Re: New Members

[Guest guest]

Welcome and ,

You will find this list to be very

helpful.

My son is 4 and is profoundly deaf in both

ears. He was born 2 months premature and lucky for us was able to breathe

well. He was in NICU for 2 weeks. Later, I figured out that he was

dairy intolerant and he suffered from reflux, but what is reflux/allergic

colitis? Ted was in alot of pain right around his one year mark. Our

peditrician examined him and found nothing. I was told that he was fussy

baby, but I really didn't believe him. Can reflux/allergic colitis lead to

or be a syptom of deafness? I would to learn what you know. Ted is

fine now and loves his school. He's a tough kid.

Liz, mom to Ted in Costa Mesa, CA

[Guest guest]

Welcome & ,

I hope you will find this list as informative and helpful as I have. My son

(also a very sick NICU baby) is now a healthy 4/12 year old. He has a

mild-moderately severe hearing loss probably due to his birth trauma. We

live in RI and do come up to Boston once a year to see Marilyn Neault a

director of audiology services at Boston Children's Hospital. I don't know

who you have as an audie, but we first met Marilyn when was 7 months

old and we clung to her calm and wise words when we had no one else to talk

to. She truly understands children's issues. I highly recommend her services

if that is at all an option for you. When was little, we also saw Dr.

Kenna at Children's for ENT/diagnosis issues and she was wonderful, wise and

comforting as well.

Do let us know if you're coming to RI for the conference (Marilyn is also a

speaker so you could meet her there)-- it might be nice to try to get some

people together to say hello face to face (another list-member, Kerri Hicks

is also in the area).

Good luck to you all.

-Daphne Potter

mom to (4 1/2 HOH), Leo (2 1/2 normally hearing)

[Guest guest]

Hi Daphne:

It's so good to hear that your is thriving! There was a time

when my hubby and I could not see any light at the end of the tunnel

when we were home and desperate for home health aid help as we have

older parents and our closest siblings were 2 and 4 hours away who

helped alot despite the distance and their children needing them.

We currently see Wilbur (and Ann Therese Horning in Boston) at

Childrens audiology in Lexington who has been wonderful. We know

many

parents whose children see Marilyn Kneault who rave about how much

they like her. We haven't had need to meet but I'm sure our paths

will cross. We started out at Mass Eye & Ear (another long story)

and

really liked Dr. Leila Mankarious pediatric ent and we also switch

off

and see Dr. Kenya (the guru of coclear implants it seems) too.

Yes, I'm going to try to attend conference as I really wanted

opportunity to meet Dr. Berlin and Elaine who were so helpful to us

this summer when we had a potential AN diagnosis. 's great aunt

lives in Providence off of I think Blackstone Boulevard so we hope to

stay for the weekend there. I would love to meet up with you and

some

other moms too. will be traveling with me too. Do you know

what

weekend the conference in RI is as my calendar is a shambles these

days.

I was curious, after your nicu experience with your firstborn, did it

take you awhile to decide to have a 2nd child? Any words of wisdom

you would offer in this area? Sounds like you're doing great -

Thanks for the support

, 's Mom

> Welcome & ,

> I hope you will find this list as informative and helpful as I

have.

My son

> (also a very sick NICU baby) is now a healthy 4/12 year old.

He

has a

> mild-moderately severe hearing loss probably due to his birth

trauma. We

> live in RI and do come up to Boston once a year to see Marilyn

Neault a

> director of audiology services at Boston Children's Hospital. I

don't know

> who you have as an audie, but we first met Marilyn when was 7

months

> old and we clung to her calm and wise words when we had no one else

to talk

> to. She truly understands children's issues. I highly recommend her

services

> if that is at all an option for you. When was little, we also

saw Dr.

> Kenna at Children's for ENT/diagnosis issues and she was wonderful,

wise and

> comforting as well.

>

> Do let us know if you're coming to RI for the conference (Marilyn

is

also a

> speaker so you could meet her there)-- it might be nice to try to

get some

> people together to say hello face to face (another list-member,

Kerri Hicks

> is also in the area).

>

> Good luck to you all.

>

> -Daphne Potter

> mom to (4 1/2 HOH), Leo (2 1/2 normally hearing)

[Guest guest]

At 09:52 AM 1/23/01 +0000, you wrote:

> Do you know

>what

>weekend the conference in RI is as my calendar is a shambles these

>days.

Hi . It's Monday, March 12. Hope we can all get together at some point!

[Guest guest]

> Does anyone know more about research being done on LAV/EVA? Is there

> any genetic link suspected? Does LVA/EVA have any other

> correlations? Did anyone else wonder that during their pregnancy that

> flying or an accidental fall may have caused baby's loss since EVA

> kids are affected by barometric changes or head trauma? Does anyone

> keep a database on this EVA stuff or would anyone be interested in

> helping me start one if not?

You'll find quite a few articles linked from this page:

http://www.listen-up.org/med2.htm

Hugs,

Kay

[Guest guest]

This might be a stupid question but, what is LVA/EVA?

I keep seeing this in messages but I have no clue what it is.

Thank you,

Donna

Mother to ny 5

Re: New Members

> > Does anyone know more about research being done on LAV/EVA? Is there

> > any genetic link suspected? Does LVA/EVA have any other

> > correlations? Did anyone else wonder that during their pregnancy that

> > flying or an accidental fall may have caused baby's loss since EVA

> > kids are affected by barometric changes or head trauma? Does anyone

> > keep a database on this EVA stuff or would anyone be interested in

> > helping me start one if not?

>

> You'll find quite a few articles linked from this page:

> http://www.listen-up.org/med2.htm

>

> Hugs,

> Kay

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

[Guest guest]

There is research underway at NIH for LVA associated with genetics. We were

out there this past summer to participate. Yes, kids can have more loss

associated with minor head trauma, playing wind instruments, and even

barometric pressure changes. But doing these things as a pregnant woman

would not cause the aqueducts to enlarge in an unborn infant. Many children

with LVA have other genetic reasons for the cause, Pendred syndrome, BOR,

etc. The hearing losses are generally progressive. There can be problems

with vestibular function, i.e., balance, touch sensitivity.

Kay and I both try to keep up on this sort of stuff. Of course, it can be

impossible to find it all. I know I have been a great slacker with my own

site these past several months. My apologies. Since my own son has this

disorder associated with Pendred's, I do try to keep up with it. Send any

questions my way you feel. Below are a few sites to look through.

http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9733238 & form=6 & db=m &

Dopt=b

http://www.ncbi.nlm.nih.gov/disease/Pendred.html

http://www.nhgri.nih.gov/NEWS/Pendred/pend_media.html

Sherry

sherryzee@...

[Guest guest]

,

Yes, we remember well that difficult first year. But aside from a continuing

paranoia regarding some areas of his

development, he is just our little boy now rather than our sick little boy

or our hard-of-hearing little boy.

Marilyn is a speaker at the AN conference in Providence so you may get to

meet/speak with her then.

It's interesting that 's great-aunt lives off Blackstone Blvd. I live

off Blackstone Blvd. myself! She probably lives on my street, small worlds

being what they are.

The conference is Monday, March 12. Whether I can go or not depends entirely

on getting a sitter for my little one. But even if I can't find a sitter I'd

love to have folks over for coffee/juice/whatever, if it seems like we could

arrange it.

> I was curious, after your nicu experience with your firstborn, did it

> take you awhile to decide to have a 2nd child? Any words of wisdom

> you would offer in this area? Sounds like you're doing great -

To be perfectly honest we didn't even think of it. My problem with my first

son is that my placenta had degenerated creating a hostile environment for

him and he had numerous issues resulting from that and his emergency birth.

But doctors had assured me that they didn't think it would happen again to

me and promised me that they would monitor me like crazy so we wouldn't have

the same ending. But I will admit that I bawled my head off when I went to

the hospital to have my second child and I relived that first horrific

night. But baby #2 was a very healthy birth. The irony of it all is that

after 's early days, he had a very robust constitution, while Leo has

been a much sicker kid-- no hearing loss but several hospitalizations.

It just goes to show you that everybody has some kind of issue going on with

them. Some are more subtle than others, but everybody's got something.

Good luck. Feel free to email me offline if you are coming down for the

meeting.

-Daphne (dfpotter@...)

mom to 4 1/2 & Leo 2 1/2

[Guest guest]

I've been following all of these NICU trauma experiences and just

thought I'd share mine (I don't mean to butt in though).

>

you wrote: The irony of it all is that

> after 's early days, he had a very robust constitution, while

Leo has

> been a much sicker kid-- no hearing loss but several

hospitalizations.

>

> It just goes to show you that everybody has some kind of issue

going on with

> them. Some are more subtle than others, but everybody's got

something.

>

I couldn't agree more! My son was a completely normal pregnancy, with

breech positioning at birth, so a c-section was done. A sloppy job

with the delivery put him in the NICU where he received amp & gent,

ventilation, cpap, and was severly jaundiced. He had some major risk

factors for hearing loss, but had perfect hearing. (He was, still

is, in & out of the hospital, mostly respiratory related.) So, we

decided this was

plenty for us to handle & we were blessed with what we had. What do

ya know, just 2 weeks later, I found out I was pregnant again -- my

first was only 9 months old at the time!

My second pregnancy was monitored for a 2 vessel umbilical cord, but

baby was born perfectly & without complication. She's the one with

the hearing loss - ironic, isn't it?! (She's had her share of

hospital stays too, unrelated to the hl though.)

I wouldn't trade my 2 beauties for the world. I've even come to the

conclusion that it doesn't matter if your baby's healthy, you'll deal

with that. What matters is that your baby's happy!

Just my 2 cents. Thanks for letting me share!

mom to Piper, 7 mos. yesterday, profound bi-lat, & Wyatt, 2 yrs.

[Guest guest]

& Milhaven wrote:

>

> A special note to any parents with unhealthy newborns with hearing

> loss diagnosed at birth. It does get better if you don't think too

> far ahead and just take one day at a time. I found there were times

> we totally dropped the hearing issues and dealt with the highest

> priority, health issues. was home 3 weeks after his hospital

> stay and during March and April he cumulatively got worse and by May

> last year was screaming in pain 24/7 due to reflux/allergic colitis

> which was only diagnosed after 2 consecutive emergency admits.

Sound very familiar, And I agree with you it does get better. Much better.

My daughter was diagnosed with many different things also and it does

become overwhelming and your not sure what to do first. I can say when

I started noticing things that I was told weren't true, that is when I took it

one

day at a time. Are days are full with therapy and classes and doctors

appointments

but now it's part of are everyday life. le has given us the strength we

need to have

to continue to get her the best possible care and the hope that tomorrow is

going

to be much better than today. It took me about nine months to realize that

after

she was born but it does get better. Once we get use to the change these little

ones

bring to our every day life, that we were use to we grow more and more accustom

to it.

>

> We had to make time to bond with having had such a tough start

> and him being our first (that translates to us being totally

> inexperienced parents especially when dealing with hospitals,

> pediatricians,audiologists...). We also learned one truly important

> lesson, that no one knows your child better than you do and if he

> can't talk for himself we have to advocate for him. The

> professionals, doctors, audiologists, etc... see your child for 5

> minutes out of ??? days/year. If you think something is amiss, get

> another opinion and quickly because some treatments may do more harm

> than good.

>

I can't agree with you more.

When le was a baby, I held her all the time,I wanted her to know she was

not alone. I believe it is important to make the bond and enjoy every minute

you can

while they are still little. I feel like I missed out on some of the enjoyment

due to being so overwhelmed, and was glad that one day I figured it out that she

will

let us know what she is going to do and we will love her no less, regardless.

She has been through an awful lot for a little one, and at times my heart goes

out to her

but I truly believe it bothers me more than her. She is happy and full of live

and keeping on

fighting, she is very strong willed and is very determined.

Last but not least when I look over my shoulder, I somehow feel so lucky,

because it isn't all

that bad, and when I see some of these little babies when we are in the

hospitals I feel so

lucky that this is all we are dealing with It does get better, but it could also

be alot worse. . Though I can remember what all of you are feeling just

finding out,

it is very difficult and overwhelming. But it does get better.

>

> I've tried to condense as much as I can, please forgive the rambling.

> Our first 11 months with are something we'll never forget! but

> he's a great tough little cookie with a very hearty chuckle.

>

> Would love to answer any questions that anyone may have. We have been

> learning so much by reading everyone's posts.

>

> Thank you,

>

> & Milhaven

> Maynard MA

>

> All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.