Up date on Kate Magnuson!!

[Guest guest]

Sorry I havent posted in a very long while. But I read every one of

the posts and get soooooo much information from all of the moms and

Chargers out there. Anywho, Kate will be 2 on the 15th of this

month and so much has happened and not happened. Well she had a

Bronch on Fri(for thoes who don't know, she has a trach due to

trachal stenosis and malisia(SP?))ENT said that the Malisia is all

gone:) but the stenosis is still small and needs to grow some more.

Her tounge closes off her airway due to a small jaw, so he looked at

that and said it was getting better too. He still thinks she's too

small yet to go into a big surgery like a reconstruction at her

age. So one more year with the trach. She is doing so much moving.

Her energy level is through the roof, I wish I could bottle it and

sell it. She is beggining to stand independently and took a half

step and then twisted around and fell. She crawls very fast now and

knows where she wants to go. She will stand at the window for an

hour if I would let her, she loves the light. She has also learned

to put her finger in her trach and " talk " . We will be trying the

Passey Muir valve soon too. She still is 100% tube fed and is in st

2x's a week at Easter Seals. We will be starting Vital-Stim T.

soon too so I hope that will give her a jump start. Now here comes

the problem, she hits herself in the head with her open hand and

smacks herself! How do we handle it. I've read some of the

articles and we are trying to redirect her as much as possable but

she still manages to do it. Sometimes I feel like I should just let

her do it because it takes so much time and effort to stand or sit

over her for hours and try to play to keep her hands busy. She does

it in her sleep too and the nurses put the no-nos on her and she

settles down. Do we put the no-nos on her during the day? I don't

know? Anyway, Its late and I've got to go to bed. SLEEP Whats

that!!! More to come later. I'll try to post more often. To all

kiddos we are sending happy thoughts your way..

Love, Kim

mom to Kate(CHaRGEr) and (2yrs old), Tyler(6)

[Guest guest]

Hello Kim,

You know Eva does the samething with slapping herself in her head

but she doesnt do it long, once I distract her she stops and other

times I give her a toy and she hits herself with her toy...lol. I am

still learning how to control it so I wish I could be more help to

you but I did want you to know you are not alone.

Other then that it sounds like Kate is doing awsome. I cant wait til

we can meet up it will be great.

Hugs,

Crystal and Eva (1 year old CHARGEr)

>

> Sorry I havent posted in a very long while. But I read every one

of

> the posts and get soooooo much information from all of the moms

and

> Chargers out there. Anywho, Kate will be 2 on the 15th of this

> month and so much has happened and not happened. Well she had a

> Bronch on Fri(for thoes who don't know, she has a trach due to

> trachal stenosis and malisia(SP?))ENT said that the Malisia is all

> gone:) but the stenosis is still small and needs to grow some

more.

> Her tounge closes off her airway due to a small jaw, so he looked

at

> that and said it was getting better too. He still thinks she's

too

> small yet to go into a big surgery like a reconstruction at her

> age. So one more year with the trach. She is doing so much

moving.

> Her energy level is through the roof, I wish I could bottle it

and

> sell it. She is beggining to stand independently and took a half

> step and then twisted around and fell. She crawls very fast now

and

> knows where she wants to go. She will stand at the window for an

> hour if I would let her, she loves the light. She has also

learned

> to put her finger in her trach and " talk " . We will be trying the

> Passey Muir valve soon too. She still is 100% tube fed and is in

st

> 2x's a week at Easter Seals. We will be starting Vital-Stim T.

> soon too so I hope that will give her a jump start. Now here

comes

> the problem, she hits herself in the head with her open hand and

> smacks herself! How do we handle it. I've read some of the

> articles and we are trying to redirect her as much as possable but

> she still manages to do it. Sometimes I feel like I should just

let

> her do it because it takes so much time and effort to stand or sit

> over her for hours and try to play to keep her hands busy. She

does

> it in her sleep too and the nurses put the no-nos on her and she

> settles down. Do we put the no-nos on her during the day? I

don't

> know? Anyway, Its late and I've got to go to bed. SLEEP Whats

> that!!! More to come later. I'll try to post more often. To all

> kiddos we are sending happy thoughts your way..

>

> Love, Kim

> mom to Kate(CHaRGEr) and (2yrs old), Tyler(6)

>

[Guest guest]

Hi Kim

Amelie taps her head always, although it is rather gentle, and I think

more of a comforting issue, she taps both sides of her head to get

herself to sleep, she doesnt like handling when she needs to go to

sleep, so I figure this is her own way of doing things.

When our paediatrician, told us about her blindness and deafness, she

told us to expect behaviours such as possible head banging for sensory

input, she hasnt exactly ever done this but I was waiting and waiting

for it, so I dont know how true this actually is, or whether some

children are worse than others.

i really sympathise with the lack of sleep, i guess we have all been

through or are still going through this in charge land, we would get

some sleep if it wasnt for the machines alarming all night long they

drive us both insane, so i want to fastforward this part of charge

life asap!!!

great shes doing well apart from this

be well love Lesley and fam (UK)

> Hello Kim,

> You know Eva does the samething with slapping herself in her head

> but she doesnt do it long, once I distract her she stops and other

> times I give her a toy and she hits herself with her toy...lol. I am

> still learning how to control it so I wish I could be more help to

> you but I did want you to know you are not alone.

> Other then that it sounds like Kate is doing awsome. I cant wait til

> we can meet up it will be great.

> Hugs,

> Crystal and Eva (1 year old CHARGEr)

>

>

> >

> > Sorry I havent posted in a very long while. But I read every one

> of

> > the posts and get soooooo much information from all of the moms

> and

> > Chargers out there. Anywho, Kate will be 2 on the 15th of this

> > month and so much has happened and not happened. Well she had a

> > Bronch on Fri(for thoes who don't know, she has a trach due to

> > trachal stenosis and malisia(SP?))ENT said that the Malisia is all

> > gone:) but the stenosis is still small and needs to grow some

> more.

> > Her tounge closes off her airway due to a small jaw, so he looked

> at

> > that and said it was getting better too. He still thinks she's

> too

> > small yet to go into a big surgery like a reconstruction at her

> > age. So one more year with the trach. She is doing so much

> moving.

> > Her energy level is through the roof, I wish I could bottle it

> and

> > sell it. She is beggining to stand independently and took a half

> > step and then twisted around and fell. She crawls very fast now

> and

> > knows where she wants to go. She will stand at the window for an

> > hour if I would let her, she loves the light. She has also

> learned

> > to put her finger in her trach and " talk " . We will be trying the

> > Passey Muir valve soon too. She still is 100% tube fed and is in

> st

> > 2x's a week at Easter Seals. We will be starting Vital-Stim T.

> > soon too so I hope that will give her a jump start. Now here

> comes

> > the problem, she hits herself in the head with her open hand and

> > smacks herself! How do we handle it. I've read some of the

> > articles and we are trying to redirect her as much as possable but

> > she still manages to do it. Sometimes I feel like I should just

> let

> > her do it because it takes so much time and effort to stand or sit

> > over her for hours and try to play to keep her hands busy. She

> does

> > it in her sleep too and the nurses put the no-nos on her and she

> > settles down. Do we put the no-nos on her during the day? I

> don't

> > know? Anyway, Its late and I've got to go to bed. SLEEP Whats

> > that!!! More to come later. I'll try to post more often. To all

> > kiddos we are sending happy thoughts your way..

> >

> > Love, Kim

> > mom to Kate(CHaRGEr) and (2yrs old), Tyler(6)

> >

>

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> Membership of this email support group does not constitute membership in the

> CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

[Guest guest]

Hi Kim

Amelie taps her head always, although it is rather gentle, and I think

more of a comforting issue, she taps both sides of her head to get

herself to sleep, she doesnt like handling when she needs to go to

sleep, so I figure this is her own way of doing things.

When our paediatrician, told us about her blindness and deafness, she

told us to expect behaviours such as possible head banging for sensory

input, she hasnt exactly ever done this but I was waiting and waiting

for it, so I dont know how true this actually is, or whether some

children are worse than others.

i really sympathise with the lack of sleep, i guess we have all been

through or are still going through this in charge land, we would get

some sleep if it wasnt for the machines alarming all night long they

drive us both insane, so i want to fastforward this part of charge

life asap!!!

great shes doing well apart from this

be well love Lesley and fam (UK)

> Hello Kim,

> You know Eva does the samething with slapping herself in her head

> but she doesnt do it long, once I distract her she stops and other

> times I give her a toy and she hits herself with her toy...lol. I am

> still learning how to control it so I wish I could be more help to

> you but I did want you to know you are not alone.

> Other then that it sounds like Kate is doing awsome. I cant wait til

> we can meet up it will be great.

> Hugs,

> Crystal and Eva (1 year old CHARGEr)

>

>

> >

> > Sorry I havent posted in a very long while. But I read every one

> of

> > the posts and get soooooo much information from all of the moms

> and

> > Chargers out there. Anywho, Kate will be 2 on the 15th of this

> > month and so much has happened and not happened. Well she had a

> > Bronch on Fri(for thoes who don't know, she has a trach due to

> > trachal stenosis and malisia(SP?))ENT said that the Malisia is all

> > gone:) but the stenosis is still small and needs to grow some

> more.

> > Her tounge closes off her airway due to a small jaw, so he looked

> at

> > that and said it was getting better too. He still thinks she's

> too

> > small yet to go into a big surgery like a reconstruction at her

> > age. So one more year with the trach. She is doing so much

> moving.

> > Her energy level is through the roof, I wish I could bottle it

> and

> > sell it. She is beggining to stand independently and took a half

> > step and then twisted around and fell. She crawls very fast now

> and

> > knows where she wants to go. She will stand at the window for an

> > hour if I would let her, she loves the light. She has also

> learned

> > to put her finger in her trach and " talk " . We will be trying the

> > Passey Muir valve soon too. She still is 100% tube fed and is in

> st

> > 2x's a week at Easter Seals. We will be starting Vital-Stim T.

> > soon too so I hope that will give her a jump start. Now here

> comes

> > the problem, she hits herself in the head with her open hand and

> > smacks herself! How do we handle it. I've read some of the

> > articles and we are trying to redirect her as much as possable but

> > she still manages to do it. Sometimes I feel like I should just

> let

> > her do it because it takes so much time and effort to stand or sit

> > over her for hours and try to play to keep her hands busy. She

> does

> > it in her sleep too and the nurses put the no-nos on her and she

> > settles down. Do we put the no-nos on her during the day? I

> don't

> > know? Anyway, Its late and I've got to go to bed. SLEEP Whats

> > that!!! More to come later. I'll try to post more often. To all

> > kiddos we are sending happy thoughts your way..

> >

> > Love, Kim

> > mom to Kate(CHaRGEr) and (2yrs old), Tyler(6)

> >

>

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> Membership of this email support group does not constitute membership in the

> CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

[Guest guest]

Hi Kim

Amelie taps her head always, although it is rather gentle, and I think

more of a comforting issue, she taps both sides of her head to get

herself to sleep, she doesnt like handling when she needs to go to

sleep, so I figure this is her own way of doing things.

When our paediatrician, told us about her blindness and deafness, she

told us to expect behaviours such as possible head banging for sensory

input, she hasnt exactly ever done this but I was waiting and waiting

for it, so I dont know how true this actually is, or whether some

children are worse than others.

i really sympathise with the lack of sleep, i guess we have all been

through or are still going through this in charge land, we would get

some sleep if it wasnt for the machines alarming all night long they

drive us both insane, so i want to fastforward this part of charge

life asap!!!

great shes doing well apart from this

be well love Lesley and fam (UK)

> Hello Kim,

> You know Eva does the samething with slapping herself in her head

> but she doesnt do it long, once I distract her she stops and other

> times I give her a toy and she hits herself with her toy...lol. I am

> still learning how to control it so I wish I could be more help to

> you but I did want you to know you are not alone.

> Other then that it sounds like Kate is doing awsome. I cant wait til

> we can meet up it will be great.

> Hugs,

> Crystal and Eva (1 year old CHARGEr)

>

>

> >

> > Sorry I havent posted in a very long while. But I read every one

> of

> > the posts and get soooooo much information from all of the moms

> and

> > Chargers out there. Anywho, Kate will be 2 on the 15th of this

> > month and so much has happened and not happened. Well she had a

> > Bronch on Fri(for thoes who don't know, she has a trach due to

> > trachal stenosis and malisia(SP?))ENT said that the Malisia is all

> > gone:) but the stenosis is still small and needs to grow some

> more.

> > Her tounge closes off her airway due to a small jaw, so he looked

> at

> > that and said it was getting better too. He still thinks she's

> too

> > small yet to go into a big surgery like a reconstruction at her

> > age. So one more year with the trach. She is doing so much

> moving.

> > Her energy level is through the roof, I wish I could bottle it

> and

> > sell it. She is beggining to stand independently and took a half

> > step and then twisted around and fell. She crawls very fast now

> and

> > knows where she wants to go. She will stand at the window for an

> > hour if I would let her, she loves the light. She has also

> learned

> > to put her finger in her trach and " talk " . We will be trying the

> > Passey Muir valve soon too. She still is 100% tube fed and is in

> st

> > 2x's a week at Easter Seals. We will be starting Vital-Stim T.

> > soon too so I hope that will give her a jump start. Now here

> comes

> > the problem, she hits herself in the head with her open hand and

> > smacks herself! How do we handle it. I've read some of the

> > articles and we are trying to redirect her as much as possable but

> > she still manages to do it. Sometimes I feel like I should just

> let

> > her do it because it takes so much time and effort to stand or sit

> > over her for hours and try to play to keep her hands busy. She

> does

> > it in her sleep too and the nurses put the no-nos on her and she

> > settles down. Do we put the no-nos on her during the day? I

> don't

> > know? Anyway, Its late and I've got to go to bed. SLEEP Whats

> > that!!! More to come later. I'll try to post more often. To all

> > kiddos we are sending happy thoughts your way..

> >

> > Love, Kim

> > mom to Kate(CHaRGEr) and (2yrs old), Tyler(6)

> >

>

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> Membership of this email support group does not constitute membership in the

> CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

[Guest guest]

Kim,

Kate is sure growing. You must be so pleased.

I question the hitting the head as behavioral because you say she does it in

her sleep. That sounds like a physical issue. You can't redirect a physical

issue. I'd talk to the doctor and see what they say.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Kim,

Kate is sure growing. You must be so pleased.

I question the hitting the head as behavioral because you say she does it in

her sleep. That sounds like a physical issue. You can't redirect a physical

issue. I'd talk to the doctor and see what they say.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to