Re: [MDS]

[Guest guest]

Can you bring in his karyotype?? Do you need me to send you our brochure to

help this person's ignorance!!??!! Oh what problems you are having. Could your

geneticist send something? Could you show them the IMDSA website?? Just some

random thoughts.

Please email me privately withyour address so I could send you the brochures to

" enlighten " these people that don't understand that MDS does exist.

Regards,

Irene

IMDSA Membership Chairperson and mom to Nat 12 MDS, and the unruly gang

I think I remember reading somewhere or hearing about it on this chat

board, that MDS children have an average IQ score that is 20 points

higher than DS children. Is that true? Can anyone direct me to a

site or book for research proof? I'm supposed to be meeting with the

assistant principal at 's school (after a frustrated phone

call to the board of education superintendent yesterday afternoon).

The Assistant Superintendent is also telling me (as did the special

ed lead teacher) that 's IQ is too high for DS and I keep

telling them, " it's MDS " but that seems to escape them or something.

So if I can meet the assistant principal with some

research/proof/ hard evidence that can have MDS and a higher

IQ and still need assistance in the classroom, it would be better

than just saying, " well, the people on imdsa said... or I think I

read it somewhere... "

Meanwhile, 's neuropsychologist who did his testing (which the

school is telling me is insufficient) is going to the school tomorrow

and has promised she will address my sons's case with the school

psychologist to " straighten this mess out "

Jennie

[Guest guest]

Jennie -

Most IQ tests especially those done at an early age are unreliable. I

would look up more on IQ testing and how the test was done before I put any

stock in what they are saying. They can not argue he has MDS (or some DS

cells) as it is in his blood. What they are arguing is getting him help..

's kindergarten teacher kept telling me that she could teach so

much more if she was one on one with and not trying to teach the

other 20 children in the classroom at the same time. will have an

aide for first grade we put it in her IEP. But I really regret not getting

her an aide for Kindergarten.

Darlene - mom to (9) and (7)

>

> Can you bring in his karyotype?? Do you need me to send you our brochure

> to help this person's ignorance!!??!! Oh what problems you are having. Could

> your geneticist send something? Could you show them the IMDSA website?? Just

> some random thoughts.

>

> Please email me privately withyour address so I could send you the

> brochures to " enlighten " these people that don't understand that MDS does

> exist.

>

> Regards,

> Irene

> IMDSA Membership Chairperson and mom to Nat 12 MDS, and the unruly gang

>

>

>

>

> I think I remember reading somewhere or hearing about it on this chat

> board, that MDS children have an average IQ score that is 20 points

> higher than DS children. Is that true? Can anyone direct me to a

> site or book for research proof? I'm supposed to be meeting with the

> assistant principal at 's school (after a frustrated phone

> call to the board of education superintendent yesterday afternoon).

> The Assistant Superintendent is also telling me (as did the special

> ed lead teacher) that 's IQ is too high for DS and I keep

> telling them, " it's MDS " but that seems to escape them or something.

> So if I can meet the assistant principal with some

> research/proof/ hard evidence that can have MDS and a higher

> IQ and still need assistance in the classroom, it would be better

> than just saying, " well, the people on imdsa said... or I think I

> read it somewhere... "

>

> Meanwhile, 's neuropsychologist who did his testing (which the

> school is telling me is insufficient) is going to the school tomorrow

> and has promised she will address my sons's case with the school

> psychologist to " straighten this mess out "

>

> Jennie

>

>

[Guest guest]

I was due on Wednesday (16th) We have an appointment to be induced on Tuesday

(22nd) I was hoping to go late, the girls have their dance recital this

weekend. If I make it until Sunday at 5 pm I'll be in the clear. = )

Thanks for the info, and don't worry, I'll enjoy my 3 months off.

Bobbie

Re:

Hi Bobbie

Enjoy your maternity leave while you can!

Go to: http://health.groups.yahoo.com/group/MosaicDS/

Then, at the top, under your screen name where it says " Welcome " you will see

a link that says " My Account " Click that and there is where you can change your

email for the group.

When is the baby due to arrive?

Kristy

Bobbie Mayfield wrote:

Good Morning Kristy:

Today is my last day of work, I finally get to start my maternity leave. I was

wondering how I go about changing the email address that these emails are sent

to.

Thanks!

Bobbie Mayfield

[Guest guest]

Isn't that funny. Mom's tend to be so much into planning that we try our best to

schedule our deliveries so that we can work up until the end! I think most of us

are the same way. I will cross my fingers so you can get the dance recital done

before baby arrives!

When you get the chance, please email us all to let us know about the new

baby!

Kristy

Bobbie Mayfield wrote:

I was due on Wednesday (16th) We have an appointment to be induced on

Tuesday (22nd) I was hoping to go late, the girls have their dance recital this

weekend. If I make it until Sunday at 5 pm I'll be in the clear. = )

Thanks for the info, and don't worry, I'll enjoy my 3 months off.

Bobbie

Re:

Hi Bobbie

Enjoy your maternity leave while you can!

Go to: http://health.groups.yahoo.com/group/MosaicDS/

Then, at the top, under your screen name where it says " Welcome " you will see a

link that says " My Account " Click that and there is where you can change your

email for the group.

When is the baby due to arrive?

Kristy

Bobbie Mayfield wrote:

Good Morning Kristy:

Today is my last day of work, I finally get to start my maternity leave. I was

wondering how I go about changing the email address that these emails are sent

to.

Thanks!

Bobbie Mayfield

[Guest guest]

Good Luck Bobbie. Enjoy the dance recital, your new addition and your maternity

leave.

Donna - Adam's gram

Kristy Colvin wrote:

Isn't that funny. Mom's tend to be so much into planning that we try

our best to schedule our deliveries so that we can work up until the end! I

think most of us are the same way. I will cross my fingers so you can get the

dance recital done before baby arrives!

When you get the chance, please email us all to let us know about the new baby!

Kristy

Bobbie Mayfield wrote:

I was due on Wednesday (16th) We have an appointment to be induced on Tuesday

(22nd) I was hoping to go late, the girls have their dance recital this weekend.

If I make it until Sunday at 5 pm I'll be in the clear. = )

Thanks for the info, and don't worry, I'll enjoy my 3 months off.

Bobbie

Re:

Hi Bobbie

Enjoy your maternity leave while you can!

Go to: http://health.groups.yahoo.com/group/MosaicDS/

Then, at the top, under your screen name where it says " Welcome " you will see a

link that says " My Account " Click that and there is where you can change your

email for the group.

When is the baby due to arrive?

Kristy

Bobbie Mayfield wrote:

Good Morning Kristy:

Today is my last day of work, I finally get to start my maternity leave. I was

wondering how I go about changing the email address that these emails are sent

to.

Thanks!

Bobbie Mayfield

[Guest guest]

Maureen,

I am so sorry for your loss.  What you need to do is the right

thing for you.  Everyone deals with their grief differently, but we

all need to do what helps us get through it.

That is awesome news about Andy!!! 

- mom to Ella(6) and Caden(4)mds

IMDSA Fundraising Chairperson

Quoting maureen ferris :

> I've been having trouble sending messages to this group lately so I 

> registered again with yahoo groups so hopefully I'm all set.

>

> I just wanted to tell everyone how proud I am of (who now 

> likes to be called Andy)!  He just finished third grade at our

> local  elementary school.  Halfway through the year, the Moderate

> Special  Needs teacher told me Andy didn't want to be pulled from

> the  classroom and would I be open to trying full inclusion.  He

> was  doing well and the Teacher was agreeable so, of course, I said

> yes.   

> And he did so well it's now in is IEP that he be full inclusion for 

> 4th Grade!  If he needs extra help in any area, he can still be 

> pulled for that but it's on an as needed basis.  This is what I 

> wanted for him but, honestly, wasn't sure it would happen in 

> elementary school.  Sometimes I just love being wrong!

>

> On a sad note, my husband passed away unexpectedly this past March.   

> Tyler, who's now 13, seems to be doing well but doesn't want to

> talk  about it.  It's seems to be hitting Andy now.  He told his

> Speech  Therapist yesterday that he just wants things to go back to

> the way  they're suppose to be.  Part of it could be I just got rid

> of the  bed, Steve's clothes and some furniture in the bedroom.  The

> EMTs  broke the bed but even if they hadn't, it's where he died and

> I  couldn't bring myself to sleep in it anyway.  Andy hates change

> and  maybe this is too soon to make changes but I really need a bed

> and a  friend came over with his truck so it was a chance to remove 

> everything at once.  I asked Andy to help me fix up my room a

> little  and he seemed to like that.  I just need to make the room

> look  different.  Maybe if he died somewhere else I'd feel

> differently.  I  just hate being in that room right now.  Maybe as

> we go along, I can  explain to Andy why I need to change it so he'll

> understand but I  don't want to throw too much at him all at once

> either.

>

> Well, that's it for now.

>

> Maureen, mother to Tyler, 13 and Andy, 9 (MDS)

>

>

[Guest guest]

Maureen - I am terribly sorry for your loss. Your family is in my prayers.

Donna - Adam's gram

maureen ferris wrote:

I've been having trouble sending messages to this group lately so I

registered again with yahoo groups so hopefully I'm all set.

I just wanted to tell everyone how proud I am of (who now likes to be

called Andy)! He just finished third grade at our local elementary school.

Halfway through the year, the Moderate Special Needs teacher told me Andy didn't

want to be pulled from the classroom and would I be open to trying full

inclusion. He was doing well and the Teacher was agreeable so, of course, I said

yes. And he did so well it's now in is IEP that he be full inclusion for 4th

Grade! If he needs extra help in any area, he can still be pulled for that but

it's on an as needed basis. This is what I wanted for him but, honestly, wasn't

sure it would happen in elementary school. Sometimes I just love being wrong!

On a sad note, my husband passed away unexpectedly this past March. Tyler, who's

now 13, seems to be doing well but doesn't want to talk about it. It's seems to

be hitting Andy now. He told his Speech Therapist yesterday that he just wants

things to go back to the way they're suppose to be. Part of it could be I just

got rid of the bed, Steve's clothes and some furniture in the bedroom. The EMTs

broke the bed but even if they hadn't, it's where he died and I couldn't bring

myself to sleep in it anyway. Andy hates change and maybe this is too soon to

make changes but I really need a bed and a friend came over with his truck so it

was a chance to remove everything at once. I asked Andy to help me fix up my

room a little and he seemed to like that. I just need to make the room look

different. Maybe if he died somewhere else I'd feel differently. I just hate

being in that room right now. Maybe as we go along, I can explain to Andy why I

need to change it so he'll understand but

I don't want to throw too much at him all at once either.

Well, that's it for now.

Maureen, mother to Tyler, 13 and Andy, 9 (MDS)

[Guest guest]

Maureen, I am so sorry for your loss, You are in my thoughts and prayers. I

am so proud of Andy!!! Much Love, Ross Mom to 10, 5 MDS, and

Kirk 4

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Hi Bobbie

Congratulations on your new baby! I know it is hard to go back to work.

Hopefully the transition wont be too bad for you.

If you just go to our main egroup site

http://health.groups.yahoo.com/group/MosaicDS/

you can scroll down to the bottom of the page and you will find " message

history " . There, you can click on each month and scan through the messages and

click the ones you want to read.

Welcome Back!

Kristy

Bobbie Mayfield wrote:

Good Morning All.

I have returned to work from my 3 month maternity leave. Wyatt was born

May 22 at 6:47 pm. He weighed 8 lbs 11 oz and was 20 inches long. He joins his

two sisters Shyanna, 11 and Shayla, 8.

It was a little hard leaving the kids this morning after spending all summer

with them, but school will start in a couple of weeks.

I have missed out on all the discussion. I tried to change my email address

before I left for the summer but it obviously didn't work, when I got back to

work, I had over 300 emails!! (Yikes)

Can anyone tell me how to find a summary of the discussion for the last 3 months

on the website?

Thanks!

Bobbie - Mom to Shyanna (11-mds) Shayla (8) and Wyatt (almost 3 months)

[Guest guest]

Somewhere in the midwest would be nice. Maybe Chicago or Madison would be

AWESOME! = )

Re:

Good Morning Bobbie

LOL No,I do not know where we will have it! However, if anyone is up for

suggestions on where to have it, we will be very happy to hear those

suggestions!

However, if you ask for it to be in your town, we will ask you to help

coordinate it! LOL

Kristy

Bobbie Mayfield wrote:

Good Morning Kristy:

I know this is thinking ahead, but we were wondering if you have an idea of

where next years conference will be.

Bobbie Mayfield, mom to Shyanna (11) Shayla (8), and Wyatt (4 mo)

[Guest guest]

Kristy -

I thought we were going keep it as a Bi-Annual Conference rather than an

Annual conference?

Darlene

>

> Good Morning Bobbie

>

> LOL No,I do not know where we will have it! However, if anyone is up for

> suggestions on where to have it, we will be very happy to hear those

> suggestions!

>

> However, if you ask for it to be in your town, we will ask you to help

> coordinate it! LOL

>

> Kristy

> Bobbie Mayfield <bmayfield@... <bmayfield%40fnbbarron.com>>

> wrote:

> Good Morning Kristy:

>

> I know this is thinking ahead, but we were wondering if you have an idea

> of where next years conference will be.

>

> Bobbie Mayfield, mom to Shyanna (11) Shayla (8), and Wyatt (4 mo)

>

>

[Guest guest]

Yes, it is biennial. We will have our next conference in 2009.

Kristy

Darlene Benoit wrote:

Kristy -

I thought we were going keep it as a Bi-Annual Conference rather than an

Annual conference?

Darlene

>

> Good Morning Bobbie

>

> LOL No,I do not know where we will have it! However, if anyone is up for

> suggestions on where to have it, we will be very happy to hear those

> suggestions!

>

> However, if you ask for it to be in your town, we will ask you to help

> coordinate it! LOL

>

> Kristy

> Bobbie Mayfield <bmayfield@... <bmayfield%40fnbbarron.com>>

> wrote:

> Good Morning Kristy:

>

> I know this is thinking ahead, but we were wondering if you have an idea

> of where next years conference will be.

>

> Bobbie Mayfield, mom to Shyanna (11) Shayla (8), and Wyatt (4 mo)

>

>

[Guest guest]

Is it cervical instability?

Charlotte

Good Morning All:

I was wondering what the medical term is for the problem with the neck.

(vertebrae out or missing or too close together?) I can't remember for the life

of me.

Bobbie, mom to Shyanna (11) Shayla (8) and Wyatt (6 mo)

[Guest guest]

It is Atlantoaxial Instability or AAI ...........

-------------- Original message --------------

Good Morning All:

I was wondering what the medical term is for the problem with the neck.

(vertebrae out or missing or too close together?) I can't remember for the life

of me.

Bobbie, mom to Shyanna (11) Shayla (8) and Wyatt (6 mo)

[Guest guest]

Possible, for some reason I thought it started with an " A " .

I guess my next question, which I should've just included it in my last post, is

this:

Do any of your children see a chiropractor?

I had Shyanna's conferences a week ago today. Her special ed teacher (this is

her first year with Shyanna) asked me if she's ever seen a chiropractor. I told

her no. She said that she noticed that Shyanna limps a little bit and thinks

her legs might be different lengths. This morning I had her lay down, like the

chiropractor has me do when I see him, and sure enough, her legs are different

lengths. I guess the reason I never noticed this is because Shyanna always

walks beside me, not in front of me.

My first thought before seeing the chriopractor was to find out the correct

medical term for the neck problem. She has x-rays done every other year I do

believe and her doctor hasn't said it's a big concern but it might be different

from a chiropractors standpoint.

Any feedback would be greatly appreciated.

Thanks!

Bobbie

Good Morning All:

I was wondering what the medical term is for the problem with the neck.

(vertebrae out or missing or too close together?) I can't remember for the life

of me.

Bobbie, mom to Shyanna (11) Shayla (8) and Wyatt (6 mo)