and Sydney

[Guest guest]

and Sydney, How nice to know we have such close neighbors! Perhaps

one day our girls could meet!

I am glad to hear Sydney is doing well and recovering from the Leukemia.

That must have been very difficult to get through! 's ASD repair went

smoothly, and Children's Hospital were wonderful with her care. It is so

wonderful to have such a world renowned hospital at our back door. People travel

from

all over the world to have their heart surgeries there. We are lucky to have

them so close. Her Surgeon was Dr. Mayer. He was wonderful. had her

surgery on a Monday morning and came home on Friday afternoon. And that was

with a complication of fluid building up around her heart thrown in!! She would

of been home 1 or 2 days earlier! Good Luck with her surgery this summer and

if you have any questions I'd be happy to try and answer them. Oh, and sorry

it took me so long to reply to your response, I am always 500 emails behind!

and age 2 1/2 MDS

In a message dated 1/29/2008 6:02:30 P.M. Eastern Standard Time,

feelgood.bewell@... writes:

Hi . I live on the north shor of Massachusetts. I too had

all the tests during pregnancy and they came out normal. Sydney was

born on March 17 2003 at Brigham and Womens Hospital in Boston. She

happened to be the best feeder in the nursery!..however, the

pediatrician told me she had " bad news " that she was showing " some "

signs of Down syndrome. I was like " some? " how can you have

some?..this was 6 hours after birth. The gentics team came in and

said..oh we are talking Mosaicism..again.said..oh we are talking Mos

person came over and said..oh she has that..well that is a whole

differetn thing and she left! Ok..noiw feeling like we were from the

planet Quiggyball, I coul dnot wait to get home and start researching

and stimulating that little brain.

She too has an ASD/Mitral valve tear..but is completely

asympmtomatic. Good thing..cuz..asympmtomatic. Good thing..cuz..<WBR>she

Sept. of 2005 and instead was diagnosed with Leukemia..which we have

justed fininshed the treatment for with good results back in October

of " 07.

She will need surgery, but we have to wait for the chemo to work out

of her body a bit more and make sure her immunity is strong. She too

will ahv eher surgery at Children's..will ahv eher surgery at Children

surgeon. There is a chance the surgery will be in August of this

year.

Well we are nearly neighbors! I cannot imagine my life without my

Sydney to fill up my days!

Kindest regards,

mom to Syd (mds), almost 5, Zach 19 and Kerry 21

--- In _MosaicDS@yahoogroupMosai_ (mailto:MosaicDS ) ,

JESSICAJEM1977@, JESS

>

> Finally digging through 599 E-Mails..... Finally digging through

Ever....So

> Here Goes!!! My name is and my Husband is . We have

been married 9

> years and have four children. We live on Cape Cod and love it here

although

> the winters are long and boring!! I am a Registered Nurse and my

Husband is a

> manager for s Lawn Service. He is currently in a police

reserve academy

> and is trying to become a police officer.

> My oldest son is 9 years old and in the 4th grade. He loves what

typical 9

> year old boys love...Sports and Video Games. My oldest daughter is

turning 8

> and is in the second grade. She loves to read, especially about

Fairies! She

> also loves Soccer and Gymnastics. My youngest son is 5 and in

preschool. He

> will thankfully start Kindergarten next year because he is more

than ready!! He

> loves anything his older brother loves, because he wants to be

just like him!

> Our baby is , 2 1/2 years old and the most work yet! It's

a good

> thing she came last and not first!! She is our joy and we all fight

over her

> attention. She is a Ham and is always trying to make us laugh. She

is also super

> stubborn and independent and will only do things her own way, when

she wants

> to. A Typical Two Year Old I Say!! has MDS and wasn't

diagnosed until

> she was almost three months old.

> My 18 week ultrasound during pregnancy showed a heart defect and at

the

> cardiologist' cardiologist'<WBR>s urging, I reluctantly had an

results were

> normal and my pregnancy was transferred to a High Risk OB.

was induced in a

> Boston Hospital a week early because they wanted her born in the

city with

> the staff needed for her care. Once born she looked Pink and she

was screaming

> like a healthy Baby. They let me hold her for a couple minutes

before

> transferring her to the NICU. When I went to the NICU that night

to hold her, my

> intuition told me something was not right with her. I couldn't

pinpoint what

> exactly, but she was different somehow than my other children. Her

> echocardiogram the next day showed good news, had a

different heart defect than

> they originally thought when she was in utero. This was a much

better defect to

> have (ASD) but she continued to trouble them. She would become

cyanotic,

> needed oxygen to maintain an acceptable oxygen level, had poor

feeding and very

> low muscle tone. She had many little things that bothered the NICU

doctor

> about her physical attributes that my Husband and I did not notice.

She had a

> Neurologist and Geneticist see her and they sent out blood work on

her

> chromosomes. I did not understand this because I had a negative

amnio but the results

> were sent out and after 2 1/2 weeks in the NICU, was sent

home on

> oxygen. She had failure to thrive at home. She would sleep through

the night and

> was never interested in eating. She had such a weak suck and

would not gain

> any weight. She was admitted to Childrens Hospital at 2 months old

for a NG

> tube to feed her and was there a week. She came home with the

feeding tube

> but never had any improvement with eating and eventually stopped

altogether a

> month later. At 4 months old she had a G-tube place for feeding.

She started to

> thrive because she kept her feedings down better without the NG

tube. Her

> reflux had been quite severe. She started to put on weight and

eventually

> started to make some milestones. The big difference in ,

came right before

> her 2nd birthday when she had her open heart surgery for her ASD

repair. The

> energy she has now!! The day after surgery she asked for water and

drank a 4

> oz. glass in seconds. She had never done that before. She

developed an

> interest in eating as well! This is what we have been praying

for !! will now

> eat very small amounts of certain foods. She will only eat Mac and

cheese,

> American cheese, juice boxes, water, certain crackers like

goldfish and

> cookies. Her favorite thing is mini m+m's!! These are baby steps

but HUGE for us.

> She will only take a couple bites of food a couple times a day but

this is

> coming from NOTHING!! She is still about 95% G-tube fed but she

has an interest

> to eat and it will only increase from now on. The big thing

standing in her

> way is sensory issues and Behavioral. She is Afraid. Swallowing is

hard when

> its so new and she is learning how to chew for the first time.

That is scary

> for her. She also doesn't associate food with hunger. It is a VERY

HARD thing

> to overcome. This has been the hardest thing I Have ever done in

my life. The

> progress is so SLOW. It is hard to stay patient. loves

Dora,

> SpongeBob, and Mickey Mouse. She loves to play outside, and

running and climbing like

> a typical two year old. She is speech delayed but has had a huge

explosion

> in speech the last month. She loves music!!! She has

feeding/speech therapy

> twice per week. PT twice per month, a music play group once per

week and a

> social/gross motor play group once per week. She is Thriving!! She

still has

> problems with low muscle tone and can not yet walk up or down

stairs without

> help. She wears braces for her weak ankles that have really helped

strenghthen

> her legs by supporting her ankles. She rarely falls now. We have a

problem

> with safety for her. The concept she does not yet understand but

she is getting

> much better. A month ago she would of walked off the top of the

stairs or

> any edge without a clue. She now will stop at the edge and try to

find a way

> down even if she falls trying to do it. She also is a wanderer. I

know this is

> a trait held by many with MDS. I dont know if short attention

spans is also

> common??? has trouble sitting in circle with the other kids

in

> playgroup for more than two minutes. She also rarely sits for the

whole story when I

> read to her. She also moves from toy to toy or activity to

activity within

> minutes.

> Well when we had our appointment with the geneticist that now

long ago

> November day when was almost three months old, and she said

to us......Do

> you know what a chromosome is? I sat in shock. I thought of all

the things

> she would never do and felt a loss of the daughter I dreamed of.

It was mostly

> ignorance. I had never heard of MDS and new little about DS. This

> organization was the only thing I came across online with

information about MDS and

> hearing stories of Hope really helped. has AMAZED ME!!! She

is more than

> I could have ever asked for. I feel lucky to have been blessed by

my

> daughter. I now dream of what a wonderful, full life that is

possible for her. And I

> will stand by her to make sure it happens. We treat her like she

is the same

> as our other 3 kids. In reality she is. Every child is different,

any child

> can have health

> problems. We are all Unique in our own way. Sorry this was so

long...I

> started writing and couldn't stop!!

> (mom to 2 1/2 MDS)

>

> In a message dated 1/1/2008 12:13:17 A.M. Eastern Standard Time,

> imdsapresident@ imdsap

>

>

>

>

> Happy New Year Everyone! I hope all of you have a wonderful, safe

and

> prosperous 2008!

>

> Let's start the New Year out right! We have over 500 families on

our group

> and I realize most are lurkers. In this past year, we have

received so many

> new families that it is hard for everyone to know who is who!

>

> So...I invite you to join me in telling everyone about yourself

and your

> family. RE-introduce yourself to the group so everyone knows who

you are!

>

> I will start...

>

> I am Kristy Colvin. I live in Texas and am about to celebrate my

13th

> wedding anniversary with my wonderful husband, Glenn. I have 3

sons and 2

> step-sons. (My sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my

step-sons)

> 22 and Stevan 21. Arron lives on his own and has my 4 beautiful

grandsons,

> (Arron, Aidan, " Spot " and Garrett). is in the Army and now

stationed in

> Arizona and Stevan is in the Navy and is stationed in Baghdad. Tim

and Garrett

> stay home with me. Tim is about to begin job hunting as he has

taken a break

> since graduating in 2005. Garrett is in 6th grade. (I know...it

confuses me

> sometimes too! lol) Glenn is a truck driver and is gone most the

time and I

> work full time (as a volunteer) for IMDSA. I co-founded IMDSA in

2001 and it

> has been a wonderful outlet for me as Tim was growing in his teen

years and I

> was desperately searching for information on mosaic Down syndrome.

After many

> questions and talking to countless families and professionals,

> I now probably know more about MDS than any person in the world!

LOL But,

> now that I know all that I do, I am able to help all the wonderful

families

> like you!

>

> So...that is me....tell me about you!

> Kristy

>

>