Sara

[Guest guest]

In a message dated 3/23/2002 10:39:25 PM Eastern Standard Time,

pastmidvale@... writes:

> Zeb is sooooo lucky to have you in his corner! :~)

Hi Sara,

That was nice of you but I certainly don't feel that way. I am very nervous

about monday and the school situation. I sometimes wonder by insisting that

he be exposed to the same curriculum and enviroment as the typical kids that

I put him in harm's way. Remember this district's philosophy is not pro

inclusive. I do know that he has proven he can do the work and I want to push

him as far as he can go. If I opted for a self contained class he would

recieve a functional education at best.I would always wonder how much better

he could be if I didn't give him the chance. All the reg ed teachers have

never been exposed to any children with delays in their classrooms. It is a

lot more work for them and they are not as committed as they should be. I do

have the law on my side and keep the better records and documentation than I

do for my business. I have included every support and service on the IEP that

exists. We always fear the unknown and I just need to have faith that the

system works or that it will. The support from this group has been

invaluable.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Hey Sara,

These are excellent ideas. I will have to write them

down in my good idea book. We actually have another

guy in another home with a finger paining activity to

try to curb the smearing. The only problem is that

today I must go in and talk with the program manager

of that home because he is eating the finger paint.

The last time I went to the home was for a staff

meeting and I saw the staff put large glops of paint

on the counter and then just walk away. The guy

proceeded to smear the paint around on the counter

then lick his fingers. By the time he was finished his

tounge was greenish brown. The only thing the staff

said to me was that it was 'non-toxic' paint. I just

wanted to grab them and say that doesn't mean he

should be eating it. So we will be switiching to

edible fingerpaint.

Thanks for the ideas Sara,

Devrey

--- sara cohen <pastmidvale@...> wrote:

> -There is a great book: Steps to Independence that

> teaches how to toilet

> train without coercion. Excellent record keeping

> methods for behaviors.

>

> As to feces smearing - I took a course on strange

> behaviors and what could

> cause them. Since this is a new behavior, cleaning

> up and ignoring would be

> a good idea. But then give him an opportunity to do

> some GOOSHY things -

> finger paint, make chocolate pudding to play with,

> likewise jello, hair

> mouse is another idea presented. It may be the new

> sensation - even

> handling dough or wet sand may help.

>

> Keep on trying!!

> Sara

>

>

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[Guest guest]

Hey Sara,

See that is great. Hopefully I will be able to know

all of the people I work with well enough to figure

out what works with them. The problem I have is the

lack of time to spend with all of them. I have a total

of thirteen people that I am a behavior specialist for

and soon I'll have sixteen. It just does not leave a

large amount of time to figure these miracle solutions

out. I am glad to hear that you have found something

that works for you. It gives me hope that maybe I

could do the same.

Thanks Sara,

Devrey

--- sara cohen <pastmidvale@...> wrote:

> --One of the reasons that our kids are hard to

> discipline is the lack of

> comprehension of wrong vice right. They know our

> triggers by instinct but

> do not understand that it is not good to press those

> buttons. But time is

> on your side. Eventually he will learn to be

> compliant and follow the rules

> - to some extent.

>

> This is where ABA comes in and making a behavior

> plan. If doesn't

> understand the consequences of his behavior than he

> won't avoid the behavior

> because the immediate response may be enough of a

> jolt for him. Remember

> that negative response is still a response. Also,

> there are triggers to the

> behaviors. These are called the Antecedents. The

> most difficult thing is

> figuring out what triggers the behavior. You will

> much better at this than

> most of the behavior people. While they are good at

> recording behavior and

> consequences, many can't see what the triggers are.

> He needs to be taught

> that the positive response rewards him better than

> the negative one. I am

> NO expert on HOW one gets to this point but I have

> learned a few tricks.

> Learn what rewards him best. It can be different

> things for different

> occasions. Remind him BEFORE what the reward for

> compliance is. (Some people

> call this pre-teaching) The reward for

> non-compliance is NOTHING. We use

> removal of involvement for the non-compliance. By

> this I mean NO

> interaction, no conversation, no looking at Elie,.

> I even close my eyes and

> blank my face. This is the most difficult to teach

> to the " professionals " at

> school. They talk way too much - and these are the

> experts! Drives me

> wild.

>

> EXAMPLE: Today when Elie came home from school,

> both eyes were crusted

> because it is high allergy season and his tear ducts

> do not work. I

> wanted/needed to clean his eyes. He refused and

> slapped my hand away. I

> sat on the couch and told him to let me know when he

> was ready and closed my

> eyes. Over the next few minutes he sat next to me,

> leaned on my shoulder,

> touched my hand. but said nothing. After five

> minutes (it seemed like an

> hour) I asked him if he was ready - again he slapped

> at my hand and whined

> at me. Again I told him to let me know when he was

> ready. About 10 seconds

> later he said " Ready MOM - no hurt. " And let me

> clean his eyes. Reward was

> a big hug and a kiss.

>

> --Original Message Follows----

> From: Ltb3105@...

> Reply-

>

> Subject: Re: ODD

> Date: Wed, 24 Apr 2002 09:18:35 EDT

>

> In a message dated 4/23/02 9:09:37 PM Pacific

> Daylight Time,

> writes:

>

>

> > Byt that feeling, how could most of our kids get

> a dx of ODD and further

> > more - where does it serve them?? For the

> record, at age 9 when no one

> > had

> > even begun to think of ASD and DS for our son in

> the same breath, the dx

> of

> >

> > choice was ODD. My contention is that ODD - if

> that is what it is- is a

> > result of poor planning of interaction from

> adults.

> >

> >

>

> I don't know, Sara, all I know is that behavior

> intervention, strict

> discipline, has gone right out the window with ,

> as opposed to our other

> two sons, whom we didn't have a problem disciplining

> at all!! Having a name

> to 's compliance helps to understand his

> behaviors, he has NO FEAR or

> fear of consequences AT ALL....couldn't care less

> whether he goes to

> principal's office. doesn't know WHY he's going, but

> it gets him out of the

> classroom, so it must be a good thing....hehehe!!!!!

>

> I know there are a lot of conditions that have a so

> called " name " these

> days,

> years ago, they just put the kid in " reform school "

> or said they were brats

> and not properly supervised. What do you do when

> you've done all you could

> and the kid STILL misbehaves, due to conditions

> beyond the child's AND the

> parents' control??

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

> Sara - Choose to make lemonade, not complain about

> the lemons.

>

>

>

_________________________________________________________________

> MSN Photos is the easiest way to share and print

> your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

__________________________________________________

[Guest guest]

In a message dated 5/13/2002 8:36:10 PM Eastern Daylight Time,

pastmidvale@... writes:

> Do I remember that you are in Texas??

Hi Sara,

I live in Ct. The stay put law does apply here and I am hoping to pass the

time to get him through school,28 days to go. They never did say that he was

a danger to himself and others at the meeting today. They were very careful

how they chose their words. I was told not to offer much and I was compliant

not like Zeb. I did mention to the lawyer after the meeting about their

evalutions and I have it documented about his comprehension levels and she

told me the big attorney from the firm will take care of all this. It was

part of the game. I just let them talk mostly. I did mention about abusing

the timeout room as they began the speil about it being a room to just chill.

I told them Zeb was in their for an hour and 10 min. missing part of his

lunch. They said no that wasn't true and I pulled out my paper with it in

writing. The principal said no that was wrong and the sped director just

looked at him and said well that what it says. I bet they got h... for

writing that. I can't understand the trumped lame reason for not letting him

in the classroom without a bandaid. I will be in the principal's office

tomorrow about it. He was at the meeting with me also, won't know until I

tell him. I will let the attorney deal with all the other problems and I will

document everything for him. I can't be any crazier than I am already. Just

having that school off my back will feel like a vacation. I don't know how

you did this! The school districts seem to use the wear down tactic but I

won't go away without a good fight. I will try to make it memorable.

EVERYONE'S KINDNESS and SUPPORT IS MY SANITY!! THANKYOU

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Oh Charlyn, my heart is so with you and my prayers, their is so much wisdom in

this group, including your own. these are actually fights for all our kids,

along with Zeb, and we thank you for standing up and being so strong, you can do

it. All that I read from everyone is so important to me!! Sara said so many

important things didnt she, the bandaid thing made me so mad too!! Love ya

Charlyn!! Dawn

Re: Sara

In a message dated 5/13/2002 8:36:10 PM Eastern Daylight Time,

pastmidvale@... writes:

> Do I remember that you are in Texas??

Hi Sara,

I live in Ct. The stay put law does apply here and I am hoping to pass the

time to get him through school,28 days to go. They never did say that he was

a danger to himself and others at the meeting today. They were very careful

how they chose their words. I was told not to offer much and I was compliant

not like Zeb. I did mention to the lawyer after the meeting about their

evalutions and I have it documented about his comprehension levels and she

told me the big attorney from the firm will take care of all this. It was

part of the game. I just let them talk mostly. I did mention about abusing

the timeout room as they began the speil about it being a room to just chill.

I told them Zeb was in their for an hour and 10 min. missing part of his

lunch. They said no that wasn't true and I pulled out my paper with it in

writing. The principal said no that was wrong and the sped director just

looked at him and said well that what it says. I bet they got h... for

writing that. I can't understand the trumped lame reason for not letting him

in the classroom without a bandaid. I will be in the principal's office

tomorrow about it. He was at the meeting with me also, won't know until I

tell him. I will let the attorney deal with all the other problems and I will

document everything for him. I can't be any crazier than I am already. Just

having that school off my back will feel like a vacation. I don't know how

you did this! The school districts seem to use the wear down tactic but I

won't go away without a good fight. I will try to make it memorable.

EVERYONE'S KINDNESS and SUPPORT IS MY SANITY!! THANKYOU

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 7/10/2002 10:52:37 PM Eastern Daylight Time,

pastmidvale@... writes:

> I think our kids can learn to tolerate most things IF we take a lot of time

> and have the right reward (positive consequence).

Hi Sara,

I think you put things in perspective for me. I need to find a positive

consequence for Zeb and many of them for everything and just go back to

square one. Thanks for the idea. I'm still trying to make lemonade! LOL

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 7/12/2002 10:38:50 PM Eastern Daylight Time,

pastmidvale@... writes:

> Make sure the rewards - positive consequences are something you can live

> with and deliver promptly!!!

>

Hi Sara,

Zeb would drive me nuts if he had to wait a week too. Any reward that I give

him must be immediate or it will not be effective in his case. I do have

rewards for him now but I need to back up and make them in smaller increments

and more of them. I rarely have issues that are a problem except with school.

Elie's goat story is so funny! I serve lemonade in one of my trailers and I

always think of you when I'm mixing LOL

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

---I live at the end of the R-5 - west of the city and slightly north in

Caln Township - outside of Coatesville - central Chester County. I am a

pediatric nurse who is currently doing at home nursing visits and continuous

care for medically fragile kids (babies is my preference). Have a couple of

kids with autoimmune type problems. Interesting.

Have been to Philly twice this year - and will be there more this coming

year. But I spent 30 years avoiding the city so it is like I never ever

went there!!!

Sara - Choose to make lemonade, not complain about the lemons.

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

In a message dated 8/14/02 11:11:10 PM Eastern Daylight Time,

pastmidvale@... writes:

> ---I live at the end of the R-5 - west of the city and slightly north in

> Caln Township - outside of Coatesville - central Chester County

Sara,

Have you lived out that way all your life?

Donna

[Guest guest]

----Original Message Follows----

NO No No we had Lori for 3 years, but I went through hell the year before

she got there. She didn't want to mess with me. once we got to middle

school, Elie had a wonderful teacher. My problem was with the principal who

is now the curriculum coordinator and LORI is the asst. Principal I

believe. The principal put a " Danger to others " plan in effect after

Columboine soley for my son. They installed silet alarms in the teachers'

rooms that my son would enter in case he " attacked " someone. He called me

one day to tell me that Elie was hitting in the halls when Elie's IEp

specified that he was NOT to be in the halls when others changed classes.

Then I went to school and recorded every blow struck in the middle school

hall in a 15 minute period_ more than 50 blows were struck in my view from

one spot!!!! The principal left Elie alone after that.

Lori was a problem but better than Suzanne Mutic!!!!!!

<<Sara, Mom to Elie - 4 good years in Hershey Middle School.>>

Hi, Everyone.....Sara...if I remember correctly, though, you got out before

Lori Dixon took over the Spec. Ed dept. in Derry SD. She left Hempfield SD

in Lancaster right before we left for Illinois. We had 3 yrs. of bullsh*#

from her.....hearings, due processes and court cases. Such a lovely

woman....NOT. She's the one who told me " We don't put MR kids in Learning

disabled classes. They go in Life Skills. " Didn't matter that matter that

Gareth was reading, writing and doing math!!! Didn't believe in 1:1 aides

for

kids....they all 'belonged' in Life Skills classes till they 'learned' to

behave appropriately. Heaven forbid if your child disrupted the class, too.

Of course, if you put all the MR kids in the same room then none of the

normal kids will have to deal them....that was her mentality. Someday, she

will have to answer to the One above.... Take care, Everyone.

Margaret

Sara - Choose to make lemonade, not complain about the lemons.

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

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[Guest guest]

Hi Sara,

It's wonderful that Elie was able to benefit from a full sensory diet. I am

always battling the sensory diet issue with the OT in this district. They

seem to have a set schedule for all children and deviate little from their

routine. The school is beginning to realize that a fully sensory program is

necessary for Zeb. I asked last year for a sensory transition basket for

unstructured times. I laugh now about it but at the time I was irate along

with the teacher. The OT brought in the plastic bubble wrap. She felt it

would be great for Zeb to pop, maybe, along with the rest of the class. I

finally went out and purchased the items myself after waiting a month just to

get the bubble wrap. I do mostly all the therapy at home. Zeb's aide is

finally understanding some of the problems and has been very good about

taking him out on the swing etc.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 2/5/2003 7:49:38 PM Eastern Standard Time,

pastmidvale@... writes:

> Elie and he have a fairly cordial relationship - Elie will allow him to

> watch part of a Sesame Street movie in Elie's personal room. He also will

> allow the little guy to wear Cookie Monster slippers without wigging out.

> (Everything cookie monster in the house is Elie's). So I would say it is OK.

>

Hi Sara,

I think I missed a few posts. You have more children? I am still waiting for

Elie to rock this fussy baby here, LOL. I hope you little one recovers.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

Hi Sara,

I'm sorry I missed your posts about the kids. You must be a saint or I am a

lazy bum, LOL. How do you do this? I can barely manage one child let alone a

few more. It sounds as though you have everything under control and are very

organized. I have rules here too but no one follows them. Is Elie confused

having other children live with you? I'm not sure Zeb would respond very well

to that. I could never be a foster parent. I would get attached and be

crushed after the children left. I certainly admire you.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

Ouch! My back, What memories as we just went through this not too

long ago. I hate to admit this but my son Rick and I dragged him,

out of the bedroom, hallway, down the steps one at a time, out the

door. He would not budge and he was not going to listen. My friend

wanted me to leave him there as all he wanted to do was lie on her

bed. He was tired but if I did allow him to, he would of won this

battle and expect this all the time. This was at wee hours and I

wanted to go home. He was pretty stubborn once we arrived home. I

gently pushed him into our house as he was being cooperative just

moving like no tomorrow. Once home straight to bed. So, I'm curious

what had worked for you or how did you manage to get him out, too?

How is the neighbor? Oh Elie, Elie. Hugs to you!

Oh, I know the way I went about with was wrong but I was just

too tired and sleepy.

Irma, 14,DS/ASD

[Guest guest]

Ouch! My back, What memories as we just went through this not too

long ago. I hate to admit this but my son Rick and I dragged him,

out of the bedroom, hallway, down the steps one at a time, out the

door. He would not budge and he was not going to listen. My friend

wanted me to leave him there as all he wanted to do was lie on her

bed. He was tired but if I did allow him to, he would of won this

battle and expect this all the time. This was at wee hours and I

wanted to go home. He was pretty stubborn once we arrived home. I

gently pushed him into our house as he was being cooperative just

moving like no tomorrow. Once home straight to bed. So, I'm curious

what had worked for you or how did you manage to get him out, too?

How is the neighbor? Oh Elie, Elie. Hugs to you!

Oh, I know the way I went about with was wrong but I was just

too tired and sleepy.

Irma, 14,DS/ASD

[Guest guest]

W e cannot drag Elie - he still weighs abut 150 lbs. But he was cooperative

once I got there.

Other times we have had to wait him out. But I am ready for a new method.

A friend has suggested a spray bottle with water and I am ready to try it.

Elie hates water on his face except in the pool or shower. So I may have

something - will report if it works.

Sara - Choose to make lemonade, not complain about the lemons.

----Original Message Follows----

From: " mum592001 " <ICANFIELD@...>

Reply-

Subject: Re: Sara

Date: Thu, 12 Jun 2003 20:02:29 -0000

Ouch! My back, What memories as we just went through this not too

long ago. I hate to admit this but my son Rick and I dragged him,

out of the bedroom, hallway, down the steps one at a time, out the

door. He would not budge and he was not going to listen. My friend

wanted me to leave him there as all he wanted to do was lie on her

bed. He was tired but if I did allow him to, he would of won this

battle and expect this all the time. This was at wee hours and I

wanted to go home. He was pretty stubborn once we arrived home. I

gently pushed him into our house as he was being cooperative just

moving like no tomorrow. Once home straight to bed. So, I'm curious

what had worked for you or how did you manage to get him out, too?

How is the neighbor? Oh Elie, Elie. Hugs to you!

Oh, I know the way I went about with was wrong but I was just

too tired and sleepy.

Irma, 14,DS/ASD

_________________________________________________________________

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[Guest guest]

Leah,

Can't they, the child enforcement office, garnish butthead's, oops,

sorry, I mean ex's, wages since he works?

debby

On Sat, 14 Jun 2003 06:55:26 -0400 includeallofus@... writes:

> sara,

> cam is eight. dcse(department of child support enforcement) has the

> paperwork they are taking him to court july 25.

>

> what amazes me is this man say's he cant afford to pay, yet...... HE

> BOUGHT A BRAND NEW HOUSE april 28 for three hundred grand.

>

> i pulled up the county records and printed offf a copy. we are not

> even divorced yet and he is off buying a new house with his chick,

> and refuses to take care of his old one........BUTTHEAD........

> sorry joan it slipped :-)

>

> cam has a phonecard and his own email account i set up for him he

> can access from any puter. and noooooooo he hasnt checked it since

> heleft.

>

> i dunno sara.... dennis is a civilian working for the dept of army.

> it seems like something could be done. i am going to write an

> article t the wash post and see if they respond.

>

> i have nothing to lose........

>

> AND WOOHOO FOR YOU for graduating at 58.... the old phrase

> stands....... BETTER LATE THAN NEVER. GO SARA GO SARA GO SARA. just

> imagine me cyberly clapping for you.....

>

> take care all leah

>

>

[Guest guest]

In California attaching wages is not an issue. When my husband and his ex

divorced, they attached his wages for child support. He had no record of

non payment or anything. They just do it. Hopefully it's similar in TX.

And you can get that fixed.

Re: sara

Leah,

Can't they, the child enforcement office, garnish butthead's, oops,

sorry, I mean ex's, wages since he works?

debby

On Sat, 14 Jun 2003 06:55:26 -0400 includeallofus@... writes:

> sara,

> cam is eight. dcse(department of child support enforcement) has the

> paperwork they are taking him to court july 25.

>

> what amazes me is this man say's he cant afford to pay, yet...... HE

> BOUGHT A BRAND NEW HOUSE april 28 for three hundred grand.

>

> i pulled up the county records and printed offf a copy. we are not

> even divorced yet and he is off buying a new house with his chick,

> and refuses to take care of his old one........BUTTHEAD........

> sorry joan it slipped :-)

>

> cam has a phonecard and his own email account i set up for him he

> can access from any puter. and noooooooo he hasnt checked it since

> heleft.

>

> i dunno sara.... dennis is a civilian working for the dept of army.

> it seems like something could be done. i am going to write an

> article t the wash post and see if they respond.

>

> i have nothing to lose........

>

> AND WOOHOO FOR YOU for graduating at 58.... the old phrase

> stands....... BETTER LATE THAN NEVER. GO SARA GO SARA GO SARA. just

> imagine me cyberly clapping for you.....

>

> take care all leah

>

>

[Guest guest]

In a message dated 6/14/03 6:33:57 PM Central Daylight Time,

writes:

>

> In California attaching wages is not an issue. When my husband and his ex

> divorced, they attached his wages for child support. He had no record of

> non payment or anything. They just do it. Hopefully it's similar in TX.

> And you can get that fixed.

They automatically do that in Wisconsin also.

Karyn

[Guest guest]

--- In , " sara cohen " <pastmidvale@h...> >

New Elie story: Yesterday he decided to get all " clean and

shi8ny " . Found my double blade razor and decided to shave. So

today, the last day of school, he went to school with razor cuts all

over his face, telling everyone, " I shaved all clean and shiny, by

myself " . Needless to say the school was on the phone at 8AM to

verify the cuts.

> Sara - Choose to make lemonade, not complain about the lemons.

Sara,

I'm just enjoying reading Elie's stories. OH BOY!! Sound like a NT

boy to me. Thanks and many hugs.

Irma

[Guest guest]

Hi Sara,

Poor kid. Here is wishing him to a speedy recovery and prayers.

I wonder if some of his behavior were triggered by any hidden

medical issue?

Are you going to try to pay a visit at the hospital? Once he is able

to have any. This will give him some comfort.

Our kids have feelings and this will make a big difference,

especially to his parents.

Is the school providing a Get Well card made out by the class or

school staff along with a Get Well Basket? Which could include a

video, books/reading along books with tapes, CD of his favorite

character or whatever he enjoys, etc..

So once he is starting to feel strong pay another visit and read one

of those books to him when he sees you again, whether it be at the

hospital or at home during his recovery time, so you could start

that pairing, him getting adjusted to you, again. Good thing you

were assigned to your student as when the teacher leaves you'll

still be around for him. Many hugs and once again prayers to your

student. Looking forward hearing some good news that he will come

out of this.

Irma,15,Ds/ASD

[Guest guest]

Sara:

Thank you so much for your post. Yes, he is incredibly strong. He has

taught me a lot!

and Rob 15 Spondy

On Sun, 29 Aug 2004 02:06:29 +0000 " Sara Pace " <sarappace@...>

writes:

Hi ,

I am definitely keeping Rob in my thoughts and prayers (and the rest of

you

too!). He sounds like a remarkably strong person.

Sara (27, poly)

>Rob had his followup today to receive the renal biopsy results.

>The nephrologist thinks Rob has Alports syndrome. If you look it up on

>the Internet it can be quite frightening. Some sites I read said it

>always leads to renal failure in males.

>Today the nephrologist was trying to be as reassuring and upbeat as

>possible. I was having a hard time deciding whether he was just trying

to

>give us hope...I don't know. Bottom line: Rob's BUN and creatinine are

>NORMAL. That is awesome news. The bad news, there is irregularity of his

>glomerular basement membrane. Instead of being smooth, there are

>lamellations or cracks in it. This is indicative of Alports. Today, his

>urine had gross hematuria/visibly bloody. 2+ blood in his urine, protein

>and casts. The protein is the bad part. The protein is what causes the

>kidney damage. So we are going to treat that with Cozaar. It will lower

>the protein, the blood pressure (Robs is borderline high and that is a

>sign of kidney disease) and it can actually REBUILD the damaged areas of

>kidney! So this is wonderful news. Years ago they had nothing to treat

>it. Alports is incurable but if you can control the protein spillage you

>can control the disease.

>The only way to really diagnose this is with genetic testing that costs

>$3000-4000 dollars and of course insurance wont' pay for it because it

is

>not always reliable. So we are going on the biopsy results that he does

>have it.

>He said that there are many different variations of Alports and some are

>severe, some are not. Some people lose their hearing and sight. They

will

>keep a watch on that. There is some genetic research and they are hoping

>someday for gene therapy. The thing is, it is relatively rare, affects

>only 2 people in 20,000. Some can start out mild like Robs and stay that

>way for years, then go to renal failure. Some are very aggressive right

>away. So he will have to be very carefully watched. Labs to be repeated

>in 2 weeks and he wants to see Rob in 2 months, that will be the same

day

>we see rheumatology.

>Rob although he was in the room didn't really get all that we were

>talking about. Dr. D. was very careful around Rob about the wording he

>used. The words end stage renal disease, dialysis etc were never

>mentioned. Rob as always was still the happy go lucky guy and he had

very

>few questions. I guess little by little he will come to know what all

>this means. I am just worried about his eyesight and hearing. Dr. D

>didn't mention it, and it was impossible to ask with Rob being in the

>room, but I think I am going to get him a hearing test just as a

baseline

>so we will know if there are changes. I am going to get the pediatrician

>to order it.

>Dr. D treats many Alports kids apparently so we are in the best place.

He

>was upbeat and reassuring. This is just very hard to hear and to take.

>Thanks you guys for all your support and prayers. Please continue to

pray

>for Rob.

> and Rob 15 Spondy

[Guest guest]

With all you are going through, Sara, you are such an inspiration to me. Your

strength and courage are an inspiration to all of us. I have always felt that I

have an extended family here too.

This is very hard on the kids. Mine were 18, 8 and 16 months when I was

diagnosed. It was hardest on my 8 year old. All she really understood is that

cancer is a disease that kills and her mommy had it. I continued to try to stay

involved with her activities as much as my energy level would allow. It wasn't

easy, especially with the docs telling me to stay away from school so I didn't

get sick from the kids and die from a secondary infection. I'm so happy with the

way my immune system remained so strong during my chemo!

The elementary school loaned me a really good book for . It is called

" Our Family Has Cancer Too " . I don't recall the name of the female author, a

breast cancer survivor. It is written for children and is laced with humor but

maintains the seriousness of the illness. It is a really good book. We had some

laughs reading it together. It made feel a lttle better.

Now my little Mel is in 13 and in 7th grade. She has more than a couple of

friends whose mothers have beewn diagnosed with cancer. Though she is a very shy

child, she is a tremendous source of support for her friends who are going

through the cancer with their moms, like she did when she was so young. I'm so

proud of her!

I'm supposed to be working so I will wish you all my best in your continuing

battle. And I will continue to keep you in my prayers, as always. God bless and

strengthen you and shower you with His good graces.

Blessings,

Tom and Sara Moorman <tsmoorman@...> wrote: you have no reason

to apologize--You are human and you have gone through so much--just because it

was several years ago and not now doesn't mean it still isn't hard to deal with.

You don't have to be strong for me. It helps just to hear what others went

through. I thank you from the bottom of my heart for your prayers and thoughts.

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

- Helps protect you from nasty viruses.

[Guest guest]

Oh I don't know if I should be considered an inspiration--Things are pretty

rough around here right now I am just trying to stay positive. KWIM. Thanks

for sharing about your kids during your treatments. I think it is starting to

sink into my 6 year old how long I am going to be gone. It is starting to worry

her. I know in the end they will make it through it just fine but it is going

to be hard as we are going through it. Thanks for the prayers. They are what

is getting me through. Without his strength I would be nothing and this would

control me.

If and when I get into the Hope house for my treatments I will have computer

access so I will be able to stay in touch. I am really looking forward to that.

Thanks again

Sara

Re: Sara

With all you are going through, Sara, you are such an inspiration to me. Your

strength and courage are an inspiration to all of us. I have always felt that I

have an extended family here too.

This is very hard on the kids. Mine were 18, 8 and 16 months when I was

diagnosed. It was hardest on my 8 year old. All she really understood is that

cancer is a disease that kills and her mommy had it. I continued to try to stay

involved with her activities as much as my energy level would allow. It wasn't

easy, especially with the docs telling me to stay away from school so I didn't

get sick from the kids and die from a secondary infection. I'm so happy with the

way my immune system remained so strong during my chemo!

The elementary school loaned me a really good book for . It is called

" Our Family Has Cancer Too " . I don't recall the name of the female author, a

breast cancer survivor. It is written for children and is laced with humor but

maintains the seriousness of the illness. It is a really good book. We had some

laughs reading it together. It made feel a lttle better.

Now my little Mel is in 13 and in 7th grade. She has more than a couple of

friends whose mothers have beewn diagnosed with cancer. Though she is a very shy

child, she is a tremendous source of support for her friends who are going

through the cancer with their moms, like she did when she was so young. I'm so

proud of her!

I'm supposed to be working so I will wish you all my best in your continuing

battle. And I will continue to keep you in my prayers, as always. God bless and

strengthen you and shower you with His good graces.

Blessings,

Tom and Sara Moorman <tsmoorman@...> wrote: you have no

reason to apologize--You are human and you have gone through so much--just

because it was several years ago and not now doesn't mean it still isn't hard to

deal with. You don't have to be strong for me. It helps just to hear what

others went through. I thank you from the bottom of my heart for your prayers

and thoughts.

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

- Helps protect you from nasty viruses.

[Guest guest]

On Feb 21, 2006, at 7:11 PM, rvankonynen wrote:

> Hi, Sara.

>

> I'm happy to read of the results you've been getting with the SAMe. I

> haven't had time to think about your posts yet, but I hope to get to

> them soon. Life is hectic here. Tomorrow I have a dentist

> appointment in the morning and will be helping to pour concrete in the

> afternoon. This weekend is the OHM conference. I wish I could focus

> more on the list, but right now time is scarce. Just want you to know

> that I do care but can't do much about it right now.

>

Rich, no hurry. I'm still messing with the levels of the various

components to see how much I can wring out of the combo. It'll

probably take a couple weeks at least to figure it all out. I'm also

subtracting some supplements that may now be non-essential: I'm

completely off the SJW, and will be starting to drop out the

glucosamine next week.

SAMe is useful stuff; but a little seems to go a long way so far. One

of the things I'm trying to do is raise levels on some of the earlier

components to see if they'll help support more than 200 mg a day.

Like I said: workin' it out.

Mostly what I'm noticing this week is the consistent feeling that I

*want* to get out there and move. I remember feeling this when I was

younger and healthy -- the sense that there was excess energy to

spare in my body, which drove a bone-deep craving to dance, run, feel

my bones and muscles in motion. I'm feeling it almost daily now, and

it's astonishing.

It seems possible this feeling is located in the skeletal muscles,

which continue to feel stronger and better with every passing week.

My only complaint is that I don't seem to be as limber -- kinda

frustrating, since in recent years yoga has been the only form of

exercise that actually felt good and didn't wear me out (if kept

within limits). Now, my muscles and joints feel tighter and don't

yield so well, so all that stretching doesn't feel quite so nice.

Poses that I assumed easily a month ago are now much harder to

achieve. Hmphf.

On balance, though, I'll take it. The last big issue in my recovery

has been resolving my remaining post-exertional malaise. I'm starting

to get quietly optimistic that your protocol might be the thing that

does the trick. If it does, my recovery percentage (currently 80%, up

from a low of 30% at worst) will rise to the 90-95% level. (I'll

never consider it 100% as long as I'm having to take truckloads of

medication to sustain it; but that doesn't mean I'm ungrateful for

every hour of my life that I'm not spending at rock bottom anymore.)

When you get around to it, I'd appreciate your thoughts as to whether

and when I should move on to add the methionine. In the meantime,

enjoy your conference (and your concrete), and don't worry. I'm not

going anywhere.

Thanks for everything. You have my enduring gratitude. At the very

least, I owe you one really terrific lunch when I'm down your way

next month.

Sara