new to group, just need support and help

[Guest guest]

Thank you Matt. I know I shouldn't be so hard on myself, but well, when it

comes down to being one of your babies... well, you just have that built in

mommy guilt! But I will try to not be so hard on myself and just simply focus

on getting her better and keeping her happy! After all, that's what it's about

right, healthy, happy and noncomplaining after surgery!! LOL

I guess my biggest problem with the whole thing, despite knowing that I did

everything I could, is that she still wound up with something I feel is so

devastating. But I am going to turn it around for good and try to educate as

many people as I can about this disease... our pediatrician, our schools, and

get it out in the community. Apparently it isn't as uncommon as I thought and

more people need to know about it so their children don't have to suffer.

Pamela Waling " smile, it confuses people... "

--- On Wed, 10/15/08,

[Guest guest]

Oh man, if I could have the school nurse teach her I would. She is awesome!

Every time I go to the school to pick Masie up or deal with one of my other kids

she ask me about the latest details. So I am going to print up some stuff for

her so she can have info on it and be informed. She's been great. I am going

to get with the audiologist there at the school also and see if they have any

suggestions for her for when she returns to school. I think as far as her

teacher goes, if she does not reply by tomorrow afternoon, I will be making a

trip up to the school Monday morning to talk to someone. I actually have to

take my 18 month old to her 6 month f/u with her ENT tomorrow... go figure

huh... she had PE tubes put in back in March because of chronic ear infections

for 7 months straight, now I'm totally freaked out and going to have the ENT

examine her like a mad woman. I will be letting them know what is going on with

Masie and see if they think

there is a concern or anything that we might want to keep a watch for with

Abby.

Pamela Waling " smile, it confuses people... "

> >

> > From: Pamela Waling <pamcrt2002@ . com>

> > Subject: new to group, just need

> support

> > and help

> > cholesteatoma

> > Date: Tuesday, October 14, 2008, 9:12 PM

> >

> >

> >

> >

> > Hi everyone...

> >

> > My daughter who will be 6 in November was just

> diagnosed

> > with having a cholesteatoma in

> > her right ear as of last Wednesday. She had surgery to

> have

> > a tube put in her left ear (which

> > is her " normal " ear during the surgery) and

> a

> > polyp removed from her right. The ENT felt he

> > was not able to help her so he sent us to a specialist

> who

> > deals with c-tomas and we saw him

> > today. He wants to do surgery on her on the 27th of

> this

> > month. Apparently hers sticks out

> > into her middle ear and into her mastoid region. It

> has

> > degraded her hearing bones and he

> > thinks he will have to rebuild them at a later date...

> he

> > told me we are looking at 2 surgeries

> > for this.

> >

> > I guess my thoughts/ questions are, how many of you

> were

> > diagnosed with this as kids and it

> > came back as teens/ adults? She does have SIGNIFICANT

> > hearing loss, like 80% (I guess I am

> > using the right term, I am new at this, sorry...) so

> he is

> > not sure of how much she will get

> > back. I am just not sure of what to expect. And he

> said the

> > probability of this coming back is

> > high so she has to be monitored closely for a very

> long

> > time.

> >

> > Any help would be appreciated. I pretty much feel like

> a

> > crappy mom because of this (even

> > though I know it isn't my fault...)

>

> ____________ _________ _________ _________ _________ __

>

[Guest guest]

That's funny! I'm trying to teach a lefty penmanship... I think I have many,

many years ahead of me!! But she's in kindergarten so I think I have time.

Pamela Waling " smile, it confuses people... "

--- On Thu, 10/16/08,

[Guest guest]

I am a school nurse, so it's nice to hear you speak so highly of your child's school nurse. And if it means anything, Gabby has a younger sister who has has 3 sets of tubes and hasn't had an infection in years. Her ears are fine. Good luck at school. > > > > From: Pamela Waling <pamcrt2002@ . com>> > Subject: new to group, just need> support> > and help> > cholesteatoma> > Date: Tuesday, October 14, 2008, 9:12 PM> > > > > > > > > > Hi everyone...> > > > My daughter who will be 6 in November was just> diagnosed> > with having a cholesteatoma in > > her right ear as of last Wednesday. She had surgery to> have> > a tube put in her left ear (which > > is her

"normal" ear during the surgery) and> a> > polyp removed from her right. The ENT felt he > > was not able to help her so he sent us to a specialist> who> > deals with c-tomas and we saw him > > today. He wants to do surgery on her on the 27th of> this> > month. Apparently hers sticks out > > into her middle ear and into her mastoid region. It> has> > degraded her hearing bones and he > > thinks he will have to rebuild them at a later date...> he> > told me we are looking at 2 surgeries > > for this.> > > > I guess my thoughts/ questions are, how many of you> were> > diagnosed with this as kids and it > > came back as teens/ adults? She does have SIGNIFICANT> > hearing loss, like 80% (I guess I am > > using the right term, I am new at this, sorry...)

so> he is> > not sure of how much she will get > > back. I am just not sure of what to expect. And he> said the> > probability of this coming back is > > high so she has to be monitored closely for a very> long> > time. > > > > Any help would be appreciated. I pretty much feel like> a> > crappy mom because of this (even > > though I know it isn't my fault...)> > ____________ _________ _________ _________ _________ __>

[Guest guest]

Pam, OMG! Gabby is a lefty, too. I could not teach her penmanship. She's in fourth grade and has straight A's with a satisfactory in penmanship.

From: Pam Bankston <pamcrt2002@...>Subject: Re: new to group, just need support and helpcholesteatoma Date: Thursday, October 16, 2008, 9:49 PM

That's funny! I'm trying to teach a lefty penmanship.. . I think I have many, many years ahead of me!! But she's in kindergarten so I think I have time.Pamela Waling "smile, it confuses people..."--- On Thu, 10/16/08,

[Guest guest]

I think se will feel much better after the surgery. No I have never seen that fungal infection but I have read about many who have. Sounds nasty!

I bet you can't wait to get that ear all cleaned out.

I hope the surgery goes well and keep us updated. I love that we have this group to share all of our experiences. I don't know what I would do without it!

new to group, just need support and helpcholesteatomaDate: Tuesday, October 14, 2008, 9:12 PM

Hi everyone...My daughter who will be 6 in November was just diagnosed with having a cholesteatoma in her right ear as of last Wednesday. She had surgery to have a tube put in her left ear (which is her "normal" ear during the surgery) and a polyp removed from her right. The ENT felt he was not able to help her so he sent us to a specialist who deals with c-tomas and we saw him today. He wants to do surgery on her on the 27th of this month. Apparently hers sticks out into her middle ear and into her mastoid region. It has degraded her hearing bones and he thinks he will have to rebuild them at a later date... he told me we are looking at 2 surgeries for this.I guess my thoughts/ questions are, how many of you were diagnosed with this as kids and it came back as teens/ adults? She does have SIGNIFICANT hearing loss, like 80% (I guess I am using the right term, I am new at this, sorry...) so he is not sure of how much she will get back. I am just not sure of what to expect. And he said the probability of this coming back is high so she has to be monitored closely for a very long time. Any help would be appreciated. I pretty much feel like a crappy mom because of this (even though I know it isn't my fault...)

[Guest guest]

Hi -

Your poor son - nothing like being signaled out! My son had his teacher

from He*!*!* (how did you say that Matt?) last year in 1st grade. She

told me that she would have to " Yell " at him to get his attention at

times - she rarely left her desk and I thought " why don't you just get

up and go to him " since you know he has a hearing loss! He had returned

to school after having an infection that went to his implant and I

didn't realize he wasn't feeling 100% yet. She made him sit with one

writing assignment for 4 hours and pulled him out of the class. We

looked into getting an FM system to put in the class that amplified the

sound for the whole class, where he did not have to wear the head set

and " look " different(which could maybe cause moisture/ear problems also

or further allergy problems?).

The audiologist didn't know if he truly needed it so we never did the

paper work (IEP or 504 plan). Now this year the teacher says he is

doing fine and has a different attitude toward him and his medical concerns.

Best wishes and tell your son to keep is chin up!

Judy

(ps - I am a preschool teacher, so I know there are other ways to

positively deal with the situation!)

nels4487@... wrote:

>

> Thanks ,

> I am feeling better today and a little less helpless with Nicks

> situation. I decided to make him feel empowered. My husband slapped

> me around a little and reminded me about all of the positive things he

> has done in school such as being the only one to get a 100 on his

> history test.

> As for his teacher, we had a meeting with her and the principal and I

> let her know how bad she made him feel in front of the class. I could

> not believe she could be so thoughtless, but she has a reputation

> of picking on the kids weaknesses. I let her know if I heard one more

> thing she would be back in the office with me. I have heard a few

> kids say Nick is deaf and it really hurts his feelings. I tell them

> we are going to fix it soon with a robotic ear as I am trying not to

> tear up.

> Believe it or not, he has always passed his hearing screenings at

> school. How can that be?

> I have talked to the audiologist about the FM system, but Nick says he

> does not need it and I did not want to push it right now. I think I

> will wait for his next appt in 2 months to re-eval. It is probably

> the wrong way to think, but I don't want to embarrass him. If I find

> he needs it to improve his learning then I will have to make that

> decision for him. I thought I could buy one and install it in the

> class over Christmas break and not even tell him.

> We are reading to him and him to us every night now and I hope that

> helps!

> Thank you so much for the encouragement. I was really feeling

> helpless and guilty for all he is going through.

> P.S. I am a nurse also!

>

>

>

> new to group, just need

> support and help

> cholesteatoma

> Date: Tuesday, October 14, 2008, 9:12 PM

>

> Hi everyone...

>

> My daughter who will be 6 in November was just

> diagnosed with having a cholesteatoma in

> her right ear as of last Wednesday. She had

> surgery to have a tube put in her left ear (which

> is her " normal " ear during the surgery) and a

> polyp removed from her right. The ENT felt he

> was not able to help her so he sent us to a

> specialist who deals with c-tomas and we saw him

> today. He wants to do surgery on her on the 27th

> of this month. Apparently hers sticks out

> into her middle ear and into her mastoid region.

> It has degraded her hearing bones and he

> thinks he will have to rebuild them at a later

> date... he told me we are looking at 2 surgeries

> for this.

>

> I guess my thoughts/ questions are, how many of

> you were diagnosed with this as kids and it

> came back as teens/ adults? She does have

> SIGNIFICANT hearing loss, like 80% (I guess I am

> using the right term, I am new at this, sorry...)

> so he is not sure of how much she will get

> back. I am just not sure of what to expect. And he

> said the probability of this coming back is

> high so she has to be monitored closely for a very

> long time.

>

> Any help would be appreciated. I pretty much feel

> like a crappy mom because of this (even

> though I know it isn't my fault...)

>

>

>

>

>

[Guest guest]

thank you for sharing your experience. I am going to look into the FM system. We are at a private school so I would have to buy it. I have heard that once a teacher uses one, they never want to give it up because it really benefits all the kids. I really hate to single him out so I one with the speakers would be great. We are in the process of doing the paperwork to get him tested and have mixed feelings about the 504 plan which I really know nothing about. You probably do as a teacher so if you have any advice, I would love to hear it.

new to group, just need> support and help> cholesteatoma> Date: Tuesday, October 14, 2008, 9:12 PM>> Hi everyone...>> My daughter who will be 6 in November was just> diagnosed with having a cholesteatoma in> her right ear as of last Wednesday. She had> surgery to have a tube put in her left ear (which> is her "normal" ear during the surgery) and a> polyp removed from her right. The ENT felt he> was not able to help her so he sent us to a> specialist who deals with c-tomas and we saw him> today. He wants to do surgery on her on the 27th> of this month. Apparently hers sticks out> into her middle ear and into her mastoid region.> It has degraded her hearing bones and he> thinks he will have to rebuild them at a later> date... he told me we are looking at 2 surgeries> for this.>> I guess my thoughts/ questions are, how many of> you were diagnosed with this as kids and it> came back as teens/ adults? She does have> SIGNIFICANT hearing loss, like 80% (I guess I am> using the right term, I am new at this, sorry...)> so he is not sure of how much she will get> back. I am just not sure of what to expect. And he> said the probability of this coming back is> high so she has to be monitored closely for a very> long time.>> Any help would be appreciated. I pretty much feel> like a crappy mom because of this (even> though I know it isn't my fault...)>>>>>