New to group

[Guest guest]

Welcome Minniemom,

My son's name is very close to yours. His name is . More

affectionately known as Boo-Bear. My Jon is almost six. We homeschool

him. Looking forward to getting to know both of you better!

Roni

Usborne Children's Books

www.ubah.com/J1422

[Guest guest]

Hello...my name is Judi and I'm a single mom too! Welcome to the list. My 7

year old daughter, Jordan has DS. I also have a 7 week old daughter Savannah

who was not diagnosed with anything .

Judi

New to group

Hi all! I am a single mother of a 29 month old boy Jon who has

Downs. I am disabled so we live In New York with my Mom and dad. JD

(Jon ) goes to DDI, Developmental Disabilities Institute 4 days a

week from 9-1. He is doing well, but is quite behind in speech and doesn't

know to many signs. I will try to post a picture if I can figure it out.

HAPPY HOLIDAYS TO ALL!!!

[Guest guest]

I wanted to introduce myself to the group. I've been trying to read

through some of the posts and get a feel for things, but this group

seems very diverse.

Jill,

Welcome!! Yes, we are a very diverse and very supportive groups. I'm amazed at

how many adoptive parents find there way here, too.

Emma is at a very fun stage - you all must be having a blast every day with her.

Well, what a way to start a new year, no more surgeries for her!! YEA!!

My son with DS is 9. He also has epilepsy, apraxia, ADHD and OCD tendencies.

Christmas is so special with him in our lives. He loves presents! This year,

he watched others wrap presents (he can read the tags) and proceeded to tell the

person who the gift is for what is in it...lol! Obviously, his sisters are very

happy with him right now

I also have a 21 year old who graduates college in May. My oldest son is 19 and

he goes to another college and is joining the ROTC program officially next

month. I have a 15 year old daughter who is a high school student. I spend my

respite time working full time...lol. I'm a social worker in the adoption

field.

I look forward to hearing more about Emma and her siblings. Happy Holidays!

[Guest guest]

Im new here also. Also looking forward to learning lots of new stuff.

Keri Sweeney

AZ

> Hello to all...I am new to group and look forward to learning new

> things

[Guest guest]

Welcome Moe,

If your running and lifting weights, you are far past me in recovery...keep up what sounds like it works good for you.

Jerry in Ohio

New to group

Hi every one,Just found this group. Interesting the # of Zaps I see being reported.ICD implanted Jan 20th. Had my first doctors appt. in March.No problems thus far. Back to my excersise routine ( running & weights )Would like to wish you all the best.Maurice (Moe) in Calgary Alberta CanadaPlease visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

hey moe....

welcome and ,,,,what jerry said......

the heavy exercise for me is getting up on a black jack stool or down

into a scooter at walmart

bob in ms

At 04:17 PM 4/27/2003 -0400, you wrote:

Welcome

Moe,

If your running and lifting weights, you are

far past me in recovery...keep up what sounds like it works good for

you.

Jerry in Ohio

New to group

Hi every one,

Just found this group. Interesting the # of Zaps I see being reported.

ICD implanted Jan 20th. Had my first doctors appt. in March.

No problems thus far. Back to my excersise routine ( running & weights )

Would like to wish you all the best.

Maurice (Moe) in Calgary Alberta Canada

Please visit the Zapper homepage at

http://www.ZapLife.org

[Guest guest]

Welcome to the group Moe. Keep on posting. Good luck with the exercise and the weights and I hope you never get zapped. If you have any questions we have very knowledgeable people here. Don't be afraid to ask and tell us your stories, we can only learn from you. TURK

New to group

Hi every one,Just found this group. Interesting the # of Zaps I see being reported.ICD implanted Jan 20th. Had my first doctors appt. in March.No problems thus far. Back to my excersise routine ( running & weights )Would like to wish you all the best.Maurice (Moe) in Calgary Alberta CanadaPlease visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

Hello Sherrie,

I had a tumour on my left adrenal removed by laproscopic surgery last

October. I was told to " be an invalid " for 6 weeks and to expect too be off

work for between 6 and 12 months after the surgery. In actual fact I

started a new job 5 months after the surgery and I also swim several times

a week and enjoy kayaking. I was in hospital for a full week and they sent

me home in an ambulance " just in case " .

My symptoms before surgery were horrendous - I was literally dying. Now I

am doing really well and my blood pressure is around 140/90 which is a wee

bit high but much better than the 220+/160 I had before!!!!! I have been

left with some minor brain damage and muscle damage but I am grateful to be

alive.

I hope to have photos back of me kayaking last weekend and will post them

to the website once I do have them back!

Helen in Scotland

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

mail2web - Check your email from the web at

http://mail2web.com/ .

[Guest guest]

what was the brain damage from u never said anything about that in the past i remeber?

RE: new to group

Hello Sherrie,I had a tumour on my left adrenal removed by laproscopic surgery lastOctober. I was told to "be an invalid" for 6 weeks and to expect too be offwork for between 6 and 12 months after the surgery. In actual fact Istarted a new job 5 months after the surgery and I also swim several timesa week and enjoy kayaking. I was in hospital for a full week and they sentme home in an ambulance "just in case".My symptoms before surgery were horrendous - I was literally dying. Now Iam doing really well and my blood pressure is around 140/90 which is a weebit high but much better than the 220+/160 I had before!!!!! I have beenleft with some minor brain damage and muscle damage but I am grateful to bealive. I hope to have photos back of me kayaking last weekend and will post themto the website once I do have them back!Helen in Scotland--------------------------------------------------------------------mail2web - Check your email from the web athttp://mail2web.com/ .

[Guest guest]

I have memory problems. Some of my memory just isn't there anymore - my

husband will ask me if I remember going somewhere and I can't remember at

all. We have the photos (and they are all dated as I have an APS camera)

but I have no recollection of the event or the place. My endocrinologist

says it is not unheard of with long-term untreated hyperaldosteronism and

he called it " swiss-cheese memory " . He wrote a lot of stuff down for me so

I could refer back to things.

Lack of memory can be a bit of a problem at work but I have learnt to write

things down and make lots of notes. It can be quite embarrassing as I don't

remember names or faces which in my job is a big drawback as I am an

administrator for local government and meet a lot of people. It is okay at

meetings as I draw pictures of who is sitting where and what they are

wearing or something obvious about them but if they change clothes or sit

somewhere else I am completely lost so from one meeting to another I don't

recognise people!!! Luckily most people have been very understanding and I

am quite open about what has happened.

After my op my serum K was very high and my endocrinologist and GP were

concerned about pssible heart damage. Luckily it went back down after a

couple of months and they now think the serum K was high as I was trying to

replace tissue K. All in all I count myself very lucky.

Helen in Scotland

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

mail2web - Check your email from the web at

http://mail2web.com/ .

[Guest guest]

I have memory problems. Some of my memory just isn't there anymore - my

husband will ask me if I remember going somewhere and I can't remember at

all. We have the photos (and they are all dated as I have an APS camera)

but I have no recollection of the event or the place. My endocrinologist

says it is not unheard of with long-term untreated hyperaldosteronism and

he called it " swiss-cheese memory " . He wrote a lot of stuff down for me so

I could refer back to things.

Lack of memory can be a bit of a problem at work but I have learnt to write

things down and make lots of notes. It can be quite embarrassing as I don't

remember names or faces which in my job is a big drawback as I am an

administrator for local government and meet a lot of people. It is okay at

meetings as I draw pictures of who is sitting where and what they are

wearing or something obvious about them but if they change clothes or sit

somewhere else I am completely lost so from one meeting to another I don't

recognise people!!! Luckily most people have been very understanding and I

am quite open about what has happened.

After my op my serum K was very high and my endocrinologist and GP were

concerned about pssible heart damage. Luckily it went back down after a

couple of months and they now think the serum K was high as I was trying to

replace tissue K. All in all I count myself very lucky.

Helen in Scotland

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

mail2web - Check your email from the web at

http://mail2web.com/ .

[Guest guest]

Hi ! Nice to meet you! I saw you got a stent put in on May

23. Hey, that is my youngest daughter's birthday. She just turned

8. Anyway, it sounds like you must be related to my hubby! He is

the one with the heart problems, and if he doesn't knock it off, I

will be having them too!!

Oh, on a serious note, my poor hubby, who does not have a mean bone

in his body just went thru his 2nd bypass surgery 3 monts ago. He

had his first bypass when he was 32, and now 18 years later had a

redo. (five the first time, and four the second time). Well, about

a month after the 2nd surgery he went into Ventriuclar Tachycardia

and ended up spending another week in critical care, then had the

defib. put in. All this by age 50. Now they tell us they are

actually treating him for heart failure. He is behaving himself,

and I sure hope we can get his heart working better with all the

meds. he is on, but about a week after he was home he did get a

shock. He actually didn't think it was the full " kick " ,cause he

said it wasn't that bad, but the doctor said that yes, in fact it

was the full one, and one that was needed. I heard the thing go

off, it sounded like a static type buzzing shock to me, but it was

over so fast.

Anyway, I am sure that the others who actually live with these

little angels in their chests can talk to you better than I can, but

I did want you to know that you sure are not alone. I found that

out also after coming here not long ago. My nerves were really

shaky, but just reading the posts from these guys and gals sure does

help you know that you are not alone. So, again, nice to meet you,

and hope to read more of your posts!

> Where do I start? On May 23 I had one stent put in and then June

19 I had

> four more put in and that afternoon I went into a code blue which

the doctor

> later said was a heart attack. On July 9 I had a defibrillator

implanted. I

> am

> still very sore as it has only been a little over a week. Bandages

where

> taken off on Wednesday and I was allowed to take a shower and that

was

> a lot of fun trying to take a shower with one hand. Also had a

four by-pass

> nine years ago. Heart problems on both sides of my family so I

don't have

> a chance.

>

> Since I have only had my defibrillator a little over a week I have

no idea

> what to expect and I am a little nervous about the first zap. They

tell me

> it is like a horse kicked you in the chest. I have mix feelings

about having

> this thing implanted in my shoulder but I guess it is for the best

and I will

> adjust. They say you can lead a normal life but with so many

limitations

> I sometimes wonder.

>

>

[Guest guest]

Hi . Welcome to a group of some of the warmest and most helpful

people in the world. I've had my ICD for 2 1/2 years and got zapped 3

times about a year ago, each one week apart to the hour. 5 joule

zaps, caused by a new EP dr who just had to tinker with the settings.

Hurt? Kick in chest? NO. No pain. Just annoying to be interrupted by

the shock. I remember thinking, " Oh my, I just had a shock. I guess I

better sit down or something. "

The worst part of getting an ICD was not being able to drive for 1st 3

weeks. Next worst was anxiety worrying about when it was going to go

off. Now 2 1/2 half years later, I almost never think about it. AND

my wife who wouldn't touch my chest for 2 months, now sleeps with her

head on my chest over the ICD. You'll no doubt come to accept your ICD

as just another part of your life, not as a central issue.

My doctor said that I couldn't die of a heart attack with my ICD in

place, so I would have to die of something else. I suggested " wrinkles. "

Stu953

> Where do I start? On May 23 I had one stent put in and then June 19

I had

> four more put in and that afternoon I went into a code blue which

the doctor

> later said was a heart attack. On July 9 I had a defibrillator

implanted. I

> am

> still very sore as it has only been a little over a week.

[Guest guest]

m1555@... wrote:

Heart problems on both sides of my family

so I don't have

a chance.

They say you can lead a normal life but with so many limitations

I sometimes wonder.

Yes - YOU DO HAVE

A CHANCE - That is why you have the ICD! The ICD is now your guardian

angel and you can go about all your activities to the best of your ability

with no worry - because your ICD is watching your heart and will save you!

Yes, you can lead

a normal life, with only the limitations your heart has had on you before

the ICD. You will adjust and once you recover - there will be days

that you don't even think about your ICD!

Welcome to our family

- we are glad to have you!

~guin

44 year old MOM

in CA, implanted 9/99 and re-implanted 3/00

[Guest guest]

Hello :

Welcome to the Zapper Group which most of us call family. You are not alone a lot of us are scared. Getting shocked at first surprises you mostly, yes sometimes some pain, sometimes it hurts like hell but consider the alternative. Most of the times and big percentage of the people get paced at first which mostly corrects the problem so try not to worry so much. Try to Lead a normal life as much as possible. Keep PostingTURK.

New to group

Where do I start? On May 23 I had one stent put in and then June 19 I hadfour more put in and that afternoon I went into a code blue which the doctorlater said was a heart attack. On July 9 I had a defibrillator implanted. I amstill very sore as it has only been a little over a week. Bandages wheretaken off on Wednesday and I was allowed to take a shower and that wasa lot of fun trying to take a shower with one hand. Also had a four by-passnine years ago. Heart problems on both sides of my family so I don't havea chance. Since I have only had my defibrillator a little over a week I have no ideawhat to expect and I am a little nervous about the first zap. They tell meit is like a horse kicked you in the chest. I have mix feelings about havingthis thing implanted in my shoulder but I guess it is for the best and I willadjust. They say you can lead a normal life but with so many limitationsI sometimes wonder. Please visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

> They tell me

> it is like a horse kicked you in the chest.

I wish they would stop telling people that. Yes, that is what some

people feel, but everyone is different. My first zap happened just

as my aunt was walking behind me and my first thought was that she

has hit me on the back of the head with something very hard.

Bridget

[Guest guest]

> They tell me

> it is like a horse kicked you in the chest.

I wish they would stop telling people that. Yes, that is what some

people feel, but everyone is different. My first zap happened just

as my aunt was walking behind me and my first thought was that she

has hit me on the back of the head with something very hard.

Bridget

[Guest guest]

hey mary beth

how long have you had osteoarthritis? what do you do to control it? is it in

your hip or in your knees? i am curious because i am 30 and have developed

osteoarthritis in both knees.

thanks for any info

NEW TO GROUP

Hello all I am new here I have osteoarthritis

I have had my right hip replaced twice and now I have

2 bad knees. The Left is worse than the right. My dr

wants me to try the synvisc shots I have had cortison

shots and they help some . I am 40 years old. Well just thought

Id say HI. Take care Beth

[Guest guest]

I'm curious to know if this is where they replace only the backside of the

patella

and the trochlea. If so, I only know of one doctor who does this (he's in NYC).

If you've found another doc, I'd really like to know who he is. Thank you.

Ann

>Hello My name is Debbie and just joined. I have had knee pain since I

>was little. I was always told it was growing pains, am 45 years old

>and if am still growing am in trouble lol. Anyway, I just found out

>that I have patello-femoral arthritis in both knees. I am seeing a

>doctor in Phila. I also just had 3 shots of Synvisc in each knee. It

>seems to be working,still get some pain if am on my feet to long, at

>night and when it is cold and damp outside. But nothing like the pain

>I had before. I will be having surgery done this coming june on my

>knees, its called patello-femoral replacement. I just wanted to know

>if anyone has had this kind of surgery on there knees.

>

> Debbie

>

>

>

>

[Guest guest]

Ann, I download in the files, copy of a newspaper article that was

given to me. It tells you about the surgery I will be having in june.

the 1st page is called kneepain, the 2nd page is called knee.

> I'm curious to know if this is where they replace only the backside

of the patella

> and the trochlea. If so, I only know of one doctor who does this

(he's in NYC).

> If you've found another doc, I'd really like to know who he is.

Thank you.

>

>

> Ann

>

> >Hello My name is Debbie and just joined. I have had knee pain

since I

> >was little. I was always told it was growing pains, am 45 years

old

> >and if am still growing am in trouble lol. Anyway, I just found

out

> >that I have patello-femoral arthritis in both knees. I am seeing a

> >doctor in Phila. I also just had 3 shots of Synvisc in each knee.

It

> >seems to be working,still get some pain if am on my feet to long,

at

> >night and when it is cold and damp outside. But nothing like the

pain

> >I had before. I will be having surgery done this coming june on my

> >knees, its called patello-femoral replacement. I just wanted to

know

> >if anyone has had this kind of surgery on there knees.

> >

> > Debbie

> >

> >

> >

> >

[Guest guest]

I mean, using my browser, how do I get to the files?

Ann

Re: New to group

> Ann, I download in the files, copy of a newspaper article that was

> given to me. It tells you about the surgery I will be having in june.

> the 1st page is called kneepain, the 2nd page is called knee.

>

>

>

>

> > I'm curious to know if this is where they replace only the backside

> of the patella

> > and the trochlea. If so, I only know of one doctor who does this

> (he's in NYC).

> > If you've found another doc, I'd really like to know who he is.

> Thank you.

> >

> >

> > Ann

> >

> > >Hello My name is Debbie and just joined. I have had knee pain

> since I

> > >was little. I was always told it was growing pains, am 45 years

> old

> > >and if am still growing am in trouble lol. Anyway, I just found

> out

> > >that I have patello-femoral arthritis in both knees. I am seeing a

> > >doctor in Phila. I also just had 3 shots of Synvisc in each knee.

> It

> > >seems to be working,still get some pain if am on my feet to long,

> at

> > >night and when it is cold and damp outside. But nothing like the

> pain

> > >I had before. I will be having surgery done this coming june on my

> > >knees, its called patello-femoral replacement. I just wanted to

> know

> > >if anyone has had this kind of surgery on there knees.

> > >

> > > Debbie

> > >

> > >

> > >

> > >

[Guest guest]

Wow Faith, can you not get a MD to prescribe a brace? I used the

palumbo brace for a while after my right knee dislocated but it

doesn't slip in and out very much and I only wear it if I am extra

active. This brace has a hole in the middle and support to keep the

kneecap in place. What you describe about your knee discloating and

sending you " flying " sounds exactly like me when I was 14. I had an

open patellla realignment when I was 15. While the recovery was

difficult, I imagine that now 13 years later they have better

capabilites with the scope. The main reason for my surgery was

safety. I kept falling and crashing into things when my knee gave

way. I can only imagine your fear of having that happen again with a

child in your arms. Try telling your doc just what you have told us

and if he/she won't do anything, find another doctor! Good luck!

> Hi there, my name is Faith and I have had CP ever since puberty,

I'm

> 29 now. What has really distressed me about this condition is that

I

> can never trust my knees. When my patella 'catches' it feels like

my

> legs have been taken out from under me and I fall so quickly I

can't

> even break the fall. This happened when I was carrying my infant

> son, giving him a bump on the head on our way down. I felt SO bad

> about that, so mad at myself & my body. I have seen specialists

and

> done PT consistently, but I can't find a way to feel secure that it

> won't happen again. Also, the condition seems to be linked

> hormonally - it was worse during puberty and then during pregnancy

> and breastfeeding. I am hesitant to even have another child for

this

> reason. I'm especially afraid of falling on stairs while holding a

> baby.

> The pain I can live with, but I need to find some way to insure

that

> my patella won't partially dislocate or slip, causing me to fall.

I

> once considered surgery, but even the surgeon was doubtful as to

the

> outcome.

> Can anyone recommend a brace that has kept their kneecap from

> slipping, all the time? I think I would be more confident as a

> mother if I could put it on and have some insurance against falling.

> Thanks for any responses!

[Guest guest]

Thanks so much for the info, I've learned more from this discussion

board than I have in the last 15 years of going to doctors and PT. I

will look into getting the brace, and thanks for the info on your

surgery. I'm glad to see that there is hope! Faith

> > Hi there, my name is Faith and I have had CP ever since puberty,

> I'm

> > 29 now. What has really distressed me about this condition is

that

> I

> > can never trust my knees. When my patella 'catches' it feels

like

> my

> > legs have been taken out from under me and I fall so quickly I

> can't

> > even break the fall. This happened when I was carrying my infant

> > son, giving him a bump on the head on our way down. I felt SO

bad

> > about that, so mad at myself & my body. I have seen specialists

> and

> > done PT consistently, but I can't find a way to feel secure that

it

> > won't happen again. Also, the condition seems to be linked

> > hormonally - it was worse during puberty and then during

pregnancy

> > and breastfeeding. I am hesitant to even have another child for

> this

> > reason. I'm especially afraid of falling on stairs while holding

a

> > baby.

> > The pain I can live with, but I need to find some way to insure

> that

> > my patella won't partially dislocate or slip, causing me to

fall.

> I

> > once considered surgery, but even the surgeon was doubtful as to

> the

> > outcome.

> > Can anyone recommend a brace that has kept their kneecap from

> > slipping, all the time? I think I would be more confident as a

> > mother if I could put it on and have some insurance against

falling.

> > Thanks for any responses!

[Guest guest]

Hi,

My son, Maverick is 13 and uses a Vantage talker. I can set up anything he

wants on it, and once I show him where something is or where to make a

sentence, he can do it correctly with no problem. BUT, he can't build the

sentence on

his own, and he doesn't use it with others since no one really takes the time

to listen to what he is trying to say.

This summer he goes to a program 2 mornings a week to work on using it in a

school setting, but still pretty much refuses to use it.

M.

 ¸...¸     ___/ /\ \___        ¸...¸     

,·´º o`·, /__/ _/\_ \__\     ,·´º o`·,

```)¨(´´´  |  |  |  |  |  |  |  |  |  ```)¨(´´´

¸,.-·²°´      ¸,.-·~·~·-.,¸      `°²·-.¸

 

......for a tree is recognized by its fruit.

3:33

[Guest guest]

-Hi there,

My son is 19 - 20 next week - and has a vocab of about 20+ words,

his speech therapist is currently putting together a communication

book for him (I don't think it will work, but as this speechy is

new, and I think will be with him for the long haul have to let her

try), therapists in the past have tried using sign language with

him, but he wont use it - except in areas where it appears to be

the common language ie. respite. I believe Trent's philosphy in

life is " Anything you can do, I can do to " - just can't fine tune

all things. At his day program, he will often sit in on meetings

with the Managers and take 'notes'! No doubt they let him get away

with this, as they know he won't be telling the others in the

program of future planning!!!!!

Jan

mother of Trent 19yo w/DS, from the Land of Oz.

-- In , " brenalexacamp " <brenny01@c...>

wrote:

> Hello, I have an 11 year old boy with Downs and he does not speak

> clearly --yet.

> He uses a Dynamite to talk and put simple sentences together.

> I'd be interested to hear from other parents, how their child is

> doing, especially the boys.

> thanks