Re: [jra]

[Guest guest]

:

I would think that since you are on Enbrel, your body is not able to

produce the allergic (over)reaction that it used to...your immune

response has been repressed by the Enbrel.

We have noted that Rob's allergies are much less active since being on

the MTX and azulfidine.

And yes, you are special!!

and Rob 15 Spondy

On Tue, 29 Jun 2004 02:13:18 EDT bncknwurnumber@... writes:

Has anyone experienced a loss of an allergy since a JRA diagnosis.

Growing

up I was highly allergic to bee's.. severe reactions.. many trips to the

ER..

On Sunday I got stung by a bee with absolutely no reaction.. I found it

strange

since Bee sting allergies typically get worse with every sting.. Has

this

happened to anyone? Am I just special.. did I outgrow it.. I don't get

it..

(poly jra and spondy, 19)

PS. Thanks Helen for the kind words in my guestbook I really appreciate

it.

[Guest guest]

:

It was so nice to get to meet you at the conference. Rob enjoyed being

one of your roomies; I said earlier that you and Uncle Rusty should get

an award for putting up with two teenagers who are slobs!

I can't wait to see the pictures you took. I plan to send you some

doubles of ones I took, would you be able to post them in the album as

well? Also, instead of printing copies of your pics off, could I order

some from you? I have a lousy computer and printer, and I would like

professional quality prints. Just let me know prices, etc, ok?

Thanks for all you do for kids with JRA!!

and Rob 15 Spondy

On Wed, 28 Jul 2004 23:19:40 -0000 " " <bionicmaninmt@...>

writes:

Hello everyone,

Got back home safe and sound. All ready looking forward to next year's

Conference in Rhode Island. Just want to let you all know that was in

the group picture I should have it back in a few weeks and I will post

a internet copy here, if u want one to print out I will send u a much

larger file to your email address. The rest of the pictures from San

Deigo will be posted to a photo album. And will give the link to

those who want it, that will be about 6 weeks from now, takes me a bit

of time to do the work needed to post them online.

It was great meeting you all there.

Until next time take care everyone. I hope to meet many more of you

next year.

[Guest guest]

:

Thanks for the prayers...they are appreciated and mean so much.

and Rob 15 Spondy

On Mon, 30 Aug 2004 11:52:03 -0500 " Tepper, Michele "

<MTepper@...> writes:

- sending out prayers for you and Rob. Glad you got the results

and the med seems promising. I am sorry Rob has this new disease going

on. Wish I could be of more help, as you know how I feel about and

Rob being so similar, just know that I am thinking of you and I am

praying for the best outcome for Rob. Know that all of us are here

whenever you need to vent or whatever. Michele ( 17, pauci &

spondy)

Rob's renal biopsy results/long

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]

:

Hope that the UGI goes well for tomorrow. I can't believe how tall

he is!! He is definately very thin, though. I can't remember, my memory

is so bad lately, but is he seeing a GI specialist??

You know us moms and our nagging feelings are usually right,

unfortunately, we know our children the very best. Last year when Rob

very first started with the bloody urine, I had this ominous

feeling...even when they just kept telling me they'd just watch him.. I

was waiting for the other shoe to drop..

whoa, that sounded depressing...didn't mean to go off on that tangent!

Keep us posted on ok? I was thinking of him when I was cleaning my

car this morning...I am NOT a good detail man!

and Rob 15 Spondy

On Wed, 15 Sep 2004 12:33:17 -0500 " Tepper, Michele "

<MTepper@...> writes:

Glad to hear Rob's pain is down! It is good he is tolerating the med

well, and we hope right along with you that things go well. I hope when

you go in October there is a change to the positive for Rob. To quickly

answer your question about he is maintaining as of right now,

however he is 6'3 " at the last visit (although we believe he grew again

and is closer to 6'4 " ) but only 145 lbs still. His appetite is up and

down lately, but he does still eat well in my opinion. I am just

thinking that for some reason his body is not processing the food right.

I could be wrong of course, its just this nagging feeling I have. The

drs said that while growing taller should cause him to thin out, he

should not be losing weight while gaining height. When the JRA started

he was 172 lbs, but only about 5'8 " . So we shall see what if anything

this test can show. Enjoy those bike rides!! Michele

Rob's 'Monday' update...

Ok, here goes...

Rob's pain level is continuing to drop, his swelling in his knees is

almost non-existent, his energy level is increasing, and he (or should I

say we) are riding bikes daily! Yes, he says its time I got in shape

since my RA is in medicated remission It is such a joy to see him

emerging from his pain. I didn't realize how UN-animated and subdued (at

least for Rob) that my child was, and how little activity he did, until

Enbrel started working. He rated his pain yesterday as a '3' (down from

4 or 5 last week), the usual hips, knees, and back pain. We realize he

may never get total relief, and that damage has probably already been

done, but WOW...how awesome to see him obviously feeling and doing soooo

much better. Thanks to all you guys for all your support! Oh, I did get

final biopsy results from Rob's nephrologist. One of the findings

clearly points to Alports, but some of the others don't. So they are

still about 95% sure. They are talking about doing some further testing.

The nephrologist is also going to consult yet another expert in the

field about Rob's case, and I faxed him a release form today so he can

discuss the case. Rob is tolerating the Cozaar just fine, and we will go

back in October to recheck his urine and see if it is making any

difference. We are just hoping that if he goes into renal failure, that

it is many years before it happens. We have hope! and Rob 15

Spondy

[Guest guest]

I take two 25 mg shots a week. Which is soon to be the 50 mg shot. I get

the full adult dossage.

[Guest guest]

;

So how many ml's is the shot of Enbrel you take? 2 or 1?

Rob takes 7 shots a week of growth hormone plus the 2 of Enbrel each week, so 4

less a month would be very nice. We are anxious to talk to the rheumy about

switching.

I know you were very relieved to know that you didn't have a tumor...what a

scare!

Be sure and let us know about the surgery date, and also to have a WONDERFUL

birthday on Friday!

and Rob 15 Spondy

[Guest guest]

--...

I hope that the surgery is a complete success... i will be praying

along with everyone on the list for a speedy recovery for you.

Heres an early birthday wish from Nick and myself... have a super

day and enjoy yourself...

Hugs Helen and (7,systemic)

- In , bncknwurnumber@a... wrote:

> I take two 25 mg shots a week. Which is soon to be the 50 mg

shot. I get

> the full adult dossage.

>

>

>

[Guest guest]

:

I hope that you had wonderful holidays, too!

and Rob 15 Spondy

PS Rob has nephrology and rheumatology appts tomorrow in Cincy (1-1/2

hour drive or so...hope that their streets are as clean as ours have

gotten!)

On Mon, 27 Dec 2004 11:01:23 -0600 " Tepper, Michele "

<MTepper@...> writes:

Wow, that is a miracle!! Glad your kitties are home. Happy Holidays to

you and yours, Michele

OUR CHRISTMAS MIRACLE

Wednesday, at the start of our onslaught of 18 inches of snow and

freezing rain, our kitties got out. Sonic came home about 17 hours

later, hypothermic and in bad shape. We have gotten him slowly better,

and he is now fine. However, the last 14 hours or so we have had

sub-zero weather. We figured after another night outdoors last night,

our poor little Boo Boo was most likely not going to be returning home.

We got home this evening around 10, and our Princess Boo Boo Kitty came

home! Surviving over 60 hours in the outdoors, and the sub zero weather.

She was starving and tail slightly icicled, but in amazingly good shape.

Oh, if she could only talk, the tales she'd tell! We are feeling truly

blessed that God saw to bring our precious kitty home.

I wish all of you Christmas miracles. We are looking forward to a happy

healthy 2005, with dreams of cures for JRA and kidney disease too!

I love you all.

and Rob 15 Spondy

[Guest guest]

I just got this message today (Tues) so I am hoping that things are

cleaned up for you and the appts are going well. Let us know, Michele

OUR CHRISTMAS MIRACLE

Wednesday, at the start of our onslaught of 18 inches of snow and

freezing rain, our kitties got out. Sonic came home about 17 hours

later, hypothermic and in bad shape. We have gotten him slowly better,

and he is now fine. However, the last 14 hours or so we have had

sub-zero weather. We figured after another night outdoors last night,

our poor little Boo Boo was most likely not going to be returning home.

We got home this evening around 10, and our Princess Boo Boo Kitty came

home! Surviving over 60 hours in the outdoors, and the sub zero weather.

She was starving and tail slightly icicled, but in amazingly good shape.

Oh, if she could only talk, the tales she'd tell! We are feeling truly

blessed that God saw to bring our precious kitty home.

I wish all of you Christmas miracles. We are looking forward to a happy

healthy 2005, with dreams of cures for JRA and kidney disease too!

I love you all.

and Rob 15 Spondy

[Guest guest]

As long as we're sharing quotes. I like this old Marine motto. "Pain is weakness, leaving the body."

G'dayI've found a quote that I think sums up our wonderful brave and beautiful kids!Thought I'd share it.JoBayly, 3, extended oligo"Courage doesn't always roar. Sometimes Courage is a quiet voiceat the end of the day saying, 'I will try again tomorrow'."unknown*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^Owner/Moderator, Australian online support group for Juvenile Arthritisjra-australia/Check out our online Celebrity Charity auctionhttp://www.ausauction.comAnd meet the Fletchers athttp://www.trikearoundaustralia.com.au

[Guest guest]

My guess would be that it is more likely the arthritis itself - particularly if

her symptoms have been active, that is slowing Audrey's growth. My son has been

in " growth delay " for some time - within a few months of beginning on steriods -

which do delay growth. He has been on steriods for nearly 5 years - at

different doses - up and then down - then back up with a flare. During most of

this time he has had little to no growth - from age 3 to 6 he had an inch and a

half growth total for the 3 years - children in that age group generally grow an

average of 1.5 inches a year - He has had about an inch growth - maybe 1.5

inches in the last year - which is cause for celebration at our house His

steriods have been at a low 3mg for this time period, and I am sure that is why

he's had some growth. He height doesn't even register for his age on the growth

charts now & hasn't since about 6-8 months after diagnosis.

Robbie has been on methotrexate for a year as of this past January - and all of

this recent growth is from that time period. Cyclosporine can also delay growth

- another med my son has been on since soon after diagnosis.

I hope things improve for Audrey quickly!

Val

Rob's Mom (8,systemic)

I have two questions.

1. Audrey has been on Methotrexate since October 2004. In this time she

has fallen off of her growth curve - she has always averaged around the

50th percentile for height, and now is down to the 13th percentile. Her

rheumy says that methotrexate doesn't stunt growth, but has this happened

to anyone else?

2. Audrey just started the enbrel. How long do they usually remain on it?

Thanks for your help,

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

mail2web - Check your email from the web at

http://mail2web.com/ .

[Guest guest]

:

Thank you so much for your wonderful post...its a keeper!

I'm going to print it out for Rob.

Take care.

and Rob 17 Spondy

On Mon, 5 Jun 2006 19:29:18 EDT thewalkers1989@... writes:

Just have to chime in here as an adult " survivor " of this " awful "

disease.

JRA, can be and often is an awful disease - pain, meds, surgery, not

being

able to be " NORMAL " etc

BUT JRA (and all arthritis forms) do some good things - YES I said good

things. I am 36 and have had JRA since I was 3 - back during the " old "

treatments.

I DO NOT kow what life is like without JRA.

BUT JRA has

1. caused me to enjoy every pain free day

2. Helped me to try things that I otherwise might not have or if I'd

been

normal taken them for granted.

3. Helped me to be a more caring and compassionate person towards all

people

- normal or not

4.Because of my JRA, I waited 11 yrs after we got married to have kids -

had

we have not waited I would NOT have my darling daughter Destiny and we

would

NOT have been ready to have kids earlier in our marriage

5. JRA has helped me to know there are lots of people in a lot worse

shape

than me, and believe me I am one of the " worst " case scenarios of JRA

6. JRA helps me put things in priority - even though I do tend to

over-do

7. JRA has led me to this group of wonderful caring people who live with

this disease themselves or watch a child or other family member deal with

it.

As a child, I was not outspoken, but I wish I could've told people these

things:

1. I may not be normal - but I am the best ME I can be

2. I may not be able to do things like other kids - but I want to try

and do

what I can - just help me not to do something overly stupid and hurt

myself

3. Give me hope, encouragement, a swift kick in the butt when I need it,

push me when I need it, but give me LOVE most of all.

I had brothers who were 13 and 15 yrs older than me - and YES they still

felt

jealous of all the attention I got.

I had parents who did the very best they could do with what they had to

do

with - that is ALL any kid with this disease can ask. NO parents are

perfect,

even if you have " normal " kids. Be the best YOU can be and I promise -

your

kids will grow up, have a wonderful life, and be outstanding citizens -

even

with this disease.

The old saying " what don't kill us makes us stronger " really does apply

to

kids/YA/adults with RA/parents of kids with RA - we are some of the

strongest

people I know.

Sorry to ramble, just had these things on my heart. I have a 5 yr old

who is

'normal " and I feel guilty as a parnet for the things she has to do to

help

Mommy - but I know it will help her to be a more caring/considerate

person in

the long run. I regret I can't teach her to swim, or play Tball with her

- but

I CAN read to her, play dress-up with her, do crafts, and spend time with

her

and most of all Love her - so I do the best I can do.

love, prayers, and blessings

(age 36 - poly since age 3)

[Guest guest]

:

Thanks for the prayers for Tree. She knows she can rely on this list!!

I'll post something as soon as I hear any news.

Please also let us know what you find out about Aundrea tomorrow. I'm on

pins and needles as I know you must be. I'll be praying for her.

and Rob 17 Spondy

[Guest guest]

Hi ,

You are right, this two week wait has felt SO long and I have been

anxious. I keep telling myself that there is no way that this is

lupuas..It just seems like it is so rare in kids, even more rare than

JRA.

Yet, Aundrea keeps having new symptoms and they are worrying me. She

has so much fatigue. Has started taking two hour naps during the day

and is still exhausted by bedtime and even sleeping in far later than

she normally would...In addition to that the shortness of breath

continues and more complaints about feeling dizzy.

We were in Walmart yesterday and shopping for posters and stuff to

decorate her room. Her joints started aching and then she said she

just felt so dizzy that she needed to go sit down. She started

getting a rash on her face and after we sat down she said " I will

close my eyes and you tell me if I am moving " . Of course she wasn't.

She said it feels like everything is just spinning all around her.

I am so glad that tomorrow is the appt..I would have called much

earlier this week to get her in, but I figured they really just needed

to have all those lab tests back in before we know what to do next.

Thanks for thinking of us and I'll let you know what happens tomorow.

P.S. Lots of prayers today for Tree and family...I know she will be

glad when this procedure is all behind her.

(Aundrea 10 systemic)

>

> :

> Thanks for the prayers for Tree. She knows she can rely on this

list!!

> I'll post something as soon as I hear any news.

> Please also let us know what you find out about Aundrea tomorrow.

I'm on

> pins and needles as I know you must be. I'll be praying for her.

> and Rob 17 Spondy

>

>

[Guest guest]

Teri,

There are several Virginia families attending conference. Will you be there?

Liz

_____

From: [mailto: ] On Behalf

Of Terri Berube

Sent: Thursday, July 06, 2006 3:10 PM

Subject:

Do you know anybody who will be coming from VA??

[Guest guest]

All of us are coming we are so excited. Look forward to see you all there. I may

have missed it are you all meeting anywhere? Time? Day?

Thanks, Terri

Do you know anybody who will be coming from VA??

[Guest guest]

Teri,

There's been nothing arranged. I just know there are several families

because I was talking to folks at the AF office last week. I'm just planning

to keep my eyes open for VA on those nametags. I do know that three or four

families from the Fredericksburg event will be there along with several new

faces.

Liz

_____

From: [mailto: ] On Behalf

Of Terri Berube

Sent: Thursday, July 06, 2006 4:28 PM

Subject: Re:

All of us are coming we are so excited. Look forward to see you all there. I

may have missed it are you all meeting anywhere? Time? Day?

Thanks, Terri

Do you know anybody who will be coming from VA??

[Guest guest]

,

She really was just diagnosed last week. I worry that Enbrel would not be a

choice for her as I have read here it is rough on the immune system? She

already has a primary immune deficiency, for which she usually receives

infusions. Does MTX cause the same side effects? I really am not familiar with

any of the meds except the NSAIDs, as this is all so new to us...we were always

told we were 'just' dealing with tendonitis.

snooksmama@... wrote: :

I have to write quickly, I'm running late for work.

ROb does have ankylosing spondylitis, or jspa.

He started with Naproxen, they then added azulfidine, dropped that, then

went to methotrexate, and finally, to Enbrel. This has helped him the

most.

He has recently gotten really into exercising, and despite the fact that

he still has morning pain and stiffness, he has regained all the lost ROM

in his hips that he lost. For a period of about 18 months, he was on and

off crutches due to his hips being affected.

Rob can no longer take any of the NSAIDS since he was diagnosed with a

kidney disorder.

He is HLA B27 positive.

I can write more later tonight if you have more questions.

How long has she been diagnosed and are they considering moving on to

other meds? The biologics (especially Enbrel) works very well with

spondy. MTX helps too.

and Rob 17 Spondy

,

I have been noticing in your signature, that Rob has Spondy...does he

have ankylosing? What is the difference between ankylosing spondy and

jspa, do you know? What has helped Rob? What hasn't helped him?

Sorry for the questions....I haven't noticed anyone else on here whose

child has spondy except Chris...Michele first suggested that might be

what has...I e-mailed Michele but not sure it went through and

remember she has not been feeling well from her accident recently.

is seronegative, but the rheumy still feels pretty sure...as all of her

inflammation occurs low back, hips, knees, bottom of feet at pts of

insertion for tendons.

Any info, suggestions, anything would be appreciated. Right now she is on

Mobic and the rheumy just doubled her dose so do not know yet if it will

help..previous dose did not help much. Does Rob do much PT?

Thank you,

(, 16, CVID, spondy?, migraines, fibro)

[Guest guest]

,

I hope you are feeling a bit better?

is doing a little better, thanks to her IVIG...her fever is finally gone

but pain is still the same. I worry because her stomach has been hurting her

for a couple weeks (she just informed me...you know teens) and unless it could

be part of the illness, it would have to be the Mobic...she was switched to

Mobic because Anaprox was giving her severe stomachaches after months of use. I

don't know what her rheumy might choose to do...she is very conservative. We

have not had another follow-up since the diagnosis and increase of Mobic; her

rheumy has been out of town, and has been finishing her program for the

anorexia. She comes home Monday and goes to a partial day program for several

weeks so non-urgent drs appts and PT are still on hold.

I hope Rob's sinus infection is better - they can be tough to get rid of.

You said your hubby's birthday is May 26? 's is May 25....good month!

Praying you feel better soon.

(, 16, cvid, spondy, fibro, migraines)

snooksmama@... wrote: :

Yes, I have RA. I was diagnosed about 4 years ago. My mother was pretty

severe with it, starting in her 40's, so its the same pattern she

followed.

Thanks for your thoughts and how is doing the last few days?

Have you found out if she would be able to take any of the biologics,

with the CVID?

That has got to make the process of treatment frustrating, dealing with

more than one illness.

Rob's only limitation on his meds is no NSAIDS, due to his kidney

disease. However, I think that they would help him take the edge off his

pain.

Take care, and keep us posted on . (If Rob had been a girl, he

likely would have been . It was my hubbie's grandmother's name)

and Rob 17 Spondy

,

sorry to hear you are in so much pain...I did not know you were afflicted

as well.

Rob sounds like he is holding his own, with his job, workout, and

upcoming graduation. You must be proud of him!

I hope that you are feeling better soon and that your computer problems

resolve...

(mom to , 16, CVID, spondy, fibro, migraines)

[Guest guest]

,'s ankles were a new development this past week...with spondylitis, I didn't know if that was the norm. yes, her rheumy and immuno work closely together...when she sees one, she sees the other - their request...they communicate, and offer opinions, yet leave the final word to the respective specialist. Her rheumy is just so conservative, so we will see what happens at her next appt. It's just frustrating, watching her high school years slip by...she has given up/lost so much. Next year is her senior year and she does NOT want to miss it. I am hoping her new pain mgmt dr might be a good facilitator - he is at Children's L.A. and I am impressed with him so far.So, is it Rob who is wanting a tatoo? My 27 year old son has some...he says they are art...he is a handsome boy...I tell him it hurts me to see him do that to his beautiful skin...his wife hates the tatoos, and

that does not affect him, so what I say isn't going to either, but I tell him anyway...I figure I've earned the privilege = )snooksmama@... wrote: :Chiming in here... Since you know Rob has spondy, thought I would relate YES Rob's ankles and heels have bothered him. Heel pain is another hallmark sign of the ankylosing spondylitis or spondyloarthropathy. and Rob 17 Spondy PS Could you get her rheumatologist and immunologist to put their heads together??? Michele,alas, that is what I thought I understood from the forum and my concern; already has immune deficiency for which she receives the infusions...her rheumy is going to be reticent to give her meds that would further affect her immune system. I just don't know what else is available? The fact that 's back is now bothering her so much concerns me... also, did Chris' ankles or heels ever trouble him?Thanks,

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

,how was Rob's graduation? Did you cry a river of joyous tears? You must feel so proud!How is the testing going? I know you have a lot on your plate at this time, but please keep us posted as you can, okay? Continuing to uphold you in prayer,

Don't be flakey. Get for Mobile and always stay connected to friends.

[Guest guest]

WOW Donna that brought tears to my eyes.

Thank you!

love, prayers and blessings

, Greg, Destiny and Daneual

[Guest guest]

Hi Donna:

I am so sorry to hear of Dominic's passing. His mom sounds like one beautiful soul. How fortunate they were chosen to be mother and son. The world has lost one inspirational and special young man. My thoughts are prayers are with , you and your families.

Take care.

Patty

P.S. That's one of my favorite poems...........have it framed and on my wall too.

Get a sneak peek of the all-new AOL.com.

[Guest guest]

Wow...Both of those made me want to cry....Terri.....

This has got to be one of my favorite things Erma Bombeck has written and I think she pretty much hit it right on the head. Today I held my best friend as she wept and wept over her son. I have known all of my life and at age 19 she became a single mom to Dominic. Dominic was born very prematurely and suffered many problems as a result of cerebral palsy and secondary conditions, including arthritis. He was in the hospital the whole first year of his life and has been in and out of hospitals enduring sickness, therapies, surgeries, tubes, etc for all of his 21 years. On Sunday Dominic took his last breath. His smile and laughter will forever reside in my memories. He brought the same sort of smile to all who were privileged to meet him. His mother, my best friend (sister in life), never left his side. From his first breath to his last she was there. She literally made her son her life. when asked to go to lunch and let his grandpa watch him she would decline. When asked to get a flltime aide she declined saying "I am his mom". When assisted living came up, she said, "he** no". When asked to place him in special schools she NO! On May24th I was so proud when Dominic accepted his high school diploma at graduation and I know his mom was ecstatic. She fought for years for him to be in public school and he was. She changed diapers for 21 years. She fed him for 21 years. No questions, just love! To all of those special moms........hugs! Donna (with apologies for being so emotional)

Some Mothers Chosen By GodBy Erma BombeckMost women become mothers by accident, some by choice, a few by social pressures and a couple by habit.This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger."Armstrong, Beth, son. Patron saint, .""Forrest, Marjorie, daughter. Patron saint, Cecelia.""Rudledge, , twins. Patron saint...give her Gerard, He's used to profanity."Finally, He passes a name to an angel and smiles, "Give her a handicapped child."The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel.""But has she patience?" asks the angel."I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world and that's not going to be easy.""But Lord, I don't think she even believes in you."God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word." She will never consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations."I will permit her to see clearly the things I see....ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.""And what about her patron saint?" asks the angel, his pen poised in mid-air.God smiles. "A mirror will suffice."

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Hi ,the usual 'wait and see' for the meds does get discouraging, doesn't it? It is most difficult to see still hurting and swelling - I think it worries her she will never get relief from this awful arthur!I cannot imagine dealing with tornados and I hope the weather does not make it difficult for Rob to get home for the weekend - I hope all the chaos with his schooling calms down and perhaps he will be more accepting of some of the services offered through the college...it's a difficult age, isn't it? They want to be so independent, and do not want anything that sets them apart from their peers in any way...How is Rob feeling physically? You said your appt is for Oct 30? How are you feeling meanwhile? Is all of the pred you took still offering you any relief, I hope? I know you are looking forward to your time with Rob this weekend and I hope that you have some wonderful family time

together. Please keep us posted that you are okay with all the tornados passing through! (, 17, poly)snooksmama@... wrote: :It sounds like the usual 'wait and see if these meds work or not" that is so typical. I think that this was the most frustrating part of Rob's journey, was having to give this med or that med so much time to work. It used to drive me crazy. I'm so glad, however, that 's doctors seem to be working together and consulting one another...when you are dealing with more than just one issue it

is so important. I hate to hear that you are still not feeling well. I hope that you get more answers on November 7. I just talked to Rob and he is coming home for a visit on Saturday. He was studying so our conversation was quite short. Saturday can't come soon enough! and Rob 18 Spondy Re: Insurance - *#$ & !*#($ > and venting> @group s.com> > > Sorry - I know I am waaaaaay behind in responding to e-mails > > this week as my hands have been awful....but my dander is so > up > > right now, I had to vent or burst...> > > > my husband has been pushing me to verify out insurance > coverage > > for as she will be turning 18 late May and we don't > want > > any surprises. Well, she is covered til 19, then > til 25

IF > > she is a full-time student. BUT, let her be even > 1/2 > > credit short, and she will no longer have insurance... .no > > exceptions.. ..does not matter what the reason, she would be > > instantly dropped, permanently. > > > > Don't our kids (and us parents) have enough worries? > > Watching our kids suffer, miss out on "normal" stuff, alter > life > > plans, struggle to keep up, take med after med, and still have > > daily pain and fatigue?> > > > She feels out of place at high school, as all of her > > friends are self-focused and she is in such a different > > place...one boy kept asking why she is absent so must and she > > finally told him..the first and only she has told...kids are > > writing a controversial essay for english - most chose > abortion >

> or lowering the drinking age...my child is writing > (all > > her idea) on insurance companies and their exclusionary pre-> > existing clauses..she is 17 and her mind is thinking ahead > about > > these things. Instead of parties on the weekends, she is > looking > > to volunteer for a group that provides fun activities for > > children with cancer and their families. But, right now, > > it is a lonely place to be.> > > > Anyway, sorry, off my soapbox there...it just seems such a > major > > injustice that these kids who are ill and are trying so hard > to > > accomplish some normalcy with their life (e.g. achieve college > > degree), may end up jeopardizing their healthcare, but they > have > > no choice because the 12 units is they only way to > > maintain the

healthcare. > > > > Have any others faced this, where their child just could not > > handle the full-time credits? What options are out > > there? What did you find you could do? If her > > disease was under control, I might not feel so worried....just > > this a.m., she showed me her fingers, and they did not even > look > > like they belonged on her hand, they were so swollen and > > misshapen... and her migraines have been worse as well....I > think > > she is scared, though she doesn't come right out and say so, > she > > gets moody and sullen. She is to increase the mtx > tonight > > but if it hasn't done much so far, is it time to push for a > > biologic? She has been on the mtx 6 weeks now.> > > > Thanks for allowing the vent....I am worried too...and when

> > she gets to feeling so bad physically, so tends to > > communicate less, and that is difficult... .ah, teenagers... .> > > > Any input on the insurance dilemmas, or even things > > we can do to fight these terrible standards, > and/or where > > to begin, I'm anxious to learn!> > > > Thanks all, for your patience.> > > > nancy> > worried mom of , 17, poly, cvid, migraines> > > > > > ------------ --------- --------- ---> > Catch up on fall's hot new shows on TV. Watch > > previews, get listings, and more!> > > > > > ---------------------------------> Don't let your dream ride pass you by. Make it a reality > with

Autos. > > > > > > > > > > > ---------------------------------> Don't let your dream ride pass you by. Make it a reality > with Autos. > > > > > > > > > > __________________________________________________>