a little hope for new moms...

October 19, 2008

I sit back and read all that moms have to say... a lot of it, i don't

find pertaining to my family and daughter Macie who is 11 1/2 mths

old (MDS). Some of it does, and mainly i read for information to

store mentally for future references if needed. I do enjoy

reading " sucess " stories and stories about how wonderful some of our

children are doing.

So, i decided to just give a break down and update of all the

fantastic things and milestones Macie has met lately. Just for an

update for new moms, Macie (15% MDS) was sitting up unassited at 6

mths, crawling at 7mths, babbling at 8mths (true sylables) she is now

WALKING!!!!! She's been taking steps for a few weeks now, but she

offically is using walking as her main way of getting around! She

still crawls b/c sometimes she just in a real hurry to get to

whatever may be of interest! She has never had a sensory issue,

feeding issue...(matter of fact she eats ANYTHING) She says, momma

(not too often, but she does) dada constantly, bra (for Brant her

brother) nuuh (no-no) cat, duh (dog) she makes the " whaassst " for

what's that in a whisper voice. She points at things, she looks at

whatever we may ask her to look for....ex: fan, lights, a picture,

bottle, particular toy..

She sits very still for books to be read to her...she loves her

babies, gives kisses and hugs tight-tight. She dances like a little

soul sister (no offense to anyone but she has definetly got some

rhythm!!!!) She holds her cup and her bottle alone in a sitting

position , she feeds herself by hand....she helps me take her clothes

off and knows when i say " come here we need to put your pants

on " ..she'll sit and raise a leg! She smiles, interacts, claps, mocks

some things, She has had 2 little runny nose colds...and never the

first ear infection. She is 21 1/2lbs and her heigth and weight on

the (typical) growth chart is fine! The things she does is all

typical and normal to any 11mth old child. I am not nieve in

believing nothing will never come about that we may need to work on,

but for now she is perfect and is doing wonderfully. I am so blessed

and pleased and i just hope that this gives any moms with newborn

babies diagnosed with MDS some hope and comfort. I desperately

(still do) search for those stories of accomplishments and hope! But

no matter what your baby is doing or not doing....don't compare and

don't assume your baby won't or can't do something b/c they will! I

analyze everything about Macie and have a little sense of worry in

the back of my mind that i don't know will ever go away...but i also

have faith and i'm also constantly trying to stay one step ahead of

the game and nuture Macie with love, stimulation, and fun!!! Anyway,

just some words of encouragement for whomever may use them...

Peace and love,

Camisha

October 19, 2008

-I am really happy for you and Macie!! It sounds like she is doing

great and a little ahead on some issues as well. Honestly, if Charlie

Hart did not have the Apraxia of Speech issue, you would not know he

has MDS (50%). We are now finding out that his Apraxia of Speech and

accompanying head sensory issues along with his pulmonary infiltrates

ALL have to do with care he received (or did not receive!)after his

birth. Actually, what we have found (so far anyways) is that his

speech issue may have absolutely NOTHING to do with his mosaic genes.

Although Apraxia is neurologically based, the neurological side of it

can be linked to anoxia at birth.

We are very pleased that C.H. is cognitively functioning and 100%

receptive in his language abilities, which I attribute to promoting

and instilling signed language. We work very hard at home on Speech

therapy and I know if " I " can do it, anyone can do it. I believe in

my heart that his issues with speech will eventually resolve through

perserverence.

Having a child with MDS is just like having any other child to me

because each child is different in their own way regardless.

All The Best~

-- In MosaicDS , " Camisha " wrote:

>

> I sit back and read all that moms have to say... a lot of it, i

don't

> find pertaining to my family and daughter Macie who is 11 1/2 mths

> old (MDS). Some of it does, and mainly i read for information to

> store mentally for future references if needed. I do enjoy

> reading " sucess " stories and stories about how wonderful some of

our

> children are doing.

> So, i decided to just give a break down and update of all the

> fantastic things and milestones Macie has met lately. Just for an

> update for new moms, Macie (15% MDS) was sitting up unassited at 6

> mths, crawling at 7mths, babbling at 8mths (true sylables) she is

now

> WALKING!!!!! She's been taking steps for a few weeks now, but she

> offically is using walking as her main way of getting around! She

> still crawls b/c sometimes she just in a real hurry to get to

> whatever may be of interest! She has never had a sensory issue,

> feeding issue...(matter of fact she eats ANYTHING) She says, momma

> (not too often, but she does) dada constantly, bra (for Brant her

> brother) nuuh (no-no) cat, duh (dog) she makes the " whaassst " for

> what's that in a whisper voice. She points at things, she looks at

> whatever we may ask her to look for....ex: fan, lights, a picture,

> bottle, particular toy..

> She sits very still for books to be read to her...she loves her

> babies, gives kisses and hugs tight-tight. She dances like a

little

> soul sister (no offense to anyone but she has definetly got some

> rhythm!!!!) She holds her cup and her bottle alone in a sitting

> position , she feeds herself by hand....she helps me take her

clothes

> off and knows when i say " come here we need to put your pants

> on " ..she'll sit and raise a leg! She smiles, interacts, claps,

mocks

> some things, She has had 2 little runny nose colds...and never the

> first ear infection. She is 21 1/2lbs and her heigth and weight on

> the (typical) growth chart is fine! The things she does is all

> typical and normal to any 11mth old child. I am not nieve in

> believing nothing will never come about that we may need to work

on,

> but for now she is perfect and is doing wonderfully. I am so

blessed

> and pleased and i just hope that this gives any moms with newborn

> babies diagnosed with MDS some hope and comfort. I desperately

> (still do) search for those stories of accomplishments and hope!

But

> no matter what your baby is doing or not doing....don't compare and

> don't assume your baby won't or can't do something b/c they will!

I

> analyze everything about Macie and have a little sense of worry in

> the back of my mind that i don't know will ever go away...but i

also

> have faith and i'm also constantly trying to stay one step ahead of

> the game and nuture Macie with love, stimulation, and fun!!!

Anyway,

> just some words of encouragement for whomever may use them...

> Peace and love,

> Camisha

>

October 19, 2008

Wow Camisha! That is fantastic! Congratulations! Macie is doing so wonderful! I

like your message here! It is so true. Each child meets their milestones in

their own time and we will rejoice each and every time one of our kids does

something because we know how great it is and how very special it is to the

immediate family!

Thanks for sharing!

Kristy

Camisha wrote: