Patty

[Guest guest]

Debby,

no problem with sending cards:

Patty

4102 N 51 Ave

Hollywood, Fl 33021

she is doing much better today - I got really scared last night when I saw her. but it seems that she got some badly needed rest and today when I got to the hospital she was sitting in her chair. I rubbed her back (must be killing her after laying 5 days in ICU and her feet. She liked it very much. She is now coherent and is asking and answering questions. I met with the Dr. there and Patty made a deal with him - if she gets up und moves her leg - like steps on the spot- she gets some ice cubes to suck on --- guess what"? She got her ice cubes!!!!!!!!!!

The A & E TV crew was there during all that time and got it all on camera. So, maybe you can all see Patty's Transplant experience sometimes around December on A & E.

More important however is that she seems to be doing better now..... if she continues this way she might be moved out of ICU by tomorrow.

Karl

-----Original Message-----From: tdcc2000 [mailto:tdcc2000@...] Sent: Monday, September 01, 2003 7:11 PM Subject: RE: [ ] RE: Patty

Karl, do you have any objection if we send cards?

Debby

-----Original Message-----From: J. [mailto:scott_p@...] Sent: Monday, September 01, 2003 2:39 PM Subject: [ ] RE: Patty

,

while I appreciate it very much that all are concerned about Patty's wellbeing I would like to ask NOT to call the hospital.

Patty was operated again this morning and is still in ICU. It is a very difficult situation and I hope that we will come out of it okay.The nurses in ICU are very busy and have better things to do than answer phone calls from NON-Family. Please respect our privacy. It is already hard on me to deal with this and I will do my best to keep everyone informed. As soon as Patty leaves ICU I know that she will recover soon and I will be able to bring her home. Once home she will be on-line and be in touch with all of you.

Thank you for understanding.

Karl

-----Original Message-----From: gina413@... [mailto:gina413@...] Sent: Monday, September 01, 2003 6:09 PM Subject: [ ] Patty

Everyone: I just called Memorial Hospital (305-585-1111) to see if perhaps Patty was in a regular room. As of yet, I was told that she was still in the ICU. I talked to one of the nurses on the transplant floor and was told that she was not there and could not tell me how long she would be in the ICU, as it varies.

In speaking with this nurse she told me that live flowers were not allowed on that floor (only silk).

The following is her address (minus the Room No., of course, still waiting on that):

Memorial Hospital

Transplant Floor

W. Wing 15

1611 NW 12th Avenue

Miami, FL 33136

I am going to call back and see if they will put me through to the ICU to speak to a nurse and have that nurse give her a message that we are all praying and thinking of Patty.

Love and prayers -

gina

[Guest guest]

Karl,

So good to hear Patti is doing better....specially about her cutting

that deal...way to go! And gee, another celebrity in our

midst...this time on cable. Please send her my wishes for her

continued recovery.

nne

> Debby,

>

> no problem with sending cards:

>

> Patty

> 4102 N 51 Ave

> Hollywood, Fl 33021

>

>

> she is doing much better today - I got really scared last night

when I saw

> her. but it seems that she got some badly needed rest and today

when I got

> to the hospital she was sitting in her chair. I rubbed her back

(must be

> killing her after laying 5 days in ICU and her feet. She liked it

very much.

> She is now coherent and is asking and answering questions. I met

with the

> Dr. there and Patty made a deal with him - if she gets up und

moves her leg

> - like steps on the spot- she gets some ice cubes to suck on ---

guess

> what " ? She got her ice cubes!!!!!!!!!!

>

> The A & E TV crew was there during all that time and got it all on

camera. So,

> maybe you can all see Patty's Transplant experience sometimes

around

> December on A & E.

>

> More important however is that she seems to be doing better

now..... if she

> continues this way she might be moved out of ICU by tomorrow.

>

> Karl

>

> [ ] Patty

>

> Everyone: I just called Memorial Hospital (305-585-1111)

to see if

> perhaps Patty was in a regular room. As of yet, I was told that

she was

> still in the ICU. I talked to one of the nurses on the transplant

floor and

> was told that she was not there and could not tell me how long she

would be

> in the ICU, as it varies.

>

>

>

> In speaking with this nurse she told me that live flowers were not

allowed

> on that floor (only silk).

>

>

>

> The following is her address (minus the Room No., of course, still

waiting

> on that):

>

>

>

> Memorial Hospital

>

> Transplant Floor

>

> W. Wing 15

>

> 1611 NW 12th Avenue

>

> Miami, FL 33136

>

>

>

> I am going to call back and see if they will put me through to the

ICU to

> speak to a nurse and have that nurse give her a message that we

are all

> praying and thinking of Patty.

>

>

>

> Love and prayers -

>

> gina

>

>

>

>

[Guest guest]

Karl,

So glad to hear Patty is improving. I cannot imagine how scary this is for you. Please know that you are both in my prayers.

W

[Guest guest]

Thanks Karl for the website....Patty is in our thoughts.

Boy, she is a tough lady. , A fighter. She is an inspiration to me and Cliff. We wish her all good luck, hope she has a fast recovery.

Hugs to you both- and all of your family.

Love, Gaynel

[Guest guest]

Karl,

As usual thanks so much for the new pictures. She looks great. You can see improvement with each set of new pictures you post. I'm sure the incision will heal with time. It is such great news that the liver is working so well. Tell her I said hello and we miss her.

You hang in there and keep strong.

[Guest guest]

Karl :

Thanks so much for the update, and the pictures.!

Patty looks great. It is so great to hear the news.

It's amazing, it has been 3 weeks now. Tell her we said hello and hope for a quick recovery. Again, she looks great!!!!!!

Love, Gaynel and Cliff

[Guest guest]

Patty,

Welcome home. We knew you would get back with us as soon as you could. You take care and write us only when you feel up to it. We missed you. So glad you are home, new liver and all.

Take care.

[Guest guest]

, are you still out there?

Debby

[ ] Patty

Everyone: I just called

Memorial Hospital (305-585-1111) to see if perhaps Patty was in a

regular room. As of yet, I was told that she was still in the ICU. I

talked to one of the nurses on the transplant floor and was told that she was

not there and could not tell me how long she would be in the ICU, as it varies.

In speaking with this nurse she

told me that live flowers were not allowed on that floor (only silk).

The following is her address (minus

the Room No., of course, still waiting on that):

Memorial Hospital

Transplant Floor

W. Wing 15

1611 NW 12th Avenue

Miami, FL 33136

I am going to call back and see if

they will put me through to the ICU to speak to a nurse and have that nurse

give her a message that we are all praying and thinking of Patty.

Love and prayers -

gina

[Guest guest]

- Can you please tell me what happen to Patty I must have missed something here the last I heard was that she was home. Thank you,

H.

[Guest guest]

Hi Patty:

I live in Northern Idaho. Silverton in between Wallace and Kellogg. About 45

minutes from Coeur D'Alene. it is cool to find soapers near to me here. *LOL*

Love and Laughter

(Idaho)

Hi ,

Do you mind my asking where in Idaho you are? I am also in Idaho,

and would love to get to know some fellow soapers. You can e-mail me

off list if you would like. By the way, I am near Twin Falls.

Hope to hear from you,

Patty

[Guest guest]

In a message dated 1/27/04 11:58:14 PM Eastern Standard Time,

treesap61@... writes:

<<

When I was diagnosed finally my sed rate was 152 and at one point

even went to 179. But that was many years ago now and all we were treated with

was 40 aspirin a day and lots of bed rest. Y >>

Hi Tree:

Wow, you have had some high sed rates too. I was feeling like Caitlin's was

the highest one on here. I feel better knowing others have also had high sed

rates that have successfully come down after time/treatment. Forty aspirin a

day whew, that's a lot. How old were you Tree, when you were dx'd?

<<t a great measure but when there is a child involved it doesn't hurt to

watch it. The sed rate just shows the amount of inflamation in the blood stream

,

it does no>>

Does that means the blood stream is inflammed? Is that even possible?

Thanks for the information and cyber hugs.

Take care.

Patty

[Guest guest]

Patty:

We got our paraffin bath at Walmart. It was only $20. Only thing is, I

could not find refill parafin wax ANYWHERE and had to order it off the

internet! Go figure.

It is really a good way to get long-lasting, intense heat into the

joints. You dip the hand a few times, pull it out very quickly, and then

put your hand in a little plastic bag that comes with it. Then the heat

can really penetrate.

Just read about 's visit at the endo, looks like the growth has

begun! Patty, I know it is easy for me to say, but do try not to worry

too much about 's labs....I know that they have to explore every

avenue just to check and make sure nothing is going on with her,

autoimmune-wise, but hopefully the labs will come back ok and all will be

well. I'll keep her in my prayers. You have way too much on your plate

right now. Spring break is coming up, is there any way you can take a

short trip or get some 'r & r'? You have had a really rough couple of

months here and please don't forget to take care of YOU, too, mom...I am

worried about all you have to deal with.

and Rob 14 Spondy

On Wed, 28 Jan 2004 09:27:20 EST Emeraldsx3@... writes:

> In a message dated 1/27/04 11:10:35 PM Eastern Standard Time,

> snooksmama@... writes:

>

> << We also bought a parafin wax

> 'spa' and that is really good too for those really bad days. Rob's

> hands

> are not affected, but he loves playing with the wax when i am using

> it.

> Especially trying to get it off all in one 'glob'. >>

>

> Hi :

>

> You and Georgina have great ideas! I am going to get Caitlin a

> parafix wax

> 'spa'. It might help with her hands (they seem to be the only

> joints causing

> her any discomfort now). If it helps, wonderful, if not, well then

> she can

> play with the wax like Rob and try to get if off in one glob:)

> Where do I find

> these 'spas'?

>

> <<Rob had an endocrinology appt. today. The doc actually said he

> hasn't had

> a kid grow as fast as Rob! He is now wondering if perhaps Rob's own

> natural growth spurt has kicked in. Rob started last april at 4'10

> and 78

> lbs, today he weighed in at 5'2-1/2 inches and 100 lbs! At this rate

> of

> growth, if it continues, it would be 8 inches a year. If it does

> continue, we may be looking at further testing (which I think, he

> implied

> would require d/c'ing the growth hormone) to see if his body has

> started

> to produce more of it on its own. >>

>

> Wonderful news WHOHOO! That would be so great if Rob's own growth

> kicked in

> and he could stop the rGH. I will pray for that.

>

> Take care and tell Rob congrats for me on his phenomenal growth.

> Patty

>

>

>

>

[Guest guest]

Patty, at your grocery store look for gulf wax , it is usually where they keep home canning supplies, its about 1.69 per block and use might use three blocks or four depending on how full you like it. Also you will need to add a small amount of mineral oil to the melting wax. This will allow the oil to not stick to those tiny hairs and pull them out lol which could cause a bit of discomfort lol mineral oil is very inexpensive I think I got three bottle for a dollar last time I bought it. Good luck and i hope you find your wax. Oh should I say happy waxing. Wax on , wax off lol tree:):):) Re: Patty Patty:We got our paraffin bath at Walmart. It was only $20. Only thing is, Icould not find refill parafin wax ANYWHERE and had to order it off theinternet! Go figure.It is really a good way to get long-lasting, intense heat into thejoints. You dip the hand a few times, pull it out very quickly, and thenput your hand in a little plastic bag that comes with it. Then the heatcan really penetrate.Just read about 's visit at the endo, looks like the growth hasbegun! Patty, I know it is easy for me to say, but do try not to worrytoo much about 's labs....I know that they have to explore everyavenue just to check and make sure nothing is going on with her,autoimmune-wise, but hopefully the labs will come back ok and all will bewell. I'll keep her in my prayers. You have way too much on your plateright now. Spring break is coming up, is there any way you can take ashort trip or get some 'r & r'? You have had a really rough couple ofmonths here and please don't forget to take care of YOU, too, mom...I amworried about all you have to deal with. and Rob 14 SpondyOn Wed, 28 Jan 2004 09:27:20 EST Emeraldsx3@... writes:> In a message dated 1/27/04 11:10:35 PM Eastern Standard Time, > snooksmama@... writes:> > << We also bought a parafin wax> 'spa' and that is really good too for those really bad days. Rob's > hands> are not affected, but he loves playing with the wax when i am using > it.> Especially trying to get it off all in one 'glob'. >>> > Hi :> > You and Georgina have great ideas! I am going to get Caitlin a > parafix wax > 'spa'. It might help with her hands (they seem to be the only > joints causing > her any discomfort now). If it helps, wonderful, if not, well then > she can > play with the wax like Rob and try to get if off in one glob:) > Where do I find > these 'spas'?> > <<Rob had an endocrinology appt. today. The doc actually said he > hasn't had> a kid grow as fast as Rob! He is now wondering if perhaps Rob's own> natural growth spurt has kicked in. Rob started last april at 4'10 > and 78> lbs, today he weighed in at 5'2-1/2 inches and 100 lbs! At this rate > of> growth, if it continues, it would be 8 inches a year. If it does> continue, we may be looking at further testing (which I think, he > implied> would require d/c'ing the growth hormone) to see if his body has > started> to produce more of it on its own. >>> > Wonderful news WHOHOO! That would be so great if Rob's own growth > kicked in > and he could stop the rGH. I will pray for that. > > Take care and tell Rob congrats for me on his phenomenal growth.> Patty> > > >

[Guest guest]

Hi Patty, I was 8 years old when I finally had a good diagnosis. It took two years of searching from doctor to doctor to figure it out.By that time my sed rate had gotten that high but apparently there are some who can go higher. My mom thinks I had JRA however as early as between one and two yrs because of the way I walked which doctor said was nothing and because of the way I played and how cautious I was. At the age of six I had developed my own strange little way of walking and until I was put on all that aspirin, I never knew I'd been in pain. I thought everyone felt the way I did when walking, picked up things, or got down in the floor to play. I wish i knew of a better way to explain sed rate to you and I don't want to tell you wrong so maybe some others will chime in on this and explain better than I. It's not inflamation of the blood stream itself, but it does indicate that there is some kind of inflamation in the body. When there's inflamation in the body the immune system sends the lymphocytes or white blood cells to fight the invader and destroy it. the process is a healthy process but with arthritis the body is sending the white blood cells to fight an invader which just happens to be your healthy cartiledge or connective tissues. So high sed rates just means the body is fighting something vigorously. There is nothing in this one test to tell you if the body is fight JRA or it's healing a cut on your finger, or some bacteria has gotten under your fingernail, or maybe you have a sinus infection and that what is elevating your sed rate. But a sed rate can be a indicator for active JRA. Ok I think I just explained myself into a corner lol I'm really not good at this lol Help somebody please put patty on the right track lol Hugs to you Tree :):):): Re: Patty In a message dated 1/27/04 11:58:14 PM Eastern Standard Time, treesap61@... writes:<< When I was diagnosed finally my sed rate was 152 and at one point even went to 179. But that was many years ago now and all we were treated with was 40 aspirin a day and lots of bed rest. Y >>Hi Tree:Wow, you have had some high sed rates too. I was feeling like Caitlin's was the highest one on here. I feel better knowing others have also had high sed rates that have successfully come down after time/treatment. Forty aspirin a day whew, that's a lot. How old were you Tree, when you were dx'd? <<t a great measure but when there is a child involved it doesn't hurt to watch it. The sed rate just shows the amount of inflamation in the blood stream , it does no>>Does that means the blood stream is inflammed? Is that even possible? Thanks for the information and cyber hugs.Take care.Patty

[Guest guest]

In a message dated 1/30/04 12:27:29 AM Eastern Standard Time,

treesap61@... writes:

<< ou like it. Also you will need to add a small amount of mineral oil to the

melting wax. This will allow the oil to not stick to those tiny hairs and

pull them out lol which could cause a bit of discomfort lol mineral oil is very

inexpensive I think I got three bottle for a dollar last time I bought it. Good

luck and i hope you find your wax. Oh should I say happy waxing. Wax on , wax

off lol tree:):):)

>>

Thank you tree for the additional information to add mineral oil. That's all

Caitlin would need to be picking wax off her hairs OUCH! We are going to go

out this weekend and pick one up. Waxing away.

Take care.

Patty

[Guest guest]

Tree, you explained it BEAUTIFULLY. I now understand what the true meaning

of a sed rate is. Thank you so much for putting it into layman's terms.

Take care.

Patty

P.S. Is Tree a nickname, or your full name?

[Guest guest]

In a message dated 1/31/04 4:17:15 PM Eastern Standard Time,

treesap61@... writes:

<<

LOLOL Patty, I'm Theresa actually lol but there are so many theresa's in my

family I started being nicked it early in life. I'd actually stopped using it

so much after older aunts passed away, but then as I got a computer I picked

it back up again lol. I should tell you also that you might see my name

sometimes as tree sap and no that's not an insult but part of my married nameLOL

Sappenfield the really big laugh is my name is Theresa sappenfield which can be

easily converted to tree sap in a field. LOL OK enough about that LOL Hugs to

you all ! take care Tree:):)

----- Original Message -----

OMG Tree you are to funny. I thought it might be Theresa, but you never

know. I like Tree. The more I read the funnier you got. I love it. Tree sap:)

Tree sap in a field - to funny. I had a childhood friend whose name was Robin

Brown. She always said when she got married she was going to keep her name

and add his making it a hyphenated name. Well, she fell in love and got

engaged to a man with the last name of Rice. She was upset when she realized

her

name would be Robin Brown-Rice LOL. She changed her name to Robin Rice.

Take care.

Patty

[Guest guest]

LOLOL Patty, I'm Theresa actually lol but there are so many theresa's in my family I started being nicked it early in life. I'd actually stopped using it so much after older aunts passed away, but then as I got a computer I picked it back up again lol. I should tell you also that you might see my name sometimes as tree sap and no that's not an insult but part of my married nameLOL Sappenfield the really big laugh is my name is Theresa sappenfield which can be easily converted to tree sap in a field. LOL OK enough about that LOL Hugs to you all ! take care Tree:):) Re: Patty Tree, you explained it BEAUTIFULLY. I now understand what the true meaning of a sed rate is. Thank you so much for putting it into layman's terms.Take care.PattyP.S. Is Tree a nickname, or your full name?

[Guest guest]

In a message dated 2/1/04 10:11:56 AM Eastern Standard Time,

treesap61@... writes:

<< Anyway who cares about a name when then name is attached to a great guy

that makes me laugh, puts up with all this JRA crap pardon my french, and even

does laundry , dishes, and cleans the bathroom LOL. We just don't let him cook

( no more stomach pumping allowed LOL) have a great day !!! Hugs Tree:):)

>>

A good man indeed! I have a good one too and I actually let him cook:)

Take care.

Patty

[Guest guest]

Hi Patty,

Unfortunately, the response from Dr. Katz is quite typical..Unfortunately, in my opinion, this is not a good approach to take for treatment.

It seems, she is not familiar with Dr Mehtas work..Did you mention that early treatment with serial corrective plaster casts has straightened over 100 children in the U.K. There progress was followed for 10 years, and they are still straight.

(I.S.O.P. is in the process of gathering patient testimonials, at this point).

Dr. Katz needs to give you some numbers..You need to know what her curve is, and what her RVA is..They are both simple measurements that should take her 2 minutes to measure. In this case, these measurements are needed.

I would also suggest that she watches the video.

Patty, I would also get copies of all her x-rays, and mri...That way you have what you need when you send your babes info to other docs...They cant form an opinion without these films...

I would definately recommend that you go get a 2nd, 3rd opinion.

The curves of the children with progressive infantile scoliosis can increase fast..The child grows the most its 1st 2 yrs of life..The curve will grow with the child...Thats why the RVA is needed.....to determine if this is considered progressive, or not...

According to all of the docs that I communicate with, bracing has been proven to be of no significant benefit for young infants/children with infantile scoliosis...it may hold curve for a while, but thats about it....They do not correct..

There is 1 mom on the list that has gotten some correction from a brace...In the 5 yrs that I have been doing this, she is the only one that has ever seen correction from a brace...

You are in New York, right? I would also contact Moskovich. He has gone public with his belief in Dr. Mehtas treatment...He may be a good place to start...If not, I will give you the list of docs that I know of, and we can go from there.

The Shriners in SLC, and Erie do this, as well...

Let us know what the doc says today..

If you want serial corrective plaster casts, we will find someone to do it!

No worries!

Here is MosKovich's contact info,

301 East 17th St.

NY, Ny

10003

212 598 6621

talk soon,

(please take a look at the articles page of infantilescoliosis.com, so you can see what happens when the docs insist that you wait and watch..)

[Guest guest]

Patty,

I just realized that I only have Kayleighs grandfathers address. Would you like me to send it there?

[Guest guest]

,

Yes, please send the information to my father-in-laws address. Thanks.

Patty

>From: HRHandCO@...

>Reply-infantile scoliosis treatment

>infantile scoliosis treatment

>Subject: Re: Re: Patty

>Date: Mon, 23 Feb 2004 09:32:31 EST

>

>Patty,

>I just realized that I only have Kayleighs grandfathers address. Would you

>like me to send it there?

>

>

_________________________________________________________________

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[Guest guest]

Patty,

Its on the way.

[Guest guest]

Patty:When did you live in Louisville? Whereabouts?? and Rob 14 Spondy

On Sat, 3 Apr 2004 14:29:06 EST Emeraldsx3@... writes:

Well, drats. Makes me wish I still lived in Louisville:)Patty

[Guest guest]

In a message dated 4/3/04 9:41:54 PM Eastern Daylight Time,

snooksmama@... writes:

<<

Patty:

When did you live in Louisville? Whereabouts??

and Rob 14 Spondy

>>

Hi :

We lived at Hills (townhouses). I think we lived on Burnley Road or

Street. Testing my memory here LOL. We loved it there. Beautiful part of

the country:) Do you live near there?

Take care.

Patty