Re: Help, Sara has a throat ubstruction

[Guest guest]

My son n had the same thing. He had a tissue growth on his aritnoids

and it would flop open when he breathed out and would obstruct his airway

when he would try to breathe in. They found it when he was in nicu doing all

of

the tests. n was trached and the growth went away after about 2 1/2

years. They went in and did laser work on the area after they removed his

trach. We had all of this treatment done at Kaiser Permanente in San Diego.

We

never knew what it was technically. We had docs from UCSD, USD and San

Diego Naval Doc eval and no one knew what it was. They didn't want to

surgically

remove it because it was close to his vocal chords. All I know is that as

he got bigger it shrunk.

I know its not much help but I will keep you in our prayers

Sundi

mom to n (13)

[Guest guest]

,

I can't help at all except to offer prayers.

Blessings and Hugs,

Lynn

Help, Sara has a throat ubstruction

Sara has been admitted to the hospital, at the ENT sleep apnea

appointment, he preformed a laryngoscopy. He observed while she was

crying, a large pouch of tissue, that inflated and deflated with air

in correlation with her breathing/crying. When inflated it blocks

her air ways. Does anyone know what this is??? The ENT said,

" I've never seen anything like this " . They will do an MRI and

endoscopy under ansethishia and possibly surgery tomorrow. There is

talk of consulting specialists in Cinncinati. We and the doctors are

at a loss, any info. would be helpful. Thanks,

Mark

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

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

[Guest guest]

No answers , but am glad they are checking into it, so it can be

taken care of. Kim L

>

>

> Sara has been admitted to the hospital, at the ENT sleep apnea

> appointment, he preformed a laryngoscopy. He observed while she was

> crying, a large pouch of tissue, that inflated and deflated with air

> in correlation with her breathing/crying. When inflated it blocks

> her air ways. Does anyone know what this is??? The ENT said,

> " I've never seen anything like this " . They will do an MRI and

> endoscopy under ansethishia and possibly surgery tomorrow. There is

> talk of consulting specialists in Cinncinati. We and the doctors are

> at a loss, any info. would be helpful. Thanks,

> Mark

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

i know that people all over the world do use doc robin cotton at

cinnci. he is the doc that a lot trach kids go to when other ents

are perplexed, the people that use him for there trach kids really

like him. so your docs are doing the right thing, if i recall your

daughter had her cleft fixed? have you talked the cranial facial team?

you can try searching medical school websites, they can helpful.

good luck

mom to anthony 18 1/2 months

>

> >

> >

> > Sara has been admitted to the hospital, at the ENT sleep apnea

> > appointment, he preformed a laryngoscopy. He observed while she

was

> > crying, a large pouch of tissue, that inflated and deflated with

air

> > in correlation with her breathing/crying. When inflated it blocks

> > her air ways. Does anyone know what this is??? The ENT said,

> > " I've never seen anything like this " . They will do an MRI and

> > endoscopy under ansethishia and possibly surgery tomorrow. There

is

> > talk of consulting specialists in Cinncinati. We and the doctors

are

> > at a loss, any info. would be helpful. Thanks,

> > Mark

> >

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute

membership in the

> > CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter)

> > please contact marion@c... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 7th International

> > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

2005.

> > Information will be available at our website

> > www.chargesyndrome.org or by calling 1-. In Canada,

you may

> > contact CHARGE Syndrome Canada at 1- (families), visit

> > www.chargesyndrome.ca, or email info@c... Thank you!

> >

> >

[Guest guest]

Weird! I hope it gets resolved! I hope you are feeling ok about it

all. None of us likes to get hit with another brick, but it's worse

when it's one we can't even identify!!!!

Mark wrote:

>

> Sara has been admitted to the hospital, at the ENT sleep apnea

> appointment, he preformed a laryngoscopy. He observed while she was

> crying, a large pouch of tissue, that inflated and deflated with air

> in correlation with her breathing/crying. When inflated it blocks

> her air ways. Does anyone know what this is??? The ENT said,

> " I've never seen anything like this " . They will do an MRI and

> endoscopy under ansethishia and possibly surgery tomorrow. There is

> talk of consulting specialists in Cinncinati. We and the doctors are

> at a loss, any info. would be helpful. Thanks,

> Mark

[Guest guest]

I have nothing to offer but thoughts, prayers and hugs!!!

maria

Help, Sara has a throat ubstruction

>

>

> Sara has been admitted to the hospital, at the ENT sleep apnea

> appointment, he preformed a laryngoscopy. He observed while she was

> crying, a large pouch of tissue, that inflated and deflated with air

> in correlation with her breathing/crying. When inflated it blocks

> her air ways. Does anyone know what this is??? The ENT said,

> " I've never seen anything like this " . They will do an MRI and

> endoscopy under ansethishia and possibly surgery tomorrow. There is

> talk of consulting specialists in Cinncinati. We and the doctors are

> at a loss, any info. would be helpful. Thanks,

> Mark

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

:

While I can't help explain what the problem might be, I can say that I have

heard nothing but good things about the ENT docs in Cincinnati.

Dr. Rutter from the Otolaryngology Dept. at Cincinnati presented at

the 2001 CHARGE Conference in Indy and I believe he got very good comments.

And I think he's dealt with several CHARGErs before. He actually presented

for another collegue who we had tried to get, but his schedule wasn't as

flexible. Seems like they have several doctors who are familiar with

CHARGE, and they are known to have good results with unique airway problems.

Good luck.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+)

Wife of Rick

oganm@...

oganr@...

Mark wrote:

>

> Sara has been admitted to the hospital, at the ENT sleep apnea

> appointment, he preformed a laryngoscopy. He observed while she was

> crying, a large pouch of tissue, that inflated and deflated with air

> in correlation with her breathing/crying. When inflated it blocks

> her air ways. Does anyone know what this is??? The ENT said,

> " I've never seen anything like this " . They will do an MRI and

> endoscopy under ansethishia and possibly surgery tomorrow. There is

> talk of consulting specialists in Cinncinati. We and the doctors are

> at a loss, any info. would be helpful. Thanks,

> Mark

[Guest guest]

thinking of u...

" hugs "

RE: Help, Sara has a throat ubstruction

>

>

> :

>

> While I can't help explain what the problem might be, I can say that I

> have

> heard nothing but good things about the ENT docs in Cincinnati.

> Dr. Rutter from the Otolaryngology Dept. at Cincinnati presented

> at

> the 2001 CHARGE Conference in Indy and I believe he got very good

> comments.

> And I think he's dealt with several CHARGErs before. He actually

> presented

> for another collegue who we had tried to get, but his schedule wasn't as

> flexible. Seems like they have several doctors who are familiar with

> CHARGE, and they are known to have good results with unique airway

> problems.

> Good luck.

> Friends in CHARGE,

> Marilyn Ogan

> Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+)

> Wife of Rick

> oganm@...

> oganr@...

>

>

>

>

> Mark wrote:

>

>>

>> Sara has been admitted to the hospital, at the ENT sleep apnea

>> appointment, he preformed a laryngoscopy. He observed while she was

>> crying, a large pouch of tissue, that inflated and deflated with air

>> in correlation with her breathing/crying. When inflated it blocks

>> her air ways. Does anyone know what this is??? The ENT said,

>> " I've never seen anything like this " . They will do an MRI and

>> endoscopy under ansethishia and possibly surgery tomorrow. There is

>> talk of consulting specialists in Cinncinati. We and the doctors are

>> at a loss, any info. would be helpful. Thanks,

>> Mark

>

>

>

>

>

[Guest guest]

- I hope the drs find out more about what is happening with Sara. I

don't have any advice, but if you need another ENT opinion, please let me know

and I can give you the name of Ethan's ENT (we're in Chicago) who did his

choanal atresia, trach,etc. He was fellowship trained in Cinncinati.

Jody

Mark wrote:

Sara has been admitted to the hospital, at the ENT sleep apnea

appointment, he preformed a laryngoscopy. He observed while she was

crying, a large pouch of tissue, that inflated and deflated with air

in correlation with her breathing/crying. When inflated it blocks

her air ways. Does anyone know what this is??? The ENT said,

" I've never seen anything like this " . They will do an MRI and

endoscopy under ansethishia and possibly surgery tomorrow. There is

talk of consulting specialists in Cinncinati. We and the doctors are

at a loss, any info. would be helpful. Thanks,

Mark

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information

will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may contact

CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

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

[Guest guest]

How old is Sara? Trying to distinguish some of the young adult

issues, ie. (2)cases of obstructions with other young adults were

diet related with swelling and scar tissue from reflux. Keep posted

and hope you find an ENT who can help and let everyone know the

mystery.

Ann Gloyn

Education Specialist

>

> Sara has been admitted to the hospital, at the ENT sleep apnea

> appointment, he preformed a laryngoscopy. He observed while she

was

> crying, a large pouch of tissue, that inflated and deflated with

air

> in correlation with her breathing/crying. When inflated it blocks

> her air ways. Does anyone know what this is??? The ENT said,

> " I've never seen anything like this " . They will do an MRI and

> endoscopy under ansethishia and possibly surgery tomorrow. There

is

> talk of consulting specialists in Cinncinati. We and the doctors

are

> at a loss, any info. would be helpful. Thanks,

> Mark

[Guest guest]

Ann,

Sara is 10 months old. The " bubble " is posterior on her esophagus,

just above her larnyx (I hope I've described it correctly). Another

theory raised today is that it is a prolapse of the lining of her

esoph. I disagree though, b/c I saw it myself through the scope,

and it was a perfectly round bubble, not sliding tissue. It has

also been called laryngoseel (SP?) mistakenly by some nurses- I

guess that's more like a flap of flesh that blows up and down. On

Mon she will have a flouroscope (sp?) done- its like a video xray of

her lungs, to see if it is her lung protruding up into her neck. We

have watched and see that she does not desat when she cries, so it

does not totally block her airway, and may not even be the cause of

the apnea we were looking for to begin with- that may be from scar

tissue or swelling from her palate closure. We know that if really

necessary they can give her a trach, but we're not there yet, so

I'll take the waiting!!

thanks,

Mark

> >

> > Sara has been admitted to the hospital, at the ENT sleep apnea

> > appointment, he preformed a laryngoscopy. He observed while she

> was

> > crying, a large pouch of tissue, that inflated and deflated with

> air

> > in correlation with her breathing/crying. When inflated it

blocks

> > her air ways. Does anyone know what this is??? The ENT said,

> > " I've never seen anything like this " . They will do an MRI and

> > endoscopy under ansethishia and possibly surgery tomorrow. There

> is

> > talk of consulting specialists in Cinncinati. We and the doctors

> are

> > at a loss, any info. would be helpful. Thanks,

> > Mark

[Guest guest]

,

I have been thinking and thinking of Sara's situation. You must be very

frustrated. This is kind of different but I wanted to share a story. When

Patty

was born we were told she had reflux because the flap that holds food down in

her stomach hadn't developed fully. (but she was not tube fed and didn't have

a trach) They knew this by doing a scope. Because of that she was always in

an upright position, even her crib was at this slant where we had to tie her

in bed or she would slip down. Then she also didn't make much noise when she

cried. We were told her vocal cords didn't develop fully and were short and

couldn't vibrate. We were told because of that and her hearing impairment and

her oral motor issues that she would never talk. Although Patty never was tube

fed it was a long haul. She learned how to swallow. And she learned how to

make noises. I really think her " flaps " grew even though we were told that

would be an impossibility. Oops, wrong! At first she sounded like a sheep in

the distance. That too was a long haul but now we call her Chatty Patty.

It wasn't until she was around 14 that they did a swallow study. There they

found her swallow to be uneven. Duh! But they also found this little pouch

thing. All Patty's life when she would eat sometimes she would cough and press

on her neck. That's where the pouch is. It is small but it is big enough to

pool up food. I have heard of other CHARGE children with similar things like

this. I guess that is why I keep thinking of you. There just has to be an

answer. Have you contacted Meg?

My point is, gosh I just don't know. It is just that when Patty was around

10 months I remember that time to be scary. I felt like I was walking in a

fog. Bad news just kept coming and coming. I also remember it was around that

time that she held her head up for the first time. What a miracle that was. It

was then I learned, ever so slowly, that every smile, ever task accomplished

and every thing in life is a gift. Each day is something to rejoice. It was

then I learned the " secret " of being a parent of a child with special needs.

There is so much in life that we take for granted. Even breathing. The fear

you have is great, but don't let it control you. Take a minute to slow down.

Focus your mind on one good thing that happened each day. That just might give

you the strength to go through this scary time.

I wish you the best.

Bonnie, mom to a 22, Patty CHARGE 20, wife to

[Guest guest]

Bonnie-

Did you know that the pouch thing is exactly what has been going on with

Doolittle? Her's became huge and causes big problems -- stuff

pooling, saliva, mucous, in a warm cozy environment -- blah-- not good.

She's had surgery to correct that and many other digestive issues. I

haven't heard from Sheryl in a while so I hope that is good. I didn't

remember making the connection to what Patty had and what had.

Jess did the same thing - pushing on her throat when eating -- for years.

Michele W

>

[Guest guest]

,

My son Mark now 21 had multiple abnormalities to his esophagus.

He was born with a TEF which was repaired but his esophagus did not function

properly for years. He was tube fed until age 11 and we have slowly progressed

to a soft/ground diet as of now. Sorry to hear of Sara's troubles.

[Guest guest]

thank you bonnie.. tho not directed at me you just reminded me how to

get through the day from hades...

calming down now

Cole :-/

> ,

>

> I have been thinking and thinking of Sara's situation. You must be very

> frustrated. This is kind of different but I wanted to share a story. When

> Patty

> was born we were told she had reflux because the flap that holds food down

> in

> her stomach hadn't developed fully. (but she was not tube fed and didn't

> have

> a trach) They knew this by doing a scope. Because of that she was always in

> an upright position, even her crib was at this slant where we had to tie her

> in bed or she would slip down. Then she also didn't make much noise when

> she

> cried. We were told her vocal cords didn't develop fully and were short and

> couldn't vibrate. We were told because of that and her hearing impairment

> and

> her oral motor issues that she would never talk. Although Patty never was

> tube

> fed it was a long haul. She learned how to swallow. And she learned how to

> make noises. I really think her " flaps " grew even though we were told that

> would be an impossibility. Oops, wrong! At first she sounded like a sheep

> in

> the distance. That too was a long haul but now we call her Chatty Patty.

>

> It wasn't until she was around 14 that they did a swallow study. There they

> found her swallow to be uneven. Duh! But they also found this little pouch

> thing. All Patty's life when she would eat sometimes she would cough and

> press

> on her neck. That's where the pouch is. It is small but it is big enough

> to

> pool up food. I have heard of other CHARGE children with similar things like

> this. I guess that is why I keep thinking of you. There just has to be an

> answer. Have you contacted Meg?

>

> My point is, gosh I just don't know. It is just that when Patty was around

> 10 months I remember that time to be scary. I felt like I was walking in a

> fog. Bad news just kept coming and coming. I also remember it was around

> that

> time that she held her head up for the first time. What a miracle that was.

> It

> was then I learned, ever so slowly, that every smile, ever task accomplished

> and every thing in life is a gift. Each day is something to rejoice. It was

> then I learned the " secret " of being a parent of a child with special needs.

>

> There is so much in life that we take for granted. Even breathing. The fear

> you have is great, but don't let it control you. Take a minute to slow

> down.

> Focus your mind on one good thing that happened each day. That just might

> give

> you the strength to go through this scary time.

>

> I wish you the best.

>

> Bonnie, mom to a 22, Patty CHARGE 20, wife to

>

>

>

[Guest guest]

Bonnie,

I am replying with tears running down my face b/c we have just been

officially referred to cincinatti. During a swallow study today they

saw that sara's esophagus has a portion which does not move, and

swallow with the rest of her esophagus. It creates a pouch when the

rest of her esophagus constricts to swallow, and pushes forward into

her trachea. No one here will even comment on how it will effect

her, or what to do about it. I have not contacted Meg, but will

now... or maybe she will see some of these emails. I saw more

responses to our thread that I havent read yet, because I had to stop

& respond to this one.

sincerely and tearfully yours,

> ,

>

> I have been thinking and thinking of Sara's situation. You must be

very

> frustrated. This is kind of different but I wanted to share a

story. When Patty

> was born we were told she had reflux because the flap that holds

food down in

> her stomach hadn't developed fully. (but she was not tube fed and

didn't have

> a trach) They knew this by doing a scope. Because of that she was

always in

> an upright position, even her crib was at this slant where we had

to tie her

> in bed or she would slip down. Then she also didn't make much

noise when she

> cried. We were told her vocal cords didn't develop fully and were

short and

> couldn't vibrate. We were told because of that and her hearing

impairment and

> her oral motor issues that she would never talk. Although Patty

never was tube

> fed it was a long haul. She learned how to swallow. And she

learned how to

> make noises. I really think her " flaps " grew even though we were

told that

> would be an impossibility. Oops, wrong! At first she sounded like

a sheep in

> the distance. That too was a long haul but now we call her Chatty

Patty.

>

> It wasn't until she was around 14 that they did a swallow study.

There they

> found her swallow to be uneven. Duh! But they also found this

little pouch

> thing. All Patty's life when she would eat sometimes she would

cough and press

> on her neck. That's where the pouch is. It is small but it is big

enough to

> pool up food. I have heard of other CHARGE children with similar

things like

> this. I guess that is why I keep thinking of you. There just has

to be an

> answer. Have you contacted Meg?

>

> My point is, gosh I just don't know. It is just that when Patty

was around

> 10 months I remember that time to be scary. I felt like I was

walking in a

> fog. Bad news just kept coming and coming. I also remember it was

around that

> time that she held her head up for the first time. What a miracle

that was. It

> was then I learned, ever so slowly, that every smile, ever task

accomplished

> and every thing in life is a gift. Each day is something to

rejoice. It was

> then I learned the " secret " of being a parent of a child with

special needs.

> There is so much in life that we take for granted. Even breathing.

The fear

> you have is great, but don't let it control you. Take a minute to

slow down.

> Focus your mind on one good thing that happened each day. That

just might give

> you the strength to go through this scary time.

>

> I wish you the best.

>

> Bonnie, mom to a 22, Patty CHARGE 20, wife to

>

>

>

[Guest guest]

Michele,

please tell me more about Doolittle.....I'm interested in how

they helped her surgically. Does she have a trach?

> Bonnie-

> Did you know that the pouch thing is exactly what has been going on

with

> Doolittle? Her's became huge and causes big problems --

stuff

> pooling, saliva, mucous, in a warm cozy environment -- blah-- not

good.

> She's had surgery to correct that and many other digestive issues.

I

> haven't heard from Sheryl in a while so I hope that is good. I

didn't

> remember making the connection to what Patty had and what

had.

> Jess did the same thing - pushing on her throat when eating -- for

years.

>

> Michele W

>

> >

>

>

>

[Guest guest]

Bonnie,

Oh yeah two GOOD things happened this weekend, she waved bye bye

(more than once), and said ma-ma. Can you believe it? I feel like

I'm in a hallmark movie

counting my blessings,

> > ,

> >

> > I have been thinking and thinking of Sara's situation. You must

be very

> > frustrated. This is kind of different but I wanted to share a

story. When

> > Patty

> > was born we were told she had reflux because the flap that holds

food down

> > in

> > her stomach hadn't developed fully. (but she was not tube fed

and didn't

> > have

> > a trach) They knew this by doing a scope. Because of that she

was always in

> > an upright position, even her crib was at this slant where we had

to tie her

> > in bed or she would slip down. Then she also didn't make much

noise when

> > she

> > cried. We were told her vocal cords didn't develop fully and

were short and

> > couldn't vibrate. We were told because of that and her hearing

impairment

> > and

> > her oral motor issues that she would never talk. Although Patty

never was

> > tube

> > fed it was a long haul. She learned how to swallow. And she

learned how to

> > make noises. I really think her " flaps " grew even though we were

told that

> > would be an impossibility. Oops, wrong! At first she sounded

like a sheep

> > in

> > the distance. That too was a long haul but now we call her

Chatty Patty.

> >

> > It wasn't until she was around 14 that they did a swallow study.

There they

> > found her swallow to be uneven. Duh! But they also found this

little pouch

> > thing. All Patty's life when she would eat sometimes she would

cough and

> > press

> > on her neck. That's where the pouch is. It is small but it is

big enough

> > to

> > pool up food. I have heard of other CHARGE children with similar

things like

> > this. I guess that is why I keep thinking of you. There just has

to be an

> > answer. Have you contacted Meg?

> >

> > My point is, gosh I just don't know. It is just that when Patty

was around

> > 10 months I remember that time to be scary. I felt like I was

walking in a

> > fog. Bad news just kept coming and coming. I also remember it

was around

> > that

> > time that she held her head up for the first time. What a

miracle that was.

> > It

> > was then I learned, ever so slowly, that every smile, ever task

accomplished

> > and every thing in life is a gift. Each day is something to

rejoice. It was

> > then I learned the " secret " of being a parent of a child with

special needs.

> >

> > There is so much in life that we take for granted. Even

breathing. The fear

> > you have is great, but don't let it control you. Take a minute

to slow

> > down.

> > Focus your mind on one good thing that happened each day. That

just might

> > give

> > you the strength to go through this scary time.

> >

> > I wish you the best.

> >

> > Bonnie, mom to a 22, Patty CHARGE 20, wife to

> >

> >

> >

[Guest guest]

Let me email Sheryl and see what's going on there and get her in contact

with you directly. I think you'll find comfort in each other as well as

sharing information.

Hugs-

Michele

Mark wrote:

>

> Michele,

> please tell me more about Doolittle.....I'm interested in how

> they helped her surgically. Does she have a trach?

>

>

>

>

>

> > Bonnie-

> > Did you know that the pouch thing is exactly what has been going on

> with

> > Doolittle? Her's became huge and causes big problems --

> stuff

> > pooling, saliva, mucous, in a warm cozy environment -- blah-- not

> good.

> > She's had surgery to correct that and many other digestive issues.

> I

> > haven't heard from Sheryl in a while so I hope that is good. I

> didn't

> > remember making the connection to what Patty had and what

> had.

> > Jess did the same thing - pushing on her throat when eating -- for

> years.

> >

> > Michele W

> >

> > >

> >

> >

> >

[Guest guest]

I emailed Sheryl and gave her your email addy so she may reply directly

from you but I don't know how soon because I have no idea what's going

on there. The last I knew, was in the hospital post surgery.

She was in a medically-induced coma-like state -- keeping her sedated

and still during recovery. I haven't heard how the surgery went or what

they did for the pouch. They had several other GI issues to address as

well. I can't remember, but I don't think Jess has a trach now. I'm

not sure if she ever did.

Hang in there, . Our thoughts are with you.

Michele

>

[Guest guest]

Thankyou Michele! I'm heading back to Sara's bedside, I'll check in

later.

> I emailed Sheryl and gave her your email addy so she may reply

directly

> from you but I don't know how soon because I have no idea what's

going

> on there. The last I knew, was in the hospital post

surgery.

> She was in a medically-induced coma-like state -- keeping her

sedated

> and still during recovery. I haven't heard how the surgery went or

what

> they did for the pouch. They had several other GI issues to

address as

> well. I can't remember, but I don't think Jess has a trach now.

I'm

> not sure if she ever did.

>

> Hang in there, . Our thoughts are with you.

>

> Michele

>

> >

>

>

>

[Guest guest]

are they suggesting a trach at this point?

mom to anthony 19 months

> > I emailed Sheryl and gave her your email addy so she may reply

> directly

> > from you but I don't know how soon because I have no idea what's

> going

> > on there. The last I knew, was in the hospital post

> surgery.

> > She was in a medically-induced coma-like state -- keeping her

> sedated

> > and still during recovery. I haven't heard how the surgery went

or

> what

> > they did for the pouch. They had several other GI issues to

> address as

> > well. I can't remember, but I don't think Jess has a trach

now.

> I'm

> > not sure if she ever did.

> >

> > Hang in there, . Our thoughts are with you.

> >

> > Michele

> >

> > >

> >

> >

> >

[Guest guest]

,

Thankyou for sharing that. If you dont mind my asking, what is a

TEF? Thankyou!

> ,

> My son Mark now 21 had multiple abnormalities to his

esophagus.

> He was born with a TEF which was repaired but his esophagus did not

function

> properly for years. He was tube fed until age 11 and we have slowly

progressed

> to a soft/ground diet as of now. Sorry to hear of Sara's

troubles.

>

>

>

>

[Guest guest]

A trach has been mentioned several times as a last resort. Thats

what I'm most afraid of. She's beginning to be so vocal, that will

just break my heart. I know it could be much worse, I'm just scared

I guess.

> > > I emailed Sheryl and gave her your email addy so she may reply

> > directly

> > > from you but I don't know how soon because I have no idea

what's

> > going

> > > on there. The last I knew, was in the hospital post

> > surgery.

> > > She was in a medically-induced coma-like state -- keeping her

> > sedated

> > > and still during recovery. I haven't heard how the surgery

went

> or

> > what

> > > they did for the pouch. They had several other GI issues to

> > address as

> > > well. I can't remember, but I don't think Jess has a trach

> now.

> > I'm

> > > not sure if she ever did.

> > >

> > > Hang in there, . Our thoughts are with you.

> > >

> > > Michele

> > >

> > > >

> > >

> > >

> > >

[Guest guest]

Your message made me smile. Just when I have to tell myself hourly that " I can

do this " my will throw me a bone and sign or say or do something that I

desperately need! These kids! So frustrating but I've never had a deeper love!

Hang in there.

Lori Myers

-------------- Original message --------------

>

>

> Bonnie,

> Oh yeah two GOOD things happened this weekend, she waved bye bye

> (more than once), and said ma-ma. Can you believe it? I feel like

> I'm in a hallmark movie

> counting my blessings,

>

>

>

>

>

> > > ,

> > >

> > > I have been thinking and thinking of Sara's situation. You must

> be very

> > > frustrated. This is kind of different but I wanted to share a

> story. When

> > > Patty

> > > was born we were told she had reflux because the flap that holds

> food down

> > > in

> > > her stomach hadn't developed fully. (but she was not tube fed

> and didn't

> > > have

> > > a trach) They knew this by doing a scope. Because of that she

> was always in

> > > an upright position, even her crib was at this slant where we had

> to tie her

> > > in bed or she would slip down. Then she also didn't make much

> noise when

> > > she

> > > cried. We were told her vocal cords didn't develop fully and

> were short and

> > > couldn't vibrate. We were told because of that and her hearing

> impairment

> > > and

> > > her oral motor issues that she would never talk. Although Patty

> never was

> > > tube

> > > fed it was a long haul. She learned how to swallow. And she

> learned how to

> > > make noises. I really think her " flaps " grew even though we were

> told that

> > > would be an impossibility. Oops, wrong! At first she sounded

> like a sheep

> > > in

> > > the distance. That too was a long haul but now we call her

> Chatty Patty.

> > >

> > > It wasn't until she was around 14 that they did a swallow study.

> There they

> > > found her swallow to be uneven. Duh! But they also found this

> little pouch

> > > thing. All Patty's life when she would eat sometimes she would

> cough and

> > > press

> > > on her neck. That's where the pouch is. It is small but it is

> big enough

> > > to

> > > pool up food. I have heard of other CHARGE children with similar

> things like

> > > this. I guess that is why I keep thinking of you. There just has

> to be an

> > > answer. Have you contacted Meg?

> > >

> > > My point is, gosh I just don't know. It is just that when Patty

> was around

> > > 10 months I remember that time to be scary. I felt like I was

> walking in a

> > > fog. Bad news just kept coming and coming. I also remember it

> was around

> > > that

> > > time that she held her head up for the first time. What a

> miracle that was.

> > > It

> > > was then I learned, ever so slowly, that every smile, ever task

> accomplished

> > > and every thing in life is a gift. Each day is something to

> rejoice. It was

> > > then I learned the " secret " of being a parent of a child with

> special needs.

> > >

> > > There is so much in life that we take for granted. Even

> breathing. The fear

> > > you have is great, but don't let it control you. Take a minute

> to slow

> > > down.

> > > Focus your mind on one good thing that happened each day. That

> just might

> > > give

> > > you the strength to go through this scary time.

> > >

> > > I wish you the best.

> > >

> > > Bonnie, mom to a 22, Patty CHARGE 20, wife to

> > >

> > >

> > >