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My oldest son has no memory of life " before

" since he was 18 months old when

was born. The oldest boy literally HATES

having to deal with doctor appointments, and

is glad that he's old enough to stay home for

most of them now (hurray for cheap cellular

phones!). He really hates having to get flu

shots " just because of " every year.

But the boys are best buddies, no one dare

" mess with my brother " mentality. And it

never ceases to amaze me when I see things

like the 13 year old gently rubbing his 12

year old brother's back or head on one of the

" not so good " days when he is feeling bad and

falls asleep on the sofa.

It was that way at our house even when they

were little - a little red headed toddler

patting his brother saying ' is ok y'.

I believe that if the 13 year old didn't have

a really good understanding of what his brother

is putting up with, he would have a tendency to

be a little jealous. But the 13 year old has had

more than his fill of doctors too, so its more

compassion than competition that we see at our

house.

Guess I'm really lucky.

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

conatser@...

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ALAN J SVEJKOVSKY wrote:

>

>

>

> Who has other children besides the ones we hear about all the time?

> How do the " normal " kids deal with their siblings and how do your PID kids

> deal with their siblings.

>

I have three adult step children 32, 31, 29 years old (of who two gave us 8

grandchildren between them......) and three 3 year olds..(Will be three in one

week....) s problems (knowledge and seeking solutions) are fairly new to

us so I can't offer much in the way of differentiating between the three kids at

this time and how each responds as far as the asthma/allergy/et al goes...... To

me it has *ALWAY* been a daily battle over keeping everyone's identity

separated, keeping the others from whatever another needs but the other/s can't

have, etc....... I struggle to keep them recognized as individuals...... For

examples: Explain to people that although all three were born on the same day

that it's not fair to give them one toy to share when the gift givers children

all get individual gifts on each birthday- that EACH of them have a birthday of

Oct. 5th just as if they had been born in Oct, April, and July......);

Protect them from all those who stare at us as if we were an exhibit in a zoo

and from those who make loud and pubic comments like, " I pity you " , etc.....

Explain that just because they are triplets doesn't mean they like the same

things, respond the same way, etc.....

My children are very close to each other.... Although they have the typical

sibling stuff to deal with they will look out for one another without

fail......... Also, my children happen to love taking medicine so it's hard to

give

Albuteral to without Dylan and Breanna DEMANDING their medicine as

well...........

OK, as long as I'm on the " triplet thing " I'll share something with you that may

offend some of you. If jokes and the word " sex " offends any of you, please

delete now.............

Background: All three of my children look very different (although on certain

days look a lot alike....LOL.......) and are fraternal triplets..(are actually

surviving quads but we usually don't tell many people this in order to avoid

ourselves sharing our personal tragedies......) Two are blond hair with my

daughter having blue eyes and having hazel eyes and being a

" Toehead blonde " .....Dylan is very dark complexed with dark, thick, curly

hair.................

People often ask us (rudest question in the world to a multiple parent) if we

used fertility drugs or if (best question) multiples run in our family...(which

twins run on BOTH of our sides....) One time someone asked the following

question and below is the dialog of that conversation........ (Please note that

my hubby is always trying to get the best of me and throw me " zingers' to try

to stump me....I got even with this one.......LOL......)

Curious person: How did you ever manage to get pregnant with triplets?

Me: It's easy..... I just had great sex three times in one

afternoon.............

Hubby: Where was *I*??!?!?!?.......

Me: *NOW* you know why all three of our kids look

different!!!!!!!!!!!!!!!!!!!!

Joanna.........*S*S*S*.........

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lolololololol - Ursula - & Macey (4 yr old w/CVID) mom

Re: Sibs

>snip<

Curious person: How did you ever manage to get pregnant with triplets?

Me: It's easy..... I just had great sex three times in one

afternoon.............

Hubby: Where was *I*??!?!?!?.......

Me: *NOW* you know why all three of our kids look

different!!!!!!!!!!!!!!!!!!!!

Joanna.........*S*S*S*.........

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

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Joanna: That was pretty funny, your triplets sound beautiful and what a

handful! I would be split in three different directions. Lots of respect

with what you go through.

regards,

annette and alissa

>

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: Sibs

>Date: Wed, 29 Sep 1999 20:38:10 -0500

>

>

>

>

>

>ALAN J SVEJKOVSKY wrote:

>

> >

> >

> >

> > Who has other children besides the ones we hear about all the

>time?

> > How do the " normal " kids deal with their siblings and how do your PID

>kids

> > deal with their siblings.

> >

>

> I have three adult step children 32, 31, 29 years old (of who two gave us

>8 grandchildren between them......) and three 3 year olds..(Will be three

>in one week....) s problems (knowledge and seeking solutions) are

>fairly new to

>us so I can't offer much in the way of differentiating between the three

>kids at this time and how each responds as far as the asthma/allergy/et al

>goes...... To me it has *ALWAY* been a daily battle over keeping

>everyone's identity

>separated, keeping the others from whatever another needs but the other/s

>can't have, etc....... I struggle to keep them recognized as

>individuals...... For examples: Explain to people that although all three

>were born on the same day

>that it's not fair to give them one toy to share when the gift givers

>children all get individual gifts on each birthday- that EACH of them have

>a birthday of Oct. 5th just as if they had been born in Oct, April, and

>July......);

>Protect them from all those who stare at us as if we were an exhibit in a

>zoo and from those who make loud and pubic comments like, " I pity you " ,

>etc..... Explain that just because they are triplets doesn't mean they like

>the same

>things, respond the same way, etc.....

>

>My children are very close to each other.... Although they have the typical

>sibling stuff to deal with they will look out for one another without

>fail......... Also, my children happen to love taking medicine so it's hard

>to give

>Albuteral to without Dylan and Breanna DEMANDING their medicine as

>well...........

>

>OK, as long as I'm on the " triplet thing " I'll share something with you

>that may offend some of you. If jokes and the word " sex " offends any of

>you, please delete now.............

>

>Background: All three of my children look very different (although on

>certain days look a lot alike....LOL.......) and are fraternal

>triplets..(are actually surviving quads but we usually don't tell many

>people this in order to avoid

>ourselves sharing our personal tragedies......) Two are blond hair with my

>daughter having blue eyes and having hazel eyes and being a

> " Toehead blonde " .....Dylan is very dark complexed with dark, thick, curly

>hair.................

>

>People often ask us (rudest question in the world to a multiple parent) if

>we used fertility drugs or if (best question) multiples run in our

>family...(which twins run on BOTH of our sides....) One time someone asked

>the following

>question and below is the dialog of that conversation........ (Please note

>that my hubby is always trying to get the best of me and throw me

> " zingers' to try to stump me....I got even with this one.......LOL......)

>

>Curious person: How did you ever manage to get pregnant with triplets?

>

>Me: It's easy..... I just had great sex three times in one

>afternoon.............

>

>Hubby: Where was *I*??!?!?!?.......

>

>Me: *NOW* you know why all three of our kids look

>different!!!!!!!!!!!!!!!!!!!!

>

>Joanna.........*S*S*S*.........

>

>>This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

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Joanna:

Great story! I hope things improve with and I'm glad you have a

doctor who is willing to treat him aggressively to try to keep him off daily

meds. I truely hope this works out for you. We managed it for for

almost 3 years before things got to the point that he had to have daily

meds.

--mom to , dysgammaglobulinemia, ALL--in remission; ,

possible selective subclass def.

Re: Sibs

>

>

>

>

>ALAN J SVEJKOVSKY wrote:

>

>>

>>

>>

>> Who has other children besides the ones we hear about all the time?

>> How do the " normal " kids deal with their siblings and how do your PID

kids

>> deal with their siblings.

>>

>

> I have three adult step children 32, 31, 29 years old (of who two gave us

8 grandchildren between them......) and three 3 year olds..(Will be three in

one week....) s problems (knowledge and seeking solutions) are fairly

new to

>us so I can't offer much in the way of differentiating between the three

kids at this time and how each responds as far as the asthma/allergy/et al

goes...... To me it has *ALWAY* been a daily battle over keeping everyone's

identity

>separated, keeping the others from whatever another needs but the other/s

can't have, etc....... I struggle to keep them recognized as

individuals...... For examples: Explain to people that although all three

were born on the same day

>that it's not fair to give them one toy to share when the gift givers

children all get individual gifts on each birthday- that EACH of them have a

birthday of Oct. 5th just as if they had been born in Oct, April, and

July......);

>Protect them from all those who stare at us as if we were an exhibit in a

zoo and from those who make loud and pubic comments like, " I pity you " ,

etc..... Explain that just because they are triplets doesn't mean they like

the same

>things, respond the same way, etc.....

>

>My children are very close to each other.... Although they have the typical

sibling stuff to deal with they will look out for one another without

fail......... Also, my children happen to love taking medicine so it's hard

to give

>Albuteral to without Dylan and Breanna DEMANDING their medicine as

well...........

>

>OK, as long as I'm on the " triplet thing " I'll share something with you

that may offend some of you. If jokes and the word " sex " offends any of you,

please delete now.............

>

>Background: All three of my children look very different (although on

certain days look a lot alike....LOL.......) and are fraternal

triplets..(are actually surviving quads but we usually don't tell many

people this in order to avoid

>ourselves sharing our personal tragedies......) Two are blond hair with my

daughter having blue eyes and having hazel eyes and being a

" Toehead blonde " .....Dylan is very dark complexed with dark, thick, curly

>hair.................

>

>People often ask us (rudest question in the world to a multiple parent) if

we used fertility drugs or if (best question) multiples run in our

family...(which twins run on BOTH of our sides....) One time someone asked

the following

>question and below is the dialog of that conversation........ (Please note

that my hubby is always trying to get the best of me and throw me " zingers'

to try to stump me....I got even with this one.......LOL......)

>

>Curious person: How did you ever manage to get pregnant with triplets?

>

>Me: It's easy..... I just had great sex three times in one

afternoon.............

>

>Hubby: Where was *I*??!?!?!?.......

>

>Me: *NOW* you know why all three of our kids look

different!!!!!!!!!!!!!!!!!!!!

>

>Joanna.........*S*S*S*.........

>

>>This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

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:

Can your pediatrican write a note to the school nurse or administrator

letting them know about this constant fever? has great support from

school--he's only in 1st grade, though--and the teachers and staff know

about his history and game plan. His brother was in pre-k at the school

while was still on chemo. I would try to set up a meeting to talk

with the administator, nurse--if there is one--and some, if not all, of his

teachers. Good luck with this.

-- dysgammaglobulinemia, luekemia-in remmission

Sibs

>From: conatser@...

>

>My 13 year old has no memory of life " before "

>who is 12. There have always been doctor's appointments

>and illness to contend with. The 13 year old has always

>done a great job of being the " compassionate older brother "

>even when he was just a toddler. The 13 year hasn't really

>been jealous, he has had his share of doctors to contend

>with for other reasons.

>

>The boys are best buddies - the " don't you mess with

>my brother " types.

>

>Everyone at our house just wishes that would get

>over this most recent 3 month long infection so _everyone_

>feels better.

>

>Any info on how to get teachers (and others) to comprehend

>that a quiet little kid who may _look_ healthy has had a temp

>of 100 to 101 since July and no there's no point in just

>keeping him home, and by the way there's no doctor around

>who knows much about what's wrong or how to treat it -

>hey send any suggestions my way! Gosh I just LOOVE middle

>school and nine different teachers who each see over 240 kids

>each day!

>

> - mom of age 12 IgG sublass 2, CVID and

> age 13 and a walking bundle of teenage hormones

>

>>This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

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Dear ,

As a teacher and a mom of a CVID child, I understand the school frustration

thing. When was in elementary school, we did not have any problems with

getting teachers to understand the situation. Sometimes the school nurse

wasn't right on top of it, but a conversation with the principal helped to

settle that. Our real problems started when began middle school. I

could not get a single teacher or the principal to understand 's medical

condition and when it was okay to allow him to stay at school and when they

needed to call me. Even notes from doctors didn't help that much. I had

numerous conferences with the teachers, principal, vice principal, nurse,

secretaries, etc. It was a very frustrating time. Finally, I took out

of school and had a home teacher come to our house. The frustration with the

school system, of course, was not the only reason I chose to take him out of

school. He was also becoming quite ill much more often. I also am not

recommending that approach to anyone, but for us it worked well. We just

made sure that he kept in touch with his friends and kept active socially (as

much as was possible healthwise). Hope this helps. Keep me posted on how

the school situation goes.

Lee

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