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GREAT!!! I'm happy that he slept for you. Nothing better than a full

nights sleep :)

I did see duck stickers at Wal-Mart - in fact, that was only a week

or so ago. It was at the one in Superior - by the cards (at the end

by the milk). They arent the clear backed ones, but they would still

work. You know what, if I see any again, I can always grab some for

you and leave them with Kim for Jadens file. She would give them to

you. I don't know if they would be exactly what you're looking for,

but they are cheap (like a buck).

But, I'll look when I'm out shoppin (I am a HUGE shopper).

Kim

> > > > > Howdy everyone,

> > > > > Jaden had another fitting today. We resolved the issues w/

> his

> > > > band

> > > > > that he got last Friday, so now it looks like a good enough

> fit

> > > for

> > > > > now. I am happy about it. We tried sleeping him in it

last

> > > nite,

> > > > > but he only lasted 1/2 the nite. But he does great in it

w/

> > his

> > > > > naps. So thanks for giving me pointers on what needs to be

> > > trimmed

> > > > > and for looking at his pics in his file everyone.

> > > > >

> > > > > His PT session went super well. He started it on April

9th,

> > and

> > > > > already the OT said his range of movement is greatly

> improving

> > > and

> > > > > she is seeing great results with him. I try to work w/ him

> as

> > > much

> > > > > as possible on a daily basis, and he is making little

> > milestones

> > > > > every week in his developments and abilities.

> > > > >

> > > > > So I just thought I'd give you an update.

> > > > >

> > > > > Kim in MN, how did Jax's session go this morning? Any word

> > > about

> > > > > that cyst? I asked about Dr. , but I guess he won't

> have

> > > > > anything to do w/ Jaden unless they feel he needs to be

seen

> by

> > > > him,

> > > > > which sounds unlikely.

> > > > >

> > > > > ~Amy, mommy to Jaden MN, plagio/mild tort, started

CranioCap

> > > 4/23/04

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COOL!

I can always leave the money with Kim at the desk for your next

appt, that would be great. I'd prefer the clear backed, but

whatever you find I'll take and leave you the money. Lemme know!

THANKS!

> > > > > > Howdy everyone,

> > > > > > Jaden had another fitting today. We resolved the issues

w/

> > his

> > > > > band

> > > > > > that he got last Friday, so now it looks like a good

enough

> > fit

> > > > for

> > > > > > now. I am happy about it. We tried sleeping him in it

> last

> > > > nite,

> > > > > > but he only lasted 1/2 the nite. But he does great in

it

> w/

> > > his

> > > > > > naps. So thanks for giving me pointers on what needs to

be

> > > > trimmed

> > > > > > and for looking at his pics in his file everyone.

> > > > > >

> > > > > > His PT session went super well. He started it on April

> 9th,

> > > and

> > > > > > already the OT said his range of movement is greatly

> > improving

> > > > and

> > > > > > she is seeing great results with him. I try to work w/

him

> > as

> > > > much

> > > > > > as possible on a daily basis, and he is making little

> > > milestones

> > > > > > every week in his developments and abilities.

> > > > > >

> > > > > > So I just thought I'd give you an update.

> > > > > >

> > > > > > Kim in MN, how did Jax's session go this morning? Any

word

> > > > about

> > > > > > that cyst? I asked about Dr. , but I guess he

won't

> > have

> > > > > > anything to do w/ Jaden unless they feel he needs to be

> seen

> > by

> > > > > him,

> > > > > > which sounds unlikely.

> > > > > >

> > > > > > ~Amy, mommy to Jaden MN, plagio/mild tort, started

> CranioCap

> > > > 4/23/04

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I'll get them for you.. consider it my.. headwarming gift :) lol - I

will still keep my eyes out for other ones, just in case. Maybe I'll

pop into s or something.. they may have some.

Kim

> > > > > > > Howdy everyone,

> > > > > > > Jaden had another fitting today. We resolved the

issues

> w/

> > > his

> > > > > > band

> > > > > > > that he got last Friday, so now it looks like a good

> enough

> > > fit

> > > > > for

> > > > > > > now. I am happy about it. We tried sleeping him in it

> > last

> > > > > nite,

> > > > > > > but he only lasted 1/2 the nite. But he does great in

> it

> > w/

> > > > his

> > > > > > > naps. So thanks for giving me pointers on what needs

to

> be

> > > > > trimmed

> > > > > > > and for looking at his pics in his file everyone.

> > > > > > >

> > > > > > > His PT session went super well. He started it on April

> > 9th,

> > > > and

> > > > > > > already the OT said his range of movement is greatly

> > > improving

> > > > > and

> > > > > > > she is seeing great results with him. I try to work w/

> him

> > > as

> > > > > much

> > > > > > > as possible on a daily basis, and he is making little

> > > > milestones

> > > > > > > every week in his developments and abilities.

> > > > > > >

> > > > > > > So I just thought I'd give you an update.

> > > > > > >

> > > > > > > Kim in MN, how did Jax's session go this morning? Any

> word

> > > > > about

> > > > > > > that cyst? I asked about Dr. , but I guess he

> won't

> > > have

> > > > > > > anything to do w/ Jaden unless they feel he needs to be

> > seen

> > > by

> > > > > > him,

> > > > > > > which sounds unlikely.

> > > > > > >

> > > > > > > ~Amy, mommy to Jaden MN, plagio/mild tort, started

> > CranioCap

> > > > > 4/23/04

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  • 5 months later...

Thanks for the advice, Leanne. I do have to take it easy and get

more rest. I live in Northern New Jersey (which can be stressful in

it's own right) though we live in a very quiet, pleasant suburb. I'm

very fortunate that I can stay home right now and that the illness

isn't devastating. It's manageable. I just got scared because I

hadn't had to deal with it for a while and all of a sudden it hit me

like a ton of bricks. Well, I better get some sleep. Thanks again,

Amy

>

>

> I'm sorry to read you haven't had any support. I don't have PA

> myself, I'm just the mother of a child with it, as well as 3 other

> children.

> Give yourself a break, by that I mean it's going to be hard

> enough without giving yourself a hard time. Take plenty of time to

> rest, don't worry about housework- it'll still be there when you

feel

> up to it (that's the beauty of housework!).If you're child is

> crawling, and everything that is dangerous to your child is up and

> out of reach, try not to stress too much.

> Are you getting enough sleep? My youngest is 3, and I still

try

> and sleep whenever he does. I'm sorry I can't help with the PA,

but I

> do know what it's like having small kids and not being well.As

long

> as you know that your son adores you, no matter what, it'll be

okay.

> By the way, where do you live?

> Please, take care

> Leanne

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  • 3 years later...

Um, which supplement helped the most? When I first started supplements I

started only a few at a time to see if there was a difference. The MSM, juicing

and the oils, and multi-vitamins and C were the first ones that I started with.

I think the MSM initally helped a lot with the swelling and pain.

In answer to your other question, I am trying to break up any scar tissue that

is internally. In the beginning my skin was tough and hard on the back of my

neck and my hands were dry, swollen and stiff. That all improved. Since this

disease is still active, it is depositing scar tissue somewhere that I can't

see. So I am trying to be proactive.

>

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