Thoughts about Feedings/Nutrition - my turn to vent - long

September 22, 2005

I've been reading here and there questions and comments about

feeding an nutrition therapies, nutritionists, etc....

I would like to throw my thoughts and opinions out there for anyone

else who might be interested or have an opinion as well........

As we all can be, I'm incredibly frustrated with nutritionists. I

have to be honest. I have not found a nutritionist that I felt

really helped. I mean, I did receive great advice from our

nutritionists at Easter Seals and would highly recommend her in the

future for anyone else....BUT.... has it really improved much? Not

when my child chooses not to eat what is suggested! We have this

new nutritionisthere in Virginia and she has no better ideas than

what I'm already doing!

But, that brings me to a good point. It's so darn hard to figure

out in my mind what is the right weight for our children - I still

am having a hard time deciding what is right on how to feed our

children. In other words.....the debate in my head is....if an RSS

child is SUPPOSED to be a certain weight - then let them be that

weight and continue what we are doing. I'm not making any sense - I

know - because I'm supposed to figure out the weight to height

ratios - but, if we have no clue what the " correct " height for our

child is - how do we know what their weight should be?

Time and time again - I go through this in my head. Feeding tube,

or not. I keep being told by many physicians (except his GI) Ian is

okay. But, when I keep putting size 3 diapers on him, size 6-12

month shorts (that are falling down) - what does this mean? Well,

he has grown - believe it or not - 1 1/2 inches since the

convention - which is great! But, then I feel guilty because I

think - Okay Ian - stop getting taller or I'm not going to be able

to give you the growth hormone! There - I SAID it out loud. Not

sure I feel better admitting that to anyone - actually I feel

incredibly vulnerable right now (that cancel button is looking good

about now).

I have such good days. Then I have difficult weeks like this week.

I'm going to schedule a weight check for Ian next week. I'm going

to call the GI doc this afternoon. The Records department this

afternoon are getting a phone call too.

Must be getting my period soon. LOL (I can see you laughing now

Deb - LOL)

- H

September 22, 2005

I feel your confusion and frustration in this email; but you did

manage to make me smile at the end.

OK disclaimer....my home email is NOT working today so I am on the

Yahoo site reading and responding and this THING doesn't do spell

check (so now you all are going to find out why Debby actually

TEACHES special ed.!!!)

, do you think someone would actually say Ian can't have GH

because he's getting too tall? I don't know. Can you compare him to

the " normal " growth charts? Where does he fall? Adam was always miles

below the 0 percentile so I never thought of it. I would think *if*

someone tried to tell you that he was " too tall " you could counter

with muscle tone and muscle development as a need. I don't know, you

raise such an interesting point. Who do you think will say " no " ? I

thought you guys were with Dr. H. and I wouldn't think she'd say NO

especially if she has already given you a RSS diagnosis. The other

thing is that you could plead the case that he may be " tall " now, but

that doesn't guarentee he is going to keep up that growth pace as he

gets older. Adam only started to really slide off the scales after

the age of 2. How old is Ian again? Sorry I don't have my mind

wrapped around things, writing from the Yahoo site is throwing me off.

Now Dr. Debby wants you to find that bottle of wine, have a glass,

kick off the high heels and tell yourself " I am one awesome mom and I

am doing the best and I have to just let some things go, I can't

control everything that happens " . You are doing so well with what you

have had to cope with, and try to take it one day at a time (will he

get GH or not? That's a worry for another day).

If all else fails you can clean the house to take your mind off of it

LOL I'm sorry I couldn't resist, (I'm just being silly, you know I

can relate!)

Take care eh? And for anyone out there that wanted to email me

privately or has done so today....I can't read private emails. You

could send to debby.baillargeon@ tcdsb.org That's all I can read

tonight. (LOL watch no ONE will email me!)

, you are awesome and don't forget that. And the most

important thing?? NO matter what is tossed at you, you keep your

humour (even in this email!! YOu inspire me!)

Deb

> I've been reading here and there questions and comments about

> feeding an nutrition therapies, nutritionists, etc....

>

> I would like to throw my thoughts and opinions out there for anyone

> else who might be interested or have an opinion as well........

>

> As we all can be, I'm incredibly frustrated with nutritionists. I

> have to be honest. I have not found a nutritionist that I felt

> really helped. I mean, I did receive great advice from our

> nutritionists at Easter Seals and would highly recommend her in the

> future for anyone else....BUT.... has it really improved much? Not

> when my child chooses not to eat what is suggested! We have this

> new nutritionisthere in Virginia and she has no better ideas than

> what I'm already doing!

>

> But, that brings me to a good point. It's so darn hard to figure

> out in my mind what is the right weight for our children - I still

> am having a hard time deciding what is right on how to feed our

> children. In other words.....the debate in my head is....if an RSS

> child is SUPPOSED to be a certain weight - then let them be that

> weight and continue what we are doing. I'm not making any sense -

I

> know - because I'm supposed to figure out the weight to height

> ratios - but, if we have no clue what the " correct " height for our

> child is - how do we know what their weight should be?

>

> Time and time again - I go through this in my head. Feeding tube,

> or not. I keep being told by many physicians (except his GI) Ian

is

> okay. But, when I keep putting size 3 diapers on him, size 6-12

> month shorts (that are falling down) - what does this mean? Well,

> he has grown - believe it or not - 1 1/2 inches since the

> convention - which is great! But, then I feel guilty because I

> think - Okay Ian - stop getting taller or I'm not going to be able

> to give you the growth hormone! There - I SAID it out loud. Not

> sure I feel better admitting that to anyone - actually I feel

> incredibly vulnerable right now (that cancel button is looking good

> about now).

>

> I have such good days. Then I have difficult weeks like this

week.

> I'm going to schedule a weight check for Ian next week. I'm going

> to call the GI doc this afternoon. The Records department this

> afternoon are getting a phone call too.

>

> Must be getting my period soon. LOL (I can see you laughing now

> Deb - LOL)

>

> - H

September 22, 2005

Deb - you know what? You brought tears to my eyes - you know why?

Because beneath that exterior silliness - you are so smart,

thoughtful, and incredibly sweet - of course, there is still room

for silliness.

Thank you.

To answer your questions......I was told by Dr. H at the convention

that Ian could start GH once his gv reaches 50%(?) or below. So, I

guess I'm wondering when he will ever reach that - if he continues

to keep growing without GH. I would say he's 60% of the time below

the 3rd percentile for height, 30% on the 3rd, and 10% on the 5th.

So, he's all over the place (obviously, I'm not a math person so my

percentages are probably incredibly inaccurate). I really need to

sit down and plot him out with accurate measurements so I know where

he's at. Then, I need to figure out his GV before I start getting

all goofy. His weight has not reached the 3rd percentile ever that

I can recall - maybe when he was infant up until about 6 or 8 months

when things started falling apart.

Okay - now that I just reminded myself what I need to do - I guess I

know what my priorities are for next week!

My boys and I are on the couch watching Winnie The Pooh's Heffalump

movie. It's a great movie the first 50 times - it's incredibly

annoying all the times after! LOL You know, I made Ian piglet for

Halloween the last two years. I decided I better change his costume

this year!

I was playing in the playroom with the boys and Ian bit

tonight for the first time. I put him in time out - in his room (he

can't reach the door knob yet to open the door LOL) - I normally

only leave him in there for a minute - but, I made it 4 this time -

and oh did he cry. He was so pitiful. I opened the door and he

said " I Missed you Mommy " - and he curled up into my lap. Talk

about feeling sorry for someone........but, I held my own and made

him apologize to . Ian gave Xander a kiss on the nose.

Wine and Heels - you crack me up! LOL

- Thank you. - H

> > I've been reading here and there questions and comments about

> > feeding an nutrition therapies, nutritionists, etc....

> >

> > I would like to throw my thoughts and opinions out there for

anyone

> > else who might be interested or have an opinion as well........

> >

> > As we all can be, I'm incredibly frustrated with nutritionists.

I

> > have to be honest. I have not found a nutritionist that I felt

> > really helped. I mean, I did receive great advice from our

> > nutritionists at Easter Seals and would highly recommend her in

the

> > future for anyone else....BUT.... has it really improved much?

Not

> > when my child chooses not to eat what is suggested! We have

this

> > new nutritionisthere in Virginia and she has no better ideas

than

> > what I'm already doing!

> >

> > But, that brings me to a good point. It's so darn hard to

figure

> > out in my mind what is the right weight for our children - I

still

> > am having a hard time deciding what is right on how to feed our

> > children. In other words.....the debate in my head is....if an

RSS

> > child is SUPPOSED to be a certain weight - then let them be that

> > weight and continue what we are doing. I'm not making any

sense -

> I

> > know - because I'm supposed to figure out the weight to height

> > ratios - but, if we have no clue what the " correct " height for

our

> > child is - how do we know what their weight should be?

> >

> > Time and time again - I go through this in my head. Feeding

tube,

> > or not. I keep being told by many physicians (except his GI)

Ian

> is

> > okay. But, when I keep putting size 3 diapers on him, size 6-12

> > month shorts (that are falling down) - what does this mean?

Well,

> > he has grown - believe it or not - 1 1/2 inches since the

> > convention - which is great! But, then I feel guilty because I

> > think - Okay Ian - stop getting taller or I'm not going to be

able

> > to give you the growth hormone! There - I SAID it out loud.

Not

> > sure I feel better admitting that to anyone - actually I feel

> > incredibly vulnerable right now (that cancel button is looking

good

> > about now).

> >

> > I have such good days. Then I have difficult weeks like this

> week.

> > I'm going to schedule a weight check for Ian next week. I'm

going

> > to call the GI doc this afternoon. The Records department this

> > afternoon are getting a phone call too.

> >

> > Must be getting my period soon. LOL (I can see you laughing

now

> > Deb - LOL)

> >

> > - H

September 22, 2005

HEATHER

You just made my night! I have so much anxiety right now, I have yet to

email to anyone (on list or off) what I am currently dealing with in regards

to Adam's new teacher (besides that he is stuck on stupid) and it's weighing

heavily on me this evening.I just finished talking to a colleague at the

school who gave me some good advice........I know how Jodi feels.......I

just feel so overwhelmed at times.......so I am glad that I could provide

some positive vibes to you. You just did for ME what I hope I DID for you.

And, by the way, I meant every single word and don't forget that.

Can I brag?? I have volunteered to be the " adjunct professor " attached to

our main university. In other words I evaluate and provide guidance to

people assigned to our school who are learning to be teachers. I have always

wanted to do this and am glad to do it. Unfortunately I have been so swamped

with the principal's work!!!!!!----anyway my " gals " were in today (there is

3) and they have a major assignment due today. Throughout the day I would

return to my room from doing whatever, and there would be another assignment

on my desk. But every one of them put on their title page " To: Mrs. Debby

Baillargeon " I don't know if you will appreciate how important that madam me

feel.!! Here are university kids who are writing an assignment TO ME and I

have to mark it!!!! And MY NAME is on the front page. I'm sure that sounds

like 'so what but it made feel so signitificant. Even better?? The girls

won't return until next Wed. so I have a week to mark their work (which is

on average around 20 pages!!!!!! KEENERS!!!!) But I promised them a ton of

feed back.......good and bad. For instance " I like that you........' but you

should include " "

anyway I am rambling. I am touched that could touch you!! are MY inspiration

Deb

Re: Thoughts about Feedings/Nutrition - my turn to

vent - long

> Deb - you know what? You brought tears to my eyes - you know why?

> Because beneath that exterior silliness - you are so smart,

> thoughtful, and incredibly sweet - of course, there is still room

> for silliness.

>

> Thank you.

>

> To answer your questions......I was told by Dr. H at the convention

> that Ian could start GH once his gv reaches 50%(?) or below. So, I

> guess I'm wondering when he will ever reach that - if he continues

> to keep growing without GH. I would say he's 60% of the time below

> the 3rd percentile for height, 30% on the 3rd, and 10% on the 5th.

> So, he's all over the place (obviously, I'm not a math person so my

> percentages are probably incredibly inaccurate). I really need to

> sit down and plot him out with accurate measurements so I know where

> he's at. Then, I need to figure out his GV before I start getting

> all goofy. His weight has not reached the 3rd percentile ever that

> I can recall - maybe when he was infant up until about 6 or 8 months

> when things started falling apart.

>

> Okay - now that I just reminded myself what I need to do - I guess I

> know what my priorities are for next week!

>

> My boys and I are on the couch watching Winnie The Pooh's Heffalump

> movie. It's a great movie the first 50 times - it's incredibly

> annoying all the times after! LOL You know, I made Ian piglet for

> Halloween the last two years. I decided I better change his costume

> this year!

>

> I was playing in the playroom with the boys and Ian bit

> tonight for the first time. I put him in time out - in his room (he

> can't reach the door knob yet to open the door LOL) - I normally

> only leave him in there for a minute - but, I made it 4 this time -

> and oh did he cry. He was so pitiful. I opened the door and he

> said " I Missed you Mommy " - and he curled up into my lap. Talk

> about feeling sorry for someone........but, I held my own and made

> him apologize to . Ian gave Xander a kiss on the nose.

>

> Wine and Heels - you crack me up! LOL

>

> - Thank you. - H

>

> > > I've been reading here and there questions and comments about

> > > feeding an nutrition therapies, nutritionists, etc....

> > >

> > > I would like to throw my thoughts and opinions out there for

> anyone

> > > else who might be interested or have an opinion as well........

> > >

> > > As we all can be, I'm incredibly frustrated with nutritionists.

> I

> > > have to be honest. I have not found a nutritionist that I felt

> > > really helped. I mean, I did receive great advice from our

> > > nutritionists at Easter Seals and would highly recommend her in

> the

> > > future for anyone else....BUT.... has it really improved much?

> Not

> > > when my child chooses not to eat what is suggested! We have

> this

> > > new nutritionisthere in Virginia and she has no better ideas

> than

> > > what I'm already doing!

> > >

> > > But, that brings me to a good point. It's so darn hard to

> figure

> > > out in my mind what is the right weight for our children - I

> still

> > > am having a hard time deciding what is right on how to feed our

> > > children. In other words.....the debate in my head is....if an

> RSS

> > > child is SUPPOSED to be a certain weight - then let them be that

> > > weight and continue what we are doing. I'm not making any

> sense -

> > I

> > > know - because I'm supposed to figure out the weight to height

> > > ratios - but, if we have no clue what the " correct " height for

> our

> > > child is - how do we know what their weight should be?

> > >

> > > Time and time again - I go through this in my head. Feeding

> tube,

> > > or not. I keep being told by many physicians (except his GI)

> Ian

> > is

> > > okay. But, when I keep putting size 3 diapers on him, size 6-12

> > > month shorts (that are falling down) - what does this mean?

> Well,

> > > he has grown - believe it or not - 1 1/2 inches since the

> > > convention - which is great! But, then I feel guilty because I

> > > think - Okay Ian - stop getting taller or I'm not going to be

> able

> > > to give you the growth hormone! There - I SAID it out loud.

> Not

> > > sure I feel better admitting that to anyone - actually I feel

> > > incredibly vulnerable right now (that cancel button is looking

> good

> > > about now).

> > >

> > > I have such good days. Then I have difficult weeks like this

> > week.

> > > I'm going to schedule a weight check for Ian next week. I'm

> going

> > > to call the GI doc this afternoon. The Records department this

> > > afternoon are getting a phone call too.

> > >

> > > Must be getting my period soon. LOL (I can see you laughing

> now

> > > Deb - LOL)

> > >

> > > - H

>

September 23, 2005

Deb,

That is great and you should feel good - what an accomplishment.

B

Deb wrote: