Re: Amelie and the lift saga!!!

[Guest guest]

Lesley,

Amelie sounds just like Eva I know they are only a few months apart.

She kicks and rolls to her side and will prop sit but doesnt sit on

her own. I am just giving her time to learn and with theropy I know

she will. After she spent time in the hospital and had heart surgery

thats when I saw her doing alot more things. Just give her time, she

has been stuck in the hospital and sick that last few months and I

know she will do will once she is feeling better.

Hugs to you all,

Crystal and Eva (10 month charger)

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her

chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions

are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I

kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

[Guest guest]

Lesley,

Amelie sounds just like Eva I know they are only a few months apart.

She kicks and rolls to her side and will prop sit but doesnt sit on

her own. I am just giving her time to learn and with theropy I know

she will. After she spent time in the hospital and had heart surgery

thats when I saw her doing alot more things. Just give her time, she

has been stuck in the hospital and sick that last few months and I

know she will do will once she is feeling better.

Hugs to you all,

Crystal and Eva (10 month charger)

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her

chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions

are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I

kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

[Guest guest]

Lesley-

I don't really get this. Aubrie was very floppy as a newborn. We didn't

know if she'd ever walk -- how could we predict given the wide range of

outcomes with CHARGE? She never had a standing frame or a walking frame. I

wonder if it's something we should have gotten -- but at the time it didn't

seem the thing to do. We rigged up our coffee table with a strong netting

from the army surplus store over it (along with some soft cushioning) so she

could get a grip and pull herself up. We also took a cushion off of the

couch so it was the right height for her to pull up and climb up. Those

modifications allowed her to pull to a stand and cruise sooner than if we

hadn't done them. She took her first steps between us at age 2 yrs and

about 3 months. I don't know how much longer til she could truly walk

independently. I know she held my hand a lot longer than other kids would

have. She crawled up the stairs even tho she never actually crawled on flat

ground. We don't have a lift. She has been able to crawl up and scoot down

on her bottom for a long time. She still only weighs 46 lbs so I can carry

her if needed -- but we only do that in the am when she's tired and I'm

treating her like a baby (bad mommy).

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Amelie and the lift saga!!!

Hi all

Did all the charge children start off very floppy?? Amelie is

rocking side to side and pushing her bum up a lttle bit like the

crab position, but she doesnt want to weight bear on her legs at

all, although she kicks them about like crazy when sat in her chair.

I am amazed that no one has a lift or elevator, I think they are

trying to say to me that if they fund her bedroom,the conditions are

they have to do the whole hog, she even said every door frame must

be a certain size and the whole house would have to be done, I kept

saying charge kids do walk they are just delayed at walking.

I need to go back to the OT and speak about this ASAP, if its part

of the terms and conditions then we need to say forget it and

manage, the trouble is she needs the next size up cot and we cant

fit it in our room. so its becoming a serious catch 22.

Amelie may be allowed home tomorrow if her sats are stable

tonight..fingers crossed.

Flo if your tuned in does have a lift to go upstairs.?

lol Lesley

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Lesley-

I don't really get this. Aubrie was very floppy as a newborn. We didn't

know if she'd ever walk -- how could we predict given the wide range of

outcomes with CHARGE? She never had a standing frame or a walking frame. I

wonder if it's something we should have gotten -- but at the time it didn't

seem the thing to do. We rigged up our coffee table with a strong netting

from the army surplus store over it (along with some soft cushioning) so she

could get a grip and pull herself up. We also took a cushion off of the

couch so it was the right height for her to pull up and climb up. Those

modifications allowed her to pull to a stand and cruise sooner than if we

hadn't done them. She took her first steps between us at age 2 yrs and

about 3 months. I don't know how much longer til she could truly walk

independently. I know she held my hand a lot longer than other kids would

have. She crawled up the stairs even tho she never actually crawled on flat

ground. We don't have a lift. She has been able to crawl up and scoot down

on her bottom for a long time. She still only weighs 46 lbs so I can carry

her if needed -- but we only do that in the am when she's tired and I'm

treating her like a baby (bad mommy).

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Amelie and the lift saga!!!

Hi all

Did all the charge children start off very floppy?? Amelie is

rocking side to side and pushing her bum up a lttle bit like the

crab position, but she doesnt want to weight bear on her legs at

all, although she kicks them about like crazy when sat in her chair.

I am amazed that no one has a lift or elevator, I think they are

trying to say to me that if they fund her bedroom,the conditions are

they have to do the whole hog, she even said every door frame must

be a certain size and the whole house would have to be done, I kept

saying charge kids do walk they are just delayed at walking.

I need to go back to the OT and speak about this ASAP, if its part

of the terms and conditions then we need to say forget it and

manage, the trouble is she needs the next size up cot and we cant

fit it in our room. so its becoming a serious catch 22.

Amelie may be allowed home tomorrow if her sats are stable

tonight..fingers crossed.

Flo if your tuned in does have a lift to go upstairs.?

lol Lesley

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Crystal and Lesley-

Aubrie could stand and sit when put there long before she could get herself

into a sit. It is not following the traditional developmental steps -- but

she just didn't have the coordination or arm strength to get herself into a

sit.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Crystal and Lesley-

Aubrie could stand and sit when put there long before she could get herself

into a sit. It is not following the traditional developmental steps -- but

she just didn't have the coordination or arm strength to get herself into a

sit.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Lesley,

Carmen was very floppy when she was born--sat up at 11 months, and at

20 months is cruising furniture, crawling everywhere, and pulling to

stand. She is much stronger now, but I believe it is her balance that

prohibits her from actually standing on her own. She is very small

for her age--not even at 5th percentile for height or weight so I

don't know if a walker would even fit her, but that is our next step

(along with hippotherapy this spring). We are moving to a new house

in the next year and her bedroon will be upstairs. I asked her

therapist about this and she said, " Great! It will be good practice

for her! "

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

[Guest guest]

Lesley,

Carmen was very floppy when she was born--sat up at 11 months, and at

20 months is cruising furniture, crawling everywhere, and pulling to

stand. She is much stronger now, but I believe it is her balance that

prohibits her from actually standing on her own. She is very small

for her age--not even at 5th percentile for height or weight so I

don't know if a walker would even fit her, but that is our next step

(along with hippotherapy this spring). We are moving to a new house

in the next year and her bedroon will be upstairs. I asked her

therapist about this and she said, " Great! It will be good practice

for her! "

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

[Guest guest]

was certainly very wobbly for a very long time. Much of this must

have been due to CHARGE, though eventually her developmental ped

thought a lot of the problem came from the hearing aids which were in

place by @ 3 months --- they'd sound loudly whenever she moved. That

said, even at age 21, can have profound balance problems, and I

vividly remember propping her on our bed with pillows when an infant,

and she still fell over. Even have photos of this.

Martha

[Guest guest]

was certainly very wobbly for a very long time. Much of this must

have been due to CHARGE, though eventually her developmental ped

thought a lot of the problem came from the hearing aids which were in

place by @ 3 months --- they'd sound loudly whenever she moved. That

said, even at age 21, can have profound balance problems, and I

vividly remember propping her on our bed with pillows when an infant,

and she still fell over. Even have photos of this.

Martha

[Guest guest]

Dylan walked independently at age 3 yrs, 8 mos.

He had a walker for about a year prior.

He crawled upright on his knees pushing a toy truck in front of him for

support before that.

Kim

> Lesley-

> I don't really get this. Aubrie was very floppy as a newborn. We didn't

> know if she'd ever walk -- how could we predict given the wide range of

> outcomes with CHARGE? She never had a standing frame or a walking frame. I

> wonder if it's something we should have gotten -- but at the time it didn't

> seem the thing to do. We rigged up our coffee table with a strong netting

> from the army surplus store over it (along with some soft cushioning) so she

> could get a grip and pull herself up. We also took a cushion off of the

> couch so it was the right height for her to pull up and climb up. Those

> modifications allowed her to pull to a stand and cruise sooner than if we

> hadn't done them. She took her first steps between us at age 2 yrs and

> about 3 months. I don't know how much longer til she could truly walk

> independently. I know she held my hand a lot longer than other kids would

> have. She crawled up the stairs even tho she never actually crawled on flat

> ground. We don't have a lift. She has been able to crawl up and scoot down

> on her bottom for a long time. She still only weighs 46 lbs so I can carry

> her if needed -- but we only do that in the am when she's tired and I'm

> treating her like a baby (bad mommy).

>

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Amelie and the lift saga!!!

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Dylan walked independently at age 3 yrs, 8 mos.

He had a walker for about a year prior.

He crawled upright on his knees pushing a toy truck in front of him for

support before that.

Kim

> Lesley-

> I don't really get this. Aubrie was very floppy as a newborn. We didn't

> know if she'd ever walk -- how could we predict given the wide range of

> outcomes with CHARGE? She never had a standing frame or a walking frame. I

> wonder if it's something we should have gotten -- but at the time it didn't

> seem the thing to do. We rigged up our coffee table with a strong netting

> from the army surplus store over it (along with some soft cushioning) so she

> could get a grip and pull herself up. We also took a cushion off of the

> couch so it was the right height for her to pull up and climb up. Those

> modifications allowed her to pull to a stand and cruise sooner than if we

> hadn't done them. She took her first steps between us at age 2 yrs and

> about 3 months. I don't know how much longer til she could truly walk

> independently. I know she held my hand a lot longer than other kids would

> have. She crawled up the stairs even tho she never actually crawled on flat

> ground. We don't have a lift. She has been able to crawl up and scoot down

> on her bottom for a long time. She still only weighs 46 lbs so I can carry

> her if needed -- but we only do that in the am when she's tired and I'm

> treating her like a baby (bad mommy).

>

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Amelie and the lift saga!!!

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Michele,

I am bad mommy lots _ I still carry Dylan.

Of course he walks a lot, but there are still times when he needs to be

carried more than others. I respect his cues. I guess that is the good

thing about where he is emotionally - it is still okay if I pick him up when

he needs it. I wonder how long until I simply cannot, he is finally 50 lbs.

Kim

> Lesley-

> I don't really get this. Aubrie was very floppy as a newborn. We didn't

> know if she'd ever walk -- how could we predict given the wide range of

> outcomes with CHARGE? She never had a standing frame or a walking frame. I

> wonder if it's something we should have gotten -- but at the time it didn't

> seem the thing to do. We rigged up our coffee table with a strong netting

> from the army surplus store over it (along with some soft cushioning) so she

> could get a grip and pull herself up. We also took a cushion off of the

> couch so it was the right height for her to pull up and climb up. Those

> modifications allowed her to pull to a stand and cruise sooner than if we

> hadn't done them. She took her first steps between us at age 2 yrs and

> about 3 months. I don't know how much longer til she could truly walk

> independently. I know she held my hand a lot longer than other kids would

> have. She crawled up the stairs even tho she never actually crawled on flat

> ground. We don't have a lift. She has been able to crawl up and scoot down

> on her bottom for a long time. She still only weighs 46 lbs so I can carry

> her if needed -- but we only do that in the am when she's tired and I'm

> treating her like a baby (bad mommy).

>

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Amelie and the lift saga!!!

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Michele,

I am bad mommy lots _ I still carry Dylan.

Of course he walks a lot, but there are still times when he needs to be

carried more than others. I respect his cues. I guess that is the good

thing about where he is emotionally - it is still okay if I pick him up when

he needs it. I wonder how long until I simply cannot, he is finally 50 lbs.

Kim

> Lesley-

> I don't really get this. Aubrie was very floppy as a newborn. We didn't

> know if she'd ever walk -- how could we predict given the wide range of

> outcomes with CHARGE? She never had a standing frame or a walking frame. I

> wonder if it's something we should have gotten -- but at the time it didn't

> seem the thing to do. We rigged up our coffee table with a strong netting

> from the army surplus store over it (along with some soft cushioning) so she

> could get a grip and pull herself up. We also took a cushion off of the

> couch so it was the right height for her to pull up and climb up. Those

> modifications allowed her to pull to a stand and cruise sooner than if we

> hadn't done them. She took her first steps between us at age 2 yrs and

> about 3 months. I don't know how much longer til she could truly walk

> independently. I know she held my hand a lot longer than other kids would

> have. She crawled up the stairs even tho she never actually crawled on flat

> ground. We don't have a lift. She has been able to crawl up and scoot down

> on her bottom for a long time. She still only weighs 46 lbs so I can carry

> her if needed -- but we only do that in the am when she's tired and I'm

> treating her like a baby (bad mommy).

>

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Amelie and the lift saga!!!

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

APOLOGIES IN ADVANCE, THIS WILL BE LONG!

Okay Lesley, this is obviously not one that can wait, especially as I will

be at the gym tomorrow evening and this whole thing is obviously causing you

distress. Here is what the newly updated Sense factsheets say about

hypotonia:-

" Low muscle tone or very floppy muscles are very characteristic of children

with CHARGE and sometimes the problems associated with this persist into

adulthood. It is thought that multi-sensory impairments, balance problems,

health problems, persistent and repeated hospitalisation and surgery,

breathing difficulties and sensory defensiveness all play a part in this " .

You can find the factsheets if you google 'Sense', go into 'About

deafblindness' and from there click the CHARGE option. The link for the

factsheets is at the bottom of the page that comes up. If any of the info

is inaccurate, you can all blame Simon as he was part of the team that just

worked on these.

The first thing that struck me on reading the above is, how Amelie is that

description! Poor little thing has the odds stacked as far as hypotonia

goes. As everyone else has said, pretty much all our little ones started

life out very floppy. That of course includes our bicycle monster.

had and continues to have some degree of upper body hypotonia. Now

I sometimes forget she has this as she has come such a long way and seems so

upright and strong. She was very floppy in the early days. A lot of physio

work has gone into helping her to develop her body strength. Hopefully,

when Amelie's immediate health issues are under control, you will get physio

input, exercises and advise to help this along.

found sitting, standing, moving etc a problem early on and once she

could weight bear, she was supplied with a standing frame at home and at

nursery and later at school (she started nursery school at age 2-1/2 so this

was still quite early on). She also got a walking frame at age 2-1/2 (she

got one earlier but did not get on with the make until supplied with a kay

walker). She used the walker until age 3-1/2 when she walked

independently.

Now I am only telling you the long story because you have seen , just

to let you know that she did not start out the strong girl you saw in

Manchester, so do not despair. Hopefully Amelie will also pleasantly

surprise you. As Kim said, the majority of children do go on to walk

independently in their own time but of course one cannot predict these

things. I would assume Amelie will walk and work towards this goal (I know,

among countless others!) until it is proven otherwise (if at all).

Which leads me nicely to the OT and adaptations thing. No, we do not have a

lift in our home and it has never been suggested. Of course if all evidence

led to J not walking, then we would have conceded and either got one or as

Simon reminded me, gone for a chair lift along the stair rail (although I

don't know what the deal is with these these days). As her legs got

stronger, we eventually taught her to walk crablike up the stairs sideways

holding on to the bannister rails. Then by a stroke of luck, we got a great

OT who had a stair rail fitted along the wall, so now she holds on to this,

supported by the bannister rails on the other side and goes up the stairs

independently.

My guess about the lift thing is that it is finance led and based on the

assumption that Amelie will never walk. This is confirmed by the thing

about the width of the door frames as it appears they are looking at making

them wheelchair accessible which strikes me as extremely premature when

assessing a little girl of age one who has every reason to not be physically

following a typical developmental pathway and who has a diagnosis where the

majority of children do achieve mobility albeit later than expected.

Basically Lesley, if they can do all these jobs in one go, they are

thinking it will save them money as I am sure the OT is thinking that if

only the bedroom is added on, you will later go back and ask for the other

works to be done and it will ultimately cost them more. This is my thought

but of course I could be wrong and she may have a viable reason for the

outcome of her assessment. Somehow, I don't think so and I would print out

the Sense factsheets for her or any other individual who comes to assess

Amelie (including for respite, about which I will come back another time).

What is it with your Local Social Services? They either want to give you

nothing or everything! Question, question, question this whole lift

thing. It does not make sense right now. I am sure they cannot make

any adaptations conditional on your agreeing to others in the house. They

may make noises about if you don't accept all now, don't then ask for them

later etc etc but you can always cross that bridge if you do come to it.

Don't throw in the towel, I am sure they would love that. Your family's

needs do need to be met and they cannot keep shirking their

responsibilities.

Good luck on this headache. Believe me, getting anything here has not been

that easy either except when we have been lucky and got really good

assessors. Please do give me a call and chat further if it would help.

Best..........

Flo

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

>

[Guest guest]

APOLOGIES IN ADVANCE, THIS WILL BE LONG!

Okay Lesley, this is obviously not one that can wait, especially as I will

be at the gym tomorrow evening and this whole thing is obviously causing you

distress. Here is what the newly updated Sense factsheets say about

hypotonia:-

" Low muscle tone or very floppy muscles are very characteristic of children

with CHARGE and sometimes the problems associated with this persist into

adulthood. It is thought that multi-sensory impairments, balance problems,

health problems, persistent and repeated hospitalisation and surgery,

breathing difficulties and sensory defensiveness all play a part in this " .

You can find the factsheets if you google 'Sense', go into 'About

deafblindness' and from there click the CHARGE option. The link for the

factsheets is at the bottom of the page that comes up. If any of the info

is inaccurate, you can all blame Simon as he was part of the team that just

worked on these.

The first thing that struck me on reading the above is, how Amelie is that

description! Poor little thing has the odds stacked as far as hypotonia

goes. As everyone else has said, pretty much all our little ones started

life out very floppy. That of course includes our bicycle monster.

had and continues to have some degree of upper body hypotonia. Now

I sometimes forget she has this as she has come such a long way and seems so

upright and strong. She was very floppy in the early days. A lot of physio

work has gone into helping her to develop her body strength. Hopefully,

when Amelie's immediate health issues are under control, you will get physio

input, exercises and advise to help this along.

found sitting, standing, moving etc a problem early on and once she

could weight bear, she was supplied with a standing frame at home and at

nursery and later at school (she started nursery school at age 2-1/2 so this

was still quite early on). She also got a walking frame at age 2-1/2 (she

got one earlier but did not get on with the make until supplied with a kay

walker). She used the walker until age 3-1/2 when she walked

independently.

Now I am only telling you the long story because you have seen , just

to let you know that she did not start out the strong girl you saw in

Manchester, so do not despair. Hopefully Amelie will also pleasantly

surprise you. As Kim said, the majority of children do go on to walk

independently in their own time but of course one cannot predict these

things. I would assume Amelie will walk and work towards this goal (I know,

among countless others!) until it is proven otherwise (if at all).

Which leads me nicely to the OT and adaptations thing. No, we do not have a

lift in our home and it has never been suggested. Of course if all evidence

led to J not walking, then we would have conceded and either got one or as

Simon reminded me, gone for a chair lift along the stair rail (although I

don't know what the deal is with these these days). As her legs got

stronger, we eventually taught her to walk crablike up the stairs sideways

holding on to the bannister rails. Then by a stroke of luck, we got a great

OT who had a stair rail fitted along the wall, so now she holds on to this,

supported by the bannister rails on the other side and goes up the stairs

independently.

My guess about the lift thing is that it is finance led and based on the

assumption that Amelie will never walk. This is confirmed by the thing

about the width of the door frames as it appears they are looking at making

them wheelchair accessible which strikes me as extremely premature when

assessing a little girl of age one who has every reason to not be physically

following a typical developmental pathway and who has a diagnosis where the

majority of children do achieve mobility albeit later than expected.

Basically Lesley, if they can do all these jobs in one go, they are

thinking it will save them money as I am sure the OT is thinking that if

only the bedroom is added on, you will later go back and ask for the other

works to be done and it will ultimately cost them more. This is my thought

but of course I could be wrong and she may have a viable reason for the

outcome of her assessment. Somehow, I don't think so and I would print out

the Sense factsheets for her or any other individual who comes to assess

Amelie (including for respite, about which I will come back another time).

What is it with your Local Social Services? They either want to give you

nothing or everything! Question, question, question this whole lift

thing. It does not make sense right now. I am sure they cannot make

any adaptations conditional on your agreeing to others in the house. They

may make noises about if you don't accept all now, don't then ask for them

later etc etc but you can always cross that bridge if you do come to it.

Don't throw in the towel, I am sure they would love that. Your family's

needs do need to be met and they cannot keep shirking their

responsibilities.

Good luck on this headache. Believe me, getting anything here has not been

that easy either except when we have been lucky and got really good

assessors. Please do give me a call and chat further if it would help.

Best..........

Flo

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

>

[Guest guest]

Kim-

Same here -- we're glad Aubrie's small for her age cuz it allows us to carry

her when needed. She just can't walk as far as others. DJ's the one who

carries her more than I now cuz she's 46 lbs and that's plenty for me. Down

the stairs is one thing, but around town is another. That's also why we got

her the wheelchair this year. Emotionally, Aubrie is fine with being

carried.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Amelie and the lift saga!!!

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Kim-

Same here -- we're glad Aubrie's small for her age cuz it allows us to carry

her when needed. She just can't walk as far as others. DJ's the one who

carries her more than I now cuz she's 46 lbs and that's plenty for me. Down

the stairs is one thing, but around town is another. That's also why we got

her the wheelchair this year. Emotionally, Aubrie is fine with being

carried.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Amelie and the lift saga!!!

>

> Hi all

>

> Did all the charge children start off very floppy?? Amelie is

> rocking side to side and pushing her bum up a lttle bit like the

> crab position, but she doesnt want to weight bear on her legs at

> all, although she kicks them about like crazy when sat in her chair.

>

> I am amazed that no one has a lift or elevator, I think they are

> trying to say to me that if they fund her bedroom,the conditions are

> they have to do the whole hog, she even said every door frame must

> be a certain size and the whole house would have to be done, I kept

> saying charge kids do walk they are just delayed at walking.

>

> I need to go back to the OT and speak about this ASAP, if its part

> of the terms and conditions then we need to say forget it and

> manage, the trouble is she needs the next size up cot and we cant

> fit it in our room. so its becoming a serious catch 22.

>

> Amelie may be allowed home tomorrow if her sats are stable

> tonight..fingers crossed.

>

> Flo if your tuned in does have a lift to go upstairs.?

>

> lol Lesley

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley,

One option is it is just protocol - we only do adaptations for people with

such and such impairments, which would make a lift necessary as well.....

The question is do they think Amelie fits in that category?????????

If they do, then they could be basing it on that very first neuro exam that

had you in fits for a year, and now have been told is not a problem.

Who knows what they are basing the decision on, it is necessary to find out,

so you can have the appropriate adaptations made.

Kim

> APOLOGIES IN ADVANCE, THIS WILL BE LONG!

>

> Okay Lesley, this is obviously not one that can wait, especially as I will

> be at the gym tomorrow evening and this whole thing is obviously causing you

> distress. Here is what the newly updated Sense factsheets say about

> hypotonia:-

>

> " Low muscle tone or very floppy muscles are very characteristic of children

> with CHARGE and sometimes the problems associated with this persist into

> adulthood. It is thought that multi-sensory impairments, balance problems,

> health problems, persistent and repeated hospitalisation and surgery,

> breathing difficulties and sensory defensiveness all play a part in this " .

> You can find the factsheets if you google 'Sense', go into 'About

> deafblindness' and from there click the CHARGE option. The link for the

> factsheets is at the bottom of the page that comes up. If any of the info

> is inaccurate, you can all blame Simon as he was part of the team that just

> worked on these.

>

> The first thing that struck me on reading the above is, how Amelie is that

> description! Poor little thing has the odds stacked as far as hypotonia

> goes. As everyone else has said, pretty much all our little ones started

> life out very floppy. That of course includes our bicycle monster.

> had and continues to have some degree of upper body hypotonia. Now

> I sometimes forget she has this as she has come such a long way and seems so

> upright and strong. She was very floppy in the early days. A lot of physio

> work has gone into helping her to develop her body strength. Hopefully,

> when Amelie's immediate health issues are under control, you will get physio

> input, exercises and advise to help this along.

>

> found sitting, standing, moving etc a problem early on and once she

> could weight bear, she was supplied with a standing frame at home and at

> nursery and later at school (she started nursery school at age 2-1/2 so this

> was still quite early on). She also got a walking frame at age 2-1/2 (she

> got one earlier but did not get on with the make until supplied with a kay

> walker). She used the walker until age 3-1/2 when she walked

> independently.

>

> Now I am only telling you the long story because you have seen , just

> to let you know that she did not start out the strong girl you saw in

> Manchester, so do not despair. Hopefully Amelie will also pleasantly

> surprise you. As Kim said, the majority of children do go on to walk

> independently in their own time but of course one cannot predict these

> things. I would assume Amelie will walk and work towards this goal (I know,

> among countless others!) until it is proven otherwise (if at all).

>

> Which leads me nicely to the OT and adaptations thing. No, we do not have a

> lift in our home and it has never been suggested. Of course if all evidence

> led to J not walking, then we would have conceded and either got one or as

> Simon reminded me, gone for a chair lift along the stair rail (although I

> don't know what the deal is with these these days). As her legs got

> stronger, we eventually taught her to walk crablike up the stairs sideways

> holding on to the bannister rails. Then by a stroke of luck, we got a great

> OT who had a stair rail fitted along the wall, so now she holds on to this,

> supported by the bannister rails on the other side and goes up the stairs

> independently.

>

> My guess about the lift thing is that it is finance led and based on the

> assumption that Amelie will never walk. This is confirmed by the thing

> about the width of the door frames as it appears they are looking at making

> them wheelchair accessible which strikes me as extremely premature when

> assessing a little girl of age one who has every reason to not be physically

> following a typical developmental pathway and who has a diagnosis where the

> majority of children do achieve mobility albeit later than expected.

> Basically Lesley, if they can do all these jobs in one go, they are

> thinking it will save them money as I am sure the OT is thinking that if

> only the bedroom is added on, you will later go back and ask for the other

> works to be done and it will ultimately cost them more. This is my thought

> but of course I could be wrong and she may have a viable reason for the

> outcome of her assessment. Somehow, I don't think so and I would print out

> the Sense factsheets for her or any other individual who comes to assess

> Amelie (including for respite, about which I will come back another time).

>

> What is it with your Local Social Services? They either want to give you

> nothing or everything! Question, question, question this whole lift

> thing. It does not make sense right now. I am sure they cannot make

> any adaptations conditional on your agreeing to others in the house. They

> may make noises about if you don't accept all now, don't then ask for them

> later etc etc but you can always cross that bridge if you do come to it.

> Don't throw in the towel, I am sure they would love that. Your family's

> needs do need to be met and they cannot keep shirking their

> responsibilities.

>

> Good luck on this headache. Believe me, getting anything here has not been

> that easy either except when we have been lucky and got really good

> assessors. Please do give me a call and chat further if it would help.

>

> Best..........

> Flo

>

>

>

>>

>> Hi all

>>

>> Did all the charge children start off very floppy?? Amelie is

>> rocking side to side and pushing her bum up a lttle bit like the

>> crab position, but she doesnt want to weight bear on her legs at

>> all, although she kicks them about like crazy when sat in her chair.

>>

>> I am amazed that no one has a lift or elevator, I think they are

>> trying to say to me that if they fund her bedroom,the conditions are

>> they have to do the whole hog, she even said every door frame must

>> be a certain size and the whole house would have to be done, I kept

>> saying charge kids do walk they are just delayed at walking.

>>

>> I need to go back to the OT and speak about this ASAP, if its part

>> of the terms and conditions then we need to say forget it and

>> manage, the trouble is she needs the next size up cot and we cant

>> fit it in our room. so its becoming a serious catch 22.

>>

>> Amelie may be allowed home tomorrow if her sats are stable

>> tonight..fingers crossed.

>>

>> Flo if your tuned in does have a lift to go upstairs.?

>>

>> lol Lesley

>>

>>

>

>

>

[Guest guest]

50 lbs healthy is not bad, but when he is " off " and needs held, but his body

is in all sorts of weird positions and he is dead weight, then it gets very

hard - thank goodness for the w/c on those days.

Kim

> Kim-

> Same here -- we're glad Aubrie's small for her age cuz it allows us to carry

> her when needed. She just can't walk as far as others. DJ's the one who

> carries her more than I now cuz she's 46 lbs and that's plenty for me. Down

> the stairs is one thing, but around town is another. That's also why we got

> her the wheelchair this year. Emotionally, Aubrie is fine with being

> carried.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Amelie and the lift saga!!!

>>

>> Hi all

>>

>> Did all the charge children start off very floppy?? Amelie is

>> rocking side to side and pushing her bum up a lttle bit like the

>> crab position, but she doesnt want to weight bear on her legs at

>> all, although she kicks them about like crazy when sat in her chair.

>>

>> I am amazed that no one has a lift or elevator, I think they are

>> trying to say to me that if they fund her bedroom,the conditions are

>> they have to do the whole hog, she even said every door frame must

>> be a certain size and the whole house would have to be done, I kept

>> saying charge kids do walk they are just delayed at walking.

>>

>> I need to go back to the OT and speak about this ASAP, if its part

>> of the terms and conditions then we need to say forget it and

>> manage, the trouble is she needs the next size up cot and we cant

>> fit it in our room. so its becoming a serious catch 22.

>>

>> Amelie may be allowed home tomorrow if her sats are stable

>> tonight..fingers crossed.

>>

>> Flo if your tuned in does have a lift to go upstairs.?

>>

>> lol Lesley

>>

>>

>>

>>

>>

>> CHARGE SYNDROME LISTSERV PHOTO PAGE:

>> http://www.imagestation.com/album/?id=2117043995

>>

>> Membership of this email support groups does not constitute membership in

>> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>> For information about the CHARGE Syndrome

>> Foundation or to become a member (and get the newsletter),

>> please contact marion@... or visit

>> the web site at http://www.chargesyndrome.org

>> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>>

>> 8th International

>> CHARGE Syndrome Conference, July, 2007. Information will be available at

>> www.chargesyndrome.org or by calling 1-.

>>

[Guest guest]

50 lbs healthy is not bad, but when he is " off " and needs held, but his body

is in all sorts of weird positions and he is dead weight, then it gets very

hard - thank goodness for the w/c on those days.

Kim

> Kim-

> Same here -- we're glad Aubrie's small for her age cuz it allows us to carry

> her when needed. She just can't walk as far as others. DJ's the one who

> carries her more than I now cuz she's 46 lbs and that's plenty for me. Down

> the stairs is one thing, but around town is another. That's also why we got

> her the wheelchair this year. Emotionally, Aubrie is fine with being

> carried.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Amelie and the lift saga!!!

>>

>> Hi all

>>

>> Did all the charge children start off very floppy?? Amelie is

>> rocking side to side and pushing her bum up a lttle bit like the

>> crab position, but she doesnt want to weight bear on her legs at

>> all, although she kicks them about like crazy when sat in her chair.

>>

>> I am amazed that no one has a lift or elevator, I think they are

>> trying to say to me that if they fund her bedroom,the conditions are

>> they have to do the whole hog, she even said every door frame must

>> be a certain size and the whole house would have to be done, I kept

>> saying charge kids do walk they are just delayed at walking.

>>

>> I need to go back to the OT and speak about this ASAP, if its part

>> of the terms and conditions then we need to say forget it and

>> manage, the trouble is she needs the next size up cot and we cant

>> fit it in our room. so its becoming a serious catch 22.

>>

>> Amelie may be allowed home tomorrow if her sats are stable

>> tonight..fingers crossed.

>>

>> Flo if your tuned in does have a lift to go upstairs.?

>>

>> lol Lesley

>>

>>

>>

>>

>>

>> CHARGE SYNDROME LISTSERV PHOTO PAGE:

>> http://www.imagestation.com/album/?id=2117043995

>>

>> Membership of this email support groups does not constitute membership in

>> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>> For information about the CHARGE Syndrome

>> Foundation or to become a member (and get the newsletter),

>> please contact marion@... or visit

>> the web site at http://www.chargesyndrome.org

>> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>>

>> 8th International

>> CHARGE Syndrome Conference, July, 2007. Information will be available at

>> www.chargesyndrome.org or by calling 1-.

>>

[Guest guest]

50 lbs healthy is not bad, but when he is " off " and needs held, but his body

is in all sorts of weird positions and he is dead weight, then it gets very

hard - thank goodness for the w/c on those days.

Kim

> Kim-

> Same here -- we're glad Aubrie's small for her age cuz it allows us to carry

> her when needed. She just can't walk as far as others. DJ's the one who

> carries her more than I now cuz she's 46 lbs and that's plenty for me. Down

> the stairs is one thing, but around town is another. That's also why we got

> her the wheelchair this year. Emotionally, Aubrie is fine with being

> carried.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Amelie and the lift saga!!!

>>

>> Hi all

>>

>> Did all the charge children start off very floppy?? Amelie is

>> rocking side to side and pushing her bum up a lttle bit like the

>> crab position, but she doesnt want to weight bear on her legs at

>> all, although she kicks them about like crazy when sat in her chair.

>>

>> I am amazed that no one has a lift or elevator, I think they are

>> trying to say to me that if they fund her bedroom,the conditions are

>> they have to do the whole hog, she even said every door frame must

>> be a certain size and the whole house would have to be done, I kept

>> saying charge kids do walk they are just delayed at walking.

>>

>> I need to go back to the OT and speak about this ASAP, if its part

>> of the terms and conditions then we need to say forget it and

>> manage, the trouble is she needs the next size up cot and we cant

>> fit it in our room. so its becoming a serious catch 22.

>>

>> Amelie may be allowed home tomorrow if her sats are stable

>> tonight..fingers crossed.

>>

>> Flo if your tuned in does have a lift to go upstairs.?

>>

>> lol Lesley

>>

>>

>>

>>

>>

>> CHARGE SYNDROME LISTSERV PHOTO PAGE:

>> http://www.imagestation.com/album/?id=2117043995

>>

>> Membership of this email support groups does not constitute membership in

>> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>> For information about the CHARGE Syndrome

>> Foundation or to become a member (and get the newsletter),

>> please contact marion@... or visit

>> the web site at http://www.chargesyndrome.org

>> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>>

>> 8th International

>> CHARGE Syndrome Conference, July, 2007. Information will be available at

>> www.chargesyndrome.org or by calling 1-.

>>

[Guest guest]

i agree with flo on the wheelchair stuff for a chair you do need wide doors

adn thats probly wat they are thinking of i am in one my self and have had a

number of obsitcle doors lol my friends front door being one LOL her little

brother clutters it all up so no one can get in our out LOL but thats

another story i hardly use my chair in my house i think amelie may end up

liek me and plenty of other chargers we use a chair but for long distances i

admit i use it at my friends house coz if i walk her rother could knock me

over and when i hold on the electric chair he gets on the motor and in my

way LOL but others i dont and no one i know has a lift but then they all

have one story houses lol weve got steps here but i do as jess and flo do

and same as grandmas it is really stupid its just as stupid as soem person

saying to me if i travel in my chair i need a head rest which i dotn i have

travled in my chair heapds of tiems and with northcott who was saying it LOL

and its o its called people in different departments or as they are well

they have kids rec no \w im in community access kids rec know me comunity

access dont know me as well its all comes down to i think hwo well you know

a person i know im ramblin on but i dotn need a head rest and you dont need

a lift LOL hugs ellen

>

> 50 lbs healthy is not bad, but when he is " off " and needs held, but his

> body

> is in all sorts of weird positions and he is dead weight, then it gets

> very

> hard - thank goodness for the w/c on those days.

>

> Kim

>

>

>

>

> > Kim-

> > Same here -- we're glad Aubrie's small for her age cuz it allows us to

> carry

> > her when needed. She just can't walk as far as others. DJ's the one

> who

> > carries her more than I now cuz she's 46 lbs and that's plenty for

> me. Down

> > the stairs is one thing, but around town is another. That's also why we

> got

> > her the wheelchair this year. Emotionally, Aubrie is fine with being

> > carried.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

> >

> > Amelie and the lift saga!!!

> >>

> >> Hi all

> >>

> >> Did all the charge children start off very floppy?? Amelie is

> >> rocking side to side and pushing her bum up a lttle bit like the

> >> crab position, but she doesnt want to weight bear on her legs at

> >> all, although she kicks them about like crazy when sat in her chair.

> >>

> >> I am amazed that no one has a lift or elevator, I think they are

> >> trying to say to me that if they fund her bedroom,the conditions are

> >> they have to do the whole hog, she even said every door frame must

> >> be a certain size and the whole house would have to be done, I kept

> >> saying charge kids do walk they are just delayed at walking.

> >>

> >> I need to go back to the OT and speak about this ASAP, if its part

> >> of the terms and conditions then we need to say forget it and

> >> manage, the trouble is she needs the next size up cot and we cant

> >> fit it in our room. so its becoming a serious catch 22.

> >>

> >> Amelie may be allowed home tomorrow if her sats are stable

> >> tonight..fingers crossed.

> >>

> >> Flo if your tuned in does have a lift to go upstairs.?

> >>

> >> lol Lesley

> >>

> >>

> >>

> >>

> >>

> >> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> >> http://www.imagestation.com/album/?id=2117043995

> >>

> >> Membership of this email support groups does not constitute membership

> in

> >> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> >> For information about the CHARGE Syndrome

> >> Foundation or to become a member (and get the newsletter),

> >> please contact marion@... or visit

> >> the web site at http://www.chargesyndrome.org

> >> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >>

> >> 8th International

> >> CHARGE Syndrome Conference, July, 2007. Information will be available

> at

> >> www.chargesyndrome.org or by calling 1-.

> >>

[Guest guest]

i agree with flo on the wheelchair stuff for a chair you do need wide doors

adn thats probly wat they are thinking of i am in one my self and have had a

number of obsitcle doors lol my friends front door being one LOL her little

brother clutters it all up so no one can get in our out LOL but thats

another story i hardly use my chair in my house i think amelie may end up

liek me and plenty of other chargers we use a chair but for long distances i

admit i use it at my friends house coz if i walk her rother could knock me

over and when i hold on the electric chair he gets on the motor and in my

way LOL but others i dont and no one i know has a lift but then they all

have one story houses lol weve got steps here but i do as jess and flo do

and same as grandmas it is really stupid its just as stupid as soem person

saying to me if i travel in my chair i need a head rest which i dotn i have

travled in my chair heapds of tiems and with northcott who was saying it LOL

and its o its called people in different departments or as they are well

they have kids rec no \w im in community access kids rec know me comunity

access dont know me as well its all comes down to i think hwo well you know

a person i know im ramblin on but i dotn need a head rest and you dont need

a lift LOL hugs ellen

>

> 50 lbs healthy is not bad, but when he is " off " and needs held, but his

> body

> is in all sorts of weird positions and he is dead weight, then it gets

> very

> hard - thank goodness for the w/c on those days.

>

> Kim

>

>

>

>

> > Kim-

> > Same here -- we're glad Aubrie's small for her age cuz it allows us to

> carry

> > her when needed. She just can't walk as far as others. DJ's the one

> who

> > carries her more than I now cuz she's 46 lbs and that's plenty for

> me. Down

> > the stairs is one thing, but around town is another. That's also why we

> got

> > her the wheelchair this year. Emotionally, Aubrie is fine with being

> > carried.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

> >

> > Amelie and the lift saga!!!

> >>

> >> Hi all

> >>

> >> Did all the charge children start off very floppy?? Amelie is

> >> rocking side to side and pushing her bum up a lttle bit like the

> >> crab position, but she doesnt want to weight bear on her legs at

> >> all, although she kicks them about like crazy when sat in her chair.

> >>

> >> I am amazed that no one has a lift or elevator, I think they are

> >> trying to say to me that if they fund her bedroom,the conditions are

> >> they have to do the whole hog, she even said every door frame must

> >> be a certain size and the whole house would have to be done, I kept

> >> saying charge kids do walk they are just delayed at walking.

> >>

> >> I need to go back to the OT and speak about this ASAP, if its part

> >> of the terms and conditions then we need to say forget it and

> >> manage, the trouble is she needs the next size up cot and we cant

> >> fit it in our room. so its becoming a serious catch 22.

> >>

> >> Amelie may be allowed home tomorrow if her sats are stable

> >> tonight..fingers crossed.

> >>

> >> Flo if your tuned in does have a lift to go upstairs.?

> >>

> >> lol Lesley

> >>

> >>

> >>

> >>

> >>

> >> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> >> http://www.imagestation.com/album/?id=2117043995

> >>

> >> Membership of this email support groups does not constitute membership

> in

> >> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> >> For information about the CHARGE Syndrome

> >> Foundation or to become a member (and get the newsletter),

> >> please contact marion@... or visit

> >> the web site at http://www.chargesyndrome.org

> >> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >>

> >> 8th International

> >> CHARGE Syndrome Conference, July, 2007. Information will be available

> at

> >> www.chargesyndrome.org or by calling 1-.

> >>

[Guest guest]

i agree with flo on the wheelchair stuff for a chair you do need wide doors

adn thats probly wat they are thinking of i am in one my self and have had a

number of obsitcle doors lol my friends front door being one LOL her little

brother clutters it all up so no one can get in our out LOL but thats

another story i hardly use my chair in my house i think amelie may end up

liek me and plenty of other chargers we use a chair but for long distances i

admit i use it at my friends house coz if i walk her rother could knock me

over and when i hold on the electric chair he gets on the motor and in my

way LOL but others i dont and no one i know has a lift but then they all

have one story houses lol weve got steps here but i do as jess and flo do

and same as grandmas it is really stupid its just as stupid as soem person

saying to me if i travel in my chair i need a head rest which i dotn i have

travled in my chair heapds of tiems and with northcott who was saying it LOL

and its o its called people in different departments or as they are well

they have kids rec no \w im in community access kids rec know me comunity

access dont know me as well its all comes down to i think hwo well you know

a person i know im ramblin on but i dotn need a head rest and you dont need

a lift LOL hugs ellen

>

> 50 lbs healthy is not bad, but when he is " off " and needs held, but his

> body

> is in all sorts of weird positions and he is dead weight, then it gets

> very

> hard - thank goodness for the w/c on those days.

>

> Kim

>

>

>

>

> > Kim-

> > Same here -- we're glad Aubrie's small for her age cuz it allows us to

> carry

> > her when needed. She just can't walk as far as others. DJ's the one

> who

> > carries her more than I now cuz she's 46 lbs and that's plenty for

> me. Down

> > the stairs is one thing, but around town is another. That's also why we

> got

> > her the wheelchair this year. Emotionally, Aubrie is fine with being

> > carried.

> >

> > Michele W

> > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >

> >

> > Amelie and the lift saga!!!

> >>

> >> Hi all

> >>

> >> Did all the charge children start off very floppy?? Amelie is

> >> rocking side to side and pushing her bum up a lttle bit like the

> >> crab position, but she doesnt want to weight bear on her legs at

> >> all, although she kicks them about like crazy when sat in her chair.

> >>

> >> I am amazed that no one has a lift or elevator, I think they are

> >> trying to say to me that if they fund her bedroom,the conditions are

> >> they have to do the whole hog, she even said every door frame must

> >> be a certain size and the whole house would have to be done, I kept

> >> saying charge kids do walk they are just delayed at walking.

> >>

> >> I need to go back to the OT and speak about this ASAP, if its part

> >> of the terms and conditions then we need to say forget it and

> >> manage, the trouble is she needs the next size up cot and we cant

> >> fit it in our room. so its becoming a serious catch 22.

> >>

> >> Amelie may be allowed home tomorrow if her sats are stable

> >> tonight..fingers crossed.

> >>

> >> Flo if your tuned in does have a lift to go upstairs.?

> >>

> >> lol Lesley

> >>

> >>

> >>

> >>

> >>

> >> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> >> http://www.imagestation.com/album/?id=2117043995

> >>

> >> Membership of this email support groups does not constitute membership

> in

> >> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> >> For information about the CHARGE Syndrome

> >> Foundation or to become a member (and get the newsletter),

> >> please contact marion@... or visit

> >> the web site at http://www.chargesyndrome.org

> >> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >>

> >> 8th International

> >> CHARGE Syndrome Conference, July, 2007. Information will be available

> at

> >> www.chargesyndrome.org or by calling 1-.

> >>