Remember me .... 's Mom from land

[Guest guest]

Hi everyone,

Remember me? I think I last posted in August. I thought I would

give you all an update.

My son has since been officially diagnosed with RSS by a

team of Drs. 's Hopkins and we have been trying to figure out

the best way to help live as normal of a life as possible

when it comes to feeding.

He will turn a year old next month-March 24th and has graduated from

the ng tube to the g tube and now to a mic key. We feed him at

night 30 cal alimentum and during the day he takes a little formula

with stage 2 and some stage 3 baby food.

I have been researching RSS and talking with all 's doctors

who are great but the problem is I feel like I just don't know how

to feed my child. I realize that his condition causes him not to

want to eat but I just feel determined to figure out how to help him

to eat regularly. He has been doing pretty well during the day with

the baby food. It is MUCH easier than giving him a bottle.

The doctors are statisfied with his weight gain but ALWAYS push for

us to do tube feedings during the day. I stand firm that I want to

do EVERYTHING possible to avoid the tube during the day. Especially

since he is at daycare all day.

Thankfully 's progress has been good so far and the drs will

accomadate my request to either boost the calories of the feeds at

night or increase the amount he receives. I realize that

will probably need the tube for some time but I don't want to rely

on it and take the easy way out. I want to give him a chance to

experience eating like other kids his age during the day.

I found the magic website very helpful but still manage to think of

numerous questions. I have found that the best tips and advice come

from all of us who have hands on experience with children with RSS.

My questions are as follows:

Does anyone have any tips that they have found helpful for eating?

Whether special receipes, techniques?

Any tips for securing the feeding tube/ sleeping position during

night time feeds?

has physical therapy twice a month to help him to get his

muscles stronger to crawl/walk but would anyone know of any insider

tips that have worked for your child? Toys? Exercises?

How do you explain your childs condition to friends/family/strangers?

I can't seem to find any books on RSS or even good ones about

feeding a baby with eating challenges. Does anyone know of any?

I hope I don't seem like an obsesive overbearing mother but just

like each of you I just love my son so much and I want him to

continue being the smiling, happy- go-lucky boy he is today. And to

help him I feel like my husband and I need to be perpared for things

to come. I feel the best way is to learn from all of you who live

it each day. Thank God for this support group!

Thanks in advance!

(Baltimore, MD)

Mom to

(11 months, 16lbs 6oz, RSS, Leg asymetry, Acid Reflux, Milk Allergy,

Mic Key button)

[Guest guest]

Hi . My name is Jeanie and my son, Brockton, was diagnosed with RSS in

November 2005. Is able to sit up on his own yet? You said that he is

just a year old, right? My main advice to you is to be patient. I know it's

hard. My son didn't sit on his own until he was 13 months. I thought he would

NEVER do it, but he did, and now, at 18 mo., he's so close to walking without

hanging on to anything that I'm finding it hard to be patient with this

milestone! I, too, am obsessed with trying to make our lives as " normal " as

possible and it is so hard when your beautiful, smart, funny, loving child just

isn't where a " normal " child his age should be. Brockton was born at 1 pound, 9

ounces and 12 inches long. When people ask me questions about his size or make

comments about how small he is for his age, I just tell them how small he was

when he was born and that seems to be enough.

God bless you and yours and keep us posted on s progress! He'll be

GREAT!

Jeanie

P.S. Feel free to email me privately if you'd like.

wrote:

Hi everyone,

Remember me? I think I last posted in August. I thought I would

give you all an update.

My son has since been officially diagnosed with RSS by a

team of Drs. 's Hopkins and we have been trying to figure out

the best way to help live as normal of a life as possible

when it comes to feeding.

He will turn a year old next month-March 24th and has graduated from

the ng tube to the g tube and now to a mic key. We feed him at

night 30 cal alimentum and during the day he takes a little formula

with stage 2 and some stage 3 baby food.

I have been researching RSS and talking with all 's doctors

who are great but the problem is I feel like I just don't know how

to feed my child. I realize that his condition causes him not to

want to eat but I just feel determined to figure out how to help him

to eat regularly. He has been doing pretty well during the day with

the baby food. It is MUCH easier than giving him a bottle.

The doctors are statisfied with his weight gain but ALWAYS push for

us to do tube feedings during the day. I stand firm that I want to

do EVERYTHING possible to avoid the tube during the day. Especially

since he is at daycare all day.

Thankfully 's progress has been good so far and the drs will

accomadate my request to either boost the calories of the feeds at

night or increase the amount he receives. I realize that

will probably need the tube for some time but I don't want to rely

on it and take the easy way out. I want to give him a chance to

experience eating like other kids his age during the day.

I found the magic website very helpful but still manage to think of

numerous questions. I have found that the best tips and advice come

from all of us who have hands on experience with children with RSS.

My questions are as follows:

Does anyone have any tips that they have found helpful for eating?

Whether special receipes, techniques?

Any tips for securing the feeding tube/ sleeping position during

night time feeds?

has physical therapy twice a month to help him to get his

muscles stronger to crawl/walk but would anyone know of any insider

tips that have worked for your child? Toys? Exercises?

How do you explain your childs condition to friends/family/strangers?

I can't seem to find any books on RSS or even good ones about

feeding a baby with eating challenges. Does anyone know of any?

I hope I don't seem like an obsesive overbearing mother but just

like each of you I just love my son so much and I want him to

continue being the smiling, happy- go-lucky boy he is today. And to

help him I feel like my husband and I need to be perpared for things

to come. I feel the best way is to learn from all of you who live

it each day. Thank God for this support group!

Thanks in advance!

(Baltimore, MD)

Mom to

(11 months, 16lbs 6oz, RSS, Leg asymetry, Acid Reflux, Milk Allergy,

Mic Key button)

[Guest guest]

-,

Your not being crazy! You are right to work so hard for your son. My

daughter Grace is 3 now, but I remember those days. She got her mic-

key in May 2004. We did not use it during the day unless she was

sick and not eating by mouth. We did 10 oz of formula at night. We

would feed her every 3 hrs. during the day. She would take 30 min.

to drink 2-3 oz. of formula. She would not suck, so we used a sippy

cup, the old style, no " no spill " . So basically we poured some in

her mouth a little at a time. Baby food, crackers, etc. were all

much easier for her to eat we did these about 3 times a day. She use

to love the puffy cheetos, she could practice sucking with them and

they melted in her mouth. When Grace started GHT things got much

better. Her appetite improved and eating became so much easier.

Keep working hard, even when family does not understand the

importance of him eating a couple bites or oz. Does he see an OT for

feeding? We did and they had a lot of good suggestions and ideas.

Good Luck! Terri Tippman, mom of Grace(RSS, GHT, g-tube, 37 mths, 21

lbs, 31 in.)and Alivia(non RSS, twin to Grace) -- In RSS-

Support , " " wrote:

>

> Hi everyone,

> Remember me? I think I last posted in August. I thought I would

> give you all an update.

>

> My son has since been officially diagnosed with RSS by a

> team of Drs. 's Hopkins and we have been trying to figure out

> the best way to help live as normal of a life as possible

> when it comes to feeding.

>

> He will turn a year old next month-March 24th and has graduated

from

> the ng tube to the g tube and now to a mic key. We feed him at

> night 30 cal alimentum and during the day he takes a little formula

> with stage 2 and some stage 3 baby food.

>

> I have been researching RSS and talking with all 's doctors

> who are great but the problem is I feel like I just don't know how

> to feed my child. I realize that his condition causes him not to

> want to eat but I just feel determined to figure out how to help

him

> to eat regularly. He has been doing pretty well during the day

with

> the baby food. It is MUCH easier than giving him a bottle.

>

> The doctors are statisfied with his weight gain but ALWAYS push for

> us to do tube feedings during the day. I stand firm that I want to

> do EVERYTHING possible to avoid the tube during the day.

Especially

> since he is at daycare all day.

>

> Thankfully 's progress has been good so far and the drs will

> accomadate my request to either boost the calories of the feeds at

> night or increase the amount he receives. I realize that

> will probably need the tube for some time but I don't want to rely

> on it and take the easy way out. I want to give him a chance to

> experience eating like other kids his age during the day.

>

> I found the magic website very helpful but still manage to think of

> numerous questions. I have found that the best tips and advice come

> from all of us who have hands on experience with children with RSS.

>

> My questions are as follows:

>

> Does anyone have any tips that they have found helpful for eating?

> Whether special receipes, techniques?

>

> Any tips for securing the feeding tube/ sleeping position during

> night time feeds?

>

> has physical therapy twice a month to help him to get his

> muscles stronger to crawl/walk but would anyone know of any insider

> tips that have worked for your child? Toys? Exercises?

>

> How do you explain your childs condition to

friends/family/strangers?

>

> I can't seem to find any books on RSS or even good ones about

> feeding a baby with eating challenges. Does anyone know of any?

>

>

> I hope I don't seem like an obsesive overbearing mother but just

> like each of you I just love my son so much and I want him to

> continue being the smiling, happy- go-lucky boy he is today. And

to

> help him I feel like my husband and I need to be perpared for

things

> to come. I feel the best way is to learn from all of you who live

> it each day. Thank God for this support group!

>

>

> Thanks in advance!

> (Baltimore, MD)

> Mom to

> (11 months, 16lbs 6oz, RSS, Leg asymetry, Acid Reflux, Milk

Allergy,

> Mic Key button)

>