Sharon, and EVERYONE! About -LONG

[Guest guest]

Yah! I am sooo glad you remembered! ) is actually doing

alright right now. I was reading the posts from the last few days

and was into the controversial ones about posting some good things

our kids are doing too. Let me just announce that is WALKING

now. He started right before his 2nd birthday, which was May 23rd.

And let me also say, he is walking like he has done it for months! I

couldn't believe how one day he was scared to take even one step,

then the next day it was six steps, the next it was 20, then that is

ALL she wrote. I haven't been able to keep up with him since! Hee,

hee. He has an IV pole that I have to push right behind him since he

is g tube fed 22 hours out of the day. Yes, I said 22. We went from

23 hours to 22 hours a day. His pediatrician has GRANTED us an extra

hour off to try to feed some REAL food! I am so glad he has

two hours off now, because that one hour a day went faster than you

would believe. Since he is walking now, he can have two hours of

freedom from his stupid pole and us being two steps behind him. As

for the feeding him REAL food......hmmm, not so well, really. He

only wants to take a few bites. Some day he will only take one bite

and say, " All done. " I am like, " What? No way. More bites

please. " He's like, " ALL DONE! " So, it is not going all that well,

but maybe he is still even kinda full after two hours off, since he

is fed the other 22 hours. I don't know. Maybe I am just making

excuses. But, his weight is doing pretty well right now, compared to

his height. He is 28 " long and 18 lbs. 6 oz as of last Tuesday. His

ped. said he was at the 25th percentile for weight vs. height.

Anyone verify that?? ) But, for the most part, has made

HUGE improvements in the last few months, after seeing Dr. H. So, I

owe her BIG time. If you saw a picture of from his last

birthday and compare it to this year, you would not beleive it was

the same kid.

So, my message here today has a little of frustration to it, and a

little of the good news too. I am still VERY annoyed with the tube

feedings, and get down and wonder if my little guy will EVER get away

from it. Especially when he is walking and so happy when he can go

off by himself and not have to worry about getting too far from his

pole. Plus, let me add a little self pity here. It is hard for us

to be there with every step he takes, because we do have another

child and stuff to do around here. So, that brings me to my next

thought/question. Does any one have any suggestions for what I can

do with 's pump and feeding bag to allow him more

independence? I know some of the kids get back packs, but I wonder

if it will be too heavy for him. Pat, I know got one. How

big was he when he got his. Should I email Dr. H and tell her

is walking and see if she could bring him a backpack to the

convention?

So, Sharon, I am sure you are sorry you asked how is

doing! ) I just had so much on my mind, especially after reading

the latest posts, that I guess I went on rambling. Yes, another LONG

post by me! )

Oh yeah, and is talking very well. The thing with him and his

milestones seem to be this. Yes, was one of the RSS kids that

hit his milestones late. Especially gorss motor skills. Like I

said, he wasn't walking until 23 months, but his language skills have

always seemed to be within the range. But, once he got the skill

down, he took it to a whole new level, like he had been doing it for

a while. It just took him some time to get it down. His therapists

are amazed by him each time they see him. They introduce something

new to him he can't do that week, but the next week he is doing it

like an old pro. As for the talking, he is saying things that we

don't say. He just puts words together on his won, and we are

shocked by it.

So, that is my update on . We are still fighting with the bad

weight gain, thus the 22 hour feeds plus trying to feed him orally,

but we are also in the midst of perfection with his talking and

walking. I am so proud that we took him to New York to see Dr. H.

and to see the INCREDIBLE progress he made because of that one trip.

I have to say, it was a VERY frustrating and nerve racking trip, and

I questioned why I went in the first place, but to see him now is a

testament as to why I want to go to convention and see her again. I

am hoping that there will be goods news from her and that she will

also be pleased with his progress. I wish I could express to you all

just how much difference has been made in him. It truly is amazing.

He was one of the RSS kids that had trouble holding up his head.

Shoot, for the longest time his head was HALF his body weight. It

was really unproportionate to his body. After going to New York and

putting on some weight, he was able to hold his own head up and start

seeing the world upright, instead of laying down.

Anyway, I am proud of , and the strides that he has made. I am

sorry this is so long, since I haven't been on here lately I have so

much to tell everyone. I hope you can forgive me with this LONG

post, just this once. I wanted to add some positives and show people

waht a HUGE difference can really happen in our kids. wasn't

diagnosed with RSS until 17 months old, and prior to that, we ad so

many questions, and even wondered what his life was going to be

like. Now I know that he will be fine. Just a few fedding issues,

and weight and height issues to overcome, but he will rteally be

fine. Just like Sharon is! You are such an inspiration. I told you

that before, and I always hoped was going to be fine, too.

And, now I know he will be. He is really on the path to be

a " regular " kid! )

Sorry so long, guys,

Jodi R.

One proud momma

18 lbs. 6 oz., 28 " , Prilosec

[Guest guest]

Jodi,

It was so good to hear an update!! We are finally gettting settled and

maybe we can chat once you do!! I just wanted to say that Alyssa 23 months

and not quite 18 lbs when we left NY with our backpack!! We use the one

from Zevex, because the one from Dr. H was so small we were always getting

flow errors!! She had NO problem!!! Let's talk soon!

Dayna

Sharon, and EVERYONE! About -LONG

> Yah! I am sooo glad you remembered! ) is actually doing

> alright right now. I was reading the posts from the last few days

> and was into the controversial ones about posting some good things

> our kids are doing too. Let me just announce that is WALKING

> now. He started right before his 2nd birthday, which was May 23rd.

> And let me also say, he is walking like he has done it for months! I

> couldn't believe how one day he was scared to take even one step,

> then the next day it was six steps, the next it was 20, then that is

> ALL she wrote. I haven't been able to keep up with him since! Hee,

> hee. He has an IV pole that I have to push right behind him since he

> is g tube fed 22 hours out of the day. Yes, I said 22. We went from

> 23 hours to 22 hours a day. His pediatrician has GRANTED us an extra

> hour off to try to feed some REAL food! I am so glad he has

> two hours off now, because that one hour a day went faster than you

> would believe. Since he is walking now, he can have two hours of

> freedom from his stupid pole and us being two steps behind him. As

> for the feeding him REAL food......hmmm, not so well, really. He

> only wants to take a few bites. Some day he will only take one bite

> and say, " All done. " I am like, " What? No way. More bites

> please. " He's like, " ALL DONE! " So, it is not going all that well,

> but maybe he is still even kinda full after two hours off, since he

> is fed the other 22 hours. I don't know. Maybe I am just making

> excuses. But, his weight is doing pretty well right now, compared to

> his height. He is 28 " long and 18 lbs. 6 oz as of last Tuesday. His

> ped. said he was at the 25th percentile for weight vs. height.

> Anyone verify that?? ) But, for the most part, has made

> HUGE improvements in the last few months, after seeing Dr. H. So, I

> owe her BIG time. If you saw a picture of from his last

> birthday and compare it to this year, you would not beleive it was

> the same kid.

>

> So, my message here today has a little of frustration to it, and a

> little of the good news too. I am still VERY annoyed with the tube

> feedings, and get down and wonder if my little guy will EVER get away

> from it. Especially when he is walking and so happy when he can go

> off by himself and not have to worry about getting too far from his

> pole. Plus, let me add a little self pity here. It is hard for us

> to be there with every step he takes, because we do have another

> child and stuff to do around here. So, that brings me to my next

> thought/question. Does any one have any suggestions for what I can

> do with 's pump and feeding bag to allow him more

> independence? I know some of the kids get back packs, but I wonder

> if it will be too heavy for him. Pat, I know got one. How

> big was he when he got his. Should I email Dr. H and tell her

> is walking and see if she could bring him a backpack to the

> convention?

>

> So, Sharon, I am sure you are sorry you asked how is

> doing! ) I just had so much on my mind, especially after reading

> the latest posts, that I guess I went on rambling. Yes, another LONG

> post by me! )

>

> Oh yeah, and is talking very well. The thing with him and his

> milestones seem to be this. Yes, was one of the RSS kids that

> hit his milestones late. Especially gorss motor skills. Like I

> said, he wasn't walking until 23 months, but his language skills have

> always seemed to be within the range. But, once he got the skill

> down, he took it to a whole new level, like he had been doing it for

> a while. It just took him some time to get it down. His therapists

> are amazed by him each time they see him. They introduce something

> new to him he can't do that week, but the next week he is doing it

> like an old pro. As for the talking, he is saying things that we

> don't say. He just puts words together on his won, and we are

> shocked by it.

>

> So, that is my update on . We are still fighting with the bad

> weight gain, thus the 22 hour feeds plus trying to feed him orally,

> but we are also in the midst of perfection with his talking and

> walking. I am so proud that we took him to New York to see Dr. H.

> and to see the INCREDIBLE progress he made because of that one trip.

> I have to say, it was a VERY frustrating and nerve racking trip, and

> I questioned why I went in the first place, but to see him now is a

> testament as to why I want to go to convention and see her again. I

> am hoping that there will be goods news from her and that she will

> also be pleased with his progress. I wish I could express to you all

> just how much difference has been made in him. It truly is amazing.

> He was one of the RSS kids that had trouble holding up his head.

> Shoot, for the longest time his head was HALF his body weight. It

> was really unproportionate to his body. After going to New York and

> putting on some weight, he was able to hold his own head up and start

> seeing the world upright, instead of laying down.

>

> Anyway, I am proud of , and the strides that he has made. I am

> sorry this is so long, since I haven't been on here lately I have so

> much to tell everyone. I hope you can forgive me with this LONG

> post, just this once. I wanted to add some positives and show people

> waht a HUGE difference can really happen in our kids. wasn't

> diagnosed with RSS until 17 months old, and prior to that, we ad so

> many questions, and even wondered what his life was going to be

> like. Now I know that he will be fine. Just a few fedding issues,

> and weight and height issues to overcome, but he will rteally be

> fine. Just like Sharon is! You are such an inspiration. I told you

> that before, and I always hoped was going to be fine, too.

> And, now I know he will be. He is really on the path to be

> a " regular " kid! )

>

> Sorry so long, guys,

> Jodi R.

> One proud momma

> 18 lbs. 6 oz., 28 " , Prilosec

>

>

>

>

>

>

>

>

[Guest guest]

yay for you and your son! My son (non RSS) didn't walk until 26 months

(hypotonia) and it was so excited! I am smiling ear to ear for you!

, 4.5, Emerence 16 mo 16 lb 11 oz (maybe RSS, SGA)

Sharon, and EVERYONE! About -LONG

Yah! I am sooo glad you remembered! ) is actually doing

alright right now. I was reading the posts from the last few days

and was into the controversial ones about posting some good things

our kids are doing too. Let me just announce that is WALKING

now. He started right before his 2nd birthday, which was May 23rd.

And let me also say, he is walking like he has done it for months! I

couldn't believe how one day he was scared to take even one step,

then the next day it was six steps, the next it was 20, then that is

ALL she wrote. I haven't been able to keep up with him since! Hee,

hee. He has an IV pole that I have to push right behind him since he

is g tube fed 22 hours out of the day. Yes, I said 22. We went from

23 hours to 22 hours a day. His pediatrician has GRANTED us an extra

hour off to try to feed some REAL food! I am so glad he has

two hours off now, because that one hour a day went faster than you

would believe. Since he is walking now, he can have two hours of

freedom from his stupid pole and us being two steps behind him. As

for the feeding him REAL food......hmmm, not so well, really. He

only wants to take a few bites. Some day he will only take one bite

and say, " All done. " I am like, " What? No way. More bites

please. " He's like, " ALL DONE! " So, it is not going all that well,

but maybe he is still even kinda full after two hours off, since he

is fed the other 22 hours. I don't know. Maybe I am just making

excuses. But, his weight is doing pretty well right now, compared to

his height. He is 28 " long and 18 lbs. 6 oz as of last Tuesday. His

ped. said he was at the 25th percentile for weight vs. height.

Anyone verify that?? ) But, for the most part, has made

HUGE improvements in the last few months, after seeing Dr. H. So, I

owe her BIG time. If you saw a picture of from his last

birthday and compare it to this year, you would not beleive it was

the same kid.

So, my message here today has a little of frustration to it, and a

little of the good news too. I am still VERY annoyed with the tube

feedings, and get down and wonder if my little guy will EVER get away

from it. Especially when he is walking and so happy when he can go

off by himself and not have to worry about getting too far from his

pole. Plus, let me add a little self pity here. It is hard for us

to be there with every step he takes, because we do have another

child and stuff to do around here. So, that brings me to my next

thought/question. Does any one have any suggestions for what I can

do with 's pump and feeding bag to allow him more

independence? I know some of the kids get back packs, but I wonder

if it will be too heavy for him. Pat, I know got one. How

big was he when he got his. Should I email Dr. H and tell her

is walking and see if she could bring him a backpack to the

convention?

So, Sharon, I am sure you are sorry you asked how is

doing! ) I just had so much on my mind, especially after reading

the latest posts, that I guess I went on rambling. Yes, another LONG

post by me! )

Oh yeah, and is talking very well. The thing with him and his

milestones seem to be this. Yes, was one of the RSS kids that

hit his milestones late. Especially gorss motor skills. Like I

said, he wasn't walking until 23 months, but his language skills have

always seemed to be within the range. But, once he got the skill

down, he took it to a whole new level, like he had been doing it for

a while. It just took him some time to get it down. His therapists

are amazed by him each time they see him. They introduce something

new to him he can't do that week, but the next week he is doing it

like an old pro. As for the talking, he is saying things that we

don't say. He just puts words together on his won, and we are

shocked by it.

So, that is my update on . We are still fighting with the bad

weight gain, thus the 22 hour feeds plus trying to feed him orally,

but we are also in the midst of perfection with his talking and

walking. I am so proud that we took him to New York to see Dr. H.

and to see the INCREDIBLE progress he made because of that one trip.

I have to say, it was a VERY frustrating and nerve racking trip, and

I questioned why I went in the first place, but to see him now is a

testament as to why I want to go to convention and see her again. I

am hoping that there will be goods news from her and that she will

also be pleased with his progress. I wish I could express to you all

just how much difference has been made in him. It truly is amazing.

He was one of the RSS kids that had trouble holding up his head.

Shoot, for the longest time his head was HALF his body weight. It

was really unproportionate to his body. After going to New York and

putting on some weight, he was able to hold his own head up and start

seeing the world upright, instead of laying down.

Anyway, I am proud of , and the strides that he has made. I am

sorry this is so long, since I haven't been on here lately I have so

much to tell everyone. I hope you can forgive me with this LONG

post, just this once. I wanted to add some positives and show people

waht a HUGE difference can really happen in our kids. wasn't

diagnosed with RSS until 17 months old, and prior to that, we ad so

many questions, and even wondered what his life was going to be

like. Now I know that he will be fine. Just a few fedding issues,

and weight and height issues to overcome, but he will rteally be

fine. Just like Sharon is! You are such an inspiration. I told you

that before, and I always hoped was going to be fine, too.

And, now I know he will be. He is really on the path to be

a " regular " kid! )

Sorry so long, guys,

Jodi R.

One proud momma

18 lbs. 6 oz., 28 " , Prilosec

[Guest guest]

Jodi R.,

is bigger than was when he got his tube and backpack.

He would wear it when he was walking around and when he sat down to

play, he would take it off and just leave it nearby. He learned

very quickly to either drag it with him when he started to move or

to yell for us to come put it back on him lol.

What pump do you have? We use the entralite by Zevex and are very

happy with it.

As for the eating, does he have to be on 22 hour feeds? Could you

maybe increase the rate and do less hours so he is off more? This

only works if he is not on for big hypo-g issues, but for

nutrition. For example, doesn't go hypo-g, but can't eat

enough. He is now on for something like 17 hours per day. What we

are able to do is have him on the pump from 8:30 pm to 6:30 am at 48

ml/hr. He gets 3 hours of formula during the day at 70 ml/hour (we

use the pump during the week with school and on the weekend we

bolus) and 1 70 ml bolus at 8 pm. Of course, it took us a while to

get this far.

Good luck,

Judith, Steve, (RSS) and (non RSS) 4 year old twins

[Guest guest]

,

Thank you for sharing in my joy and excitment. I am so glad to hear

from you, since I don't think we have really " met " . I have been away

for a while due to moving and getting settled into a new home. Plus,

my computer is upstairs now and it is hard for me to get on with

being tube fed and hooked to an IV pole all the time! )

Well, I hope we get to talk more together soon.

Jodi R.

> yay for you and your son! My son (non RSS) didn't walk until 26

months (hypotonia) and it was so excited! I am smiling ear to ear

for you!

>

> , 4.5, Emerence 16 mo 16 lb 11 oz (maybe RSS, SGA)

> Sharon, and EVERYONE! About -LONG

>

>

> Yah! I am sooo glad you remembered! ) is actually

doing

> alright right now. I was reading the posts from the last few

days

> and was into the controversial ones about posting some good

things

> our kids are doing too. Let me just announce that is

WALKING

> now. He started right before his 2nd birthday, which was May

23rd.

> And let me also say, he is walking like he has done it for

months! I

> couldn't believe how one day he was scared to take even one step,

> then the next day it was six steps, the next it was 20, then that

is

> ALL she wrote. I haven't been able to keep up with him since!

Hee,

> hee. He has an IV pole that I have to push right behind him

since he

> is g tube fed 22 hours out of the day. Yes, I said 22. We went

from

> 23 hours to 22 hours a day. His pediatrician has GRANTED us an

extra

> hour off to try to feed some REAL food! I am so glad he

has

> two hours off now, because that one hour a day went faster than

you

> would believe. Since he is walking now, he can have two hours of

> freedom from his stupid pole and us being two steps behind him.

As

> for the feeding him REAL food......hmmm, not so well, really. He

> only wants to take a few bites. Some day he will only take one

bite

> and say, " All done. " I am like, " What? No way. More bites

> please. " He's like, " ALL DONE! " So, it is not going all that

well,

> but maybe he is still even kinda full after two hours off, since

he

> is fed the other 22 hours. I don't know. Maybe I am just making

> excuses. But, his weight is doing pretty well right now,

compared to

> his height. He is 28 " long and 18 lbs. 6 oz as of last Tuesday.

His

> ped. said he was at the 25th percentile for weight vs. height.

> Anyone verify that?? ) But, for the most part, has

made

> HUGE improvements in the last few months, after seeing Dr. H.

So, I

> owe her BIG time. If you saw a picture of from his last

> birthday and compare it to this year, you would not beleive it

was

> the same kid.

>

> So, my message here today has a little of frustration to it, and

a

> little of the good news too. I am still VERY annoyed with the

tube

> feedings, and get down and wonder if my little guy will EVER get

away

> from it. Especially when he is walking and so happy when he can

go

> off by himself and not have to worry about getting too far from

his

> pole. Plus, let me add a little self pity here. It is hard for

us

> to be there with every step he takes, because we do have another

> child and stuff to do around here. So, that brings me to my next

> thought/question. Does any one have any suggestions for what I

can

> do with 's pump and feeding bag to allow him more

> independence? I know some of the kids get back packs, but I

wonder

> if it will be too heavy for him. Pat, I know got one.

How

> big was he when he got his. Should I email Dr. H and tell her

> is walking and see if she could bring him a backpack to the

> convention?

>

> So, Sharon, I am sure you are sorry you asked how is

> doing! ) I just had so much on my mind, especially after

reading

> the latest posts, that I guess I went on rambling. Yes, another

LONG

> post by me! )

>

> Oh yeah, and is talking very well. The thing with him and

his

> milestones seem to be this. Yes, was one of the RSS kids

that

> hit his milestones late. Especially gorss motor skills. Like I

> said, he wasn't walking until 23 months, but his language skills

have

> always seemed to be within the range. But, once he got the skill

> down, he took it to a whole new level, like he had been doing it

for

> a while. It just took him some time to get it down. His

therapists

> are amazed by him each time they see him. They introduce

something

> new to him he can't do that week, but the next week he is doing

it

> like an old pro. As for the talking, he is saying things that we

> don't say. He just puts words together on his won, and we are

> shocked by it.

>

> So, that is my update on . We are still fighting with the

bad

> weight gain, thus the 22 hour feeds plus trying to feed him

orally,

> but we are also in the midst of perfection with his talking and

> walking. I am so proud that we took him to New York to see Dr.

H.

> and to see the INCREDIBLE progress he made because of that one

trip.

> I have to say, it was a VERY frustrating and nerve racking trip,

and

> I questioned why I went in the first place, but to see him now is

a

> testament as to why I want to go to convention and see her

again. I

> am hoping that there will be goods news from her and that she

will

> also be pleased with his progress. I wish I could express to you

all

> just how much difference has been made in him. It truly is

amazing.

> He was one of the RSS kids that had trouble holding up his head.

> Shoot, for the longest time his head was HALF his body weight.

It

> was really unproportionate to his body. After going to New York

and

> putting on some weight, he was able to hold his own head up and

start

> seeing the world upright, instead of laying down.

>

> Anyway, I am proud of , and the strides that he has made.

I am

> sorry this is so long, since I haven't been on here lately I have

so

> much to tell everyone. I hope you can forgive me with this LONG

> post, just this once. I wanted to add some positives and show

people

> waht a HUGE difference can really happen in our kids.

wasn't

> diagnosed with RSS until 17 months old, and prior to that, we ad

so

> many questions, and even wondered what his life was going to be

> like. Now I know that he will be fine. Just a few fedding

issues,

> and weight and height issues to overcome, but he will rteally be

> fine. Just like Sharon is! You are such an inspiration. I told

you

> that before, and I always hoped was going to be fine,

too.

> And, now I know he will be. He is really on the path to be

> a " regular " kid! )

>

> Sorry so long, guys,

> Jodi R.

> One proud momma

> 18 lbs. 6 oz., 28 " , Prilosec

>

>

>

>

>

[Guest guest]

Hey Judith, thank you for the options and ideas on what to do for

. But, the sad part is, right now, he does have to be on the

pump that long. He is SO VERY volume and calorie sensitive that he

can't take much more than what we are giving him right now. His pump

has just recently been upped to 38 cc and hour during the day, and we

do 32 cc at night, and he is struggling to hold that in. He gets so

full and miserable when we try to do too much at once. I have been

wanting to try the bolus, but when I have done it, I usually see it

right back again. We do also have the Zevex pump, though, and are

also happy with it. I just want to find a way for to manage

it on his own. Plus, has had issues with hypo-g, but since he

has been on this schedule (from Dr. H), we haven't had to worry about

it because his body doesn't have a chance to become hypo-g. So, I am

not really sure how long could be off without dropping his

sugar. I guess we will just have to experiment and see? I am going

to see what Dr. H says about him and see if she wants to change his

feeds or schedule in any way. I will keep my fingers crossed that

she will have good news for me so we can try something else.

Thanks again for your suggestions,

Jodi R.

[Guest guest]

Dayna,

Hey, it is good to hear from you too. Hopefully we can get together

and exchange emails again soon. Is your address still the same?

Email I mean!

So, Alyssa can carry the " big " Zevex backpack? I hold it up to

and I don't see how he can do it. It is almost as long as he

is! ) So, the little one Dr. H gave you really didn't work out

for you then? Hmmm, I'll have to try to find a little one. But

then, how do I get the bag to stay upright in one not designed to

hold it??? All these questions and no answers! Hee, hee.

Talk soon,

Jodi

> Jodi,

>

> It was so good to hear an update!! We are finally gettting settled

and

> maybe we can chat once you do!! I just wanted to say that Alyssa

23 months

> and not quite 18 lbs when we left NY with our backpack!! We use

the one

> from Zevex, because the one from Dr. H was so small we were always

getting

> flow errors!! She had NO problem!!! Let's talk soon!

>

> Dayna

>

> Sharon, and EVERYONE! About -LONG

>

>

> > Yah! I am sooo glad you remembered! ) is actually

doing

> > alright right now. I was reading the posts from the last few days

> > and was into the controversial ones about posting some good things

> > our kids are doing too. Let me just announce that is

WALKING

> > now. He started right before his 2nd birthday, which was May

23rd.

> > And let me also say, he is walking like he has done it for

months! I

> > couldn't believe how one day he was scared to take even one step,

> > then the next day it was six steps, the next it was 20, then that

is

> > ALL she wrote. I haven't been able to keep up with him since!

Hee,

> > hee. He has an IV pole that I have to push right behind him

since he

> > is g tube fed 22 hours out of the day. Yes, I said 22. We went

from

> > 23 hours to 22 hours a day. His pediatrician has GRANTED us an

extra

> > hour off to try to feed some REAL food! I am so glad he

has

> > two hours off now, because that one hour a day went faster than

you

> > would believe. Since he is walking now, he can have two hours of

> > freedom from his stupid pole and us being two steps behind him.

As

> > for the feeding him REAL food......hmmm, not so well, really. He

> > only wants to take a few bites. Some day he will only take one

bite

> > and say, " All done. " I am like, " What? No way. More bites

> > please. " He's like, " ALL DONE! " So, it is not going all that

well,

> > but maybe he is still even kinda full after two hours off, since

he

> > is fed the other 22 hours. I don't know. Maybe I am just making

> > excuses. But, his weight is doing pretty well right now,

compared to

> > his height. He is 28 " long and 18 lbs. 6 oz as of last Tuesday.

His

> > ped. said he was at the 25th percentile for weight vs. height.

> > Anyone verify that?? ) But, for the most part, has made

> > HUGE improvements in the last few months, after seeing Dr. H.

So, I

> > owe her BIG time. If you saw a picture of from his last

> > birthday and compare it to this year, you would not beleive it was

> > the same kid.

> >

> > So, my message here today has a little of frustration to it, and a

> > little of the good news too. I am still VERY annoyed with the

tube

> > feedings, and get down and wonder if my little guy will EVER get

away

> > from it. Especially when he is walking and so happy when he can

go

> > off by himself and not have to worry about getting too far from

his

> > pole. Plus, let me add a little self pity here. It is hard for

us

> > to be there with every step he takes, because we do have another

> > child and stuff to do around here. So, that brings me to my next

> > thought/question. Does any one have any suggestions for what I

can

> > do with 's pump and feeding bag to allow him more

> > independence? I know some of the kids get back packs, but I

wonder

> > if it will be too heavy for him. Pat, I know got one.

How

> > big was he when he got his. Should I email Dr. H and tell her

> > is walking and see if she could bring him a backpack to the

> > convention?

> >

> > So, Sharon, I am sure you are sorry you asked how is

> > doing! ) I just had so much on my mind, especially after

reading

> > the latest posts, that I guess I went on rambling. Yes, another

LONG

> > post by me! )

> >

> > Oh yeah, and is talking very well. The thing with him and

his

> > milestones seem to be this. Yes, was one of the RSS kids

that

> > hit his milestones late. Especially gorss motor skills. Like I

> > said, he wasn't walking until 23 months, but his language skills

have

> > always seemed to be within the range. But, once he got the skill

> > down, he took it to a whole new level, like he had been doing it

for

> > a while. It just took him some time to get it down. His

therapists

> > are amazed by him each time they see him. They introduce

something

> > new to him he can't do that week, but the next week he is doing it

> > like an old pro. As for the talking, he is saying things that we

> > don't say. He just puts words together on his won, and we are

> > shocked by it.

> >

> > So, that is my update on . We are still fighting with the

bad

> > weight gain, thus the 22 hour feeds plus trying to feed him

orally,

> > but we are also in the midst of perfection with his talking and

> > walking. I am so proud that we took him to New York to see Dr. H.

> > and to see the INCREDIBLE progress he made because of that one

trip.

> > I have to say, it was a VERY frustrating and nerve racking trip,

and

> > I questioned why I went in the first place, but to see him now is

a

> > testament as to why I want to go to convention and see her

again. I

> > am hoping that there will be goods news from her and that she will

> > also be pleased with his progress. I wish I could express to you

all

> > just how much difference has been made in him. It truly is

amazing.

> > He was one of the RSS kids that had trouble holding up his head.

> > Shoot, for the longest time his head was HALF his body weight. It

> > was really unproportionate to his body. After going to New York

and

> > putting on some weight, he was able to hold his own head up and

start

> > seeing the world upright, instead of laying down.

> >

> > Anyway, I am proud of , and the strides that he has made.

I am

> > sorry this is so long, since I haven't been on here lately I have

so

> > much to tell everyone. I hope you can forgive me with this LONG

> > post, just this once. I wanted to add some positives and show

people

> > waht a HUGE difference can really happen in our kids.

wasn't

> > diagnosed with RSS until 17 months old, and prior to that, we ad

so

> > many questions, and even wondered what his life was going to be

> > like. Now I know that he will be fine. Just a few fedding

issues,

> > and weight and height issues to overcome, but he will rteally be

> > fine. Just like Sharon is! You are such an inspiration. I told

you

> > that before, and I always hoped was going to be fine, too.

> > And, now I know he will be. He is really on the path to be

> > a " regular " kid! )

> >

> > Sorry so long, guys,

> > Jodi R.

> > One proud momma

> > 18 lbs. 6 oz., 28 " , Prilosec

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Jodi-

I thought of a great idea for (that is if it works it is a great

idea!) I was looking for a small backpack for my 3 yo son Braxton, non RSS ...

and after two weeks of looking and still no luck I finally settled on one that

still was terrible. About a month later I was at the mall and saw some

Jansport backpack purses that looked like very minature backpacks. They were

really

small !!! I wish I had seen them a month earlier. They even had some really

great styles that would have worked for a boy ie. navy and light blue and navy

and red. They were cute and still looked like they could be boyishly tough!

They were 25 dollars and I guess they followed the new trend of the teenage

girl thing. The straps looked adjustable and if you can't get it small enough

you could tie the shoulder straps in knots until they fit. Good luck!

Can't wait to meet you all in Chicago! (Hannah and Braxton's mom) PS

I saw his pictures he is such a cute little guy!

[Guest guest]

,

Hey, thank you so much for the great idea. I will try to find them.

Was it is a particular store, or was it a sporting goods store? I'd

love to see them because they could very well work for him.

Thanks for saying that is cute. I think so, but I think I am

a little partial! )

So, your going to CHicago too? I'll be there. I am looking forward

to meeting everyone too! How are we going to know the people from

this listserve though? I will probably be so overwhelmed that I

won't remember the people I have talked to on the listserve. I will

be thinking, " Is she from the list? " Hee, hee. I'll have to write

down everyones name or something. ) That would take FOREVER! We

need some type of identifier telling us who is on the listserve.

Jodi

> Hi Jodi-

> I thought of a great idea for (that is if it works it is a

great

> idea!) I was looking for a small backpack for my 3 yo son

Braxton, non RSS ...

> and after two weeks of looking and still no luck I finally settled

on one that

> still was terrible. About a month later I was at the mall and saw

some

> Jansport backpack purses that looked like very minature backpacks.

They were really

> small !!! I wish I had seen them a month earlier. They even had

some really

> great styles that would have worked for a boy ie. navy and light

blue and navy

> and red. They were cute and still looked like they could be

boyishly tough!

> They were 25 dollars and I guess they followed the new trend of

the teenage

> girl thing. The straps looked adjustable and if you can't get it

small enough

> you could tie the shoulder straps in knots until they fit. Good

luck!

> Can't wait to meet you all in Chicago! (Hannah and

Braxton's mom) PS

> I saw his pictures he is such a cute little guy!

>

>

>