Re: oral feeding

[Guest guest]

Michele,

That is so great that Aubrie is doing so well. I hope she continues on this

path. I will be praying for you guys. Saleah's taken a step back with her

feedings. We're back on the tube because she's been throwing everything up

from the bottle. ( Then last night she even started spitting up the tube

feedings. So now I don't know what to do. She's able to keep some of it

down, just not the whole thing. She goes to her ped tomorrow and we're going

to cancel her surgery for Tuesday. I don't feel comfortable with going

through with it right now. She's been sick for an entire month with various

things and I would rather give her a little more time to feel better.

Again, congratulations on the oral feeding.

Kim

mom to Devin 7 3/4 yrs. and Saleah 6 mo. (CHARGE)

[Guest guest]

Michele,

Thanks for the wishes with the feeding. I'm so glad that Aubrie is doing so

well. I hope this ends soon too. I got used to not using the tube and now it

feels strange.

Devin is going with my sister today to see the Rugrats. I'm so jealous. I

wanted to see it, but the circumstances won't allow it right now (my mom's

working a lot of hours - so I hate to ask her to babysit Saleah especially

when she's sick too).

Luckily Devin has not been teased yet. I wait for the day. We actually did

have to deal with something over the summer. One of Devin's friends who lives

by us has Erbs Palsy (?spelling) and they were playing and some other friends

of Devins started to make fun of her because she cannot straighten her one arm

out all the way. Devin got really mad and came in and told me about it and I

went outside and the little girl had gotten so upset that she had gone home

and I started talking with the other kids about it and I had the baby with me

and they all love her to death. I asked them why they had started to make fun

of the little girl and they said, because she doesn't straighten her arm out

and I asked them if they would make fun of Devin's little sister because she

doesn't hear or because she can't take a bottle? You should have seen the

looks on their faces. They had no idea there was anything wrong with her.

They said " We would never make fun of HER " , I tried to explain to them it's

the same thing. They were both born with something that they cannot get rid

of and just because God made them this way doesn't mean that they're any

different - they still have feelings too. I hope it made a difference. I

think that kids don't get taught this stuff at home and when they see someone

who's different (whether it's a disability, the color of their skin, the

clothes they have on, whatever) they don't understand it so they make fun of

it. It's sad, but very true. Well, I could go on for hours about this. It's

something that is so frustrating to me because I have taught Devin that all

people are different than one another in one way or another but they still get

their feelings hurt if you say bad things. And if you feel you have to say

something bad then don't say anything at all. So far he's listened to me

about that.

Well, you take care and hopefully Devin will like the Rugrats as much as

did.

Kim

mom to Devin 7 3/4 yrs. and Saleah 6 mo. (CHARGE)

[Guest guest]

Kim-

Sorry to hear about Saleah's setback! I hope it's just the combination

of her recent illnesses. Knock-on-wood, we haven't had one of those

bouts of vomiting that's " just a virus " . I was getting real tired of

hearing that! I hope you get some answers and Saleah bounces back

quickly!

I was thinking of you Fri when we saw the Rugrats movie. It was

darling! loved it! I think it was perfect timing for us. He

came away feeling free to love and protect Aubrie because that's what

Tommy did for baby Dill. I'll bet Devin would like it too.

got teased for the first time last week -- about Aubrie I mean.

Some kid was teasing him cuz she has big ears. It made it so mad! Has

Devin had to deal with that yet?

Michele

mom to Aubrie (11.5 mos) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

Kim-

I hope Devin does like the movie. From your story about his friends, he

sounds like a very sensitive boy who is ready for anything. It's funny

because doesn't get so upset if someone teases him, but he sure

wants to protect his little sister. I got a poem from our EI parent

liason about kids' accepting special kids. I'll send it in a separate

post. I think you'll like it. Do you have any other respite services

for Saleah besides your family? I have been fortunate to get nursing

thru the Dept of Rehab. Services but I'm nervous about her annual

reeval. I don't know what we'll do when she doesn't qualify anymore.

Hopefully by then she'll be eating normally and her developmental delays

will be the only consideration for a regular babysitter.

Hang in there. You were off the tube for awhile so you can be confident

that those skills will return. It's just a matter of when.

Michele

mom to Aubrie (11.5 mos) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

Michele

That's so great about Aubrie feeding, I'd give anything just for a

spoonful! I don't know what to do with Kennedy, the eating is just

nil. I try and all she does is keep it in her mouth and either choke on

it, or lets it run out the side of her mouth. I just wonder if there is

a " moment " when you say okay, my baby is going to be tube fed and you

just give up? Or, do you keep putting yourself through the

disappointment day after day and put her through the choking gagging and

general miserable-ness of it all. *sigh* I wish there were a big book

of answers....

Mom to Kennedy 9 mos old CHARgEr, 9, 7, and wife to Graeme

New Brunswick Canada

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

Kim,

I think that the way you handled the children making fun of your son's friend

was just wonderful. You have eloquently summed up the feelings that I have

about my son. He is my first born. I do not have any older children to play

off of and I know that in the future he will face kids who will make fun of

him and tease him. It breaks my heart to think of it but kids and adults can

be extremely cruel. Especially when they are ignorant about disabled people.

One thing that I saw on t.v. that is not exactly tied to this subject is that

two of the 'magnificent seven' (the sextuplets) have feeding tubes. One thing

that I have learned since Austin was born, was that there are lots of kids

with feeding tubes for lots of different reasons. It makes it a little easier

knowing that there are others in the same boat. We all wish it would go away

but know that it is a long road to go.

Hope your baby gets feeling better soon!

Jacque Clifton

Austin's mom

Rose Hill, KS

[Guest guest]

Hi all,

I don't know if it's 'sextuplets' or 'septuplets' but spell check thought that

'sex' was involved....I guess with 7 kids, it definitely was!!!

Jacque C.

[Guest guest]

-

Boy, I wish someone had the answers to the feeding stuff. With Aubrie,

there were times when I thought it'd never happen and tried to resign

myself to the fact that she was tube-fed and it was ok. But it was hard

to think that way. It's really hard to let go of the hope that your

child will eat. I guess the tricky part is that you don't want to give

up hope because you need it to keep pushing til it finally does happen.

The hard part is how hard and when to push.

Saleah was an inspiration to me. She made me realize that it was

possible for a CHARGEr to eat in infancy. Fortunately, Aubrie has made

somewhat steady progress so that we never lost hope for long.

Does KK have swallowing and aspiration problems? That would certainly

change your approach. Is she getting regular feeding/speech therapy?

Your therapist should be guiding you along the way to keep the oral

motor skills developing and to know when to jump in with food.

This recent development with Aubrie was just on a hunch. I don't really

know why we decided to go for it. Today she hasn't eaten as well as I'd

hoped. There's still the chance that we'll have to go back to the tube

and try this again in a month or so. But then I think of Jack who is

doing ok without a tube. If he can grow and survive, then surely Aubrie

can too.

I'm with you -- I wish there was a big book with all the steps laid out

nice and neat.

Michele

mom to Aubrie (11.5 mos) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

Michele,

I think Kennedy has trouble swallowing <we've never done a swallowing

test with her>, she chokes alot so I guess that's a problem. She was

aspirating before the fundo when she was refluxing, but I don't know if

she still is. As for regular feeding/speech appts....HA HA! I got in

to the feeding team in June, and my next appt is December 14th. They

really didn't help much when I did go becuase they didn't want to take

her on as a patient because of the reflux. They told me to do lots of

mouth play, etc, etc. Well, she isn't orally defensive, you could put 3

jars of baby food in her mouth I'm sure, and she just will store it

there, then choke or let it run out the side of her mouth. Oh well,

maybe they'll enlighten me at my Dec. appt... I hope so, we probably

won't be able to get back in for an appt until next June.

Mom to Kennedy 9 mos old CHARgEr, 9, 7, and wife to Graeme

New Brunswick Canada

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

-

That's incredibly frustrating about your speech team. Now that your

remind me, I do remember when you had that appt in June. When Aubrie

was accepting toys into her mouth but gagging on food, we just kept at

it bit by bit. As I understand it, the gag area in their mouth is back

on the tongue where only food can get. We can't desensitize it with

toys and oral play. The only way for the area to get desensitized is by

food going down and the gag slowly diminishing. Aubrie just kept making

progress... 2 steps forward, one step back... slow but sure... but

progress. I remember when just putting the spoon to her lips made her

gag. Then she could take just a tiny bit off the tip of the spoon and

swallow it. It was a great accomplishment when she took just one bit

successfully. Then she got to be able to take a whole medicine cup full

but it was by teenytiny bites. It would take half an hour for 2 TB. It

just kept going up from there.

So my experience says that if she's not aspirating you should keep up

with just a tiny bit of food here and there til she manages it. My

speech therapist always stressed " short and positive " experiences. So

if Aubrie threw up during feeding, we made sure to give her just a teeny

taste on her lips to end the experience on a good note.

Maybe some of this will help with Kennedy. It's a shame that you are

having to go it alone.

Michele

mom to Aubrie (11.5 mos) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

Michele Westmaas wrote:

>

>

>

> Just had to share our latest progress with you guys. Aubrie is almost

> totally oral during the day!!!!!!!!! Last Wed, I stopped topping off

> her oral feeds with the tube. She began taking more orally. We haven't

> used the pump during the day since then. At the last meal of the

> evening, I give her formula by gravity if she hasn't eaten a whole meal

> orally. Her tube feedings were 150cc and she's been eating 120-135cc

> orally. I am so thrilled!! Yesterday, we went shopping and I just took

> bibs, baby food, and spoons. (Of course, I had the tube feeding stuff

> just in case.) But even in a strange environment, she ate so well!

> She's finishing an oral meal in about 30 min or so. Just shoveling it

> in with little coaxing. It is so amazing. If we hadn't just tried it,

> we'd still be struggling the way we were last week. We just decided to

> give it a whirl because it seemed like she was ready. The way we were

> doing it, she ate orally then I tube fed whatever volume she didn't

> take. Then before you knew it, it was time to eat again and she just

> wasn't that hungry.

>

> It felt so " normal " to feed her all day without that stinkin' tube! I

> just knock on wood and hope that it keeps up and her weight stays

> stable.

>

> Oh, and congrats on the first steps and first teeth!!

>

> Michele

> mom to Aubrie (11.5 mos) CHargE and (7 yrs)

> IL

> westml@...

>

> ------------------------------------------------------------------------

>

[Guest guest]

Michele Westmaas wrote:

>

>

>

> -

> That's incredibly frustrating about your speech team. Now that your

> remind me, I do remember when you had that appt in June. When Aubrie

> was accepting toys into her mouth but gagging on food, we just kept at

> it bit by bit. As I understand it, the gag area in their mouth is back

> on the tongue where only food can get. We can't desensitize it with

> toys and oral play. The only way for the area to get desensitized is by

> food going down and the gag slowly diminishing. Aubrie just kept making

> progress... 2 steps forward, one step back... slow but sure... but

> progress. I remember when just putting the spoon to her lips made her

> gag. Then she could take just a tiny bit off the tip of the spoon and

> swallow it. It was a great accomplishment when she took just one bit

> successfully. Then she got to be able to take a whole medicine cup full

> but it was by teenytiny bites. It would take half an hour for 2 TB. It

> just kept going up from there.

>

> So my experience says that if she's not aspirating you should keep up

> with just a tiny bit of food here and there til she manages it. My

> speech therapist always stressed " short and positive " experiences. So

> if Aubrie threw up during feeding, we made sure to give her just a teeny

> taste on her lips to end the experience on a good note.

>

> Maybe some of this will help with Kennedy. It's a shame that you are

> having to go it alone.

>

> Michele

> mom to Aubrie (11.5 mos) CHargE and (7 yrs)

> IL

> westml@...

>

>Michele,

WOW, I never realized exactly how severe a childs reactions or gag

reflex could be. Sounds like you both have come a long way, probably

because you didn't give up. CHEERS to you.

Jeanie Colp

mom to MacKenzie 5 mths. CHARGE, Tyler 7, & Zachary 4

Nova Scotia, Canada

------------------------------------------------------------------------

>

[Guest guest]

Michele,

Well done with Aubrie's oral feeding. You must be so pleased and hopefully you

will be able to do away with the tube soon.

Jack eats and is putting on weight(slowly) but feeding is still such a

struggle. I just wish that he would actually attempt to munch his food but he

doesn't. I put it in his mouth and he swallows it without even attempting to

chew it. I have been giving him very small lumps but he doesn't try to chew

them either. They just get swallowed over and he usually gags and brings it

back up. I have stopped with the lumps for now but will try again soon . Jack

still won't bring anything to his mouth not even his own hands. He only ever

grabs the spoon to push it away and would never dream of helping to put it in

his mouth. He also holds his cup and shakes it up and down but the last thing

on earth he would think of doing with it is to take a drink. We are still

working with his tactile defensiveness and I use the Nuk gum massage brushes

every day but he is still not happy having anything in his mouth. I thought

that when he started teething he would maybe start mouthing and chewing his

toys but I guess that was just wishful thinking.

At what age did any of the other CHARGErs start putting things in their mouth?

I'm hopeful that he will do it. It's such a simple, natural thing for a baby

to do and I feel that Jack is missing out on so much because of this. Sorry to

go on about this as I know things could be so much worse and at least he does

eat.

P.S When is Aubrie's birthday?

Elaine mum to Elise(6yrs) & Jack(16 1/2mths)CHaRGE

Dumfries, Scotland

[Guest guest]

Elaine-

I can tell you are very frustrated by Jack's oral defensiveness. I hope

some of the others have helpful input. Aubrie's always enjoyed mouthing

toys. It seems like it's been a long road getting her to eat, but I

realize it's been very short compared to what others are going (or have

gone) through.

Aubrie's birthday is Nov. 29th. I can't believe it's been a year

already! I'm so glad we're in an " up " time or else this could be a very

depressing time. She's having a little burst in development just when I

need her to:-)

Bye for now!

Michele

mom to Aubrie (1 yr next week) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

bill matasker wrote:

>

>

>

> I try and all she does is keep it in her mouth and either choke on

> > it, or lets it run out the side of her mouth. I just wonder if there is

> > a " moment " when you say okay, my baby is going to be tube fed and you

> > just give up? Or, do you keep putting yourself through the

> > disappointment day after day and put her through the choking gagging and

> > general miserable-ness of it all. *sigh* I wish there were a big book

> > of answers....

> >

>

> ,

>

> My thoughts on oral feeding...

>

> , who is 18 mths, has made great progress. From being almost

> dead at 3 mths from severe aspiration pnemonia, to being this full of

> life little boy who is happy, smart, active etc., is a miracle to me. I

> look at him and say, please, just eat. But as you know, it is not that

> simple. , has gone through 2 Nissens, a repaired diaphram,

> pyloraplasty etc and eating is not a " joy " for him. However, he is

> becoming a big little boy. Now, 25 lbs, 33 inches in the 25 percentile,

> I think the tube is a blessing. It has also given us the opportunity to

> work on oral feeding and letting him enjoy it without worrying and

> struggling for calories. He is getting the nutrients he needs to

> develop which is more important right now than actually eating by mouth.

> He is making progress with oral feeding but they are at his pace. If we

> push he'll become frustrated, if we let him enjoy and feel food and play

> with it he progresses. He now takes 20 dry spoons of nothing and then 2

> tastes of something 3 times a day. He also loves to feed me! He accepts

> a spoon readily, no forcing (which is very very important). He has come

> a long long way and we have only gotten this far. It is very

> frustrating. It is getting better and easier, so be patient, very

> patient, Kennedy will get there. Remember, even though we want to

> compare kids, none of our kids is really the same, even with this

> syndrome. Some kids are older and can't communicate, my son has 30

> words already and can sign 2 word phrases (but he can't eat). They all

> meet different milestones at different times. Hang in there!

>

> Debbie Matasker mom to 18 mths w/CHARGE, 4

>

>Dear Debbie,

What exactly was 's diaphram repaired for? MacKenzie has a

hemi-paralysis of her left diaghram, which apparently makes her a poor

candidate for a Nissen, which is unfortunate considering her severe

reflux.

Jeanie Colp

mom to MacKenzie 6 mos.CHARGE, Tyler 7, & Zachary 4

Nova Scotia, Canada

------------------------------------------------------------------------

>

[Guest guest]

JMurraybel@... wrote:

>

> From: JMurraybel@...

>

> Michele,

> Well done with Aubrie's oral feeding. You must be so pleased and hopefully you

> will be able to do away with the tube soon.

> Jack eats and is putting on weight(slowly) but feeding is still such a

> struggle. I just wish that he would actually attempt to munch his food but he

> doesn't. I put it in his mouth and he swallows it without even attempting to

> chew it. I have been giving him very small lumps but he doesn't try to chew

> them either. They just get swallowed over and he usually gags and brings it

> back up. I have stopped with the lumps for now but will try again soon . Jack

> still won't bring anything to his mouth not even his own hands. He only ever

> grabs the spoon to push it away and would never dream of helping to put it in

> his mouth. He also holds his cup and shakes it up and down but the last thing

> on earth he would think of doing with it is to take a drink. We are still

> working with his tactile defensiveness and I use the Nuk gum massage brushes

> every day but he is still not happy having anything in his mouth. I thought

> that when he started teething he would maybe start mouthing and chewing his

> toys but I guess that was just wishful thinking.

> At what age did any of the other CHARGErs start putting things in their mouth?

> I'm hopeful that he will do it. It's such a simple, natural thing for a baby

> to do and I feel that Jack is missing out on so much because of this. Sorry to

> go on about this as I know things could be so much worse and at least he does

> eat.

> P.S When is Aubrie's birthday?

>

> Elaine mum to Elise(6yrs) & Jack(16 1/2mths)CHaRGE

> Dumfries, Scotland

>

> ------------------------------------------------------------------------

>

[Guest guest]

In a message dated 11/22/98 6:57:36 PM Eastern Standard Time,

gweir@... writes:

<< I just wonder if there is

a " moment " when you say okay, my baby is going to be tube fed and you

just give up? Or, do you keep putting yourself through the

disappointment day after day and put her through the choking gagging and

general miserable-ness of it all. >>

,

Our " moment " came when Destiny had a video fluoroscopy. We went through all

the choking and gagging for almost 9 mos--including asthma problems and

pneumonia--before the microaspiration was discovered. It certainly explained

all the respiratory problems! We were told to stop feeding her orally. That

was the best news I had heard in a long time. Oral feedings were so stressful

I was relieved to stop them. It took years to get her to eat again, but now we

could take it at her pace and lose the stress. At almost 6 years old she is

50% oral (a little more since she is gaining weight again) and I'm fine w/

that. I can still vividly remember the horror of the early oral feeds and I

would rather Destiny be tube fed for the rest of her life than to go back to

that.

I guess what I'm saying is try to relax. I know it is hard, but Kennedy will

" get it " when she is ready. I think you guys have had a video fluoroscopy,

right? Kennedy has been cleared for oral feeding? One of the best things we

did for Destiny was to give her the chance to like food on a personal level

not necessarily w/ her mouth. We put what ever we were eating on her tray and

let her play w/ it w/ her hands. It took months before she would touch it. We

started w/ something easy like crackers and moved up to " mushy " stuff as she

became more comfortable. The oral motor therapist said she had to like food

before she would eat it. Getting the tube at 11 1/2 months really took the

pressure off. Even now, we don't push her. If she wants to eat, fine. If she

is too tired or not interested, fine also. We have the tube and know she will

get her nutrition no matter what.

Hope this helps. We all have walked in your shoes. Hang in there!

(Destiny 6 next month CHARgE, Zachary 3 1/2)

Staten Island, NY

[Guest guest]

,

We haven't had a video flouroscopy done on Kennedy, just through her g

tube and down the OG tube before she had her g tube. I wonder if we

should have one done. Another question for the ol' pediatrician on

Wednesday...

Mom to Kennedy 10 mos old CHARgEr, 9, 7, and wife to Graeme

New Brunswick Canada

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716