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Bert

Remember we are with you. Our prayers and thouhgts are with you and your family.

Please keep us updated. I just wish I lived close to you to so I could be of more help.

Glo

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Oh Bert, I am sorry you have to deal with so much stress all at

once. And I know, it's easy for us to tell you 'one day at a time'

and don't waste time worrying about things you have no control of.

But when you have so many things going through your mind, sleep is

almost impossible. I know. Have recently had a million different

things going on all at once too. But the worst you have is worrying

about those babies of yours. I know too what its like with the hubby

putting it all on the back burner routine. Don't you wish some times

your mind could work like that? But as mom's we don't. Our children

are the very beating of our hearts. And when they are sick or

unhappy, we are too. We can't help it. It consumes us. We can't

think of anything else. Our hearts literally ache for them.

Both of my daughters have asthma. My oldest it is very severe. I

have spent more nights of her life awake listening to her breath -

for fear it would stop at any time. More nights than ones with

sleep. She was diagnosed at just three months old. Now she has

moved out. She has had trouble recently with it being bad again.

Now I don't sleep again. It will be o.k. I know, because she lives

with her boyfriend, and he knows how serious it is. But she is my

daughter, my baby, how do I stop? I know I never will.

But you know what I always did when they were sick? I slept with

them or near them. Spent many nights on their floor. It just

comforted me to know I would be near if something went wrong. Maybe

if you did that, or had a 'camp out' in the living room together, you

would feel less worry being near them. And of course hugging them

and holding them is always the best stress releiver.

I hope you get some sleep. I know it will be hard. Just when you

get one thing off your mind, another comes along. Then you start

making mental notes of what needs to be done tomorrow.

You know, they have those classes in high school to try to prevent

teen pregnancies. They make girls wear empathy bellies to see what

it is like being pregnant. I don't think they should do that. They

should find a way to recreate all of the stresses and worries of

raising children instead. I think they would get more results that

way. Or give each of them a teenager to be responsible for a week,

that will teach them.

Take it easy Bert, I know you can perservere. Your humor is always

strong on here, as your easy going personality. I know it will carry

you though. We are all here standing strong for you too.

Love,

CArole K

> i didn't ask enough questions, what in the hell is wrong with me.

zac's cbc is too low, one of his liver function tests was abnormal,

but i can't remember which one, not alt or ast, but something else

and one more blood test was abnormal, but what, i can't remember. he

says we don't have to worry about lukemia or another blood disease,

just yet, YET! what in the sam hell does that mean, why am i just now

catching on to that, he will be having surgery for the growth on the

outside of his head, that's infected now, doc put him on a med for

it, but they will have no idea what it is until they remove it then

send it our for testing, but that isn't until march. my baby alex's

lump that's inside his neck will be removed and biopsied too because

it's not going away, i am scared to death. brandon, my oldest has to

have more labs because his cholesterol was high before, so a recheck

is in order, plus he will do the same labs on him that he did on zac,

oh let them be normal. meanwhile brandon has tonsilitis, the 4th

time this year, so he has to have his tonsils out, i am going nuts, i

can't do this, it's too much, then of course i am sick, plus my doc

tells me i'll lose 50 percent mobility in my left hand and wrist with

in a year, from my bicycle accident last sept. i am already in pain

24/7 now from my fibro, and my injury, and to worry so much about my

kids, it's just too much, i am going to really lose it here. i can't

believe i left the office without asking more questions about

zachary, it just hit me like a ton of bricks! when i left i had to

run errands, pick up scripts, rush home make supper, get kids in bed,

and here i am feeling like a terrible mom because he said lukemia,

cancer and not yet in the same sentence and i didn't say

anything?????? alex was screaming, hates the doc, zac starts crying

cuz the doc is talking about him having surgery, i can't do all this

alone, i am gonna crack, to top it off, now i have to wait until

first thing in the morning, ask the doc exactly what he meant by what

he said about zac, now i'll worry all damn night. my hubby is

absolutely no help, he just puts it on the back burner and don't

think about it again, it's my job, i don't remember getting pregnant

by myself. my 2 yr old, my 8 year old, and my 15 yr old having

surgery at the same time, in the same year?????? i can't deal with

this, i am crying so much i am so scared, why are my kids so

unhealthy, i feed them right, did everything i was supposed to while

pregnant, what is going on here??????? is God punishing me by making

my kids sick, i feel my faith slipping away from me right now, i

haven't felt that way since my daughter died 11 yrs ago, i am worried

sick, and alex has the flu! bert.

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Bert, I am so sorry you are going through this rougha nd worrisome

time.

It's so hard to cope when our kids are ill and wouldn't we just give

anything to make it better.

Although I only have one, I have been scared witless and had my full

share of waiting in hospitals etc. for results or improvements. Once

they sent me up to the top of the building so I would not have to

hear my 6 months old scream during the examination.

This is what I send you for a little calm and next to the serenity

prayer Jerry mentioned, it has kept me going and getting better many,

many times:

If there is a solution to a problem, why worry. If there is no

solution, worry will get you absolutely nowhere.

And remember: kids are sturdy and strong, no matter how ill they are.

When mine was 10 she got the measles (long story why she could not

have a vaccine) and on day seven of high fever she looked at me and

said in this tiny clear voice: " I suppose I've got to go through this

to get better. " And when I nodded she said " I'll do my best. "

Don't panic, things will work out!

Love,

Sophie

> i didn't ask enough questions, what in the hell is wrong with me.

zac's cbc is too low, one of his liver function tests was abnormal,

but i can't remember which one, not alt or ast, but something else

and one more blood test was abnormal, but what, i can't remember. he

says we don't have to worry about lukemia or another blood disease,

just yet, YET! what in the sam hell does that mean, why am i just now

catching on to that, he will be having surgery for the growth on the

outside of his head, that's infected now, doc put him on a med for

it, but they will have no idea what it is until they remove it then

send it our for testing, but that isn't until march. my baby alex's

lump that's inside his neck will be removed and biopsied too because

it's not going away, i am scared to death. brandon, my oldest has to

have more labs because his cholesterol was high before, so a recheck

is in order, plus he will do the same labs on him that he did on zac,

oh let them be normal. meanwhile brandon has tonsilitis, the 4th

time this year, so he has to have his tonsils out, i am going nuts, i

can't do this, it's too much, then of course i am sick, plus my doc

tells me i'll lose 50 percent mobility in my left hand and wrist with

in a year, from my bicycle accident last sept. i am already in pain

24/7 now from my fibro, and my injury, and to worry so much about my

kids, it's just too much, i am going to really lose it here. i can't

believe i left the office without asking more questions about

zachary, it just hit me like a ton of bricks! when i left i had to

run errands, pick up scripts, rush home make supper, get kids in bed,

and here i am feeling like a terrible mom because he said lukemia,

cancer and not yet in the same sentence and i didn't say

anything?????? alex was screaming, hates the doc, zac starts crying

cuz the doc is talking about him having surgery, i can't do all this

alone, i am gonna crack, to top it off, now i have to wait until

first thing in the morning, ask the doc exactly what he meant by what

he said about zac, now i'll worry all damn night. my hubby is

absolutely no help, he just puts it on the back burner and don't

think about it again, it's my job, i don't remember getting pregnant

by myself. my 2 yr old, my 8 year old, and my 15 yr old having

surgery at the same time, in the same year?????? i can't deal with

this, i am crying so much i am so scared, why are my kids so

unhealthy, i feed them right, did everything i was supposed to while

pregnant, what is going on here??????? is God punishing me by making

my kids sick, i feel my faith slipping away from me right now, i

haven't felt that way since my daughter died 11 yrs ago, i am worried

sick, and alex has the flu! bert.

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YES YOU CAN DO IT, WE ARE ALL HERE FOR YOU. LOVE, PRAYERS AND HUGS

ANITA

>

> From: Homeykat@...

> Date: Tue 14/Jan/2003 02:54 GMT

>

> Subject: Re: [ ] in shock

>

> In a message dated 1/13/03 8:39:32 PM Eastern Standard Time,

> sunshinedotson@... writes:

>

> > i am going nuts, i can't do this, it's too much, then of course i am sick,

>

> {{{{bert}}}}

>

> Cheryl

>

>

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  • 8 months later...

In a message dated 9/15/03 5:54:01 PM Eastern Daylight Time,

rybabysmom@... writes:

> My advocate had an informal meeting w/ our vp. She was viewing my

> son's records. By the way several pages are mysteriously missing. He

> has the balls to tell her I have NEVER requested social skills help,

> a behavior plan, etc. Nor have I ever gave doccumentation of my son's

> dxes. I am in total shock. Also this vp does not remember threatening

> to kick my son out of school. He'd be happy to give my son a BIP and

> social skills class. Why didn't I ask??? Gee... However he now says

> that changing the label from speech to autism is a NO go. Yet last

> year his very favorite reason to deny us help was based on the

> misconception that no accomodations outside of speech could go on a

> speech IEP. I am beyond angry. This is ABSURD. Why did we have ALL

> those meetings? Does ANYONE really believe that I did NOT request

> these things? Hello? Why am I paying an advocate? Must be my split

> personality. AND I think this is my favorite we can NOT discuss the

> possibility of spelling and or writing accomodations as w/ today's

> technology these things are simply NOT important. So I guess he will

> have no problem providing my son a lab top w/ spell check!!!!

>

>

Just one little question.....Did you not bother to save YOUR copies of the

IEPS and all communication with the school?

Connie

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My advocate had an informal meeting w/ our vp. She was viewing my

son's records. By the way several pages are mysteriously missing. He

has the balls to tell her I have NEVER requested social skills help,

a behavior plan, etc. Nor have I ever gave doccumentation of my son's

dxes. I am in total shock. Also this vp does not remember threatening

to kick my son out of school. He'd be happy to give my son a BIP and

social skills class. Why didn't I ask??? Gee... However he now says

that changing the label from speech to autism is a NO go. Yet last

year his very favorite reason to deny us help was based on the

misconception that no accomodations outside of speech could go on a

speech IEP. I am beyond angry. This is ABSURD. Why did we have ALL

those meetings? Does ANYONE really believe that I did NOT request

these things? Hello? Why am I paying an advocate? Must be my split

personality. AND I think this is my favorite we can NOT discuss the

possibility of spelling and or writing accomodations as w/ today's

technology these things are simply NOT important. So I guess he will

have no problem providing my son a lab top w/ spell check!!!!

a

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Sorry to reply with advice that might sound obvious but it sounds

like you're dealing with a district that will fool around until you

make them stop. Unfortunately, that probably means getting a

professional evaluation to support your request, then probably advice

from a special ed attorney or advocate who's on the ball if your

advocate is not.

> My advocate had an informal meeting w/ our vp. She was viewing my

> son's records. By the way several pages are mysteriously missing.

He

> has the balls to tell her I have NEVER requested social skills

help,

> a behavior plan, etc. Nor have I ever gave doccumentation of my

son's

> dxes. I am in total shock. Also this vp does not remember

threatening

> to kick my son out of school. He'd be happy to give my son a BIP

and

> social skills class. Why didn't I ask??? ...

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a,

schools never cease to shock me with the absurdities they invent ....

I am so sorry.

waht does you advocate says you should do now ??

F

( ) IN SHOCK

My advocate had an informal meeting w/ our vp. She was viewing my

son's records. By the way several pages are mysteriously missing. He

has the balls to tell her I have NEVER requested social skills help,

a behavior plan, etc. Nor have I ever gave doccumentation of my son's

dxes. I am in total shock. Also this vp does not remember threatening

to kick my son out of school. He'd be happy to give my son a BIP and

social skills class. Why didn't I ask??? Gee... However he now says

that changing the label from speech to autism is a NO go. Yet last

year his very favorite reason to deny us help was based on the

misconception that no accomodations outside of speech could go on a

speech IEP. I am beyond angry. This is ABSURD. Why did we have ALL

those meetings? Does ANYONE really believe that I did NOT request

these things? Hello? Why am I paying an advocate? Must be my split

personality. AND I think this is my favorite we can NOT discuss the

possibility of spelling and or writing accomodations as w/ today's

technology these things are simply NOT important. So I guess he will

have no problem providing my son a lab top w/ spell check!!!!

a

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YES! And they KNOW that. I guess since the missing paperwork is NOT

stuff they had to sign they figure they can deny ever getting it. I

have a TON of proof. I think anyone w/ one brain cell remaining could

tell who is telling the truth. Then again I don't know if anyone in

the school district has even one brain cell. ;)

a

> Just one little question.....Did you not bother to save YOUR

copies of the

> IEPS and all communication with the school?

>

> Connie

>

>

>

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> Roxanna, I owe you big time! I have the PERFECT follow up letter

that

> shows I told the vp of my son's dx. And it talks about my requests

> and my disappointment in the committee. I did this ONLY after your

> great advice to follow up every meeting w/ a letter. I think it

will

> pay off. I just wish I had followed your other advice to buy a tape

> recorder. I knew it was good advice, but I put it off due to

> finances. Also I stupidly still had a wee bit of faith left in the

> school. Well maybe not faith. I just didn't expect a total lack of

> morals. I NEVER thought they'd get rid of papers. And I really did

> NOT think they'd have the guts or lack of morals to lie on this

> level.

>

> Thank You, a

>

Your Welcome, a. Never underestimate how low someone will go

to " win " in these " games " that we have to play. I've not only had

paperwork suddenly disappear from files on their watch but they've

come up with new paperwork that they invented to do a " CYA. "

Shocking, but true. If you haven't gotten a copy of what's in his

files, go and get that done. Last time I did that, they left a memo

in the file that I probably wasn't supposed to see but it did prove a

few things. lol. At the least, you can find out exactly what they

have.

Roxanna

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Thanks. I do have a full set of papers, but I am going to review his

file myself as soon as possible. I assume schools will be open again

monday.

And I never thought of them adding papers. Wowza. I need to think

like a criminal!

a

> Your Welcome, a. Never underestimate how low someone will go

> to " win " in these " games " that we have to play. I've not only had

> paperwork suddenly disappear from files on their watch but they've

> come up with new paperwork that they invented to do a " CYA. "

> Shocking, but true. If you haven't gotten a copy of what's in his

> files, go and get that done. Last time I did that, they left a

memo

> in the file that I probably wasn't supposed to see but it did prove

a

> few things. lol. At the least, you can find out exactly what they

> have.

>

> Roxanna

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Hi,

I'm hitting and missing posts....but I wanted to say that when I called my

son's school district to look at his file, she said it has everything that I

have and nothing else and that no one ever has requested this.....I find that

very hard to believe...

As you can guess, I'm going to look as they said the whole file will be

shipped to San Diego....I told her I didn't want any surprises.

Johanna

In a message dated 9/19/2003 6:16:35 PM Pacific Daylight Time,

rybabysmom@... writes:

> Thanks. I do have a full set of papers, but I am going to review his

> file myself as soon as possible. I assume schools will be open again

> monday.

> And I never thought of them adding papers. Wowza. I need to think

> like a criminal!

>

> a

>

> >Your Welcome, a. Never underestimate how low someone will go

> >to " win " in these " games " that we have to play. I've not only had

> >paperwork suddenly disappear from files on their watch but they've

> >come up with new paperwork that they invented to do a " CYA. "

> >Shocking, but true. If you haven't gotten a copy of what's in his

> >files, go and get that done. Last time I did that, they left a

> memo

> >in the file that I probably wasn't supposed to see but it did prove

> a

> >few things. lol. At the least, you can find out exactly what they

> >have.

> >

> >Roxanna

>

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> Thanks. I do have a full set of papers, but I am going to review

his

> file myself as soon as possible. I assume schools will be open

again

> monday.

> And I never thought of them adding papers. Wowza. I need to think

> like a criminal!

>

Yes! Now I have to number the actual IEP. Recently, they took the

last page that we signed and stuck it on another IEP. It makes it

look as if the IEP they originally brought was a lot better than it

actually was. I remember thinking that we went to all the trouble of

signing it in blue ink too - so that we'd have an " original " copy.

But I never thought they'd rip the signature page off and stick it on

something else. Unbelievable but true.

Roxanna

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> Hi,

> I'm hitting and missing posts....but I wanted to say that when I

called my

> son's school district to look at his file, she said it has

everything that I

> have and nothing else and that no one ever has requested this.....I

find that

> very hard to believe...

> As you can guess, I'm going to look as they said the whole file

will be

> shipped to San Diego....I told her I didn't want any surprises.

> Johanna

>

You are entitled to see what's in his file and to have a copy of the

papers in his file made for you at a reasonable cost. She has no

idea what you have at home so how could she possibly say you have

everything they have? Just smile and say, " good, now I need a copy

of everything in his file for my records. " The fact that nobody else

has ever done it really has nothing to do with anything under the

sun. It's just a fascinating factoid.

Roxanna

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In a message dated 9/20/2003 8:11:49 PM Pacific Daylight Time,

kneeleee@... writes:

> The fact that nobody else

> has ever done it really has nothing to do with anything under the

> sun. It's just a fascinating factoid.

>

Well, I don't believe her.....and yeah it is a fascinating factoid! I'm

going next week to have a look see :)

J

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Wowza! Why am I surprised? You'd think absolutely nothing would phase

me at this point. Darn, but these rosey colored glasses are hard to

part with! ;) a

> Yes! Now I have to number the actual IEP. Recently, they took the

> last page that we signed and stuck it on another IEP. It makes it

> look as if the IEP they originally brought was a lot better than it

> actually was. I remember thinking that we went to all the trouble

of

> signing it in blue ink too - so that we'd have an " original " copy.

> But I never thought they'd rip the signature page off and stick it

on

> something else. Unbelievable but true.

>

> Roxanna

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  • 3 years later...

Hello Janine,I also have a son that has had canal wall down

mastoidectomy.This was three years ago and since then he has had three

more operations ,one for excess scar tissue and granulations and two to

clean the large cavity left by the tumour ,he had reconstructive

surgery at the time of his main operation to rebuild the eardrum

unfortunately it hasnt helped as he now has no hearing in that ear.But

he manages fine with one ear .Regarding swimmimg it is so important to

keep his ear dry .we looked on the internet and found a company that

make putty buddies and ear bandit they are great as itis like having

double protection.The ear plugs mould to the shape of the ears and the

bandit wraps around the head fastening with velcro .We use both and he

has been fine.All the best wishes for your son ,Iremember how hard it

was.Kind Regards Tracie.

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Hi Janine,

Congratulations on a successful surgery. I know all of the details

can be overwhelming. My son is 11 and has had CWU surgery. If your

doctor gives the ok for water activity, we used the tradtional plugs,

with a Neoprene ear wrap. Ear Bandit was the brand we found here.

He was very embarassed to wear it at first. However, he learned

quickly that kids would say " what is that thing on your head? " He'd

simply answer, " I had surgery and can't get water in my ear. " After

that, they never said anything else. We often saw other kids with

them at the beach and I've had countless moms ask me where to get

them for their children with ear tubes.

The band kept the plug in tact, so he could dive, swim, play in the

waves, etc, without fear of it coming out.

We did have to wait the standard 8 weeks before he could swim, but

after that this method worked well.

Good luck to you and I'll pray for his quick recovery.

Sheri

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