is severe to profound. So basically she is really deaf. Her hearing aids are not helping her to hear. That would explain why she is not talking. I had been suspecting that her hearing aids were not helping her. We saw her ENT doctor and we all decided to move forward with getting Rachel a cochlear implant. First, she is going to have to have a CT scan to evaluate the inside of her ear anatomy to make sure she is a candidate for the cochlear implant. If all is ok with her ear anatomy then things will move forward to her getting implanted. I'm grateful that there is the technology (cochlear implant) available. I pray that her ear anatomy is good and that things will work out for her to get the implant. It would be amazing for Rachel to be able to hear and benefit from it. Only time will tell...
I would love to hear of anyone's experience (good or bad) with the cochlear implant. I need to prepare myself for all there is to know about it. I have read some stuff online, but that info only tells me so much. Thank you in advance. You can either leave a comment or email me at stanseljourney@gmail.com.
Hi Amanda,
ReplyDeleteI've been around since you were pregnant with the sextuplets, and my college minor is in Deaf Studies and ASL. We did lots of study on the cochlear implant, benefits and drawbacks, etc.
I think it is more beneficial in small children than it is in an older child. That said, it will never sound like how sound is to us. It's mechanical. It's not identical. Maybe at best sort of similar, but not the same, so make sure you have reasonable expectations. Also, remember it is huge, invasive surgery. Always keep that in mind.
Many of the people we studied who were fitted with implants found them to be overwhelming and overstimulating at first, or sometimes for long periods after the surgery. I have seen amazing videos on You Tube since, but that is not what we observed as students. Be cautious, and take your time. Go at her pace.
Hugely important, although it sounds like the decision has been made (and I don't know that my decision would be any different, we want our children to experience as much out of life as possible), is I think for her to learn- and for the *entire family* to learn ASL along with her. Even if she gains some or lots of hearing with the help of an implant, with the device not on her head, she goes back to being deaf, and these pivotal years are already behind her. She should be empowered with the language of her hands. It also opens her up to a whole other community just waiting to embrace her. And not just learning "baby sign" with the videos, but learning the actual language with the proper grammatical structure. This can only help her and open doors to her, and bridge gaps. Even if everything goes swimingly with the implant, this will help her in other areas of her life later on. Do it, and do it now, so it is ingrained in her. And do it as a family, so everyone grows up with it. It will be natural to her and be beneficial to everyone. You know, a child can learn signs from the time they are a few hours old. I used to do panel discussions on this when I was in college. You don't have to wait. You just start signing, and provide positive reinforcement when they start signing back. Also, in the interim period while you wait for the surgery, she can continue learning how to communicate. When I taught preschool, my entire class of 12 kids could sign upwards of 100 words when they were 18 months. It just takes practice and dedication, and positivity, all of which I believe you have!
i have 2 little friends who've had implants. the families had learned sign language but never use it any more as the kids' hearing is soooo good!
ReplyDeletei'm also one who discouraged growth hormone and i'm glad you didn't go that route (for now!)
good luck with your little family!
I woder whether you are familiar to a blog www.ourmicropreemietwinscom. Their other girl have some vision problems and the other hearing problems. I should think this website and perhaps the blogger mother behind it could be helpful for you.
ReplyDeleteAll the best to your whole family!
Yes I do read and follow that blog! I have learned a lot about the cochlear implant from reading this mom and her daughter's experience. Thanks!
Deletewww.profoundlyseth.com
ReplyDeleteI'm becoming an SLP and am learning about cochlear implants. I'm glad to hear that she's being assessed. Hopefully it will happen soon and her speech will take off, now is a very critical time for learning speech and language. I would definitely start learning ASL now as it builds language skills and it will likely be awhile before she gets the implants and they are working for her.
ReplyDeleteThese people did it with one of their daughters.
ReplyDeletehttp://www.ourmicropreemietwins.com/
Amanda, it felt wonderful to be interacting with you at the same time! I have once been in Fort Worth and Dallas for two weeks. Some twenty or more times all over USA, too. I am a scientist in medicine so my work during the recent 15 or more years has been traveling. I must say that of all the states I have seen the Texas people are the ones most proud of what they are and have. It is also a very very interesting place for a Finnish Europian person to visit. Especially the boots made an impression! I almost bought a pair. And then the longhorn cows. What amazing huge beautiful animals. Also to see so flat ground going on and on and on is special.
ReplyDeleteRight, I do not suppose you to
Something weird happened and I was not able to end my coment properly. Anyway, keep the good up and fight against the bad.
ReplyDeleteYep, been following your story for years and think the word of you two.
I regretfully don't have any information to share. (I was going to suggest the ourmircopremietwins blog.) But I just have to say how beautiful Rachel is and how cute I think her mop-top of hair is! I love it.
ReplyDeleteSame. I love her hair.
DeleteI read this blog:
ReplyDeletehttp://thelawrencetriplets.blogspot.ca/
the triplets are older now so you may need to back a bit
My daughter, Emmi, is profoundly deaf. She was born with normal hearing, but experienced hearing loss around 12 months due to an underlying health problem. She received her first CI at two-years-old in Dallas. Her second CI was implanted at TCH when she was three. The first failed, and she was re-implanted on that side at five. It is definitely not an easy journey, but I have absolutely no regrets with the decision we made. I would be happy to share more with you about our experience and would love to answer any questions you may have. I will email you my contact information.
ReplyDeletehttp://micropreemietwins.blogspot.com/2005/10/eden-version-20-post-cochlear-implant.html
ReplyDeleteJust read this article on slate and didn't know if it would be of interest: http://www.slate.com/blogs/quora/2013/02/19/what_is_life_like_after_a_cochlear_implant_for_a_person_born_deaf.html
ReplyDeleteMy niece got cochlear implants at 12 months. She was born completely deaf. She is now 4 years old and speaks practically "PERFECT". Better than my almost 5 year old boy. We don't know exactly what her hearing sounds like for her, but she can hear music, and really sounds totally normal. It has been the biggest miracle for our family and are so grateful for it. If this is a possibility for your daughter I would say go for it!!! As for the surgery part, yes it was a surgery, but it was not bad at all. She handled it great. God bless your family!
ReplyDeleteto hear that Rachel may get a cochlear implant. I am an adult who became profoundly deaf at age 50. I have bilateral implants and consider them nothing short of a miracle. I can certainly vouch for what Rachel will be going through. DO NOT be frightened by comments from people who have not personally experienced this pathway to the beauty of sound. I just last week returned from the Cochlear Celebration where over 1000 implantees convened. Many were small children and the parents of children who have walked in the footsteps you'll be taking. We met the Dr. who invented the cochlear implant. It was so amazing to watch all these small kids conversing as if all were perfectly normal. And to them it is. Having been a hearing person, I can tell you that the sound Rachel will hear from a cochlear is not that much different from a hearing person. Especially one on one. She will receive a lot of rehab therapy. She'll be "activated" about 4 weeks after her surgery and of course will be a little frightened at first, but will rapidly adjust to the miracle of sound. Don't be frightened by the surgery. Of course, she's your child and normally you'll be overly concerned but that's to be expected! I'll email you my contact. I live in Pearland and use to live in Kingwood.
ReplyDelete