Re: Speech Therapy & some other questions -Sara

[Guest guest]

Sara,

le has many issues that point to chromosome 22q11 deletion syndrome,

however she has been tested 4 times and was found to be normal. She has a

rare eye disorder called 's Anomaly of her Left Eye, referred to as a

scared cornea,causing very limited vision to left eye,sub-aortic stenosis

,developmental delay of her immune system which we hope is resolves, her

levels continue to improve slowly. (recurrent infections and gets real

sick), congenital scoliosis, asthma, allergies, hypernasality in her speech

and is being checked for VPI or a soft palate issue, sacral dimple on bottom

of her spine, sensory issues, and I'm sure I forgot something. However to

look at her you would never know there was a thing wrong. Finding out the

cause of her hearing loss is not important to us anymore, however the

doctors would love to find a syndrome to place her in. le did alot of

catching up between 3 and 4 years of age. She was way behind other children

her age. But made huge gains in her development between 3 & 4 years old.

It seems like forever to us at the time. Now she just continues to amaze

us.

Tesse is adorable, I checked out your web page you did a great job. Hang in

there. Your going through a very difficult stage right now, I can remember

those days so well. It does get easier, I never thought I would be able to

say that, but it does.

Take Care,

Colleen

Speech Therapy and CI candidacy & some other

questions

> >

> >

> > > Hi all,

> > > I haven't really been posting much here, but I did have a few

questions.

> >My

> > > dd has severe to profound hearing loss in both ears. her left ear is

> >70dB

> > > (pretty much across the board), though it used to be 90dB at 250 hz

and

> >went

> > > up to 70dB as the frequencies got higher (backwards of typical HL).

> > > Somehow, though, her low frequency hearing has improved...we aren't

sure

> >if

> > > it was because a little wax was removed or because she is learning to

> > > listen. She is 21 mo old and has no words or even consonant sounds.

> >She

> > > had her aid for about 2 months. She is only aided in her left ear.

Her

> > > right is much worse hearing and is classified as profound....90dB and

> >up.

> > > So, originally we assumed she would get a CI in her right ear.

However,

> >she

> > > was denied candidacy by one clinic. They said her Speech awareness

> > > threshold was 65dB...which I highly doubt...she's never turned to my

> >voice,

> > > even if it is raised. So...anyways...what do you all know about CI

> > > candidacy? We have submitted her records to s Hopkins to see what

> >they

> > > say.

> > >

> > > Next question is speech therapy. We have been told by EI that she

> >doesn't

> > > need speech therapy because she's not trying to form words yet.

> >However,

> >I

> > > would seem to think that if she had a speech therapist who was

> >experienced

> > > working with deaf children, then she could teach her sound awareness.

> >Not

> > > sure what I think about whether she needs it or not. Sometimes I feel

> >like

> > > EI is blowing us off because they don't want to give us anymore

> >services.

> > > It's irritating.

> > >

> > > Finally, does anyone else have problems with hypotonia (low muscle

tone)

> >and

> > > sensory issues. Tessa rolls on the floor a lot and bounces on the

couch

> >a

> > > lot. She also has these periods where she will take our hands and

> >squeeze

> > > them against her cheeks and hold them there. Her special ed teacher

> >thinks

> > > that she has sensory issues and suggested that we put her on a

" sensory

> > > diet " meaning that we help her get that sensory stimulation she needs.

> > > Anyone else have problems with this? could it be a syndrome that we

> >just

> > > don't know about? Well...thanks for all your answers in advance. I

> > > appreciate you all being here. It's nice to talk to people who have

an

> >idea

> > > what it's like...since all tessa's friends are talking all over the

> >place

> > > now. it makes me very sad sometimes...i just want my little girl

to

> > > talk. she does sign though.

> > >

> > > Thanks again,

> > > Sara

> > >

> > >

> > >

> > >

> > >

> > > 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.

> > >