Re: Dalia - Eating Issues - Judi

[Guest guest]

Hi Judi!

My name is Pat, and I am G-ma to . Bran just turned 4 yrs old (12/21)

and the majority of Bran's oral calories still come from Stage 2 baby food

being shoveled into his mouth.

Due to unresolved reflux issues, Bran developed a severe oral aversion that

resulted in the placement of his G-tube when he was 8.5 months of age. For a

long time, any oral feeding resulted in aspiration, so feeding therapy was

an on again, off again thing.

One thing Sheryl might want to ask the therapist about is Beckman's oral

motor exercises. We used these before each feeding session, and they greatly

helped with Bran's oral sensitivity.

When Bran first started off on finger foods, we used things that were easily

dissolvable like soft cheese curls, or crackers, and Bran's feeding

therapist taught him how to " nibble " . This involves only the front teeth. We

worked on chewing later.

To encourage self-feeding, we did buy Bran his own set of dishes and

silverware. Bran's feeding sessions were done at least an hour before the

family meal. Then we would put him in his high chair, give him a small bowl

with a favorite Stage 2 food in it, and his spoon. We would also put a

couple of cheese curls on his tray.

Whenever he played with the food, we would praise him. If he played with the

spoon in the food, we praised him. If he dumped the food on his tray, and

wrote in it with his fingers, he was praised. If he touched the spoon, or

his food-coated fingers, to his mouth, we would all clap and cheer him on. I

know it sounds extreme (I've never had to work with an orally averse child

before) but it seemed to help.

At 4 yrs old, Bran no longer has feeding therapy. He sits at the table at

least 4 times a day, when he's with me. For breakfast I offer him a small

amount of Cheerios with milk, some dry Cheerios, and his glass of water. I

offer a Stage 2 jar of cereal and fruit if he won't eat the other foods. For

lunch he gets 1/2 a sandwich, some chips, and a slice of whatever fruit we

have. I offer a Stage 2 jar of meat and veggies if he won't eat the finger

foods. We always sit down for an " after school " snack. For dinner he's given

a little of everything we're having (ie- some meat, a veggie, and a starch)

If he doesn't eat any of that, then I offer him a Stage 2 food, or a

container of applesauce or yogurt.

The biggest difference between Bran and Dalia is that Bran is on continuous

g-tube feeds, so we have a back up. If he doesn't eat orally, he is still

getting calories. And Dalia is ahead of Bran in the texture category! He

still gags violently on anything with bits or pieces in it!!

One of the hardest things for me to accept was that the " rules " HAVE to be

different for an orally averse child. You can't stick with things that

worked for children that liked to eat, but were just " picky " . You can't just

say " Fine, if you don't want to eat, then no snack " . Bran really couldn't

care less if he got a snack or didn't! LOL

Hope this helps some. It's a VERY frustrating and LONG process!! I would

encourage self-feeding, but if the only way you can gets calories in, is to

sit and feed her, I would continue feeding her. One advantage Sheryl has is

Hanna. Sooner or later, sibling competition will raise it's head, and Dalia

will want to " out do " her little sister. Bran always eats more when his

cousin Aidan is here.

HUGS for you and yours!

Pat (g-ma to , RSS, 4 yrs old, G-Tube, GHT)

[Guest guest]

-------------- Original message ----------------------

Hi Pat - I've read your e-mail with awe and admiration. You are a wonderful

grandma and I can only hope that I'm half as good and capable. From reading

what you have to say, I can now get a better understanding of what's going on.

In many ways, we're very lucky that Dalia does eat - maybe not as much as other

children, but apparently enough for right now. We'll keep working with the

feeding therapist and use some of the suggestions we got from you and others.

Maybe one day we'll all sit down at the table and watch her eat a meal all on

her own.

Again, thanks so much for " talking " to me. Happy New Year to you and everyone

in this group.

Judi, Grandma to Dalia and Hanna

[Guest guest]

Hey Judi,

Thank you so much for the compliments! 's first year was SO hard that

we developed a " team " approach to his care. It was just too much for one

person to handle all alone. Along with helping with his daily care, I did

the majority of the research into RSS and it's treatments. Attending the

Convention, and reading this list serve, went a LONG way in helping me learn

as much as I know!

Sheryl is going to need all the help and support she can get right now. Most

two-year olds have a sudden drop in appetite, and eat far less than they

were willing to even a year ago. It can be frustrating with a " normal "

child, and it can drive you insane when you have a child that already has an

eating problem, and needs to gain weight. I think it's wonderful that she

has you to turn to!

Take and I hope we can chat again soon!

Pat (g-ma to , RSS, 4 yrs old, G-Tube, GHT)

PS - I am also mom to -25 (Aidan's mom), athan-23 ( and

Austin's dad), -19 and Kaity-16. And G-ma to Aidan-5 and Austin-1

[Guest guest]

-------------- Original message ----------------------

Hi Pat - It's really good to know that we're not alone in this. Whoever heard

of RSS before they have an RSS child? I'm learning as much as I can too. I

know Sheryl has done hours and hours of research and keeps on top of everything.

She's so smart and very responsible about everything she does. Dalia and Hanna

are lucky to have her as their mom. All of our family have made themselves

available to help and do whatever we can to help. That's the reason I'm on this

site - so I can hopefully learn more and then be able to deal with the issues

that come up.

Anyway, have a great evening and I'll talk to you soon.

Judi