RE: Question - please respond/Sue Ann

[Guest guest]

Hi Sue,

Thanks so much for writing me back! Did your son ever have improvement in his

auditory nerve before it stopped working? It's just so weird to me that it went

from abnormal to normal and, again, this darn disease makes me crazy as I want

to know what is going to happen....I mean, I'm thrilled that it's " normal " , but,

acc. to the doc, he could take another ABR next week and it could be " abnormal "

- b/c of Asher's health status at the time... so why do we even test???

Anne R

[Guest guest]

No, we never went from normal to abnormal. However, even with the

Cochlear Implant I could tell things weren't right. , was never

tested often enough to determine that. It wasn't until the stopped

responding to the Implant that I got worried. But, honestly, I knew

things weren't just right for about 6 months prior to the nerve

completely dying.

Hearing IS precious. And since I have experienced both worlds I can say

that in the scheme of things hearing is the least of my worries. I have

easily picked up sign language and have incorporated it into my life. I

am more concerned that if my son's brain couldn't make enough energy to

keep CN VIII going, which one will be next! This made me realize that

MITO is slowly killing my son and that I need to be thankful for

everyday I do have and stop worrying about tomorrow and live each day to

the fullest. There is not a day that goes by that I don't just hold my

son and say I love you. In fact he signed it back for the first time

last week!

Good luck and keep me posted.

Sue Ann

Mother to , 3 and 1/2

RE: Question - please respond/Sue Ann

Hi Sue,

Thanks so much for writing me back! Did your son ever have improvement

in his auditory nerve before it stopped working? It's just so weird to

me that it went from abnormal to normal and, again, this darn disease

makes me crazy as I want to know what is going to happen....I mean, I'm

thrilled that it's " normal " , but, acc. to the doc, he could take another

ABR next week and it could be " abnormal " - b/c of Asher's health status

at the time... so why do we even test???

Anne R

Please contact mito-owner with any problems or

questions.

[Guest guest]

No, we never went from normal to abnormal. However, even with the

Cochlear Implant I could tell things weren't right. , was never

tested often enough to determine that. It wasn't until the stopped

responding to the Implant that I got worried. But, honestly, I knew

things weren't just right for about 6 months prior to the nerve

completely dying.

Hearing IS precious. And since I have experienced both worlds I can say

that in the scheme of things hearing is the least of my worries. I have

easily picked up sign language and have incorporated it into my life. I

am more concerned that if my son's brain couldn't make enough energy to

keep CN VIII going, which one will be next! This made me realize that

MITO is slowly killing my son and that I need to be thankful for

everyday I do have and stop worrying about tomorrow and live each day to

the fullest. There is not a day that goes by that I don't just hold my

son and say I love you. In fact he signed it back for the first time

last week!

Good luck and keep me posted.

Sue Ann

Mother to , 3 and 1/2

RE: Question - please respond/Sue Ann

Hi Sue,

Thanks so much for writing me back! Did your son ever have improvement

in his auditory nerve before it stopped working? It's just so weird to

me that it went from abnormal to normal and, again, this darn disease

makes me crazy as I want to know what is going to happen....I mean, I'm

thrilled that it's " normal " , but, acc. to the doc, he could take another

ABR next week and it could be " abnormal " - b/c of Asher's health status

at the time... so why do we even test???

Anne R

Please contact mito-owner with any problems or

questions.

[Guest guest]

Hi,

I don't remember if I ever said " thanks " for your response - but I really do

appreciate it. It's a wild ride being out here in mito land, where no one knows

what to expect, and it helps to hear from someone who has dealt with the same

things.

Thanks,

Anne R

[Guest guest]

Hi,

I don't remember if I ever said " thanks " for your response - but I really do

appreciate it. It's a wild ride being out here in mito land, where no one knows

what to expect, and it helps to hear from someone who has dealt with the same

things.

Thanks,

Anne R

[Guest guest]

You are very welcome. Please keep me updated. I have been through the

ringer with my son's hearing issues and would like to make it easier on

the next Mito person who has to go through the same thing.

Sue Ann Bube

President, UMDF Indiana

RE: Question - please respond/Sue Ann

Hi,

I don't remember if I ever said " thanks " for your response - but I

really do appreciate it. It's a wild ride being out here in mito land,

where no one knows what to expect, and it helps to hear from someone who

has dealt with the same things.

Thanks,

Anne R

Please contact mito-owner with any problems or

questions.

[Guest guest]

You are very welcome. Please keep me updated. I have been through the

ringer with my son's hearing issues and would like to make it easier on

the next Mito person who has to go through the same thing.

Sue Ann Bube

President, UMDF Indiana

RE: Question - please respond/Sue Ann

Hi,

I don't remember if I ever said " thanks " for your response - but I

really do appreciate it. It's a wild ride being out here in mito land,

where no one knows what to expect, and it helps to hear from someone who

has dealt with the same things.

Thanks,

Anne R

Please contact mito-owner with any problems or

questions.