Re: Hi everyone

November 26, 2002

,

Congrads on your upcoming wedding. I've been married for 3 yrs and I

remember the hardwork it was to plan one. Haha.

Sounds like little is doing great.

I know what you mean about the ignorance. I think everyone on here

does. Some people just don't understand.

Take care,

a

November 27, 2002

-

I completely understand the frustration of everyone assuming that your child

will be different than any other child - but your relatives will stop this

assumption after 2 years or so. So glad is doing well. I think the

dateline special is on this Sunday night as is " The year without a Santa

Claus " - one of them will be taped ;-)

Darlene

hi everyone

Hello Everyone

It has been a long time since I have posted anything, but better

late than never. Well, is doing well she is getting ready to

crawl (i think) she just needs to figure out the hand/foot

coordination. We went and seen the pediatric cardiologist a

couple of weeks ago, just to follow up and make sure that

everything is ok, and it was thank God! I was just at the dr. the

other day and asked what to put on 's ecezma and the dr.

reccommended hydrocortizone 1%, it is working pretty good and

is actually clearing it up faster than I expected. I also use

Eucerin lotion which works well. I am also busy with trying to

plan my wedding, I am getting married on March 8 to 's

Daddy- !

We are getting excited for Thanksgiving. I am just dreading

seeing everyone because people always ask how is

doing, like they expect her to be doing differently than any other

child. It 's very annoying but it's probably just ignorance. When is

the dateline special running? I forget! Well, I wish everyone a

Safe and Happy Thanksgiving! God Bless

Sincerely,

Mommy to /8mo MDS

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

November 27, 2002

,

Congratulations on your upcomming wedding! I am so

excited for you!

I really think that people mean well when they ask

about . As you say, they are ignorant when it

comes to MDS and they just don't know what to say. So,

when they ask you how she is doing....tell them! Let

them know how excited you are that she is about to

crawl! Let them know about all the great things she is

doing! And tell them she is doing just fine. If you

explain MDS to them they will be more informed and

they wont feel so out of place when they see you.

I am so glad to hear that the doctor's visit went

well. I am sure that was a big relief for you!

Have a great Thanksgiving!

Kristy

--- jenniferbolinger

wrote:

<HR>

<tt>

Hello Everyone

It has been a long time since I have posted anything,

but better

late than never. & nbsp; Well, is doing well she

is getting ready to

crawl (i think) she just needs to figure out the

hand/foot

coordination. & nbsp; We went and seen the pediatric

cardiologist a

couple of weeks ago, just to follow up and make sure

that

everything is ok, and it was thank God! & nbsp; I was

just at the dr. the

other day and asked what to put on 's ecezma

and the dr.

reccommended hydrocortizone 1%, it is working pretty

good and

is actually clearing it up faster than I

expected. & nbsp; I also use

Eucerin lotion which works well. I am also busy with

trying to

plan my wedding, I am getting married on March 8 to

's

Daddy- !

We are getting excited for Thanksgiving. & nbsp; I am

just dreading

seeing everyone because people always ask how

is

doing, like they expect her to be doing differently

than any other

child. & nbsp; It 's very annoying but it's probably

just ignorance. & nbsp; When is

the dateline special running? I forget! Well, I wish

everyone a

Safe and Happy Thanksgiving! God Bless

Sincerely,

& nbsp; & nbsp; Mommy to /8mo MDS

</tt>

<td align=center><font size= " -1 "

color=#003399>

November 27, 2002

Oh Boy! I love " A year without Santa Clause " ! LOL I

will have to tape that one too!

Kristy

--- Darlene Benoit wrote:

<HR>

<tt>

-

I completely understand the frustration of everyone

assuming that your child

will be different than any other child - but your

relatives will stop this

assumption after 2 years or so. & nbsp; So glad

is doing well. & nbsp; I think the

dateline special is on this Sunday night as is

& quot;The year without a Santa

Claus & quot; & nbsp; - one of them will be taped ;-)

Darlene

hi everyone

Hello Everyone

It has been a long time since I have posted anything,

but better

late than never. & nbsp; Well, is doing well she

is getting ready to

crawl (i think) she just needs to figure out the

hand/foot

coordination. & nbsp; We went and seen the pediatric

cardiologist a

couple of weeks ago, just to follow up and make sure

that

everything is ok, and it was thank God! & nbsp; I was

just at the dr. the

other day and asked what to put on 's ecezma

and the dr.

reccommended hydrocortizone 1%, it is working pretty

good and

is actually clearing it up faster than I

expected. & nbsp; I also use

Eucerin lotion which works well. I am also busy with

trying to

plan my wedding, I am getting married on March 8 to

's

Daddy- !

We are getting excited for Thanksgiving. & nbsp; I am

just dreading

seeing everyone because people always ask how

is

doing, like they expect her to be doing differently

than any other

child. & nbsp; It 's very annoying but it's probably

just ignorance. & nbsp; When is

the dateline special running? I forget! Well, I wish

everyone a

Safe and Happy Thanksgiving! God Bless

Sincerely,

& nbsp; & nbsp; Mommy to /8mo MDS

Won't you please consider adding your personal story

on the MDS website

today? & nbsp; <a

href= " http://www.mosaicdownsyndrome.com " >http://www.mosaicdownsyndrome.com</a><B\

R>

*************************************************

MDS MESSAGE BOARD - <a

href= " http://www.mosaicdownsyndrome.com/discus " >http://www.mosaicdownsyndrome.co\

m/discus</a>

*************************************************

September 30, 2003

Jeanne,

Glad you found us!! Hope your brother and sister-in-law do decide to join

us... they aren't alone!!!!

Angel

Mom to

Tyler 11, 10 MDS/Hirschsprung's

, 8, Jaeda 7 and Shayne 15 mos

October 1, 2003

Welcome to our group. We will be glad to help you in anyway we can. MDS

children are a great gift as you will learn as the years go on. Dave

Hi everyone

Hi,

My name is Jeanne. I live in Tennessee right now. My Nephew has

just been dx with MDS. My brother and sister in law started getting

worried because he wasn't speaking yet. He also made very little eye

contact. They first thought it was autism but later through testing

found that it was MDS.

I wanted to join this group not so much for support but more as a

resource. I am also hoping that now that I have found you I will be

able to get my brother and his wife to join. They are really feeling

alone right now and could use the support.

They live in Buffalo NY so if any of you are from there I bet they

would love to get together with you. My private email is

TRjeanne@....

I have to go for now so I can email my brother about this wonderful

club.

Talk to you again real soon.

Love,

Jeanne

October 2, 2003

Greetings Jeanne!

I am Barb Martz from Western Pennsylvania and I am so glad that you found

this group for your brother and his wife and I hope they check it out. We have

all been where they are at now in some form or another and we know how it feels

to be able to get so little information about MDS, even from the doctors. I

know that the most helpful things I have learned for my son, I have learned here

from other parents and people affected in some way with Mosaic Down syndrome. I

am not sure how you ran across us, but your dear ones may want to start just as

I did by going to www.mosaicdownsyndrome.com and click on the personal stories

link on the left just to read some stories about others who are going through

and have been thorough what they are experiencing now. (My son's story which was

written several years ago is under the surname of Martz) They can join this

group there too of course. Things will get so much better for them as they

learn how wonderfully their child can do with a little extra help. My little

guy is about to turn three on 11/-01 and he is saying a handful of words, is

signing a handful of words, but gets new words every single week, if not every

day. He said his first sentence a couple of weeks ago. " You did it! " He has

heard us say this in encouragement to him so many times, and so now he is

encouraging himself! LOL Tonight he said, " Ball " for the first time. I wonder

how many times we have said it to him...? Doesn't matter now, he has it! The

accomplishments are so incredible, and just thrilling! Hope to be hearing more

about your nephew and his family!

Blessings,

Barb Martz

Mom to Jonas (MDS) 2.10 years, & 8

From: Jeanne

To: MosaicDS

Sent: Tuesday, September 30, 2003 5:41 PM

Subject: Hi everyone

Hi,

My name is Jeanne. I live in Tennessee right now. My Nephew has

just been dx with MDS. My brother and sister in law started getting

worried because he wasn't speaking yet. He also made very little eye

contact. They first thought it was autism but later through testing

found that it was MDS.

I wanted to join this group not so much for support but more as a

resource. I am also hoping that now that I have found you I will be

able to get my brother and his wife to join. They are really feeling

alone right now and could use the support.

They live in Buffalo NY so if any of you are from there I bet they

would love to get together with you. My private email is

TRjeanne@....

I have to go for now so I can email my brother about this wonderful

club.

Talk to you again real soon.

Love,

Jeanne

Won't you please consider adding your personal story on the MDS website today?

http://www.mosaicdownsyndrome.com

*************************************************

Become a member of IMDSA at http://www.imdsa.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

October 24, 2003

No, its not Down Syndrome. Down's is a THIRD copy of the 21st chromosome,

and mosaic means some of the cells have the extra chromosome, and some are

normal 2 pair cells. It probably is called " mono " something, although I don't

recall the name of it offhand. Apparently your nephew has a " deletion " of a

chromosome, where Down's is too many chromosomes! Genetics is all

so fascinating!! Now I have to look online to satisfy my curiosity about the

single 21 chromosome!

Angel

Mom to 10 MDS/Hirschsprung's Disease

Lance 15, Tyler 11, 8

Jaeda 7 and Shayne 1

October 24, 2003

Monosomy 21... (been reading!) Downs is Trisomy 21!

chromosome 21 monosomy syndrome

October 24, 2003

Jeanne,

If a person has one cell on the 21st chromosome, it

wouldnt by a form of Down syndrome. Down syndrome has

3 cells on the 21st chromosome. A person without

chromosomal defects have sets of 2 in each chromosome.

I am not sure what your nephew has, but I would

suggest you go to Genetic Alliance at

www.geneticalliance.com (or org, I cant remember) and

see if you can find information there. They are a

great group that we are affilated with and they have a

huge data base full of genetic disorders and where to

get help.

I hope this helps you!

Kristy

--- Jeanne wrote:

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

I know I haven't been posting at all but...

I have been talking to my brother and he says that his

son doesn't

have Mosaic Down Syndrome. What he says he has is " an

extremely rare

form of chromosome 21 " . He says that there are only a

few recorded

cases of this. He has one chromosome on 21. That is

MDS right? Are

they in denial? Is there something called

mono....something or

other? Sorry I don't know the exact name. My brother

told me he

thought it was a form of Down Syndrome but my sister

in law flat out

says NO NOT Down Syndrome.

Jeanne

November 10, 2003

Jeanne,

I do not know what this one chromosome 21 is, but that would not be DS.

Three 21st chromosomes (one extra over the normal pair of two) is what trisomy

21 or Down syndrome is. I will be interested to hear if anyone else knows what a

missing chromosome 21 is called. I never heard of it before. Does their son

have characteristics that are similar to DS? Perhaps I should know this, but I

am a bit fuzzy on detail just now.

Best of luck in your search!

Barb Martz

Mom to Jonas 3 (MDS) & 8

Hi everyone

I know I haven't been posting at all but...

I have been talking to my brother and he says that his son doesn't

have Mosaic Down Syndrome. What he says he has is " an extremely rare

form of chromosome 21 " . He says that there are only a few recorded

cases of this. He has one chromosome on 21. That is MDS right? Are

they in denial? Is there something called mono....something or

other? Sorry I don't know the exact name. My brother told me he

thought it was a form of Down Syndrome but my sister in law flat out

says NO NOT Down Syndrome.

Jeanne

Won't you please consider adding your personal story on the MDS website today?

http://www.mosaicdownsyndrome.com

*************************************************

Become a member of IMDSA at http://www.imdsa.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

July 23, 2007

Bobby,

I am so very glad you got some sleep last night. I take a Unisom occasionally

when I feel I have had enough of sleepless nights.

I like the blog on Liverland. I usually get scared so maybe I am not that deep

into liverland. Then again, sometimes I just stare off into space and I possibly

get there at that time. Sounds cool. Nothing worries you at all.

Anyway, So very glad to hear you are resting.

Take care of you and Sharon.

God Bless,

Tricia

Bob Aragon wrote:

Yes. Tricia. I have a constant stream of strange voices songs and

conversations, and I can't quiet it down for anything. Last night I took an

ativan at bedtime, and slept more than I have in a month. But today I have been

in liverland all day.

http://pixelrn.blog.com/725747/

Re: Hi everyone

Bobby,

I am so sorry to hear about the pain you are in. I think that the transplant

eval is the way to go. All you need to do is have the Hepatologist refer you and

the team will do the rest. It sounds like you are getting close to being in need

of that. If the MRA was such a poor quality, why didn't they do another? That

would only make sense. Did they give you ANYTHING for pain???? The docs can be a

real pain themselves about this issue. I know that some medication affects the

liver, but what about our quality of life? Do they not care about that?? I am

going to talk to my GI doc and Hepatologist about that and see if I can get

something mild. It gets so bad sometimes I can't catch my breath. So I really

understand what you are going through.

I also understand about the HE. I still sometimes will start to say something

and I will forget the word I want. I know it, I just can't get it from my brain

to my mouth. AND this is with the lactalose and xifaxin.

What I am trying to say here is that I understand. If you need to talk, let me

know. I can give you my phone number and we can talk on the phone, if you would

like.

How is Sharon doing? It was so great to get the email from her about you.

Please take care of yourself and Sharon. You are my rocks and I need you to talk

to.

Also, thanks for the info on celiac block. Scary stuff. But sometimes I wonder

if it would not be worth it to stop the pain.

Prayers are coming at ya.

God Bless,

Tricia

Bob Aragon <robwalkingeagle@ yahoo.com> wrote:

Hi, support group. I was discharged yesterday after an all day wait for the

doctors to round. They came in, said I did not have bowel ischemia, and the the

bubbles had pretty much dissipated. I am suppose to follow up with my PC,

hepatology, and get a follow up CT scan in 3 weeks. I have to make an

appointment with pulmonology for a hepatopulmonary syndrome test and shunt

study. The bad news is that the pain got MUCH worse when I got home, and my

encephalopathy is bad, like like was in December. They said I could take 15 ml

of lactulose per day, with a bolus if needed, but so far it is not enough. I had

the 'panicky

lost in a strange neighborhood' feeling yesterday, and it really upset me, but

after I did my business, I was better. I do not believe that lactulose caused

this. I believe it is related to portal hypertension. I'm going to ask my

hepatologist for a transplant evaluation, but I am skeptical about how that will

go. Even if lactulose caused this, and they do not have another way for me to be

mentally comfortable, and this pain is so intolerable, that should indicate me

for at least an evaluation. I hope.

https://www. aasld.org/ eweb/docs/ practiceguidelin es/evalu_ patient_livertra

nsplantation. pdf

http://www.ncbi. nlm.nih.gov/ sites/entrez? cmd=Retrieve & db=pubmed &

dopt=Abstract & list_uids= 17004262

____________ _________ _________ _________ _________ _________ _

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play

Sims Stories at Yahoo! Games.

http://sims. yahoo.com/

July 23, 2007

Great idea MaC. Bob and I could collaborate on it. Does anyone else have this

same problem? We could call it Conversations with Me and Me and Me and Me. HA

HA HA

God Bless

Tricia

MaC wrote:

That was powerful and spot on! Insoon was in Liverland.

Hey,

You should write these down, the strange voices/songs etc. That's how books

begin. I can see the title... " Conversations with Me "

MaC

Bob Aragon wrote: Yes. Tricia. I have a constant

stream of strange voices songs and conversations, and I can't quiet it down for

anything. Last night I took an ativan at bedtime, and slept more than I have in

a month. But today I have been in liverland all day.

http://pixelrn.blog.com/725747/

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

Luggage? GPS? Comic books?

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