welcome

[Guest guest]

Welcome to the group . Sorry to hear that your sister has RP but glad you both found us. I know how it is with sisters. I am one of three and sisters are the bestest! is so lucky that she has a sister that cares enough about her to check on these things with her. Sometimes it is best to get two perspectives on things or to be able to communicate with someone close who actually knows what you are talking about. Hope to get to know you both better. As for the people in this group being a close knit family you got that right. I just love them all to pieces!

Lots of LoveGlenda

[Guest guest]

Welcome

Great pics and a new life too. WOW you have been busy. What made you make the

plunge from Long Island to So. Calif? Bet it was the confidence you now have?

You won't stay single long out in Caiforney! I predict you will have the ladies

all around you before its over with!

Sherry in Knoxville TN

Just another Southern Girl thinking outloud!

BLUZGAL

REMEMBER---LIFE IS A JOURNEY--NOT A DESTINATION!

[Guest guest]

Hi ,

Welcome to our group. I have an almost 12 year-old RSS son as well

as 2 other kids, ages 5 (another boy), and a daughter who will be 19

months in 5 days. All of my children are on the small side, and are

poor eaters. , my RSS son, was 12 lbs. 6 oz. and 24 " at 19

mos. old, but I believe he was one of the smallest RSS kids. He was

born 12 weeks early weighing 15 oz. (dropped down to 12 oz. before he

started gaining weight). He got a g-tube when he was 6 months old,

when he weighed 4 lbs. I keep very detailed records. I looked at

his calorie intake, and at 19 months, he was getting 585 calories,

but when he was the same weight as your daughter, he was getting

about 765 calories per day (and this was with a g-tube).

I mentioned that all my kids are on the small side. My 5 year old

weighs somewhere between 35 and 36 lbs. and is 42 " . I don't have

exact stats on my daughter, who is the same age as , but I

think she is between 20 and 21 lbs. and maybe 30.5 " . We go to the

doctor on Friday, so I'll find out then. All of my kids have had

reflux, contributing to poor eating. My 5 year old still suffers

from it, and I'm not sure about the baby, but she is definitely MUCH

better than when she was younger. I do not count calories for my non-

RSS children, but I can assure you they are taking in way less than

the average children. It sounds like you are doing a good job trying

to get high calorie foods into . Something else you can do to

increase calories is to add MCT oil or a MUCH cheaper version is

plain old corn oil (which is also a medium chain triglyceride -

MCT). You should discuss this with the nutritionist first, because

too much can hurt her, causing things like diarrhea. I think I used

to give about a teaspoon/day. I added this to his feedings

or to things he ate orally when he had feeding therapy.

The problem with RSS kids and gaining weight is that they need more

calories than the typical child to gain weight. I didn't get

's RSS diagnosis officially until he was 9.75 years old, but I

suspected RSS at age 4. has had extreme difficulties gaining

weight his whole life, even with a g-tube. He couldn't tolerate all

the calories he needed to grow. Doctors used to tell me that he

burned more calories than typical kids in everyday activities such as

breathing, walking, etc. He was significantly delayed on all his

gross motor milestones, and because they were so difficult for him to

attain, he burned more calories (i.e trying to hold his head up that

weighed more than the rest of his body!). He also was on oxygen for

2.5 years, hence the burning extra calories to breathe. The decision

of whether or not to get a g-tube is a hard one. For , it

really wasn't a choice. He would have died otherwise. still

has a g-tube, and is essentially a non-eater. He'll be 12 in a

month, and he weighs 59 lbs. and is 52.5 " , so he is still on the

small side!

Hope some of this info was helpful,

Kim C.

> Hello,

> My name is , I learned of my daughters diagnosis last

> month, and a few days ago found this site, and thought I'd join the

> chats! Her name is Dasia, 19 months, 16lbs, 29in. My greatest

> concern is, I've heard so much about the feeding tubes, and her

> devel. ped. didn't mention it, I learned how common it is on-line

> after I got the diagnosis, and the nutritionist I've been working

> with wasn't thrilled about the idea when I brought it up to her

> recently. Yet I know Dasia definitely has plenty of bad days, and

> inside I'm terribly afraid of compromising her final height, or her

> brain development! The nutr. says she should be getting 850

> calories, and I'm quite sure that rarely happens, if ever. Is there

> anyone with the same aged child who could say how much their child

> is getting? Or someone who remembers this age? I have to blend her

> food, all high calorie, high fat foods, and on a good day she'll

> finish two 4oz containers, one usually at lunch and the other at

> dinner. I add heavy whipping cream to her milk which has carn.

> instant breakfast, and on a good day will finish an 8oz cup. She'll

> have a little bit of food for breakfast, and a couple bites of

> different things I try to offer her during the day, and that's

> pretty much it! The only thing that has kept me from getting overly

> worked up about it all, is the fact that she doesn't look really

> skinny, she has a little double chin, and looks pretty healthy to

> me, with what looks like a healthy amount of baby fat, certainly not

> as chunky as I would want, like my other 2 were! She just looks like

> a much younger baby, and has a very small frame. The logical side of

> me thinks her body wouldn't be storing any body fat, if the energy

> was intended for growth or brain devel., or maybe I'm just in

> denial! Anyone?

>

>