New to group

[Guest guest]

Hi Karin, welcome!

Yes, I too had neuropathy or neuragia if you will, with CD. Since being GF its not recoured without gluteniing. Yes, its painful and no derned fun dropping stuff because you cant feel your hand suddenly.

If you have not yet gone GF, then dont till after your testing is complete. If you feel better then go back on gluten its just pure hell to pay.

Im sure others will be of more help in finding someone near you to help.

Best!

Cassi

Gluten free in downtown Imatra!

[Guest guest]

HI ,

Welcome to you and Abby. I'm , Hayley's mom. Hayley is 14 and

attends the Western PA school for the Deaf in Pittsburgh. (We live

about 4 hours from the school; she goes back and forth on the

weekends). We are originally from CA; all her early education was

in CA. She has been at WPSD since Jan 2005 and we are very happy

with the school. WPSD was our choice; you can also elect special day

classes, mainstream with an interpreter, mainstream w/o an

interppreter, etc. Hayley wears a cochlear implant, but ASL is

her " first " language. There are several of us on the list who sign.

If you type " ASL BROWSER " in a google search, the U of Michigan has

a fairly good site.

Sounds like you all have been thru so much! I wanted to tell you

that I think it's great that you're learning to sign - the earlier

you get any language to your daugther, the better (I wish I had

known more, earlier).

-- In Listen-Up , Sosnow

wrote:

>

> Hi everyone!

>

> I am very excited to become a member of this group - I hope to

learn a lot from your insight and experience. My name is

and my daughter Abby is 13 months old. We live in Phoenix, Arizona -

> develop her language and have begun to teach her sign language.

I am actually starting a class tonight for parents of infants and

todlers with hearing loss.

>

>

[Guest guest]

Welcome ,

I'm Cheryl and my daughter Clara is almost 4. Both of us have a

profound unilateral loss in our left ear. You have had a lot to worry

about with Abby. I'm glad she's made so much progress. Clara had

right coronal synostosis. We live in Connecticut, but I grew up in

the Chicago area (Rockford-not a suburb, but pretty close). :-)

Good luck with your class, that sounds interesting- and learning sign

language.

Cheryl

>

> Hi everyone!

>

> I am very excited to become a member of this group - I hope to learn

a lot from your insight and experience. My name is and my

daughter Abby is 13 months old. We live in Phoenix, Arizona - but are

originally from the Chicago area. My daughter was recently confirmed

to have moderate to severe conductive hearing loss and just got BTE

aids 2 weeks ago. Wow - what a difference they make!! Abby also has

Pierre Robin Sequence and an undiagnosed syndrome along with

Hypothyroidism, mild cardiac defects, metopic synostosis, and mild

delays. She has a tracheostomy and is fed mostly via g-tube. Abby

was in three different hospitals for the first 5 months of her life.

Needless to say that her hearing was the last thing on my mind due to

her other medical issues over the past year. However, within the last

4 months she has made tremendous progress and is no longer dependent

on oxygen and can use a Passy Muir Valve to speak. I am now trying to

foucs on helping her

> develop her language and have begun to teach her sign language. I

am actually starting a class tonight for parents of infants and

todlers with hearing loss. Thank you for letting me be a part of

your special group! Please feel free to visit Abby's Carepage at:

www.carepages.com pagename is: abbymoo.

>

> Please feel free to write to me anytime!

>

> Warm Wishes,

>

>

>

>

> ---------------------------------

> All-new Yahoo! Mail - Fire up a more powerful email and get things

done faster.

>

>

[Guest guest]

Hi and welcome. I'm also a mom to a kid who has had significant medical

issues, so I can

appreciate some of what you have had to deal with. My son Elias, who is 4,

was treated

for High Risk Neuroblastoma when he was 2. The treatment (very high dose

chemo) resulted in moderate-to-severe

bilateral SN loss. He has worn BTE aids for a year. Elias also has a number

of other

issues resulting from treatment such as low muscle tone and balance

problems, and has

to be monitored for heart and kidney problems (only one kidney works now).

He was never on a Gtube,

but was on TPN (IV nutrition) for 9 months, and had a lot of oral aversions

and weak mouth

muscles when he finished the TPN. But he has much improved in the last 2

years since he finished chemo.

These days, his biggest issue probably is the hearing loss.

I've asked a lot of questions here already and gotten lots of good answers.

Bonnie

[Guest guest]

Dear ,

Welcome to the group. My daughter Sierra is five years old, she just started

kindergarten last week. It seems Sierra and your daughter Abby have a lot in

common. Sierra had Multiple Craniosynostosis (Metopic, Sagital, and Bicoronal),

she has a trach, g-tube and a cochlear implant due to her hearing loss and some

other medical problems. It can be overwhelming in the beginning but does get a

little easier with time. I'm guessing you are already set up with early

intervention for therapies, they should also be able to help you and Abby learn

to sign language. Feel free to ask questions. We all learn so much from each

other. Take care and God Bless.

Natasha~Mom to~

(8/25/97) Asthma

Sierra (11/28/00) Multiple Craniosynostosis, Crouzon's Syndrome,

Syndrome, Asthma, Trach, Tracheamalacia,

Bronchomalacia, Subglottic Stenosis, Chonal Stenosis,

FTT,GERD, G-tube & Nissan, Strabismus, Deaf,

CI implanted 8/19/04. Activated 9/7/04

Sierra's story: www.cappskids.org/CAPPSCranioKidSierra.htm

www.tracheostomy.com/trachkids/kids18/sierra.htm

www.Caringbridge.org/oh/sierra

New to Group

Hi everyone!

I am very excited to become a member of this group - I hope to learn a lot

from your insight and experience. My name is and my daughter Abby is 13

months old. We live in Phoenix, Arizona - but are originally from the Chicago

area. My daughter was recently confirmed to have moderate to severe conductive

hearing loss and just got BTE aids 2 weeks ago. Wow - what a difference they

make!! Abby also has Pierre Robin Sequence and an undiagnosed syndrome along

with Hypothyroidism, mild cardiac defects, metopic synostosis, and mild delays.

She has a tracheostomy and is fed mostly via g-tube. Abby was in three different

hospitals for the first 5 months of her life. Needless to say that her hearing

was the last thing on my mind due to her other medical issues over the past

year. However, within the last 4 months she has made tremendous progress and is

no longer dependent on oxygen and can use a Passy Muir Valve to speak. I am now

trying to foucs on helping her

develop her language and have begun to teach her sign language. I am actually

starting a class tonight for parents of infants and todlers with hearing loss.

Thank you for letting me be a part of your special group! Please feel free to

visit Abby's Carepage at: www.carepages.com pagename is: abbymoo.

Please feel free to write to me anytime!

Warm Wishes,

---------------------------------

All-new Yahoo! Mail - Fire up a more powerful email and get things done

faster.

[Guest guest]

Hello! I joined the BV group and someone there mentioned this group. I

was excited that there was a group for these kinds of problems also. I

had always assumed that my problem was BV but some things never added

up. I don't have a smell.. there is not always discharge. The biggest

problem I have is with itching and irritation (the irritation is

mostly from my scratching the itch!) The itch gets especially bad

around the clitoris. I get tiny splits of skin occasionally and

sometimes feel bumps or lumps under places that itch. Can anyone tell

me how to find a doctor in Las Vegas who is knowledgeable about

vulvar/vaginal problems and can actually figure out what I have?

Gail in Vegas