Heck, it's been over for a month and we're still running. Here's the latest with Kelley's ear and surgery.
As you can see by the picture, it looks amazing. We are so happy with the results. People who know that she's had the surgery comment on how "real" it looks, and people who don't know about the surgery don't even blink, even when she wears her hair up in a ponytail. The scars on the other parts of her body - outer thigh split thickness skin graft from her July '06 canalplasty - and the March '07 MedPor implant surgery across her stomach, continue to fade away, also.
She continues to be very open about her ear, showing people who ask, and telling perfect strangers "I got a new ear in DISNEYLAND!" People immediately look at me as if to say "Wha?"
So - here's the latest developments with ESD......there is none. After we received the Early Intervention paperwork from the district, Kelley and I did the enclosed "Ages and Stages Questionnaire." Apparently it's a test that Educational Services uses to gauge whether or not children are on-track developmentally. And, just as I suspected, she's just fine. She has absolutely NO developmental delays as a result of her unilateral hearing loss. I was also told by an ESD representative that based on her hearing test results, she would be right on the border for getting any assistance with a hearing device like an aid or an FM system, anyway, with the likelihood being no.
An interesting side note here before I continue.....one day this summer we were in the car driving to dance class. She said to me "Mom, this ear is loud and this one softer." It's the first time she's used words to describe the way she hears the world. For some reason that really struck me. She can now describe what she's hearing and how.
So, there we were, sort of adrift, trying to decide/figure out what our next move for her should be. We had basically been cut loose by her doctor in Portland, and ESD said "Sorry, can't help you...." When two awesome things happened....
Firstly, a dear friend who happens to work for a hearing aid company was able to obtain a hearing aid for Kelley without any cost to us. As soon as we put it in her ear, she said "Wow! I can hear on that side!" The only trouble we have with it at the moment is the fact that the portion of the aid that is supposed to hook behind her ear doesn't fit very well due to the fact that the area behind the pinna isn't as deep as on a natural ear, so it's a little unsteady. We haven't had her wear it to school or anything for fear of losing it. We're going to try to figure out what to do about that soon.
Secondly, in mid-September, we got a call from the California Ear Institute - the clinic and doctor (Dr. Roberson - so awesome!) who performed her canalplasty in the summer of '06. Apparently they are putting together a study for post-MedPor children. They are studying the hearing results of these kids after their MedPor reconstruction (what Dr. Reinisch did for us) and are finding basically two types of results......really good hearing and just so-so hearing. Kelley falls into the 'just so-so' hearing category. They've pretty much determined that the ossicles on Kelley that are fused together aren't fully bone - they are what Sherri Byrne-Haber (Dr. Roberson's go-to gal for this kind of stuff) described as 'fibrous.' Which means that sound is being partially absorbed by the fibrous tissue and not making it all the way to the brain.
We have one of two options.....the study they are putting together would involve a specialized middle-ear implant called a Vibrant Soundbridge. This is a great description and diagram of what this particular implement is all about..... http://www.vibrantmedel.us/archive/layout/patients.asp?
and this: http://www.vibrantmedel.us/archive/layout/patients.asp?SCREEN=patients&page=sbHow
John took one look at that page and said "No Way." I tend to agree. It seems like a huge step for her, and we would be making a decision that would seriously impact her in a way that years down the road she may not want....especially if technology continues to advance and alternatives are developed as she grows up. It feels very much like a decision that she should be able to make for herself when she gets older if she decides that her current level of hearing isn't sufficient for her.
So, the second option is to have another surgery. In this surgery, the middle ear bones (the hammer & anvil) would be removed, and replaced with a titanium implement that would possibly help conduct sound the way the ear bones are supposed to. This surgery would be much less invasive than the previous one performed by Dr. Roberson, so we wouldn't be stuck in a hotel room for weeks. Thank Goodness. At any rate - that is the option we are leaning toward.
Ironically, her Portland surgeon, when performing canalplasties, takes out the ossicles and replaces them with the titanium implement as a matter of course. When we were deciding on surgeons, we decided that it was too aggressive. You can't put them back in once they're gone, right? And we wanted to give her ear a chance to possibly do what it's supposed to do without putting a foreign object in it. We considered adding the titanium implement as a "step 2" if the canalplasty didn't give us stunning results.
So here's where we are: based on her most recent hearing test, Dr. Roberson felt that she has shown a steady improvement over her last 3 tests. He recommended that we have her hearing tested again in January, and to send him the results. At that point he would be in consultation with us on what he recommends. Back to a holding pattern.
That said, Kelley started full-day Kindergarten in September, and is doing great. We informed her teacher that preferential seating would be a good idea, and she's been totally willing and helpful. Kelley seems to be thriving. We're really happy with the school, too. (We chose a private religious school for her for a myriad of reasons).
She's doing wonderful, as is everyone else. And I have to say - what a little trouper our little guy Ryan has been through all of this. He gets carted around all over the place and he's just this happy little boy. He took his first unassisted steps on October17th. He's not running quite yet, but he's taking several steps at a time without holding on to anything or anyone. Plus, he's into everything he can possibly be into, as you can see by the picture of the kitchen.
As you can see by the picture, it looks amazing. We are so happy with the results. People who know that she's had the surgery comment on how "real" it looks, and people who don't know about the surgery don't even blink, even when she wears her hair up in a ponytail. The scars on the other parts of her body - outer thigh split thickness skin graft from her July '06 canalplasty - and the March '07 MedPor implant surgery across her stomach, continue to fade away, also.
She continues to be very open about her ear, showing people who ask, and telling perfect strangers "I got a new ear in DISNEYLAND!" People immediately look at me as if to say "Wha?"
So - here's the latest developments with ESD......there is none. After we received the Early Intervention paperwork from the district, Kelley and I did the enclosed "Ages and Stages Questionnaire." Apparently it's a test that Educational Services uses to gauge whether or not children are on-track developmentally. And, just as I suspected, she's just fine. She has absolutely NO developmental delays as a result of her unilateral hearing loss. I was also told by an ESD representative that based on her hearing test results, she would be right on the border for getting any assistance with a hearing device like an aid or an FM system, anyway, with the likelihood being no.
An interesting side note here before I continue.....one day this summer we were in the car driving to dance class. She said to me "Mom, this ear is loud and this one softer." It's the first time she's used words to describe the way she hears the world. For some reason that really struck me. She can now describe what she's hearing and how.
So, there we were, sort of adrift, trying to decide/figure out what our next move for her should be. We had basically been cut loose by her doctor in Portland, and ESD said "Sorry, can't help you...." When two awesome things happened....
Firstly, a dear friend who happens to work for a hearing aid company was able to obtain a hearing aid for Kelley without any cost to us. As soon as we put it in her ear, she said "Wow! I can hear on that side!" The only trouble we have with it at the moment is the fact that the portion of the aid that is supposed to hook behind her ear doesn't fit very well due to the fact that the area behind the pinna isn't as deep as on a natural ear, so it's a little unsteady. We haven't had her wear it to school or anything for fear of losing it. We're going to try to figure out what to do about that soon.
Secondly, in mid-September, we got a call from the California Ear Institute - the clinic and doctor (Dr. Roberson - so awesome!) who performed her canalplasty in the summer of '06. Apparently they are putting together a study for post-MedPor children. They are studying the hearing results of these kids after their MedPor reconstruction (what Dr. Reinisch did for us) and are finding basically two types of results......really good hearing and just so-so hearing. Kelley falls into the 'just so-so' hearing category. They've pretty much determined that the ossicles on Kelley that are fused together aren't fully bone - they are what Sherri Byrne-Haber (Dr. Roberson's go-to gal for this kind of stuff) described as 'fibrous.' Which means that sound is being partially absorbed by the fibrous tissue and not making it all the way to the brain.
We have one of two options.....the study they are putting together would involve a specialized middle-ear implant called a Vibrant Soundbridge. This is a great description and diagram of what this particular implement is all about..... http://www.vibrantmedel.us/archive/layout/patients.asp?
and this: http://www.vibrantmedel.us/archive/layout/patients.asp?SCREEN=patients&page=sbHow
John took one look at that page and said "No Way." I tend to agree. It seems like a huge step for her, and we would be making a decision that would seriously impact her in a way that years down the road she may not want....especially if technology continues to advance and alternatives are developed as she grows up. It feels very much like a decision that she should be able to make for herself when she gets older if she decides that her current level of hearing isn't sufficient for her.
So, the second option is to have another surgery. In this surgery, the middle ear bones (the hammer & anvil) would be removed, and replaced with a titanium implement that would possibly help conduct sound the way the ear bones are supposed to. This surgery would be much less invasive than the previous one performed by Dr. Roberson, so we wouldn't be stuck in a hotel room for weeks. Thank Goodness. At any rate - that is the option we are leaning toward.
Ironically, her Portland surgeon, when performing canalplasties, takes out the ossicles and replaces them with the titanium implement as a matter of course. When we were deciding on surgeons, we decided that it was too aggressive. You can't put them back in once they're gone, right? And we wanted to give her ear a chance to possibly do what it's supposed to do without putting a foreign object in it. We considered adding the titanium implement as a "step 2" if the canalplasty didn't give us stunning results.
So here's where we are: based on her most recent hearing test, Dr. Roberson felt that she has shown a steady improvement over her last 3 tests. He recommended that we have her hearing tested again in January, and to send him the results. At that point he would be in consultation with us on what he recommends. Back to a holding pattern.
That said, Kelley started full-day Kindergarten in September, and is doing great. We informed her teacher that preferential seating would be a good idea, and she's been totally willing and helpful. Kelley seems to be thriving. We're really happy with the school, too. (We chose a private religious school for her for a myriad of reasons).
She's doing wonderful, as is everyone else. And I have to say - what a little trouper our little guy Ryan has been through all of this. He gets carted around all over the place and he's just this happy little boy. He took his first unassisted steps on October17th. He's not running quite yet, but he's taking several steps at a time without holding on to anything or anyone. Plus, he's into everything he can possibly be into, as you can see by the picture of the kitchen.
I really hope someone is still reading this! As always....thank you for reading and keeping us in your thoughts.
3 comments:
I just came here to see if there were any updates earlier today.. So glad it seems as if Kelley is doing a lil bit better. Hopefully something can be worked out with her hearing aid and she is able to wear it more often, like to school. It'll make a world of differnce to her (remember Jacob has a hearing aid he wears in his left ear). Funny how our babies just put up with the stuff we put thm through when it comes to their siblings.
I've been reading, and waiting, too. I'm glad she is doing so well in kindy. And that she can now use words to describe her hearing. My DH wear an aid in each ear, and as technology progresses, he keeps looking at implants. It's hard to know that right thing to do. One implant he looked at would prevent him from ever getting an MRI. He also found something that was experimental that he tried to sign up for, but failed the hearing part-LOL. I'm sure God will lead you in the way you should go. Thanks for the update!!
Hello! Just stumbled across your blog. Do you have any new pictures? My son, Luke, is going to see Dr. Reinisch this summer. He just had titanium middle ear implants at Christmas with Dr. Roberson. His hearing is so much better now! Would love to hear how Kelley's doing now.
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