Thoughts and Info for those interested.

[Guest guest]

Hi friends. First and foremost, clothing always seems to be an

issue for our children. The one thing I've been faced with recently

is underpants! Ian (27 mos) has recently become interested in the

potty (his big brother 3.5 is potty trained) and there are

no underpants that will fit him. We even tried girls and they are

way too big. Ian is still wearing 12 mos clothes and size 3

diapers. Anyway, my beautiful mother is an embroiderer and has lots

of connections to those who sew and the like. She had someone make

a " demo " for Ian for underpants. We tried them on and they fit

(they are size 9-12 months) Althought they were a little tight in

the thigh - they work great. So, my mom is sending us a pattern.

If anyone is interested in getting a copy of this pattern - let me

know. If I make them successfully myself (I love to sew) maybe I

can make a few. If I can't maybe I can get my mother to help.

The second thing I'd like to do is share something with everyone.

I'm planning on doing a dinner/fundraiser in Chicago next year -

hopefully March or April. I'm considering all my options - I have

lot's of contacts. I have two friends who each own a catering

business and one has already agreed to provide the food. Although

we recently moved from Chicago to VA - we are blessed with lot's of

friends, acquaintances and contacts back in Il who will be able to

help. Anyway, as part of this process, I decided late one evening

to write my thoughts to help me develop a fundraiser letter. I've

noticed several new people on the posts and thought it might be

helpful if other's knew that they are not alone in their thoughts.

I'm sorry this is long. We are all really sick here with URI's, ear

infections, coughs - you name it and I've got lot's more time to sit

and type.

FUNDRAISER 2006

At a recent gathering of the Magic Foundation – their 2005

convention in Chicago, IL, my son Ian sat with another boy for

lunch. This boy was 3 years old and had the sweetest personality.

I asked Ian to say hi to the boy. Instead, Ian said " Your'e

little " . Of course, I was flabbergasted that my child at his young

age would make such a bold statement, especially considering this

new friend had a lot in common with Ian.

Ian has Silver Syndrome.

At the age of two (27 mos), Ian is 20 lbs. His height is below the

3rd percentile and his head falls in the 95th percentile. His

weight doesn't even reach the lines on the growth charts.

It was after several stressful visits with his pediatrician and our

advocacy for our son that his diagnosis was finally made at 9

months. We knew from the beginning something wasn't right. Ian

would only eat 2 ozs of formula at a time. He could not suck

properly, he never awoke on his own for feedings and continually had

to be coerced into eating every meal. At eight month's when a

myriad of tests (that I demanded be done) revealed nothing, we again

put our foot down saying, " There's something wrong with my child.You

are the Health Care Provider - Figure it out! " . That's when a

geneticist met Ian at 9 months and gave us our diagnosis. Of

course, at first we were relieved. " Oh, that's why he looks like

this " . But, when you are told your child has something different

than other children, the information is not usually well received by

the parents. " My child is different? He's not " normal " ? Denial

usually sets in. " What is Silver Syndrome (RSS)? What does

this mean? Are you sure? " Our lives began to change.

Ian hasn't eaten much today. He refused breakfast and drank his

Nutren, Jr1 instead. At snack time all he wanted was 4 oz of

Gatorade. Lunch time was typical with two bites of a grilled cheese

sandwich and two gold fish crackers. After nap time he insisted on

more Nutren Jr., fortunately, and for dinner he only wanted 4 bites

of steak, 1 tsp of peas and a few slices of grapes. At bed-time, we

were lucky to see him drink 6 oz of Nutren, Jr. again. Today was

not a good eating day.

Most of Ian's days are filled with lack of eating, lot's of energy

and limited amounts of calories to replenish his outgoingness. And,

of course, he likes to keep up with his active 3-year old brother.

Hypoglycemia and constipation are always lurking in Ian's life.

We also went to the park today. A mother commented on how cute he

was. She also mentioned he was so " little " and wondered if he was

around 12 months of age. I gave my usual reply, " Yes, Ian has a

rare syndrome, he will always be little, and although he's wearing

12 month clothes he's 2 years old " .

Most of Ian's days are reminders to him about how little he is and

looks of amazement when I tell people his actual age. It doesn't

matter where we go, the bookstore for story-time, the park, the

mall, or even a restaurant – Ian is the center of attention due to

his beautiful personality, of course, but more importantly because

of his size. Even at the age of 2, when you ask him if he's a big

boy – he'll tell you " I'm little " .

Ian loves to talk. He's quite advanced for his age. But, due to

his cranial facial differences and poor muscle tone, Ian has speech

difficulties and would not be where he is today without his speech

therapist.

Sometimes Ian gets sick. These are the worst of times. When Ian

gets a cold, he typically gets a sinus infection or an occasional

ear infection. With sickness comes antibiotics, frequent trips to

the doctor for re-checks, occasional ER visits, and lot's of worry

because Ian almost never eats solid foods when he is sick. At the

doc today, Ian's Pediatrician confirmed a severe ear infection.

Omnicef is the prescribed medicine for Ian since Amoxicillan and

others do not work for Ian. Unfortunately, Ian never eats on

Omnicef – it's very hard on his system.

Mom's days are always filled with worry about what Ian will or will

not eat that day including quick calorie counts to measure up his

day. Or, what clothes will he wear or not wear, how many times she

will have to repeat Ian's words to others so people will understand

him, and repeating Ian's words back to Ian for speech therapy

purposes, whether or not to place a cotton ball in his size 3 diaper

to test his keytones for hypoglycemia, or even counting how many (or

lack of) bowel movements he's provided that day. And when Ian is

sick, mom gets to worry if this particular sickness will need a

visit to the ER due to lack of food, fluids and dehydration spells

and more antibiotics. For mom, there are phone calls for follow-up

visits to the Pediatrician, Nutritionist, Endocrinologist(s), Cranio-

Facial specialists, Dentists, Gastroenterologist, Speech Therapist,

and finally the Geneticist. Along with household chores mom gets to

pay the household bills; but, there are also, insurance demands,

medical bills, hospital bills and credit cards bills for the Nutren,

Jr. purchased on a monthly basis – not included as part of the

household budget.

We can't forget our fabulous, intelligent and active 3 year-old

brother. loves Ian. He kisses him, tells Ian he loves

him and gives him hugs. He's a typical sibling though, he doesn't

always share, fights back when a toy is taken from him, and can't

wait for Ian's nap to spend alone time with mommy. But,

also understands there is something different about Ian. He still

thinks Ian is a baby – why not, there are 12 and 18 month old

children bigger than him. says he wants a syndrome too

and wonders why he doesn't have more doctors like Ian.

So, mom gets to fill her days additionally with worry about whether

or not is getting enough attention, after all – she's

spending a lot of time thinking about Ian's health throughout the

day. And what about the occasional day when there are thoughts

about Ian's future. Ian will have early puberty issues, he will

have social and self-esteem issues, he will need growth hormone to

help him grow and he may need a feeding tube to support the daily

shots of growth hormone. Ian has asymmetry issues. He's 1 cm

shorter on his " smaller " side. Will he need a shoe lift

eventually? What about his curved fingers and chlyndactile toes?

Will other children laugh at these deformities? What will happen

when he wants to play soccor at age 4 like his brother, how will he

maintain his caloric intake then, or even when he starts baseball or

swimming at age 7? Will Ian be able to keep up with the other

children? Again, how will this effect his self-esteem? Will he

need a feeding tube then? Will his hypoglycemia get worse?

Diabetes is a serious factor for children such as Ian too! How will

we get the extra calories in a child that doesn't want to eat – or

can't eat? Then, there's the present future. What about testing

for silent reflux and slow emptying? Will these tests and future

daily injections cause him pain? This mom can not bear the thought

of causing her child any pain, no matter how minute or helpful it is

to his " little " body. But, then again, what would Ian want? What

would Ian say when he's 18 or even when he's 30?

Although I cried for three days after the convention, grief had

taken over - for all the information reminded me that my son

was " different " . But, fortunately, God gives me strength, patience

and the love of friends, support groups, family and physicians to

get us through each day. So whether we have terrible days or bad

days - we have a beautiful life ahead of us. And when Ian laughs,

fights and hugs his brother, gives me hugs and kisses and tells me

he loves me - I know everything is going to be okay.

[Guest guest]

You could take your story almost word for word and inject my

children's names and it would fit perfectly. WOW! How great to know

that others FEEL the same way I do. I've known for a long time that I

am not alone in all of this, we all go through similar experiences,

but the feelings are the same too! Thank you for these beautiful,

honest and aching words!

Blessings to you and yours,

Carmen, mom to Storm, 9 years old RSS, and Paisley 12 years old. (and

a host of foster kids)

[Guest guest]

(or H, is it?)

Thanks for your post. I can relate with so many of your thoughts and

experiences.

I would love a copy of the pattern for the underpants. Our son, Ethan, is 2

1/2,

and has also started to become interested in the potty. I was wondering what

we were going to do about underwear, since he also wears Size 3 diapers

(his 6 mo. old brother is now in the same size diaper) and 12 mo. pants and

shorts (he's into 18 mo. for tops).

If you do the fundraiser in Chicago next spring, maybe we can make it--we're

just a few hours away in Indiana.

Stacey, mom to Ethan (RSS, 2 1/2 yrs. old, 19#, 31 " ) and Aidan (non-RSS, 6

months)

> > > Thoughts and Info for those interested.

> > >

> > >

> > > Hi friends. First and foremost, clothing always seems to be an

> > > issue for our children. The one thing I've been faced with

> > recently

> > > is underpants! Ian (27 mos) has recently become interested in

> > the

> > > potty (his big brother 3.5 is potty trained) and there

> > are

> > > no underpants that will fit him. We even tried girls and they

> > are

> > > way too big. Ian is still wearing 12 mos clothes and size 3

> > > diapers. Anyway, my beautiful mother is an embroiderer and has

> > lots

> > > of connections to those who sew and the like. She had someone

> > make

> > > a " demo " for Ian for underpants. We tried them on and they fit

> > > (they are size 9-12 months) Althought they were a little tight

> > in

> > > the thigh - they work great. So, my mom is sending us a

> > pattern.

> > > If anyone is interested in getting a copy of this pattern - let

> > me

> > > know. If I make them successfully myself (I love to sew) maybe

> > I

> > > can make a few. If I can't maybe I can get my mother to help.

> > >

> > > The second thing I'd like to do is share something with

> > everyone.

> > > I'm planning on doing a dinner/fundraiser in Chicago next year -

> > > hopefully March or April. I'm considering all my options - I

> > have

> > > lot's of contacts. I have two friends who each own a catering

> > > business and one has already agreed to provide the food.

> > Although

> > > we recently moved from Chicago to VA - we are blessed with lot's

> > of

> > > friends, acquaintances and contacts back in Il who will be able

> > to

> > > help. Anyway, as part of this process, I decided late one

> > evening

> > > to write my thoughts to help me develop a fundraiser letter.

> > I've

> > > noticed several new people on the posts and thought it might be

> > > helpful if other's knew that they are not alone in their

> > thoughts.

> > > I'm sorry this is long. We are all really sick here with URI's,

> > ear

> > > infections, coughs - you name it and I've got lot's more time to

> > sit

> > > and type.

> > >

[Guest guest]

Stacey, great - I've written you down for the pattern. It seems

Ethan and Ian are very similar in size.

You have your hands full don't you! Daily thoughts to you. If you

ever need to talk - feel free to chat with me. Mine are 17 months

apart and some days are a whirlwind - which I'm sure you can relate

to!

As far as the fundraiser - I'll definately be keeping everyone

posted and would love to see you there.

- H

> (or H, is it?)

>

> Thanks for your post. I can relate with so many of your thoughts

and

> experiences.

>

> I would love a copy of the pattern for the underpants. Our son,

Ethan, is 2 1/2,

> and has also started to become interested in the potty. I was

wondering what

> we were going to do about underwear, since he also wears Size 3

diapers

> (his 6 mo. old brother is now in the same size diaper) and 12 mo.

pants and

> shorts (he's into 18 mo. for tops).

>

> If you do the fundraiser in Chicago next spring, maybe we can make

it--we're

> just a few hours away in Indiana.

>

> Stacey, mom to Ethan (RSS, 2 1/2 yrs. old, 19#, 31 " ) and Aidan

(non-RSS, 6

> months)

> > > > Thoughts and Info for those

interested.

> > > >

> > > >

> > > > Hi friends. First and foremost, clothing always seems to

be an

> > > > issue for our children. The one thing I've been faced

with

> > > recently

> > > > is underpants! Ian (27 mos) has recently become

interested in

> > > the

> > > > potty (his big brother 3.5 is potty trained)

and there

> > > are

> > > > no underpants that will fit him. We even tried girls and

they

> > > are

> > > > way too big. Ian is still wearing 12 mos clothes and

size 3

> > > > diapers. Anyway, my beautiful mother is an embroiderer

and has

> > > lots

> > > > of connections to those who sew and the like. She had

someone

> > > make

> > > > a " demo " for Ian for underpants. We tried them on and

they fit

> > > > (they are size 9-12 months) Althought they were a little

tight

> > > in

> > > > the thigh - they work great. So, my mom is sending us a

> > > pattern.

> > > > If anyone is interested in getting a copy of this

pattern - let

> > > me

> > > > know. If I make them successfully myself (I love to sew)

maybe

> > > I

> > > > can make a few. If I can't maybe I can get my mother to

help.

> > > >

> > > > The second thing I'd like to do is share something with

> > > everyone.

> > > > I'm planning on doing a dinner/fundraiser in Chicago next

year -

> > > > hopefully March or April. I'm considering all my

options - I

> > > have

> > > > lot's of contacts. I have two friends who each own a

catering

> > > > business and one has already agreed to provide the food.

> > > Although

> > > > we recently moved from Chicago to VA - we are blessed

with lot's

> > > of

> > > > friends, acquaintances and contacts back in Il who will

be able

> > > to

> > > > help. Anyway, as part of this process, I decided late one

> > > evening

> > > > to write my thoughts to help me develop a fundraiser

letter.

> > > I've

> > > > noticed several new people on the posts and thought it

might be

> > > > helpful if other's knew that they are not alone in their

> > > thoughts.

> > > > I'm sorry this is long. We are all really sick here with

URI's,

> > > ear

> > > > infections, coughs - you name it and I've got lot's more

time to

> > > sit

> > > > and type.

> > > >

[Guest guest]

yadira-

please know you are not alone!! and consider coming to jodi's on sat

to meet with jodi z & her family, jenn b and her family, and myself and

my family. it may help to actually meet kids that are older and meet

us to share our experiences with you. it might help to put your mind

at ease. please consider coming!!

jodie c

[Guest guest]

H-

Yes, some days are definitely what I would call a whirlwind. I guess this is

what having young children is all about--there are days when I wonder if all of

us will make it through alive!

Stacey

> > (or H, is it?)

> >

> > Thanks for your post. I can relate with so many of your thoughts

> and

> > experiences.

> >

> > I would love a copy of the pattern for the underpants. Our son,

> Ethan, is 2 1/2,

> > and has also started to become interested in the potty. I was

> wondering what

> > we were going to do about underwear, since he also wears Size 3

> diapers

> > (his 6 mo. old brother is now in the same size diaper) and 12 mo.

> pants and

> > shorts (he's into 18 mo. for tops).

> >

> > If you do the fundraiser in Chicago next spring, maybe we can make

> it--we're

> > just a few hours away in Indiana.

> >

> > Stacey, mom to Ethan (RSS, 2 1/2 yrs. old, 19#, 31 " ) and Aidan

> (non-RSS, 6

> > months)