Re: G-tube Autumn - everyone

[Guest guest]

Hi ,

You are definitely having a tough go of things lately. I wish I

could offer sage advice! Emerence does not have a gtube but has

lost weight (1/4 lb) since the convention and no height gain so of

course I worry.

A friend of mine, a wonderful woman I used to work for while at

college, was up to Boston Friday night and we went out. While we

were talking about how I felt I hadn't achieved the great things I

dreamed of when I was younger, she said something that rang a chord

that I want to share will all of us...it was, " I think you do not

see yourself the way others see you and that is a shame " .

Every single one of us is here and doing the very best we can all

the time and being very present for our children no matter whether

they are... RSS, SGA anywhere inbetween, with OCD, ADD, ADHD,

apraxia, with PTs, OTs, STs, endos, genetics, orthos, JG/NG/Gtubing

(or tubeless), nebulizing,ear-tubing, hypo-g-ing, TPNing, never

napping, projectiling, refluxing....and taking care of our other

family members too.

Every day I come here and I see a bunch of people who are think they

are ordinary but do extraordinary things every day here. I feel

like if I came here to free fall I wouldn't get very far. Everyone

here is part of the fabric of a nice big circus net - if someone

falls everyone works to catch them and bounce them back up safely.

None of us are perfect parents but I can't tell you where I've seen

a nicer group of people...and as my friend said " JUST REMEMBER TO

LET YOURSELF SEE YOURSELF IN THE SAME LIGHT THAT OTHERS SEE YOU "

, mom to 5 and Emerence 2.5 22lb 32 "

> Autumn had her GI appt this morning. He wants her to get a G-

tube.

> She weighed in at 16 lbs 14 oz (and has not had a bm in a few days

so

> might be lower) and 29.25 inches at almost 20 mos. I know it's

not

> horrible but she was 15 11 at one year and she has a hard time

with

> weight. She keeps having set backs from being sick and hospitals

etc

> and they think it would be best for her. she does eat on her own,

not

> much, but she likes to eat. Periactin doesn't work for her. Been

on

> it for 9 mos. They want some overnight feeds and access for when

she

> is sick to keep her from gettiong set back adn stuff, but said it

is

> our choice ultamitly. How do I make the right choice? I feel

like a

> failure or like I am not doing enough even though I know it's not

> true, I can't help but feel guilty. What'syour input? Would g-

tube

> be better off than no tube? They don't want to set back her

eating so

> it would be mostly night time and stuff to get about 1 or so cans

of

> peptamin in her.

>

> mom to Autumn,Summer, Ocean and Skye

[Guest guest]

Hi . Thanks for sharing that encouragment. I think we get so

caught up in what we do for our kids, it becomes the norm to us and

never feel like we are doing enough. I was applying for SSI today

for Autumn and Skye and I was reading off endless doctors,

specialists and tests they have had and I thought 'wow, that's why

I've been so busy. I have to agree , I don't know what I would do

without this group to come to. I have never personally met anyone

here, but I have had such great support with everything that has gone

on from Autumns RSS diagnosis, my son Skye's growth/develpmental

probs to my daughter Summers small birth size and

hospitalizations...thank you all. I can't get advice or support like

this anywhere else because most havn't been there done that or

understand. Thanks for all the e-mails you've sent me in the

past few months from the ear tubes to now! I hope Emerence can gain

some weight and height soon!

mom to Autumn RSS almost 20 mos 16 lbs 14 oz, Summer 2 mos

8 lbs 20 inches, Ocean 3, Skye 7

> > Autumn had her GI appt this morning. He wants her to get a G-

> tube.

> > She weighed in at 16 lbs 14 oz (and has not had a bm in a few

days

> so

> > might be lower) and 29.25 inches at almost 20 mos. I know it's

> not

> > horrible but she was 15 11 at one year and she has a hard time

> with

> > weight. She keeps having set backs from being sick and hospitals

> etc

> > and they think it would be best for her. she does eat on her

own,

> not

> > much, but she likes to eat. Periactin doesn't work for her.

Been

> on

> > it for 9 mos. They want some overnight feeds and access for when

> she

> > is sick to keep her from gettiong set back adn stuff, but said it

> is

> > our choice ultamitly. How do I make the right choice? I feel

> like a

> > failure or like I am not doing enough even though I know it's not

> > true, I can't help but feel guilty. What'syour input? Would g-

> tube

> > be better off than no tube? They don't want to set back her

> eating so

> > it would be mostly night time and stuff to get about 1 or so cans

> of

> > peptamin in her.

> >

> > mom to Autumn,Summer, Ocean and Skye

[Guest guest]

- I'm charging in here - what you said was was beautiful. I

hope you are a writer - you have a beautiful way of painting a

picture with your words. You also have great advice.

- H

> > Autumn had her GI appt this morning. He wants her to get a G-

> tube.

> > She weighed in at 16 lbs 14 oz (and has not had a bm in a few

days

> so

> > might be lower) and 29.25 inches at almost 20 mos. I know it's

> not

> > horrible but she was 15 11 at one year and she has a hard time

> with

> > weight. She keeps having set backs from being sick and

hospitals

> etc

> > and they think it would be best for her. she does eat on her

own,

> not

> > much, but she likes to eat. Periactin doesn't work for her.

Been

> on

> > it for 9 mos. They want some overnight feeds and access for

when

> she

> > is sick to keep her from gettiong set back adn stuff, but said

it

> is

> > our choice ultamitly. How do I make the right choice? I feel

> like a

> > failure or like I am not doing enough even though I know it's

not

> > true, I can't help but feel guilty. What'syour input? Would g-

> tube

> > be better off than no tube? They don't want to set back her

> eating so

> > it would be mostly night time and stuff to get about 1 or so

cans

> of

> > peptamin in her.

> >

> > mom to Autumn,Summer, Ocean and Skye