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I was fortunate to have a housekeeper/babysitter who came to my

house in the afternoons. She was WONDERFUL with Max and had much

more patience than I did sometimes when it came to feeding him. She

learned to use his pump, cleaned him up when he frequently vomited

and cried when he went into the hospital. She was less expensive

than childcare at a center, too. Oh - I forgot to mention that she

was Portugese. Eventually, however, I had to quit working because

Max was just too sick and in the hospital so often. (But she did

take care of our older daughter during those times.) Max was

eventually more stable, so I went back to work 8 years ago and have

not stopped.

I have found over the years that babysitters who were Columbian,

Portugese, Jamaican, whatever, were much more attentive than our

American attempts. I know it is a gross generalization, but it was

true for us. There must be Americans who would do a good job, but

they never found their way to our house!

Jodi Z.

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Hi,

I have 4 year old twins one of whom is RSS. Since the children were

a few months old, we have had full-time help at home. We both work

full-time. We have been able to find some very patient people to

help eat. Now that he has a pump, we have had to teach people

how to handle that, but it is really quite easy and we haven't had

any problems.

Good luck,

Judith, Steve, (RSS) and (non RSS) 4 year old twins

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Dear " coreytlab " ,

While it is true that at a daycare, it is unlikely that a person

could or would devote an hour to each meal, we found that

sometimes eats better and even faster when he eats with a group of

kids his own age. Peer pressure I guess. is currently in a

daycare home. He probably doesn't eat as much as he might if someone

had the time to spend working with him so what we do is this: he

eats whatever he eats and then after meal time, he is given an 8

ounce sippy cup with whole milk mixed with baby formula. Then, at

night, he is given an 8 ounce 'treat' to drink. This is a high

calorie yogurt smoothie, such as 'Yo Baby' or a Hershey's Milkshake.

This provides him 30 calories an ounce and hopefully also enough

vitamins, etc. to fill in the huge holes in his diet. We did not

think this mattered so very much and so we stopped it for a couple of

weeks. Unfortunately, he started loosing weight so we went back to

it. does eat, more or less, usually less. This way, too, we

feel that we are not getting into battles with him over food, which

we think can be destructive. I think each family finds its own

solutions and compromises and you will find something that works for

your child, too.

Conny, Great aunt to , 27 months, SGA

> Hi all,

>

> I am the mother of a 9mth old son that may have RSS( I say may

> because he has yet to be diagnosed, but we are pretty certain) Has

> anyone tried to find child care for their RSS kids? I recently

went

> back to work after being at home with my son for 8mths, and now my

> husband has taken a leave of absence, so that one of us can be at

> home with him. At some point, both of us are going to have to

work,

> but we are so worried that we won't find anyone that will have the

> patience that it takes to sit a feed for those 1-2 hours at a

time.

> Certainly I can't believe a place like kindercare, will do it, but

I

> don't know. So I was just looking for any advice, if anyone has

any

> in this area. Did you just have to use family members, or did you

> just have to quit work?

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I have to ditto what everyone else wrote.

I worked for the first 3 years of 's life, and she

experienced at home nanny in LA with Tita (El Salvador), Cammy in CT

(Jamaican), and then daycare/preschool.

You may not have a lot of choices, financially, with regards to your

childcare options. From our experience, a formal day/preschool will

NOT be able to manage a child who takes a long time to eat. But

yes, I agree that often times kids do tend to eat more with peers

around. But we have found that it is only if the peers are required

to stay at the table for a certain amount of time. If the kids can

play after they are done eating, off they go and your RSS child

wants to go play too, and won't finish.

Frequent snacks, every 60-90 minutes, will be essential, so you will

have to train your daycare provider, whoever they are, that this

part is NOT optional. Ziplock bags with small amounts of food are

ideal.

Family-run daycare can be good or bad, depending on the person. You

will have to investigate, because if it is a small daycare, then the

single provider may not be able to devote the extra time to a single

child's needs when the others are running around (I have heard that

the ideal is when a small family daycare has children of assorted

ages).

The ideal situation is someone that can some to your house, simply

because you have the one on one attention AND because your child has

less of a chance of getting sick those first 2-3 years. Sicknesses

are the EVIL for our kids, because even a simple cold makes a child

not want to eat. And yes, for some reason, our nannies just like

the others on the listserve, were very excited about " fattening "

up. You have to give strict instructions about

the " frequent " snacks wherever you are.

The fact is that quitting work is simply not an option for most

people. And having an RSS child who needs the calories and who you

want to keep as healthy as possible -- ouch. You will have to spend

a great deal of time and energy searching for the ideal childcare

situation.

Having said all that, I still remember the mom who called me for

help in getting SSI for her RSS son (who had a g-tube and major GI

issues). In the middle of all this, she got laid off from work, and

so instead of being in daycare, her son was at home with her for 6

weeks. I think he was about 2 yrs old and she called me, he gained

more than 2 pounds in that 6 weeks!!! So she got the SSI, and is

now staying home with him, doing some outside work from her home.

But that option isn't available to most of us.

Hope some of this helps!

> Hi all,

>

> I am the mother of a 9mth old son that may have RSS( I say may

> because he has yet to be diagnosed, but we are pretty certain)

Has

> anyone tried to find child care for their RSS kids? I recently

went

> back to work after being at home with my son for 8mths, and now my

> husband has taken a leave of absence, so that one of us can be at

> home with him. At some point, both of us are going to have to

work,

> but we are so worried that we won't find anyone that will have the

> patience that it takes to sit a feed for those 1-2 hours at a

time.

> Certainly I can't believe a place like kindercare, will do it, but

I

> don't know. So I was just looking for any advice, if anyone has

any

> in this area. Did you just have to use family members, or did you

> just have to quit work?

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