(click to view)Well, after 5 months of uncertainty, mostly in the realms of "there are no auditory nerves" dictating no possibility of hearing, that news delivered by the Resident Dr in May with a smile on her face, today's BAER/auditory brainstem response has proven definitively that
His hearing is moderate-severe loss in his left ear (he responds to 55-80db) and profound in his right ear (he does not respond to 95db), which, as you can see from the attached, means he may hear a baby wailing in his left ear, but not the spoken word.
The loss of hearing in the left ear is conductive rather than sensory, as first thought. The loss of hearing in the right ear is yet to be determined but at present, there are no plans to stimulate hearing in the right ear, the loss being too profound.
Thanks everyone for your messages of support and to the believers all along. Dad was sure there'd be a way for Reuben to hear at a time when I was trying to accept there could be no hearing, not without auditory nerves to carry the sound waves to the brain. Dad would think Reuben was responding to things he was saying, yet that was in the same way that he'd optimistically say "Wait til Reuben gets to the Ocean and smells the salty air", the sad irony of that which cannot be lost on any CHARGEr parent.
But I guess we too couldn't let go of the hope that the original BAER test showing severe/profound loss contradicted the 2 MRIs done at different intervals which showed the absence of auditory nerves and thus no hearing at all. It's nagged at me for months and I've beaten myself up about it, still do, that we missed out on early intervention. I guess we've been busy as have the Drs and nurses in saving Reuben's life.
As said, I would conduct my controlled experiments in the PICU in the absence of audiologists, by putting the TV's personal speaker to Reuben's left ear whereupon he would repeatedly wake up, until I got to the point of bugging the hell out of neighbouring families and patients.
The solution is a hearing aid attached to a headband (not a cochlear implant as I first thought.. thanks Fanning for the clarification) called the Baha Softband, designed for babies where an implant is not recommended before the age of 5 due to a baby's skull being too thin and too soft to safely support one. The processor is a bone conductor which transmits sound via the bone to the inner ear.
http://www.cochlearamericas.com/products/1983.asp
If anyone can offer any advice on the Softband, please do! I did come across Kennedy's own experience through a Google search so thanks for that insight and for information on how the Softband might ultimately be replaced with an implant.
This is tremendous, life changing news. We continue to sing to our boy knowing that one day soon, he will be able to hear us...
Update: our medical insurance company won't cover the $2,600 cost of the hearing aid. We've been declined for CCS and Medical (apparently) doesn't cover the aid either. Another huge financial challenge to summount.
16 comments:
wow how great is this you r all so positive and wonderful that would b hard for his hearing not to show something my hearing is about the same as reubans but my better is is the right ear and ive got a sensory and conctory loss quite possible he could hae both one in one ear and one in the other
What exciting, uplifting news... you must be so thrilled. The possibilities must seem wonderful.
Sounds like a frustrating and worrying week otherwise, in many ways... but imagine it is just so lovely to have your little man at home at the same time, and your brother there too. It also seems that you are coping brilliantly with all the challenges.
Love Polly xx
AWESOME! FANTASTIC! HIP HIP HOORAY MY FRIEND!!!
I immediately pulled out Max's audiogram and their one ear is just about the same....and let me tell you, he hears (with a hearing aide)!!! Totally, I call his name from across the room and he HEARS me!!!!!!!!!!!!!! Perhaps Reu will do the same.
This is wonderful, wonderful news my friend. I am absolutely thrilled for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Seriously I cannot stop smiling!
Love Amy and Max
Catherine, I'm so excited for you guys with these BAER results--Reuben's hearing is better than Evan's (his "good" ear is severe-profound, and profound on the other side). Now starts the long road of trying hearing aids and considering CIs. Don't beat yourself up about not intervening early enough with aids--Reuben had so many "fish to fry," so to speak, and you have to deal with the life-threatening ones first. Unfortunately, this means that trolling for developmental "fish" gets delayed. But you are still plenty early in terms of intervention.
Our thoughts are with you and the surrounding community with the fires. I heard on the radio that teams from our area are headed down to help contain the fires.
Hugs,
Sarah, Jeremy, and Evan
PS I am disappointed to hear of the sleeping nurses. The should be sent packing. I guess we were just lucky with our single nurse--she was great. We never caught her sleeping on the job (not that we ever intentionally checked up on her), but considering the prolific crochet work she completed each night we assumed she had to be up the whole time!
Catherine! I am delighted~! And I would like to register myself as one of those who affirmed Reuben's uncanny response to environmental sound :o) Looking at his audiogram, the hearing in his "good" ear is far better than Keith's - so if that is any encouragement for you - embrace it :o) As for missing any opportunity thus far - I seriously doubt you have. You and Jason have been fully commited to communicating and bonding with your previous boy in everyway possible from the moment he emerged. You have brought him the world in every way and you have affirmed his every response and preference. You have been communicating with great regard for his responses - and this is the basis of Total Communication - so you have intuitively been therapizing excellently all along :o) The perception of smell seems so deeply subjective, that I have not yet met a young adult with CHARGE who laments its loss.... w00t as my boys say - congratulations! savor this affirmation of that which you aleady know to be true, and remember the feeling for the days to come where your direct experience will be at odds with the "professionals" once again - it is inevitable.... much love, y
Catherine and Jason,
I am so happy to hear that little Reuben is doing so well at home. The pictures of the whole family were wonderful and it is good to hear that he has some hearing. I hope that he contiues to grow and thrive. Someday I hope to meet you all and see how big little Reuben is getting.
God Bless you all and my love to Reuben.
Lori
Yipee!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
You already know how thrilled and 'over the moon' I am about the confirmed results, so many months of 'he has/he hasn't/he has/he hasn't' and now you know that Reuben can hear!! A enlighting and exciting dimension to Reubens life and that of yours and J's. A mothers' instinct, no beating that!
With beaming smile, I send this
Love Erica
Fabulous news and always go with your gut instincts! I was so pleased to get your text yesterday. As they say the only way is up and Reuben is heading for the stratosphere! Keep enjoying you boy and your husband and being a family to the fullest extent.
Sx
That is great news!! As for the softband, I do respite for a little guy who has one and its not bad. Its amazing the differnce in him also when the band is on and off. I felt it and its a vibration of noise on his head its pretty neat how it works. Good luck and I hope it all works out for you all!!
Hugs,
Crystal and Eva
Wonderful news! Praise God!
What Fabulous wonderful news!
I'm smiling from ear to ear!
Take care my little friend, you have a wonderful life ahead ~
Love
Katie & Mummy
xx
I've posted to you on Ivillage and keep a track on here of how you and Reuben are doing. I'm sure you won't remember but I'm a specialist speech & language therapist in deafness and I just wanted to say HOORAY!! about Reuben's audiogram - it looks fab and should look even fabber after aiding. I work with a 10yo boy with a Baha and his speech sound testing results are almost 90%. He doesn't have a band anymore but a permanent titanium "plug" fitted that looks a bit like a press stud to keep his baha in place (I think it was fitted when he was about 3). This might also be helpful;
Conductive loss = outer/middle ear damage/malformations
Sensorineural loss = inner ear damage (cochlea)
A Baha basically does the job of the outer/middle ear and conducts the sound straight into the cochlea for analysing.
A Cochlear Implant basically does the job of the cochlea by electronically analysing the sounds and passing them on to the auditory nerves.
So a baha isn't a type of CI, it's a different device for a different type of hearing loss. Different clinics and countries have their own criteria for deciding on a CI in terms of dB loss, age, other medical issues, family support etc. It is possible to have a Baha on one side and a CI on the other. Before I go, I also want to say DO NOT beat yourself up about early intervention - so much early communication is non-verbal (eye contact/gaze, smiling, joint attention, facial expression) and I can see from this blog that you have so naturally and spontaneously done all of those things with Reuben. He is beautiful.
Love Faning XX
Fantastic! One of your greatest wishes has been realised! Reuben's journey has become so much more fulfilling and rewarding. I know how much you hoped and prayed for this, and I'm thrilled for you all.
Congratulations! That is wonderful news :-)
I am so VERY happy for all of you!
As many have said, don't fret about having had to wait five months... there wouldn't have been any way to comfortably aid him during these lasts months in the hospital... all of that equipment and noises would have likely driven him mad! And, he has received plenty of wonderful communication through your physical and emotional presence, your touch and by watching you. He has "heard" you in so many other ways.
His audiogram looks so promising... he WILL hear you! :-)
Congrats... :-)
love,
Kristi
Wonderful news about Reuben's hearing test! I remember when we tested Cameron for bone conduction and he responded. I cried right there in the audio booth. Finally, good news about hearing! Stay strong. Cameron has severe/profound conductive loss and wears hearing aids. He does remarkably well aided. Keep us posted.
Rebecca
Mom to Cameron, 5, CHARGE
If misery does indeed love company - we have paid out of pocket for both sets of Keith's hearing aids (a little over $3,000 for the first set of analog aid, and I think $5,500 for the digital aids). Sometimes knowing the injustice is evenly spread makes it seem less unfair .......though no less maddening.... oxo,y
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