hello

May 14, 2008

Hi Jessi,

WELCOME! Wow, you have your hands full! My kids are all spaced out in age. THe school should be doing a full educational evaluation. Once that is done, you will have a meeting to go over the results. Does he already have an IEP? If not, he might get one if one is needed.

It's hard to know what you should do next because it all depends on your ds and what his particular problems are. If he is having trouble in school and I am assuming he is because he is being tested, then a good eval should help you and the IEP team come up with ways to address those problems.

Anyway, feel free to jump in here anytime and ask if you have any questions!

RoxannaAutism Happens

( ) Hello

I am not sure if I have introduced myself or not so I will now just to be sure.I am Jessi. I have 4 boys ages 4 1/2, 3 1/2, 2 and 7 months. Our second oldest Andy has mild cp and is now being assessed by the school system for asperger's or something else on the autism spectrum. They are pretty sure that it is asperger's though. I am just wondering were do we go from here?Thanks everyone.Jessi

No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.23.15/1426 - Release Date: 5/10/2008 11:12 AM

May 14, 2008

I never thought about this - that one could not have CP and ASD at the same time. Why not?

I have often wondered if the little guy I work with who has severe autism, also has CP. I think he has several problems going on at once which is why he is "severe" really. He is obviously (to me!) a smart little guy under all that.

Anyway, my now 19 yo (hfa) was in 3rd grade (the same parochial school - what a year, lol) and he did not get many supports. He got help with reading (title one) but that was about it. Anyway, a teacher finally asked me if he had CP. I was surprised totally! He doesn't. Why would anyone think that? Well, I started really looking objectively at him and the way he walked out of school each day...his arms were pulled inward, his arms up midway and hands curled inward. I mean, he walked very stilted and looked like he had some major neurological glitches happening. duh. lol.

At any rate, we realized it was part stress and part "just autism". He had trouble motor planning so swinging his arms when he walked or ran was not something he did. But the stress of the school day made everything 5 times worse and he would pull his arms in as a reaction to the stress load. I suppose I had just gotten used to seeing him as he is so it didn't click as anything odd in my brain until the teacher asked me that.

But I do agree - school's do not usually have the staff with approrpiate credentials for dx'ing kids with anything other than learning problems. So one should definitely find a specialist somewhere who can do an evaluation and make a proper dx.

RoxannaAutism Happens

( ) Re: Hello

As an RN who has worked with kids in a Psych. setting I would find a Specialist who has had advanced CLINICAL training with children with various disabilties. School personnel normally do not have the amount of training it takes to make differential diagnosis of this kind, esp. at such a young age. Find THE specialist to confirm the education department's suspicion. Then continue with counseling for a time to learn the ins and outs of your child's way of relating to and perceiving the world and what methods you can institute while they are young to help them adapt to it. The biggest mistake a person can make is to rely solely on the school districts opinion without getting an official diagnosis and help in all aspects of the child's life. My BIL and SIL had two childred with CP, we have a son with Asperger's. From my own experience in healthcare I have not run across a child with CP and autism, although theremay be some. Usually CP kids are either bright and normal intelligence or they may havemicrocephaly along with the CP diagnosis, which is NOT autism but can cause a type ofmuteness or difficulty in communicating. Why does the school suspect Asperger's? It isnot easy to diagnosis in kids as it is, it would be harder to diagnose in CP kids even forhealth care givers. At the very least go to a reputable online source to look up both CP and Asperger's and read up on them. www.udel.edu/bkirby/asperger for Asperger's Syndromewww.ucp.org/ for Cerebral PalsyBe sure to look at the extremes in both cases and then ask yourself if YOU think this is could be your child. = )Dee ><)))*> >> I am not sure if I have introduced myself or not so I will now just to > be sure.> I am Jessi. I have 4 boys ages 4 1/2, 3 1/2, 2 and 7 months. Our > second oldest Andy has mild cp and is now being assessed by the school > system for asperger's or something else on the autism spectrum. They > are pretty sure that it is asperger's though. I am just wondering > were do we go from here?> Thanks everyone.> Jessi>

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May 14, 2008

Roxanne

Andy does not have an IEP he has an IFSP I believe. He did have a full

educational eval about 1 1/2 years ago. That is when we actually found out that

he had Mild cp. That is part of the issue now I think because he wasn't old

enough then to really evaluate him for autism. Now that he is I am having a

hard time because they just evaluated him 18 months ago. Thanks for your

advice!

Jessi

---- Roxanna <madideas@...> wrote:

=============

Hi Jessi,

WELCOME! Wow, you have your hands full! My kids are all spaced out in age.

THe school should be doing a full educational evaluation. Once that is done,

you will have a meeting to go over the results. Does he already have an IEP?

If not, he might get one if one is needed.

It's hard to know what you should do next because it all depends on your ds and

what his particular problems are. If he is having trouble in school and I am

assuming he is because he is being tested, then a good eval should help you and

the IEP team come up with ways to address those problems.

Anyway, feel free to jump in here anytime and ask if you have any questions!

Roxanna

Autism Happens

( ) Hello

I am not sure if I have introduced myself or not so I will now just to

be sure.

I am Jessi. I have 4 boys ages 4 1/2, 3 1/2, 2 and 7 months. Our

second oldest Andy has mild cp and is now being assessed by the school

system for asperger's or something else on the autism spectrum. They

are pretty sure that it is asperger's though. I am just wondering

were do we go from here?

Thanks everyone.

Jessi

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

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Checked by AVG.

Version: 8.0.100 / Virus Database: 269.23.15/1426 - Release Date: 5/10/2008

11:12 AM

--

Jessi

A PARENT'S PRAYER

My God make my home a happy home founded on Unselfish Love and Sacrifice

Grant me Prudence Perseverance and Humility in the performancy of ALL my duties

Increase my Patience and assist me in Guiding each of Your children and mine

with Love Wisdom and Understanding

Give me Courage to say No to them when I should regardless of their pleading and

temporary sadness

And may my Conduct and Speech Inspire and Encourage them in Their Steps Toward

You so that 1 day All my family may be United in Your Eternal Home

Amen

May 14, 2008

Roxanna

Wow!! it never occured to me that the cp dx might be wrong but that is just how

he uses his arm (just the left one) and he also toe walks with his left leg. It

definately gets worse at times but I always thought it was because he was just

tired. Thank you so much for your response I am going to talk to our dr. right

away.

Jessi

---- Roxanna <madideas@...> wrote:

=============

I never thought about this - that one could not have CP and ASD at the same

time. Why not?

I have often wondered if the little guy I work with who has severe autism, also

has CP. I think he has several problems going on at once which is why he is

" severe " really. He is obviously (to me!) a smart little guy under all that.

Anyway, my now 19 yo (hfa) was in 3rd grade (the same parochial school - what a

year, lol) and he did not get many supports. He got help with reading (title

one) but that was about it. Anyway, a teacher finally asked me if he had CP. I

was surprised totally! He doesn't. Why would anyone think that? Well, I

started really looking objectively at him and the way he walked out of school

each day...his arms were pulled inward, his arms up midway and hands curled

inward. I mean, he walked very stilted and looked like he had some major

neurological glitches happening. duh. lol.

At any rate, we realized it was part stress and part " just autism " . He had

trouble motor planning so swinging his arms when he walked or ran was not

something he did. But the stress of the school day made everything 5 times

worse and he would pull his arms in as a reaction to the stress load. I suppose

I had just gotten used to seeing him as he is so it didn't click as anything odd

in my brain until the teacher asked me that.

But I do agree - school's do not usually have the staff with approrpiate

credentials for dx'ing kids with anything other than learning problems. So one

should definitely find a specialist somewhere who can do an evaluation and make

a proper dx.

Roxanna

Autism Happens

( ) Re: Hello

As an RN who has worked with kids in a Psych. setting I would find a

Specialist who has

had advanced CLINICAL training with children with various disabilties. School

personnel

normally do not have the amount of training it takes to make differential

diagnosis of this

kind, esp. at such a young age. Find THE specialist to confirm the education

department's

suspicion. Then continue with counseling for a time to learn the ins and outs

of your

child's way of relating to and perceiving the world and what methods you can

institute

while they are young to help them adapt to it. The biggest mistake a person

can make is to

rely solely on the school districts opinion without getting an official

diagnosis and help in

all aspects of the child's life.

My BIL and SIL had two childred with CP, we have a son with Asperger's. From

my own

experience in healthcare I have not run across a child with CP and autism,

although there

may be some. Usually CP kids are either bright and normal intelligence or they

may have

microcephaly along with the CP diagnosis, which is NOT autism but can cause a

type of

muteness or difficulty in communicating. Why does the school suspect

Asperger's? It is

not easy to diagnosis in kids as it is, it would be harder to diagnose in CP

kids even for

health care givers.

At the very least go to a reputable online source to look up both CP and

Asperger's and

read up on them.

www.udel.edu/bkirby/asperger for Asperger's Syndrome

www.ucp.org/ for Cerebral Palsy

Be sure to look at the extremes in both cases and then ask yourself if YOU

think this is

could be your child. = )

Dee ><)))*>

>

> I am not sure if I have introduced myself or not so I will now just to

> be sure.

> I am Jessi. I have 4 boys ages 4 1/2, 3 1/2, 2 and 7 months. Our

> second oldest Andy has mild cp and is now being assessed by the school

> system for asperger's or something else on the autism spectrum. They

> are pretty sure that it is asperger's though. I am just wondering

> were do we go from here?

> Thanks everyone.

> Jessi

>

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

No virus found in this incoming message.

Checked by AVG.

Version: 8.0.100 / Virus Database: 269.23.16/1427 - Release Date: 5/11/2008

1:08 PM

--

Jessi

A PARENT'S PRAYER

My God make my home a happy home founded on Unselfish Love and Sacrifice

Grant me Prudence Perseverance and Humility in the performancy of ALL my duties

Increase my Patience and assist me in Guiding each of Your children and mine

with Love Wisdom and Understanding

Give me Courage to say No to them when I should regardless of their pleading and

temporary sadness

And may my Conduct and Speech Inspire and Encourage them in Their Steps Toward

You so that 1 day All my family may be United in Your Eternal Home

Amen

April 10, 2009

Hi Cricket,

I'm glad you found us today, but I'm really sorry to hear about your

lupus diagnosis. That is so sad, but not very surprising actually.

There are a number of women on this group and thousands upon thousands

who have autoimmune symptoms after implantation.

You'll figure out the workings of our group...it's not hard. You can

either read the posts online, or you can choose to get them delivered

into your email box. If you get them in your email box, you'll get

every message without missing anything. Otherwise, you'll have to check

back on the website as often as you can to see what's new here.

You're right to be concerned about the lupus diagnosis as related to

your implants. However, I want to urge you to be cautious when making

your surgery appointment for explantation (that's the term for

extraction of implants.) You want your explant to be done properly. A

proper explant requires that you have not only the implants removed, but

the scar tissue that has formed around it as well. This is because the

scar tissue can contain particles that are reminders to your body of the

presence of the implants, and just like other things that can cause

severe allergic reactions, just a tiny reminder of those implants can

keep your immune system activated and producing symptoms.

So, you want to request a total capsulectomy with drains from your

surgeon, and even better, request " En bloc " removal.

If your surgeon insists that this is not necessary, then I would urge

you to look for a new doctor for explant.

This issue is serious enough that most women who seek a proper explant

will travel to the right doctor to get it done correctly. We are always

looking for good doctors to add to our list of recommended plastic

surgeon, but over the years, this list has grown very, very slowly. We

have several doctors in various parts of the country who actually

understand the severity of our illness and the necessity of a proper

explant for healing, so we often recommend those doctors in the interest

of the health of the women.

We've heard horror stories from women who have gone to other doctors who

do not take their request to heart....stories like Nan's and 's

and others, who have found out through reading their operative report

that their doctor actually lied to them about what he did in that

operating room, and having to go back for a second surgery to remove

that scar tissue.

We've also heard where women found out that their " saline " implants were

actually silicone gel implants, because the doctor was either using up

old inventory, or whatever reason there was for making a switch in

women's choice of implant, unbeknownst to the woman.

I've also seen women who were scarred because their doctor resented

their desire to be explanted, and left them with horrible railroad track

scars, rather than trying to make them look pleasing.

And finally, there are doctors who tell women that they will look

deformed if they remove their implants, and little do they realize that

they are admitting to their own lack of skill....because we KNOW women

can look beautiful after explant. A plastic surgeon's whole job is

bound up in being able to make people look better, not worse, so if you

hear this, it's time to get out of that doctor's office and find someone

who can assure you of their skills to make you look good.

We've helped hundreds and thousands of women over the years with the

support they need as they go through the difficult process of getting

explanted and getting used to the idea of living without implants. I am

certain you will get plenty of support from loving women. Just ask

your questions and we will do our best to help.

I believe your lupus can be put into remission. I've seen it happen,

heard from women who have had it happen, and read about it on other

forums, so remain hopeful about your situation. You can live

well...even after implants.

God bless,

Patty

>

> Hello,

>

> I'm new. Not only do I need to figure out how to use this group but

also . So hopefully I can. I have saline implants and was just

diagnosed with Lupus. I'm very concerned and have made a doctors

appointment for extraction.

>

> I'm afraid of the surgery and the recovery " and " what I'll look like

after.

>

> I hope I can find the support I'll need here. I think I will once I

figure this all out.

>

> Thanks,

> Cricket

>

May 14, 2010

I too, spend a lot of my time at home. It is too hard to talk with people and hear about everything their families are doing when I yearn for those "normal" things. It takes too long to explain about my kids to people when I haven't seen them for awhile so it's just easier to stay home.

Jen

My name is . I have two daughters ages five and seven years old. My seven year old was diagnosed last year with High Functioning Autism, Sensory Processing Disorder along with other disabilities that have come to light since then. I have spent my last year feeling that I am dealing with this alone. My mother was making me out to be an unfit mother. My husband does not understand fully what sets her off or how to deal with her when she has a bad day. The only person I had to talk to was my cousin, She has her own issues as her children have O.C.D and Aspergers themselves. So it is hard to really have a conversation with her or to get together because her son has the violent part of the Aspergers. My daughter is super sensitive to everything and cries at a drop of a dime. I came her to find friends and support from others that are going through the same thing I am. There are days I feel isolated and withdrawn from everyone around because

some days it is hard to go anywhere when she is having it rough as I can never tell what will set her off from one day to the next.

August 19, 2010

Hello and welcome to the group. There are members who have used CST. I would say

most are happy, but generally don't report dramatic results. It is considered an

alternative treatment, and most people who chose it do so along with banding. I

admit I am quite skeptical and haven't tried it. However you can search old

messages by going to the group's web page. You will likely find a lot of posts

there.

-christine

sydney, 4.5 yrs, starband grad

>

> Hello everyone. Our son has been recently diagnosed with plagio and we're

waiting for our appt. to get measured for the helmet. In the meantime, I'm doing

research (how I found this group) and have only just barely touched the surface

of information located here. It's amazing how much info is here.

>

> I was curious to see if any of you have also tried craniosacral therapy and

what your experiences were like with that. I don't know too much about it and

just hoping to know more.

>

> Thanks.

>

October 12, 2010

Sounds pretty similar to what I went through. I noticed my son's head starting to flatten around his 2 month appt. The doctor said to try repositioning exercises. Went back for the 4 month appt and the doc wanted to wait another 2 months before taking another course of action. I didn't agree with this so when I got home, I did some research online and found a Cranial Tech near me. I contacted them and they were able to get the ball rolling. You may want to try this. If your pediatrician has a problem with this, find a new one. Hello

New to the group. My name is Sheryl, mom of 4 month old baby boy, BB. He was diagnosed with torticollis and plagio at 2 months. The pediatrician seemed to think that it was a mild case and did not even refer us to a PT, just told us to do some exercises and said that it should be fine.2 months on I am feeling very uneasy with this carefree approach to my boy's care. He still has a head tilt, some plagiocephaly. Truly it is not "TERRIBLE" bad, but it's enough to make any mother's heart ache. His last check up today and I brought up how I thought that he was bending to his left all the time, and he ordered x-rays (which he had not done before.) I asked him to check for scoliosis also. The end result is that he said he did not think there was a problem but he would refer us to an orthopedic specialist to check for scoliosis and see us at the next well baby visit (2 months from now!)Is this the standard of care? I have been scouring the internet but I just feel that I do not have the proper skill to assess how bad or not-bad his torticollis/plagiocephaly is. I do not know where to turn. I am going to demand PT for him and damn the pediatrician if he thinks it's unnecessary. If the orthopedist won't then I will MAKE the pediatrician give us a referral. I just feel so helpless because I know there is a window where plagio can be best treated and I do not want to miss it.I am in Fresno, Ca. Does anybody know of a pediatrician or SOMEBODY who can help us? I have to be more proactive for my baby's sake!!!

October 13, 2010

I can tell you from experience Torticollis will NOT go away on it's own. You need to stretch his neck everyday and you need the help of a physical therapist. The Plagiocelphy will not improve and could continue to get worse until you get the Torticollis under control. We started physical therapy at 4 months old with my daughter and she is now 11 months old and is still in therapy. If you want to email me directly I can help you with the starter exercises and suggestions we have used that have made a difference until you can get into a physical therapist.

Hello

New to the group. My name is Sheryl, mom of 4 month old baby boy, BB. He was diagnosed with torticollis and plagio at 2 months. The pediatrician seemed to think that it was a mild case and did not even refer us to a PT, just told us to do some exercises and said that it should be fine.2 months on I am feeling very uneasy with this carefree approach to my boy's care. He still has a head tilt, some plagiocephaly. Truly it is not "TERRIBLE" bad, but it's enough to make any mother's heart ache. His last check up today and I brought up how I thought that he was bending to his left all the time, and he ordered x-rays (which he had not done before.) I asked him to check for scoliosis also. The end result is that he said he did not think there was a problem but he would refer us to an orthopedic specialist to check for scoliosis and see us at the next well baby visit (2 months from now!)Is this the standard of care? I have been scouring the internet but I just feel that I do not have the proper skill to assess how bad or not-bad his torticollis/plagiocephaly is. I do not know where to turn. I am going to demand PT for him and damn the pediatrician if he thinks it's unnecessary. If the orthopedist won't then I will MAKE the pediatrician give us a referral. I just feel so helpless because I know there is a window where plagio can be best treated and I do not want to miss it.I am in Fresno, Ca. Does anybody know of a pediatrician or SOMEBODY who can help us? I have to be more proactive for my baby's sake!!!

October 13, 2010

Hello Cheryl,Welcome to the group. INSIST on that referral to a PT to take care of the tort. If the tort is not resolved you are wasting your time with the helmet because of the likelihood of regression. Work on the tort first and then go from there. You're lucky, your baby is young enough that he may end up not needing a helmet.Good luck and keep us posted!-AmyFrom: o_osmiley <o_osmiley@...>Plagiocephaly Sent: Tue, October 12, 2010 1:08:05 AMSubject: Hello

New to the group. My name is Sheryl, mom of 4 month old baby boy, BB. He was diagnosed with torticollis and plagio at 2 months. The pediatrician seemed to think that it was a mild case and did not even refer us to a PT, just told us to do some exercises and said that it should be fine.

2 months on I am feeling very uneasy with this carefree approach to my boy's care. He still has a head tilt, some plagiocephaly. Truly it is not "TERRIBLE" bad, but it's enough to make any mother's heart ache. His last check up today and I brought up how I thought that he was bending to his left all the time, and he ordered x-rays (which he had not done before.) I asked him to check for scoliosis also. The end result is that he said he did not think there was a problem but he would refer us to an orthopedic specialist to check for scoliosis and see us at the next well baby visit (2 months from now!)

Is this the standard of care? I have been scouring the internet but I just feel that I do not have the proper skill to assess how bad or not-bad his torticollis/plagiocephaly is. I do not know where to turn. I am going to demand PT for him and damn the pediatrician if he thinks it's unnecessary. If the orthopedist won't then I will MAKE the pediatrician give us a referral.

I just feel so helpless because I know there is a window where plagio can be best treated and I do not want to miss it.

I am in Fresno, Ca. Does anybody know of a pediatrician or SOMEBODY who can help us? I have to be more proactive for my baby's sake!!!

November 3, 2010

Welcome Yemie

I'm glad you found this group too I really think you're going to love it

here. Everyone is so caring and supportive...see you around the board!

W

>

> Greetings all,

>

> I am so happy to have found this group. My son was diagnosed with HFA last

> summer, I am eager to learn as much as possible to best understand his needs

and

> put in place the appropriate services to help him succeed.

>

> Thanks for providing this forum.

>

> Yemie

>

November 3, 2010

Thanks !!

From: <kristenwallen@...> Sent: Wed, November 3, 2010 7:40:23 AMSubject: ( ) Re: Hello

Welcome YemieI'm glad you found this group too I really think you're going to love it here. Everyone is so caring and supportive...see you around the board! W>> Greetings all, > > I am so happy to have found this group. My son was diagnosed with HFA last > summer, I am eager to learn as much as possible to best understand his needs and > put in place the appropriate services to help him succeed. > > > Thanks for providing this forum.> > Yemie>

November 3, 2010

Hello Yemie,

Welcome to the group. I hope you find some comfort and answers from this wonderful group. I've really enjoyed my short time here. Everyone is going through and experiencing simular things and that helps to know you are not alone. :-) ne

From: Yemeseratch Girma <yemieg@...>Subject: ( ) Hello Date: Tuesday, November 2, 2010, 5:17 PM

Greetings all,

I am so happy to have found this group. My son was diagnosed with HFA last summer, I am eager to learn as much as possible to best understand his needs and put in place the appropriate services to help him succeed.

Thanks for providing this forum.

Yemie

November 4, 2010

Yemie,

Have a look at www.aspergersresource.org too.

> >

> > Greetings all,

> >

> > I am so happy to have found this group. My son was diagnosed with HFA last

> > summer, I am eager to learn as much as possible to best understand his needs

> >and

> >

> > put in place the appropriate services to help him succeed.Â

> >

> > Thanks for providing this forum.

> >

> > Yemie

> >

>

November 27, 2010

Hi

I see you are holding out okay....good for you. I often think about Lisbeth

and miss her dearly. I just wish I could have met her as I know some have.

Just to bring you up on an update abit, it has been awhile......

My dad died last summer and it was very hard for me to get through that. I not

only had to deal with his death, but take care of my mom. It was selling two

houses, one near me and one in Florida and then buying a condo and redecorating.

It was a LLLLOOONNNG haul.

A couple of weeks back, I was doing well until I had an accident in my

backyard SPA. It supposed to be an Rand R place, welllllll, not exactly this

time. I had slipped ( the lights weren't working) and fell backwards. I waa

covered in bruises like you have never seen and I hit my head on the wall of the

SPA. I was knocked out unconscious and my husband heard the splash and came out,

he was ten feet away,,,,, thank God. He pulled me and I didn't budge and I went

uder water as he pulled, still didn't budge, then he pulled m out of the water

and tried to wake me up and finally I came too. All I said was I was extremely

tired and he helped me get into bed. In the middle of the night, I woke up and I

was pretty lost, but since it was dark, I figured I was dreaming and went back

to sleep.

The next day, i said to my husband that my coagulation was off and I would go

to the hospital to have it checked, It seemed pretty high even after taking

vitamin K. So, when I saw the emerge doc and told he ''by the way'' I hit my

head on the SPA and what had happened. She said she would do a CT Scan of my

head, well, this is where your world changes in 30 seconds!! She told me I had a

hemmorraghe in my brain, on my brain stem, not a place you would like. I was to

have surgery, sent to a trauma center and no more scans. Well, being in this

domaine, I told her wait a second!!! I decided to go to a hospital that I knew

and that would take a second look and come up maybe with another idea. I ended

upgetting 4 plasmas, to meds and 40 mgs of vitamin K and stop my coumadin. WOw,

surgery was still staring me in the face and I was in the ICU for two weeks. I

can't tell you how terrified I was. Don't want to go through that again.... I am

still coming out of it and I have to have another scan and an MRI and we hope

all of it has resorbed. In the meantime I am on a double edge sword mean , no

coumadin since the don't want my brain to bleed and start coumadin when it

stopped bleeding to make sure I don't get a clot in my lung.

I still answer to may and it is always a pleasure to help others.....

Take care,

e

November 28, 2010

hi kathryne

so sorry to hear of your trouble. i so hope you feel better soon.

blessings

monique

November 30, 2010

e, it's always so good to see your name on a post. I think you were one

of the originals as I was, and I remember well all that you went through and how

much you always helped everyone in spite of that. I am so sorry you have gone

through such a difficult time. You still seem to have that instinct to push for

answers when you know something doesn't sound right. Good for you! Please let

us know how things go and I wish you a complete recovery from this accident.

Take care,

rheumatic hello