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Johanna

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Thanks ...

I am logged on DALnet most of the time, but usually I'm asleep so I

might not actually be there. But, you can try to send me a message by

using the command /msg and I'll answer if I'm there and awake.

I am glad you liked , he is really nice, but also a very good

teaser, just like my brothers. hehe.

Love,

Johanna

> Johanna,

>

> I just chatted with your friend in the chatroom, what a

wonderful

> person! I just wanted to check in with you and see if I can help

you at

> all. I am a great person to vent with, and we could schedule a

time in the

> chatroom for you if that'd help. Please let me know what I can do.

>

> #1

>

> PS...chin up girl!

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  • 3 months later...
  • 1 year later...
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<<< How are things over there right now for you and

> your family?>

fine...... we are dragging teh masks with us everywhere we go because teh

alert state here is not over yet. the kids complain about it now a lot.....

but I rather carry these boxes al day and not use it, then not carry it and

find ouselves in a terrible situation.......

Thanks,

Fania

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  • 3 months later...
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Johanna

of course, you are talking to a person who has never been

out of a 50 mile radius of where she was born LOL!!!!!!!

We are really considering moving to Florida.

Although I like NJ - no hurricanes, no tornados, no alligators,

no snakes to speak of - like Rattlesnakes in the garage - things

like that, no flooding, no tarantulas, no extreme heat - like AZ or

extreme cold - like ND - there are other things. Like too much

air pollution and chemical plants and high car insurance and

high property taxes.

The other big thing is - we already have a house in Florida that

we rent out and it is in a very nice area. Pensacola, home of the

white beaches and blue/aqua water. My dh checked out the job

situation and it really isn't going to be a problem.

The problem is . . . . . I have never been out of a 50 mile radius of

where I was born. hahaha - so what to do?? what to do??

I think - I'll go for it. If I don't like it, I can always move back -

right?

right. (easier said than done, but you only live once)

So - good luck with the move and the school - if it comes through.

Talk to ya'

Dawn

Thanks, Dawn...also for your stim input. I will try that.

I know what you are talking about with the move....and I totally agree, but

my natural reaction is to whine first LOL, and then I adjust. Change is not

great for me and it takes me time to get used to it, then I'm fine :) From

what I have seen so far searching the net, that area seems to have a lot of

support systems so it could be just what my ds needs.

I'll keep ya posted:)

Johanna

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In a message dated 7/21/2003 12:16:43 PM Eastern Daylight Time,

dayton@... writes:

> Although I like NJ - no hurricanes, no tornados, no alligators,

> no snakes to speak of - like Rattlesnakes in the garage - things

> like that, no flooding,

I beg to differ! Ok I live in a flood zone where it took 3 weeks for the

water to recede in our basement. It took a long time for us to recover from

Hurricane Floyd. Also there are a whole lot of rattlesnakes in NJ. I ran into

one

camping and the ranger told us we couldn't kill him but he could kill us. They

are endangered species and are coming back in NJ. LOL!

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  • 2 weeks later...
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thanks, Johanna!

he is right, though, I am really the one who always stop him / well, otherwise

he would continue doing whatever he is doing like in perpetuom mobile......

it's like he HAS to do the action all the way to its completion or else... but

the gameboy is never completed!

f

Re: ( )Fania/ re RAGE

In a message dated 7/30/2003 2:05:15 PM Pacific Daylight Time,

uplift@... writes:

> go in and tell him to turn off the light, he whines; " you always STOP me

> from doing things!!! " .

> oh, well!

> F

>

Fania,

Hats off to you for handling the whole situation with M. I think you did a

great exemplary job! This line made me smile, however, as my nt 17 yr old

says

something similar.... " you always hold me back " we have LOTS of discussions

about this and if she can leave with one thing it would be taking

responsibility for her actions. I know I am taking what was said and going

off the

subject, but I just wanted to tell you I enjoyed hearing it.

Johanna

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Johanna

GREAT NEWS!!!!!

one step at a time Mom, one step at a time :o)

*** way to go Joe!!!!!!!!***

Joe being stiff as a board reminded me of something funny

We have a one word command for them to stop in their tracks

immediately ** FREEZE** it used to be (Freeze like a statue)

but we worked it down to just freeze and it really works out well.

You never know when you might need it - car coming - poo poo

that you don't want them to step in *hahaha* but it does come

in handy - for both kids.

Take care

Dawn

Hi everyone,

I just wanted to report that Joe is starting to become aware of his stimming

behavior and I'm very excited. He is 4+ but up until the other day, he

seemed

to be in a fog while stimming. When he starts the stimming, (self

stimulatory behavior) I just state what he is doing like " you are feeling

jump " or that

his hands are flapping, and even though it hasn't lessened its a start. I

think once we find out if we are moving (I love being up in the air ~ LOL) I

ll

get a private OT and see if we can desensitize him with the movement stuff.

Most of the stims result from moving objects or things. The other day I

brought

it up that the electric train was making his arms wiggle and the next time

he

put it down he said " look mom, I'm not wiggling " but I can tell you he was

stiff as a board the whole 20 seconds ...but like I said its a start and I'm

encouraged!

Johanna

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Are you guys feeling this too?

***********absolutely!!!!!! I love just kicking back and not worrying about

school and all the hassles that go with it.

I casually mentioned that he was going to be 5 in 3 months and I was just

saying it because it seemed to be here so quickly. Well, he apparently didn

t

like the idea at all and started yelling, " no, he didn't want to be 5! " . And

he

wouldn't give me a reason when I asked. I just told him I thought it would

be fun to be 5 but the meltdown continues. I really never saw it coming.

Argh.

**********I know what you mean woman!!! sometimes they go off on stuff

that you never would have thought would rock their boat and the next thing

you know - your knee deep in it. Hang in there - I know it's frustrating!!

The interesting thing is in 3 weeks a new class starts and we all know what

that means (for us its 3 weeks of hard days and then it gets a little

better). Dawn, send me a funny story I'm in big need of them!!!

Johanna, slowly going nuts.

*******ROFLOL!!!!!!!!!!!!!!!!

such pressure - such pressure - hmmm let me think

ok - I will get you one by tomorrow. :o)

Take care

Dawn

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  • 4 weeks later...

Hi Johanna

I don't have anything to add, just a hug (((Johanna))) and a " hang in there "

Dawn

We just got some news however that will " stir the pot " a little.....our move

date was changed and it appears we have 4-5 weeks. Now, I'm thinking Joe

will

just be starting to settle down in his current classroom, my 17 yr old will

be getting the hang of getting up at the crack of dawn and then we move....

oh,

boy. I think I liked the other plan better! Joe had his first day of school

and I thought he did great til this morning when every little thing upset

him

to the point of melting....it just went on and on....this afternoon, he was

more withdrawn, probably tired too. I just wish it didn't have to be so hard

for him. Thanks for the suggestion of pictures to help him...I remember that

now:)

Johanna trying to stay afloat

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<<<<<<this is just the beginning. Soon you could be Fania renown speaker going

on a US tour :)>>>>

ha ha ha.. I will make sure to visit teh cities where teh list members are!!!

:-)

F

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  • 4 weeks later...

<<<<<<He can also put together anything

even without a manual which in my book is very impressive.>>

up to this point, I thought you were describing my dh...... now I am sure it is

yours, not mine .. mine will spoil everything with manual or without...... lol

F

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  • 5 weeks later...
  • 5 months later...
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Johanna,

I'm sorry I'm not in Texas, I'm in Virginia. I was speaking about the

transplant workup and used the

abbreviation TX. Sorry if I was confusing. I've been running a fever and have

a kidney infection, kidney stone and gallstone so I'm not making a lot of sense

at time. Today I feel much better though. Glad to be back and I missed you

guys a lot. I look forward to talking to everyone.

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  • 5 months later...

Hi Johanna,

I am actually located on the Iron Range, and we got the CranioCap

thru Gillette's extension site in Duluth. Travel time is 2 hours

round trip from up here. Thanks for your opinion on a 2nd band

also. I appreciate it.

Silent reflux is just a mild version of reflux. Jaden seemed to

be " chewing cud " at times, swallowing loudly, sometimes arched his

back during feedings, and in the beginning for the first 3 or 4

months could not lay him down w/o him " leaking " his formula back out

of his mouth, even during diaper changes. He never once thru up or

had projectile vomit as in the classic case of reflux. He also

would cough ever so often before or after " chewing " and swallowing.

I had him on Zantac for a while, and altho it didn't stop his spit

up, I know it reduced the acidity in his throat and it helped

prevent esophagial damage. I heard from lots of parents that

Prevacid has worked wonders for their babies. Hope that helps

answer your question. Post again should you have more.

Amy, mommy to Jaden 11 mo's MN

CranioCap grad

From: " johanna Chamberlin " <tatismom20@m...>

Date: Tue Oct 5, 2004 3:01 pm

Subject: RE: Front Page Star/ Jaden's Story

Amy,

Thank you for sharing Jaden's story. I see you are from the Twin

Cities. I grew up in Stillwater, MN, but now live in Kansas. My

opinion is that Jaden would probably benenfit from a second band.

But go with your gut instinct. I know everyone here would support

you in your decision.

One question for you. In Jaden's story you mentioned silent reflux.

I was wondering what the silent reflux means. My daughter lyse

has reflux, but I didn't know if there was a difference with silent

reflux and reflux.

Johanna and repo'in lyse

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