RE: Children who have a Cochlear Implant and Auditory Neuropathy

[Guest guest]

Hi,

I can understand why you are concerned. The physician may want to have 's

neurologist involved because he is unfamiliar with the CP. Most likely, his

questions are being asked to make sure that is protected.

My suggestion would be to walk into the office with confidence and a smile.

Don't go in defensively. Tell him exactly what you have told us. Let him talk

to the neurologist so that he feels comfortable with the procedure. It will

probably turn out just fine.

Please let us know what happens and good luck.

Alice

From: Curt & Kim

I have been meaning to post this question for several days now. Many of you

know my son Jaxon's story and that this past Friday he got approved for a

CI. Well, we are meeting with the surgeon a week from tomorrow (Thurs., the

29th) so he can discuss the surgery with us and give us a surgery date. I

was also told via the director of the cochlear implant team that the surgeon

also wants to talk to us because although they are going to implant Jaxon, he

is " very concerned " about the fact that Jaxon has cerebral palsy. I

[Guest guest]

I had another thought on this that I think is worth mentioning.

He may want to put together a specialized team as children with CP sometimes

have special needs with anesthesia. I have a little history with this issue as

I have a son who was originally diagnosed with CP (this diagnosis has since

changed). They were very cautious with any attempt to use anesthesia and made

sure everyone was on the same page. He had several procedures that required him

to be put under and each one was treated with great care.

Alice

From: Alice

I can understand why you are concerned. The physician may want to have

's neurologist involved because he is unfamiliar with the CP. Most

likely, his questions are being asked to make sure that is protected.

My suggestion would be to walk into the office with confidence and a smile.

Don't go in defensively. Tell him exactly what you have told us. Let him talk

to the neurologist so that he feels comfortable with the procedure. It will

probably turn out just fine.

Please let us know what happens and good luck.

Alice

From: Curt & Kim

I have been meaning to post this question for several days now. Many of you

know my son Jaxon's story and that this past Friday he got approved for a

CI. Well, we are meeting with the surgeon a week from tomorrow (Thurs., the

29th) so he can discuss the surgery with us and give us a surgery date. I

was also told via the director of the cochlear implant team that the surgeon

also wants to talk to us because although they are going to implant Jaxon,

he is " very concerned " about the fact that Jaxon has cerebral palsy.

[Guest guest]

Thank you for responding Alice. Your advice is well taken.. I don't

anticipate any problems, but I wanted to make sure I had any info. I needed

in case there were questions as they do seem a bit apprehensive implanting a

child with auditory neuropathy AND a disability like CP. I know they are an

extremely cautious group and that can only be to Jaxon's benefit at this

time.

I don't know how much help Jaxon's neurologist will be. He only saw him

once at 18 months of age to diagnose him with the CP. Jaxon is uninvolved

enough that he has not had to have any follow-up. However, the neurologist

could of course offer any advice re: surgery with CP in general, etc.

I will keep you posted. We have been working hard toward this goal of the

CI for Jaxon and I know it will be just wonderful for him.

Kim

Re: Children who have a Cochlear Implant and Auditory

Neuropathy

Hi,

I can understand why you are concerned. The physician may want to have

's neurologist involved because he is unfamiliar with the CP. Most

likely, his questions are being asked to make sure that is protected.

My suggestion would be to walk into the office with confidence and a smile.

Don't go in defensively. Tell him exactly what you have told us. Let him

talk to the neurologist so that he feels comfortable with the procedure. It

will probably turn out just fine.

Please let us know what happens and good luck.

Alice

From: Curt & Kim

I have been meaning to post this question for several days now. Many of

you know my son Jaxon's story and that this past Friday he got approved for

a

CI. Well, we are meeting with the surgeon a week from tomorrow (Thurs.,

the 29th) so he can discuss the surgery with us and give us a surgery date.

I

was also told via the director of the cochlear implant team that the

surgeon

also wants to talk to us because although they are going to implant Jaxon,

he is " very concerned " about the fact that Jaxon has cerebral palsy. I

[Guest guest]

Again, Alice, advice well taken. I surely appreciate that info.! I hadn't

thought of that. Now, this same Dr. has already performed Jaxon's PE tube

surgery for his ears, but I know that the CI surgery is MUCH more complex

than that.

Thanks so much,

Kim

Re: Children who have a Cochlear Implant and Auditory

Neuropathy

I had another thought on this that I think is worth mentioning.

He may want to put together a specialized team as children with CP sometimes

have special needs with anesthesia. I have a little history with this issue

as I have a son who was originally diagnosed with CP (this diagnosis has

since changed). They were very cautious with any attempt to use anesthesia

and made sure everyone was on the same page. He had several procedures that

required him to be put under and each one was treated with great care.

Alice

From: Alice

I can understand why you are concerned. The physician may want to have

's neurologist involved because he is unfamiliar with the CP. Most

likely, his questions are being asked to make sure that is protected.

My suggestion would be to walk into the office with confidence and a

smile. Don't go in defensively. Tell him exactly what you have told us.

Let him talk to the neurologist so that he feels comfortable with the

procedure. It will probably turn out just fine.

Please let us know what happens and good luck.

Alice

From: Curt & Kim

I have been meaning to post this question for several days now. Many of

you know my son Jaxon's story and that this past Friday he got approved for

a

CI. Well, we are meeting with the surgeon a week from tomorrow (Thurs.,

the 29th) so he can discuss the surgery with us and give us a surgery date.

I

was also told via the director of the cochlear implant team that the

surgeon

also wants to talk to us because although they are going to implant

Jaxon, he is " very concerned " about the fact that Jaxon has cerebral palsy.