Re: Welcome New Member Sophia

[Guest guest]

Sophia,

Welcome to our group. Its sound like you and Little Miss O. have had

quite an eventful and emotional past few days. I think that you will find in

our group a constant reassurance that you and she are not alone.

My daughter, Maggie, is now 3 1/2 and doing very well in all areas with

only speech as a significant challenge, so I have to think back a few years

to remember her development at that age. I'm pretty sure that is the age

that she first started to pull up and stand alone. She took her first steps

at about 18 mos. and was walking independently at 20 mos. I think that the

" normal " range for walking up to 16 or 18 mos., so Olivia may be having a

little delay, but not much. My guess is that her muscle tone is probably the

reason. You mentioned that she is a natural gymnist which is a likely

indicator that her muscle tone is lower than " normal. "

If you haven't already done so, probably your first step is to contact

you local early intervention agency. In N.C. where we live, this is a part

of our local Mental Health/Substance Abuse/Developmental Disabilities

agency. Your pediatrician should be able to make a referral. Early

Intervention is a free service offered in all 50 states which provides

speech, physical, and occupational therapy to name a few things. I think

they also offer family therapy if your interested. All of this can

definitely by overwhelming, but it's probably the most important thing you

can do for Olivia at this point besides just loving her and treating her the

same way you've always done. She hasn't changed because of this diagnosis!

(Sorry if I sound preachy or tell you things you already know.)

Another important thing to remember is to try to relax as much as

possible and take everything one day at a time. Also, you know your daughter

better than any one else, even the " experts " that you will surely come in

contact with as you get services for her. Don't let them undermine you as a

parent. And you are always free to say " no " to services. I think that this

is important because many times, parents get really overwhelmed with

services and forget that they don't have to do everything that's recommended

right away or ever if you don't think it's needed. I know a Mom who had 11

home visits in 1 week. Maybe for some people, that's ok, but for others,

it's overwhelming and a little bit crazy. (I'm not trying to scare you, but

I've heard horror stories. It probably will not be so for you.)

I wish you and Olivia the best with everything. I think you will find

your present and future with Olivia even more fulfilling and rewarding than

before.

Carla Duffy

MO Maggie 31/2 (mds)

>

>Reply-To: MosaicDSonelist

>To: " MDS Group " <MosaicDSonelist>

>Subject: Welcome New Member Sophia

>Date: Mon, 28 Feb 2000 06:58:32 -0500

>

>Good morning everyone and Happy Monday too!

>

>I have the pleasure of introducing our newest member this morning, Sophia,

>and her precious little Olivia! Private (mailto:OLIOPOP@...) and group

>greetings are welcome, and you'll find Sophia's introduction below!

>

>Welcome to the group Sophia! It's wonderful having you here. Please feel

>free to ask or share away.....this is a wonderful group of supportive

>families, who will make you feel right at home!

>

>Bree

>Mommy to (7 mos., mds) and 3 siblings

>MosaicDS Listowner

>National MDS List Facilitator

>http://www.mosaicdownsyndrome.com

>http://www.insidetheweb.com/mbs.cgi/mb778401 (MDS Message Board)

>*****************************************************************

>Hi. I'm a single mom of a 15 month old baby girl, Olivia, or Little Miss O

>as I like to call her. This last Friday she was diagnosed as having MDS.

>A

>couple of months ago a mom at her day care center asked me if she had

>Downs.

>I got defensive and immediately said no. But it stuck. Little Miss O's

>pediatrician never mentioned anything about DS much less MDS, and he didn't

>order the blood testing until I had asked him if he thought Olivia had

>Downs

>(he didn't want to admit to or deny anything). Olivia is incrediblely

>flexible (a born gymnast it seems -- she loves to be flipped around, too),

>very headstrong, fiesty, independent...a finicky eater (she doesn't seem to

>like to eat at all!). She's just learned how to roll over, stand up by

>herself (she's not walking by herself yet), blow kisses, and bite (so,

>that's

>not the good thing, but I think it's part of the teething process).

>

>I told her dad about her diagnosis Friday evening (big move! We've been

>separated since Olivia was 2 months -- our divorce is pending). I'm not

>sure

>how he took it as I only received a blank stare. Shock maybe.

>

>It's still too new. I feel stress, anxiety, fear...what's going to happen?

>What do I or should I expect? Is what she's doing now normal for an infant

>her age or is it parts of MDS? I did quite a bit of research on the net

>today, hence the reason why I'm writing to you all today. It was extremely

>helpful, but somewhat overwhelming. Too much at once? Maybe. I do feel

>alone, but I know that I'm not. Thank you, and God bless.

>

>- Sophia

>

>

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[Guest guest]

Welcome Sophia,

My name is Luanne and I have a 3 1/2 yr old daughter with mds. It can be a

lonely feeling going through this, that is what makes this such a nice

group. I found out about my daughter when she was a week old. We have

treated her just like our other kids and she is doing quite well. Her moter

skills are good, in fine motor she is not delayed at all, and very little in

gross motor. She hit all those milestones right on target. Her speech is

delayed although she is talking more all the time. She has a very definate

" girl " personality. When she gets home from pre-school she immediately

takes off her clothes in search of a dress to wear, we tease that we should

have named her Imelda as she loves shoes, especially pretty ones. She is a

very " normal " little girl. I do however believe she will have some delays

in school as her cognitive skills are a bit behind. Socially she is fine

and fits in with the other kids so far anyway. The best advise I got was to

let her be a child first, then a child with mds. Not neglecting to get the

services that she needs, but to let her be a kid too. Our biggest challenge

at the present time is potty training, she just hasn't figured out what she

is supposed to do once she is sitting on the pot. So we are taking it slow

and not pushing her. Any suggestions out there anyone? Take care and again

welcome.

Luanne

mom to Mahrya 3 1/2 mds, Ben 4, Alan 11, Sandy 13, Steve 15, Dan 17

______________________________________________________

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[Guest guest]

Welcome Sophia and all the other new members. You'll find wonderfully

helpful and supportive people here, and you'll begin to feel that you're

really not alone in this.

Luanne,

We started potty training (6 1/2) before she was three - actually

daycare started. This past Friday was the first day ever that she went all

day at school until bedtime in dry underwear. (Sorry, I know this is not

encouraging.) Friday was also the first time she has ever asked to use the

potty during the day. She's been dry at school for awhile because they have

her on a fairly strict schedule. At home things are more relaxed, so she's

in pullups most the time. I can put her on the potty, she'll go, and then 10

minutes later wet again. So even though can be dry and knows what to

do on the potty - I don't think her brain is ready to put it all together

yet. She just can't read her body's signals. So we will probably (after we

get some other behavior issues resolved) put her on a strict potty schedule

at home in hopes of her staying dry. But I believe that kids just aren't

trained until they are truly ready not matter what we do. will get

there some day, and I try not to worry about it. So just keep putting her on

the potty and watch for those little steps toward success. Good luck.

Sue (Norah 11 yrs, 6 1/2 MDS & ADD)

[Guest guest]

In a message dated 2/28/00 6:53:50 AM Eastern Standard Time,

njboxers@... writes:

<< t's still too new. I feel stress, anxiety, fear...what's going to happen?

What do I or should I expect? >>

I'd like to welcome all the newest members to the group.

Sophia:

We have all experienced what you are going through. Since you just found out

this whole experience is still too new. Give yourself time to digest

everything you've heard and then realize that Olivia is still the same sweet

baby she was before she was given the diagnosis of mds.

One of the hardest parts of dealing with this diagnosis is the unknown. It's

almost impossible to predict what the future will hold for our children, but

then that is the case with any child, mds or not. Living with 's mds

has taught me not to look too far into the future, but to stay in the present

and take each day as it comes.

Expect great things from Olivia, give her the help she may need to achieve

them and love her no matter what. She won't disappoint you.

ann (Mom to mds, 6 yrs old, who has decided she hates tap dance

but loves ballet)

[Guest guest]

Sofia...

Welcome to you and 'Miss O' =)

I have 4 children and a stepson, my second child, , was Diagnosed with

MDS(50%) when he was 16 months old. He also has a bowel disease and had to

have 3 operations before he was 6 months old, and between all the surgeries,

all the pediatric appointments and everything else... no one ever suspected

Downs... except me and my husband of course. " down Syndrome " came out our

months several times. I think many of us with MDS children have similar

experiences with late diagnoses. Good for you though for following your

instincts and asking and having her tested!

My son is 7 now, and in the 1st grade. Unfortunately there are no set rules

with whats 'normal' or not when it comes to this... every child is different,

affected differently, can depend on what percentage of their cells have the

trisomy 21, etc. For my son, His speech was very delayed, Didn't really

start talking until he was about 5 yrs old, but his motor skills have always

been great, very little delays there. He also really struggles in school,

Doesn't know all his alphabet yet, can't write his name yet.. etc. He's

improving, just very slowly right now. And then i know a lady who has an 8

yr old son with " full " downs, and her son reads books and writes etc... I'd

probably beat myself if i tried to compare my son to anyone else! =)

Lots of great people with lots of great info here on this website and email

list! Hope its of help to you!

Angel

mom of ,7, 50%MDS

[Guest guest]

Welcome, Sophia, to this wonderful group. My name is Nathalie, and I have 3

children. My 2nd child, Naomi, was diagnosed with MDS a few weeks after

birth. She will be 3 on March 22. She is doing very well, she walks, runs,

climbs, tries to keep up with her 5 yr old brother, says many words now,

starting to put 2 words together. We love her to pieces! Look forward to

getting to know you and " little Miss O " better.

Nathalie, mommy of , Naomi (mds), and Anne

[Guest guest]

Hi Sophia,

Welcome to the list. I am a single Mom also. I have three kids, a son Nicky

12, daughters le 11, and 5yrs old. was diagnosed

at 2 months old with MDS. I had an amnio which had come back negative. I

have to say that having her helped me get through my husband leaving (I was 6

months pregnant with her when he left). She really helped me get through

everything. I had so much to learn about her and taking care of her and the

other kids also helped. It is tough being a single Mom and raising her is a

challenge but it is so worth it.

Do you have Olivia in early intervention?

Take care,

Jeanne

[Guest guest]

Hi Luanne,

was 4 almost 5 when she was potty trained. I had been putting only

pullups on her for a while. I also bought training pants. It took a while

but my sitter also worked with her. When she was on Christmas break I sent

her to the sitters in the underwear. It took that week to fully train her.

Is Mahrya dry for long periods of time? That is really the key. Good luck.

Jeanne