Jillie

[Guest guest]

Hi Everyone,

This is Jillie's Mom ( or Tori). I have been away from the

boards for some time (pre convention to be exact) for various

reasons. I sure have missed you all!!

Jillie is now 3.5 yrs old and in preschool (special ed) with a nurse.

She still has issues with oxygen requirements, prone to infections,

50% GT fed etc etc.. She began walking in July and is trying very

hard to talk. However, she sounds like she has a cleft palate and can

only say certain consanents (f,h,l,m,w) and all vowels. For the

longest time I have been told that she is either deaf, very

cognitively impaired or I'm not pronouncing the words energetically

enough!! Dr H agreed with me that something was probably anatomically

askew in her mouth preventing her speaking intelligibly. I took her

to see a craniofacial team who say that she has some palatal problem

or velo pharyngeal insufficiency. It cannot be determined yet what it

is exactly as she is too young to cooperate with the necessary tests

for accurate diagnosis. However, she will eventually likely need a

graft/flap to close off the escape of air from her nose (the reason

she cannot pronounce most consonants). But because she has a small,

anterior shaped airway, she will need a jaw distraction first.

Because she has a tenuous airway, no one can operate on her for at

least 3 years. And then only if her airway normalizes. She may never

be able to have the surgery. So basically I'm left with a frustrated

3 yr old who cannot be understood by anyone except occasionally me

even though she speaks in sentences. So I'm looking into sign

language and picture communication symbols etc. But I'm so

overwhelmed. I barely can get to the laundry, bills, medical

appointments and food shopping. Now I have to learn a new language.

I'd just lke the world to stop for a while so I can take a breather.

And Dr H confirmed my suppressed fears last week - that Jillie is

definitely a severe RSS kid who may also have another syndrome on top

of her RSS. She has other issues that are not RSS issues - a dilated

aorta, hepatitis (non infectious), tracheomalacia ( a floppy airway),

a narrow, anterior airway, a fused 1st and 2nd rib on one side, and

the speech problem. I don't know if I want to know the other

potential syndrome. The poor kid!!

On top of all of the above, Jillie's had pneumonia, the hospital I

work for is changing health insurances, my 39 yr old brother is in

significant heart failure, my husband is now unemployed, and my

sister is fighting to revoke her soon to be ex husband's parental

rights because of his violent tendencies. And life goes on.

However, I remain truly thankful (on this Thanksgiving day) for my

husband and awesome kids, my job with medical insurance, a house, a

car and food on the table. I hope you all had a great Thanksgiving.

Hugs,

[Guest guest]

Hi - it has been quite a while since we have heard from you.

I don't have any words of wisdom - just hang in there and we are all

here for you and your family.......

later

[Guest guest]

Hi ,

Hang in there. I know it is tough but you are doing a great job. Definitely

look into sign language. I used to do a few words with when she was a

baby just because I heard about it with babies and tried. The few words I did

with her worked wonders.

I'm thinking and praying for you and your entire family.

B

and Kelli

nightnuse4babies wrote:

Hi Everyone,

This is Jillie's Mom ( or Tori). I have been away from the

boards for some time (pre convention to be exact) for various

reasons. I sure have missed you all!!

Jillie is now 3.5 yrs old and in preschool (special ed) with a nurse.

She still has issues with oxygen requirements, prone to infections,

50% GT fed etc etc.. She began walking in July and is trying very

hard to talk. However, she sounds like she has a cleft palate and can

only say certain consanents (f,h,l,m,w) and all vowels. For the

longest time I have been told that she is either deaf, very

cognitively impaired or I'm not pronouncing the words energetically

enough!! Dr H agreed with me that something was probably anatomically

askew in her mouth preventing her speaking intelligibly. I took her

to see a craniofacial team who say that she has some palatal problem

or velo pharyngeal insufficiency. It cannot be determined yet what it

is exactly as she is too young to cooperate with the necessary tests

for accurate diagnosis. However, she will eventually likely need a

graft/flap to close off the escape of air from her nose (the reason

she cannot pronounce most consonants). But because she has a small,

anterior shaped airway, she will need a jaw distraction first.

Because she has a tenuous airway, no one can operate on her for at

least 3 years. And then only if her airway normalizes. She may never

be able to have the surgery. So basically I'm left with a frustrated

3 yr old who cannot be understood by anyone except occasionally me

even though she speaks in sentences. So I'm looking into sign

language and picture communication symbols etc. But I'm so

overwhelmed. I barely can get to the laundry, bills, medical

appointments and food shopping. Now I have to learn a new language.

I'd just lke the world to stop for a while so I can take a breather.

And Dr H confirmed my suppressed fears last week - that Jillie is

definitely a severe RSS kid who may also have another syndrome on top

of her RSS. She has other issues that are not RSS issues - a dilated

aorta, hepatitis (non infectious), tracheomalacia ( a floppy airway),

a narrow, anterior airway, a fused 1st and 2nd rib on one side, and

the speech problem. I don't know if I want to know the other

potential syndrome. The poor kid!!

On top of all of the above, Jillie's had pneumonia, the hospital I

work for is changing health insurances, my 39 yr old brother is in

significant heart failure, my husband is now unemployed, and my

sister is fighting to revoke her soon to be ex husband's parental

rights because of his violent tendencies. And life goes on.

However, I remain truly thankful (on this Thanksgiving day) for my

husband and awesome kids, my job with medical insurance, a house, a

car and food on the table. I hope you all had a great Thanksgiving.

Hugs,

[Guest guest]

Hi ,

Sorry your life is spinning too fast right now. I hope it slows soon because

you are an upbeat person. You are in my prayers. Jillie is a strong girl. It

must be so frustrating knowing what you want and then getting others to respond.

Does she sing? I had a patient once that could not talk but could sing her

sentences. What does your husband do? I can't promise anything but I work in

human resources and can pass his resume on if that would help any. Let me know

if you need anything.

Marcy

nightnuse4babies wrote:

Hi Everyone,

This is Jillie's Mom ( or Tori). I have been away from the

boards for some time (pre convention to be exact) for various

reasons. I sure have missed you all!!

Jillie is now 3.5 yrs old and in preschool (special ed) with a nurse.

She still has issues with oxygen requirements, prone to infections,

50% GT fed etc etc.. She began walking in July and is trying very

hard to talk. However, she sounds like she has a cleft palate and can

only say certain consanents (f,h,l,m,w) and all vowels. For the

longest time I have been told that she is either deaf, very

cognitively impaired or I'm not pronouncing the words energetically

enough!! Dr H agreed with me that something was probably anatomically

askew in her mouth preventing her speaking intelligibly. I took her

to see a craniofacial team who say that she has some palatal problem

or velo pharyngeal insufficiency. It cannot be determined yet what it

is exactly as she is too young to cooperate with the necessary tests

for accurate diagnosis. However, she will eventually likely need a

graft/flap to close off the escape of air from her nose (the reason

she cannot pronounce most consonants). But because she has a small,

anterior shaped airway, she will need a jaw distraction first.

Because she has a tenuous airway, no one can operate on her for at

least 3 years. And then only if her airway normalizes. She may never

be able to have the surgery. So basically I'm left with a frustrated

3 yr old who cannot be understood by anyone except occasionally me

even though she speaks in sentences. So I'm looking into sign

language and picture communication symbols etc. But I'm so

overwhelmed. I barely can get to the laundry, bills, medical

appointments and food shopping. Now I have to learn a new language.

I'd just lke the world to stop for a while so I can take a breather.

And Dr H confirmed my suppressed fears last week - that Jillie is

definitely a severe RSS kid who may also have another syndrome on top

of her RSS. She has other issues that are not RSS issues - a dilated

aorta, hepatitis (non infectious), tracheomalacia ( a floppy airway),

a narrow, anterior airway, a fused 1st and 2nd rib on one side, and

the speech problem. I don't know if I want to know the other

potential syndrome. The poor kid!!

On top of all of the above, Jillie's had pneumonia, the hospital I

work for is changing health insurances, my 39 yr old brother is in

significant heart failure, my husband is now unemployed, and my

sister is fighting to revoke her soon to be ex husband's parental

rights because of his violent tendencies. And life goes on.

However, I remain truly thankful (on this Thanksgiving day) for my

husband and awesome kids, my job with medical insurance, a house, a

car and food on the table. I hope you all had a great Thanksgiving.

Hugs,

[Guest guest]

,

I know you are so busy with your family, both at home and extended.

Having to deal with just one more issue such as learning sign

language just seems insurmountable. But let me assure you about

something: it's not as hard to learn as you fear. I have had to

teach myself some basic signs for a student in my class. With

practice, they have become automatic and part of my everyday use.

That's the key - to use it daily and practice when you can. The

good thing is that Jillie does not know signing herself, so you can

even make up some signs for the two of you to use. Just remember to

always say the words when you sign.

A good sign language book will teach you how to relate to each sign

and that will help you remember. For example, in my book, the sign

for water is three fingers held up against my chin. I think of

water starting with a " W " (the three fingers) and having it dribble

down my chin.

Again, I don't want to trivialize things. I just want to help make

it easier.

Jodi Z

[Guest guest]

Hi ,

I just wanted to say that I agree too with what Jodi said about

taking it a little at a time with the sign language. Noah is quite

far behind with his speech and is just starting to say more words.

He does mostly still speak his own language. He hasn't been

diagnosed with anything as to the cause of this. We are in speech

therapy, but a year or so ago I was watching a talk show and the

actress from Will and Grace was on there talking about teaching signs

to her baby. Children tend to learn them faster and are able to

communicate before actually being able to talk. Well I thought that

was great and picked up two signs from that show and taught them to

Noah. Milk and more ... these were very handy. Through different

people, we have picked up more signs and now the speech therapist

wants to incorporate more ... any communication is good! It is alot

less frustrating for both him and I when trying to figure out what he

wants. And like Jodi said you still say the words too. Alot of

times Noah says the words and then does the sign or vise versa and it

all comes together.

I know it seems like just another thing to add to your plate, but

take it easy and you'll be amazed how fast it comes and how easy it

is to incorporate. Try working on the words that you use more often

in daily life and not so much maybe, right away anyway, on the

letters ... well after reading that back it only makes sense to not

use letters until a child can spell ... oh bother ... I think you get

what I mean anyway.

Good luck!

Dawna

>

> Hi Everyone,

>

> This is Jillie's Mom ( or Tori). I have been away from the

> boards for some time (pre convention to be exact) for various

> reasons. I sure have missed you all!!

>

> Jillie is now 3.5 yrs old and in preschool (special ed) with a

nurse.

> She still has issues with oxygen requirements, prone to infections,

> 50% GT fed etc etc.. She began walking in July and is trying very

> hard to talk. However, she sounds like she has a cleft palate and

can

> only say certain consanents (f,h,l,m,w) and all vowels. For the

> longest time I have been told that she is either deaf, very

> cognitively impaired or I'm not pronouncing the words energetically

> enough!! Dr H agreed with me that something was probably

anatomically

> askew in her mouth preventing her speaking intelligibly. I took her

> to see a craniofacial team who say that she has some palatal

problem

> or velo pharyngeal insufficiency. It cannot be determined yet what

it

> is exactly as she is too young to cooperate with the necessary

tests

> for accurate diagnosis. However, she will eventually likely need a

> graft/flap to close off the escape of air from her nose (the reason

> she cannot pronounce most consonants). But because she has a small,

> anterior shaped airway, she will need a jaw distraction first.

> Because she has a tenuous airway, no one can operate on her for at

> least 3 years. And then only if her airway normalizes. She may

never

> be able to have the surgery. So basically I'm left with a

frustrated

> 3 yr old who cannot be understood by anyone except occasionally me

> even though she speaks in sentences. So I'm looking into sign

> language and picture communication symbols etc. But I'm so

> overwhelmed. I barely can get to the laundry, bills, medical

> appointments and food shopping. Now I have to learn a new language.

> I'd just lke the world to stop for a while so I can take a breather.

> And Dr H confirmed my suppressed fears last week - that Jillie is

> definitely a severe RSS kid who may also have another syndrome on

top

> of her RSS. She has other issues that are not RSS issues - a

dilated

> aorta, hepatitis (non infectious), tracheomalacia ( a floppy

airway),

> a narrow, anterior airway, a fused 1st and 2nd rib on one side, and

> the speech problem. I don't know if I want to know the other

> potential syndrome. The poor kid!!

>

> On top of all of the above, Jillie's had pneumonia, the hospital I

> work for is changing health insurances, my 39 yr old brother is in

> significant heart failure, my husband is now unemployed, and my

> sister is fighting to revoke her soon to be ex husband's parental

> rights because of his violent tendencies. And life goes on.

>

> However, I remain truly thankful (on this Thanksgiving day) for my

> husband and awesome kids, my job with medical insurance, a house, a

> car and food on the table. I hope you all had a great Thanksgiving.

>

> Hugs,

>

>

>

[Guest guest]

, I have often wondered how you all are doing. I will never

forget all of your help, your patience and calmness at the Dr. H

visits at the convention.

Finding the good craniofacial team will be critical, and I hope you

trust the one you have. and I both have had velo pharyngeal

insufficiency (mine was complete insufficiency and not discovered

until age 17, believe it or not; and 's was partial).

Surgery today is quite simple, although having a g-tube is paramount

( didn't have one and had to have a central line placed

because she couldn't eat enough due to the surgery).

Re the mandible expansion -- Van Zandbergen (oh, I have

probably misspelled that, parents are Cheryl and , on the

convention list) -- their daughter had the surgery and they are BIG

proponents of it. Although their daughter was older, it was

outpatient and they felt, quite simple.

I love everyone's postings about learning different signs. I would

question the doctors about why they would need to wait so long for

any corrections. They certainly are the experts, though.

Maybe you can talk to Jovanovich sometime. If anyone can

understand having a severe RSS child who may have other issues that

totally confound all doctors, it would be her!

Jillie is absolutely blessed to have you as her mother. For those

on the listserve who don't know, was a NICU nurse for

years. Do I have that correct, ?

You and Jillie and your family are in our prayers.

>

> Hi Everyone,

>

> This is Jillie's Mom ( or Tori). I have been away from the

> boards for some time (pre convention to be exact) for various

> reasons. I sure have missed you all!!

>

> Jillie is now 3.5 yrs old and in preschool (special ed) with a

nurse.

> She still has issues with oxygen requirements, prone to

infections,

> 50% GT fed etc etc.. She began walking in July and is trying very

> hard to talk. However, she sounds like she has a cleft palate and

can

> only say certain consanents (f,h,l,m,w) and all vowels. For the

> longest time I have been told that she is either deaf, very

> cognitively impaired or I'm not pronouncing the words

energetically

> enough!! Dr H agreed with me that something was probably

anatomically

> askew in her mouth preventing her speaking intelligibly. I took

her

> to see a craniofacial team who say that she has some palatal

problem

> or velo pharyngeal insufficiency. It cannot be determined yet what

it

> is exactly as she is too young to cooperate with the necessary

tests

> for accurate diagnosis. However, she will eventually likely need a

> graft/flap to close off the escape of air from her nose (the

reason

> she cannot pronounce most consonants). But because she has a

small,

> anterior shaped airway, she will need a jaw distraction first.

> Because she has a tenuous airway, no one can operate on her for at

> least 3 years. And then only if her airway normalizes. She may

never

> be able to have the surgery. So basically I'm left with a

frustrated

> 3 yr old who cannot be understood by anyone except occasionally me

> even though she speaks in sentences. So I'm looking into sign

> language and picture communication symbols etc. But I'm so

> overwhelmed. I barely can get to the laundry, bills, medical

> appointments and food shopping. Now I have to learn a new

language.

> I'd just lke the world to stop for a while so I can take a

breather.

> And Dr H confirmed my suppressed fears last week - that Jillie is

> definitely a severe RSS kid who may also have another syndrome on

top

> of her RSS. She has other issues that are not RSS issues - a

dilated

> aorta, hepatitis (non infectious), tracheomalacia ( a floppy

airway),

> a narrow, anterior airway, a fused 1st and 2nd rib on one side,

and

> the speech problem. I don't know if I want to know the other

> potential syndrome. The poor kid!!

>

> On top of all of the above, Jillie's had pneumonia, the hospital I

> work for is changing health insurances, my 39 yr old brother is in

> significant heart failure, my husband is now unemployed, and my

> sister is fighting to revoke her soon to be ex husband's parental

> rights because of his violent tendencies. And life goes on.

>

> However, I remain truly thankful (on this Thanksgiving day) for my

> husband and awesome kids, my job with medical insurance, a house,

a

> car and food on the table. I hope you all had a great

Thanksgiving.

>

> Hugs,

>

>

>

[Guest guest]

- well my dear, you certainly have your share of issues and

my heart goes out to you. I'm sorry you are having to deal with so

many things. I pray things will calm down a little bit for you. As

far as Jillie is concerned - It sounds to me that she has a fabulous

mother and she is seeing some of the best physicians for her health

care. Sign Language is not as complicated as it may seem. I've

actually taken a class myself - just for fun - and it was quite

enjoyable. You could probably teach yourself. My children learned

up to 30 signs each and I will occassionally see my 4 year old using

them still - probably unconsciously. It really made a difference.

Tantrums, poor behvaior, crying - all of these can be a result of

poor communication skills and the sooner you can help Jillie

communicate - the happier you both will be! LOL Let me know how

things are going. If I can find my sign language book - I'd be

happy to send it to you. Let me know.

Take Care.

- H

> >

> > Hi Everyone,

> >

> > This is Jillie's Mom ( or Tori). I have been away from

the

> > boards for some time (pre convention to be exact) for various

> > reasons. I sure have missed you all!!

> >

> > Jillie is now 3.5 yrs old and in preschool (special ed) with a

> nurse.

> > She still has issues with oxygen requirements, prone to

infections,

> > 50% GT fed etc etc.. She began walking in July and is trying

very

> > hard to talk. However, she sounds like she has a cleft palate

and

> can

> > only say certain consanents (f,h,l,m,w) and all vowels. For the

> > longest time I have been told that she is either deaf, very

> > cognitively impaired or I'm not pronouncing the words

energetically

> > enough!! Dr H agreed with me that something was probably

> anatomically

> > askew in her mouth preventing her speaking intelligibly. I took

her

> > to see a craniofacial team who say that she has some palatal

> problem

> > or velo pharyngeal insufficiency. It cannot be determined yet

what

> it

> > is exactly as she is too young to cooperate with the necessary

> tests

> > for accurate diagnosis. However, she will eventually likely need

a

> > graft/flap to close off the escape of air from her nose (the

reason

> > she cannot pronounce most consonants). But because she has a

small,

> > anterior shaped airway, she will need a jaw distraction first.

> > Because she has a tenuous airway, no one can operate on her for

at

> > least 3 years. And then only if her airway normalizes. She may

> never

> > be able to have the surgery. So basically I'm left with a

> frustrated

> > 3 yr old who cannot be understood by anyone except occasionally

me

> > even though she speaks in sentences. So I'm looking into sign

> > language and picture communication symbols etc. But I'm so

> > overwhelmed. I barely can get to the laundry, bills, medical

> > appointments and food shopping. Now I have to learn a new

language.

> > I'd just lke the world to stop for a while so I can take a

breather.

> > And Dr H confirmed my suppressed fears last week - that Jillie

is

> > definitely a severe RSS kid who may also have another syndrome

on

> top

> > of her RSS. She has other issues that are not RSS issues - a

> dilated

> > aorta, hepatitis (non infectious), tracheomalacia ( a floppy

> airway),

> > a narrow, anterior airway, a fused 1st and 2nd rib on one side,

and

> > the speech problem. I don't know if I want to know the other

> > potential syndrome. The poor kid!!

> >

> > On top of all of the above, Jillie's had pneumonia, the hospital

I

> > work for is changing health insurances, my 39 yr old brother is

in

> > significant heart failure, my husband is now unemployed, and my

> > sister is fighting to revoke her soon to be ex husband's

parental

> > rights because of his violent tendencies. And life goes on.

> >

> > However, I remain truly thankful (on this Thanksgiving day) for

my

> > husband and awesome kids, my job with medical insurance, a

house, a

> > car and food on the table. I hope you all had a great

Thanksgiving.

> >

> > Hugs,

> >

> >

> >

>