Re:

[Guest guest]

,

will be in my constant thoughts and prayers!! Let me know of the date

so I can worry along with you (I know how exciting and scary decannulation

is--I hope is successful this time)!

Kent and I are surviving. The kids are good. Did I tell you the docs put

Tyler on Resperidol (spelling) due to his " impulsivity " ? It worked wonders

at first (according to the school), but it is not the miracle they wanted.

The school has not done a thing to help Tyler develop socially. We had a

IEP (Individual Education Plan) at his school and I mentioned their helping

Tyler to progress socially and they said they would try to implement

suggestions from the Neuropsychologist but wouldn't commit to anything

definite-and nothing in writing. I have got to learn more of his rights and

get educated!!

Tell that his friends from Fort Wayne, Indiana in the US say " Hello " .

You guys are great:o)]

Kristy

> Hi, I just saw the pictures of at camp with his family on the

> files, just had to say that he is SO like my it is amazing!

> What a lovely family you have. I'll try to post some new pictures of

> and you'll see what I mean.

> We are going into G.O.S. as soon as we get a date for a trial

> de-canulation, I'll try not to get too excited, we've been there.

> Haven't been on the list for some time, but are avid lurkers and are

> keeping up with posts. Welcome to the new family with two chargers, I

> wonder how many more are out there......

> Are you surviving Kristy and Kent? Love Lesley Tom and the rest of

> the Fitters . UK.

>

>

>

> " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> 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

>

>

[Guest guest]

Hello Yuka and Kristie!

So good to hear from you, Kristie, I'm glad you're surviving, looks

like another marathon with this behaviour issue, good luck. We

haven't got a date for admittance yet but it could be a cancellation

so I'm ready to go in anytime. Keep you posted. (How is that lovely

baby getting on? And little , she ok?)And your other big kid?!!

Yuka I'm surprised about your 's trache still being in situ, is

he coping night and day and eating/drinking with it blocked- for 18

months? Why the hell don't they just take it out then? Imagine it's

taking up a good deal of airway room just being there so he'd be even

better without it. Also, if it's all about a bit of aspiration, lots

of kids aspirate with out having a trache, they may cough and splutter

a bit now and then and be more prone to chest infection but it doesn't

warrant a trache. However, your doctor knows his case and is just

doing the right thing in being very cautious I bet. (I had to almost

get our ent in a headlock to persuade him to try again with de-can,)

It's like from their angle, the kid is managed well, their side of

things is taken care of, they have safe airway. The fact that their

childhood is running out and that socially they suffer doesn't really

come into it.

Anyway, I'm so glad we've met over the net, is so excited to see

's picture, he is away for a few days with school at the moment

but when he comes home I'll get him to send a letter and get a

recent photo for you. He is 11 in July. He goes to special school

but does a main stream link once a week, he says the special school is

babyish! But the mainstream won't let him do any more time, they're

very frightened by the trache.

So much in common with both of you ... take good care, Lesley

[Guest guest]

He had a fit trying to clear his secretions today,

thought we were going to have to go to the emergency

room but He finally did it. His pulsox was reading 95

so that was a relief. Hadn't had to put that on him

in a while. Hope everyone is having good luck.

Ken

--- Graeme & Weir wrote:

> Great news, Ken! It sounds like things are coming

> along great in a lot of areas. It's nice to finally

> get a break (medically) with these kids, isn't it?

> I hope the reflux issue gets resolved soon, they are

> so miserable when fighting reflux constantly...

>

> Mom to Kennedy 3yr old CHARGEr, 11, 10,

> and wife to Graeme

> New Brunswick, Canada

> Visit the " Weir homepage " at:

> http://www.geocities.com/SunsetStrip/Palms/5716

> ICQ #1426476

>

>

>

> 's MRI and Cat scan came back normal! No

> nerve

> damage indicating retardation, and no surgery on

> his

> skull! " No surgery needed " is the best phrase I

> know.

> His cardiologist also said his heart surgery was a

> complete success. He listens and hears nothing

> but a

> normal working heart, no leaks around the patch,

> no

> murmur. He sats 98-100. Now if we could just get

> past the damn reflux. We are giving him a little

> pudding and applesauce, etc. when he eats to get

> him

> used to taking things in his mouth. Strong as an

> ox!

> He pulls the suction cathetor right out and it

> takes

> mom and dad to hold him.

>

> Ken

>

> __________________________________________________

>

[Guest guest]

Ken,

Do you saline his nose to keep things loose? We found when Kennedy's "junk" is getting thick, we saline spray her nose and it loosens things right up back there.

Just a thought..

Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

> > > 's MRI and Cat scan came back normal! No> nerve> damage indicating retardation, and no surgery on> his> skull! "No surgery needed" is the best phrase I> know.> His cardiologist also said his heart surgery was a> complete success. He listens and hears nothing> but a> normal working heart, no leaks around the patch,> no> murmur. He sats 98-100. Now if we could just get> past the damn reflux. We are giving him a little> pudding and applesauce, etc. when he eats to get> him> used to taking things in his mouth. Strong as an> ox! > He pulls the suction cathetor right out and it> takes> mom and dad to hold him. > > Ken> > __________________________________________________>

[Guest guest]

Never thought 0f that. We just suction his nose

usually. And I never thought of damage being done to

his lungs over all the reflux. We just had him in the

hospital for two days last week due to his congestion.

--- Graeme & Weir wrote:

> Ken,

> Do you saline his nose to keep things loose? We

> found when Kennedy's " junk " is getting thick, we

> saline spray her nose and it loosens things right up

> back there.

> Just a thought..

>

> Mom to Kennedy 3yr old CHARGEr, 11, 10,

> and wife to Graeme

> New Brunswick, Canada

> Visit the " Weir homepage " at:

> http://www.geocities.com/SunsetStrip/Palms/5716

> ICQ #1426476

>

> >

> >

> > 's MRI and Cat scan came back normal! No

> > nerve

> > damage indicating retardation, and no surgery

> on

> > his

> > skull! " No surgery needed " is the best phrase

> I

> > know.

> > His cardiologist also said his heart surgery

> was a

> > complete success. He listens and hears

> nothing

> > but a

> > normal working heart, no leaks around the

> patch,

> > no

> > murmur. He sats 98-100. Now if we could just

> get

> > past the damn reflux. We are giving him a

> little

> > pudding and applesauce, etc. when he eats to

> get

> > him

> > used to taking things in his mouth. Strong as

> an

> > ox!

> > He pulls the suction cathetor right out and it

> > takes

> > mom and dad to hold him.

> >

> > Ken

> >

> >

> __________________________________________________

> >

[Guest guest]

Kennedy has permanent "changes" to her lungs from her early reflux but she is doing fine with it now since we eradicated the reflux. I would ask your doc about the saline, I can't see there being a problem with it and it really does help keep things cleaner up there.

Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

> > > > > > 's MRI and Cat scan came back normal! No> > nerve> > damage indicating retardation, and no surgery> on> > his> > skull! "No surgery needed" is the best phrase> I> > know.> > His cardiologist also said his heart surgery> was a> > complete success. He listens and hears> nothing> > but a> > normal working heart, no leaks around the> patch,> > no> > murmur. He sats 98-100. Now if we could just> get> > past the damn reflux. We are giving him a> little> > pudding and applesauce, etc. when he eats to> get> > him> > used to taking things in his mouth. Strong as> an> > ox! > > He pulls the suction cathetor right out and it> > takes> > mom and dad to hold him. > > > > Ken> > > > > __________________________________________________> >

[Guest guest]

Margaret: It does make you sad to think of all those men and woman over there serving our country. away from their familie's on the holiday's.. Here our Wal-Mart set's up a table with free christmas card's that you can fill out and send to the soldier's I do this every year.. I think it's important for us to let our soldier's know that we are thinking of them not just at the holiday's but all year through.. Thank You for sharing this with us.. Gentle Hug's Marie Marie A. Roomsburg pretty_n_cute2002@... marieava@...

[Guest guest]

My dear sweet ,

First of all, let me apologize for not calling you back yet. I didn't forget aboutyou, you are in my heart and on my mind a lot. My husband has been off work for the past week because I havent been doing well, then today he came home from work with the flu..yeck. I said hunny I love you but stay away from me, hes doing better tonite and going to work tomorrow. I go to U of MI tomorrow, and I'm soooo scared. I've been there before but its always bad news, I've taken a Xanax and will be taking a Klonopin and Prozac in a few minutes, I'm sure I'll be awake all night worrying so if you stay up late, email me and let me know. I see the heart dr tomorrow, I know I have Pulmonary Hypertension but its getting worse and I know I am too Like I said , we're 2 peas in a pod. I promise to call you soon, and dont you dare give up. If I have to rough it with this monster, you hold right on to my hand and we'll face it together. You're not alone , I love you even though I've never met you and Jesus loves you and remember this, our life on this earth is but a nano second compared to eternity in heaven in peace, no more tears, no pain, no parting, I love you......

Vicky81856

[Guest guest]

um i was thinking barb lived in your area.....i could be wrong about

that........

i know for sure you and phil are in that area as well as a dr friend

of mine who is from tampa.

i don't know about doing disney world.......that's too dang much

walking plus the kids went last spring when they were there for

ashli's godfather's wedding.

i was thinking more like the orlando science center, busch gardens,

the beach weather permitting........and just vist our family and some

friends.

my godfather and his wife are there, that's who we'll be staying

with. he is also my uncle. his son is ashli's godfather. and i have

some uncles and cousins down near the keys as well.

can't wait to meet you in person!!!!!! maybe cook ya some good ole

cajun food ~~~~~~~

>

>

> Hi Little girl, Are y'all taking the kids to the mouse house??

> Where does Barb live?? Maybe we could have out own meeting..lol

> na na na on the Chicago group..lol just kidding.. :>)

> Love and Prayers, Peggy 9/04 ipf Florida

>

> lil miss peggy,

>

> don't be making any plans the week of march 9th through the 19th. we

> are planning to be in florida that week with any luck and i do so

look

> forward to meeting you, feel and possibly barb while i am there....

>

> if the dates change i will let ya know.

>

> love ya!

>

> LCH/EG 10-05

>

[Guest guest]

I can't wait either BUT Cajun food just can't happen lol. breaks out in a sweat just looking at it and I get horrible heart burn from spices..Sorry..We are just gettin to be oldies. used to love gumbo but not for some time now..LOL wimpy. Bill shows up here with hot sauce, he is such a smarty. Thinks his mom amd dad are wimpy--guess we are. Oh well.

Love and Prayers, Peggy 9/04 ipf Florida

um i was thinking barb lived in your area.....i could be wrong about

that........

i know for sure you and phil are in that area as well as a dr friend

of mine who is from tampa.

i don't know about doing disney world.......that's too dang much

walking plus the kids went last spring when they were there for

ashli's godfather's wedding.

i was thinking more like the orlando science center, busch gardens,

the beach weather permitting........and just vist our family and some

friends.

my godfather and his wife are there, that's who we'll be staying

with. he is also my uncle. his son is ashli's godfather. and i have

some uncles and cousins down near the keys as well.

can't wait to meet you in person!!!!!! maybe cook ya some good ole

cajun food ~~~~~~~

>

>

> Hi Little girl, Are y'all taking the kids to the mouse house??

> Where does Barb live?? Maybe we could have out own meeting..lol

> na na na on the Chicago group..lol just kidding.. :>)

> Love and Prayers, Peggy 9/04 ipf Florida

>

> lil miss peggy,

>

> don't be making any plans the week of march 9th through the 19th. we

> are planning to be in florida that week with any luck and i do so

look

> forward to meeting you, feel and possibly barb while i am there....

>

> if the dates change i will let ya know.

>

> love ya!

>

> LCH/EG 10-05

>

[Guest guest]

from Sher... I can relate to the depression. I have battled that beast since I was a teen and I'm 68 now. I'm on Cymbalta now and it's helped me more than any other med.

Hope you can get in to see your Dr. soon.

In reading others posts, I know many of us here deal with depression so we can understand the ups and downs. Mostly downs or it wouldn't be called DE pression...

Keep reading even if you don't post and stay connected to us that way.

Love ya. Sher ipf 5-06

"Don't worry about tomorrow, God is already there"

I realize while rereading this, that I am in an acute state of depression. I am calling the dr. when his office opens and will seek help.

Thank you guys for listening and understanding all the myriads of feelings a person goes through.

I will post again when I am feeling better. Until then.....thanks and I apologize if i brought anyone down.