I know what you mean!!!  Happening way to fast, isn't it?

Lori

On Tue, Dec 8, 2009 at 8:45 AM, <TAHARTT@...> wrote:

>
>
>
> Oh my heaven, Masha is a junior!?!?
> I am getting old : )
>
>
> Take care,
>
> Traci Hart-Thomas
> Mom to Ana & Henry with AMC and 6 more
>
>

--
Patriotism means to stand by the country. It does not mean to stand by the
president or any other public official, save exactly to the degree in which
he himself stands by the country. It is patriotic to support him insofar as
he efficiently serves the country. It is unpatriotic not to oppose him to
the exact extent that by inefficiently or otherwise he fails in his duty to
stand by the country. In either event, it is unpatriotic not to tell the
truth, whether about the president or anyone else.

Theodore Roosevelt

In God We Trust!!!!!

Big Government IS the problem...not the solution.


[Non-text portions of this message have been removed]

Oh my heaven, Masha is a junior!?!?
I am getting old : )

Take care,

Traci Hart-Thomas
    Mom to Ana & Henry with AMC and 6 more



-----Original Message-----
From: Everett, Lori and Masha Johnson <elm31178@...>
To: avenues2@yahoogroups.com
Sent: Mon, Dec 7, 2009 9:55 pm
Subject: Re: [avenues2] What is going on?




Okay, I'll reply.

Masha is now 15, an 11th grader, dual enrolled (after this week, she will
also
be a sophomore in college) and is doing extremely well. She has had a
few surgeries on her ankles, but all is well. Her doctor gave her the
option of have her wrists placed in a neutral position, but she chose
to not have this surgery.

We've been in FL for 4 years now and still don't think of this place
as home......sad, isn't it. Who would have thought that living within
a hour of Mickey Mouse and Pooh
would be less than wonderful?

Merry Christmas (to heck with politically correct!!!) to all (oh, go ahead
and enjoy your holiday of choice!)!!!

Lori

--
Patriotism means to stand by the country. It does not mean to stand by the
president or any other public official, save exactly to the degree in which
he himself stands by the country. It is patriotic to support him insofar as
he efficiently serves the country. It is unpatriotic not to oppose him to
the exact extent that by inefficiently or otherwise he fails in his duty to
stand by the country. In either event, it is unpatriotic not to tell the
truth, whether about the president or anyone else.

Theodore Roosevelt

In God We Trust!!!!!

Big Government IS the problem...not the solution.

[Non-text portions of this message have been removed]







[Non-text portions of this message have been removed]

Okay, I'll reply.

Masha is now 15, an 11th grader, dual enrolled (after this week, she will
also
be a sophomore in college) and is doing extremely well.  She has had a
few surgeries on her ankles, but all is well.  Her doctor gave her the
option of have her wrists placed in a neutral position, but she chose
to not have this surgery.

We've been in FL for 4 years now and still don't think of this place
as home......sad, isn't it.  Who would have thought that living within
a hour of Mickey Mouse and Pooh
would be less than wonderful?

Merry Christmas (to heck with politically correct!!!) to all (oh, go ahead
and enjoy your holiday of choice!)!!!

Lori


--
Patriotism means to stand by the country. It does not mean to stand by the
president or any other public official, save exactly to the degree in which
he himself stands by the country. It is patriotic to support him insofar as
he efficiently serves the country. It is unpatriotic not to oppose him to
the exact extent that by inefficiently or otherwise he fails in his duty to
stand by the country. In either event, it is unpatriotic not to tell the
truth, whether about the president or anyone else.

Theodore Roosevelt

In God We Trust!!!!!

Big Government IS the problem...not the solution.


[Non-text portions of this message have been removed]

I do now someone here in BC, Canada that has AMC and has a service dog.  She has
her second dog now ad she is a professional woman, works full time etc and the
dog has been an amazing support to her.  She uses a wheelchair but does walk
short distances and the dog pulls her chair on hills slopes, all terrains.  I
keep thinking of getting one but I use a power chair and am very independent so
I cannot see what yet a dog may do for me…..for kids, I know the dogs have
given an enormous boost in quality of life.  I would say to get a dog for the
kids with amc especially who have limited upper body….these dogs make a huge
difference and I have seen a leap in the feeling of independence for kids who
can’t pick things up, pull doors open, even I have seen these dogs help people
who are quadriplegics, get dressed….I bet there could be a whole dog
assistance agency trained just for kids with amc, muscular dystrophy, cp with
(cognitive function etc….)



Go for it Alec  J



Patty.



From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf Of
Gail Brookhart
Sent: December-07-09 2:50 PM
To: avenues2@yahoogroups.com
Subject: Re: [avenues2] What is going on?





Keep us posted on the service dog. Alec has made noises about wanting a service
dog so he's watching all the dog training shows on Animal Planet and likes to
sit down with me to look at my dog breed books.

I assume that this is a Canine Companions for Independence placement?

Anyone else with news of interest about AMC and service dogs, sing out.

Thanks,

Gail

----- Original Message -----
From: MARK & MARY HEINEN
To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
Sent: Monday, December 07, 2009 1:36 PM
Subject: RE: [avenues2] What is going on?

Hi All,

We are still here too...just trying to weather the economic storm. My husband
was diagnosed with lymphatic cancer a couple of years ago (right around the time
the economy really started to tank). Thankfully he came through the cancer with
flying colors, but his industry which is construction obviously did not. He is
self employed and work has been very sparse with no unemployment to draw on.
Thankfully I am employed so although I don't make a ton of money, I do have a
paying, secure (I hope) job.

On a better note, Juliet is now 10 years old and in 5th grade and doing
wonderfully. Our big news is that after 2 years of being on a waiting list for a
service dog, we have finally moved to the top of the list and will be heading
out for Columbus, Ohio Feb 1-13 for team training. How we are going to pay for
the trip costs and whether my 10 year old van can actually make the trip remains
to be seen, but we are in "damn the torpedoes" mode and are going for it!

Nice to hear everyone's updates as it sure had been quite awhile. Peace to
everyone and may good things come your way!

Mary (mom to Avery age 12, Juliet age 10 and Camryn age 8)

----- Original Message -----

From: Dee Dee HARRINGTON

To: avenues2

Sent: Mon, 7 Dec 2009 12:36:12 -0500 (EST)

Subject: RE: [avenues2] What is going on?

We are still here as well. Elijah is seven now and doing good. He loves math and
science but is really struggling with reading and writing. He was just diagnosed
with a bilateral moderate hearing loss and will be having surgery on his right
ear soon to rebuild the bones in his ear. We also need to get to Seattle again
and get his thumb released. Other than that he is doing good. Does anyone know
the dates of the next Seattle Arthro clinic?Dee Dee

> To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>

> From: jddncb@... <mailto:jddncb%40hotmail.com>

> Date: Mon, 7 Dec 2009 10:41:35 -0500

> Subject: RE: [avenues2] What is going on?

>

>

> Wow Gail,

>

>

>

> We are in the same position. My husband lost his job back in August. He is in
HR. I can't believe how bad it is out there. Very scary!!!

>

> Good luck!

>

>

>

> Jaime

>

>

>

>

> To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>

> From: brookhart1@... <mailto:brookhart1%40comcast.net>

> Date: Mon, 7 Dec 2009 10:36:00 -0500

> Subject: Re: [avenues2] What is going on?

>

>

>

>

>

> We're doing pretty well here in Indiana.

>

> Alec is 12 now and in middle school getting good grades and being social with
the world. Our other son is missing his brother since he's still in elementary
school.

>

> Husband lost his job. He works in IT/Computer or Customer Support if you have
any leads.

>

> Gail & Bill, the parents

> Alec & Dane, the children, I think

>

> ----- Original Message -----

> From: Dimitra Giannopoulou

> To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ;
'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'

> Sent: Sunday, November 22, 2009 1:50 PM

> Subject: [avenues2] What is going on?

>

> Dear all,

>

> This is Dimitra from Greece. We have been awfully quit lately. Have I missed

> something.

>

> I have been a member of all AMC groups since 1999 and gone through all

> changes that have happened due to poor e-mail service. Lately, I keep

> receiving only commercial e-mails. Does this happen to you as well?

>

> Our groups have been a life saver for me. Mom of a girl with AMC. I feel

> that it is my duty to keep the groups alive in order to help other moms &

> dads that will feel as I was feeling. Is there something I can do to help?

>

> Dimitra

>

> [Non-text portions of this message have been removed]

>

> ----------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09
02:38:00

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

> __________________________________________________________

> Windows 7: Unclutter your desktop. Learn more.

> http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec
<http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&m\
edia=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL\
_WIN_7secdemo:122009>
&slideid=1&media=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:\
WL:en-US:WWL_WIN_7secdemo:122009

>

> [Non-text portions of this message have been removed]

>

>

>

> ------------------------------------

>

> Yahoo! Groups Links

>

>

>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

----------------------------------------------------------

No virus found in this incoming message.
Checked by AVG - www.avg.com
Version: 9.0.709 / Virus Database: 270.14.97/2550 - Release Date: 12/07/09
02:33:00

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

We are here and life is Crazy. Jason is doing pretty well. He had a tendon
transfer this summer, and is walking better for it on the one foot. They are
going to do his other foot next summer. He's weathering the VEPTR surgeries just
fine. His sister is a grumpy teenager, and I am not quite sure what to do with
her (I think that's pretty normal) I'm still working 50 hour weeks, my 
husband is still employed, which is a good thing since they laid off about 3/4
of the workforce where he works. Umm.. That's all I can think of.




----- Original Message -----
From: "MARK & MARY HEINEN" <mmajch94@...>
To: avenues2@yahoogroups.com
Sent: Monday, December 7, 2009 10:36:25 AM GMT -08:00 US/Canada Pacific
Subject: RE: [avenues2] What is going on?

Hi All,

We are still here too...just trying to weather the economic storm. My husband
was diagnosed with lymphatic cancer a couple of years ago (right around the time
the economy really started to tank). Thankfully he came through the cancer with
flying colors, but his industry which is construction obviously did not. He is
self employed and work has been very sparse with no unemployment to draw on.
 Thankfully I am employed so although I don't make a ton of money, I do have a
paying, secure (I hope) job.

On a better note, Juliet is now 10 years old and in 5th grade and doing
wonderfully. Our big news is that after 2 years of being on a waiting list for a
service dog, we have finally moved to the top of the list and will be heading
out for Columbus, Ohio Feb 1-13 for team training.  How we are going to pay for
the trip costs  and whether my 10 year old van can actually make the trip
remains to be seen,  but we are in "damn the torpedoes" mode and are going for
it!

Nice to hear everyone's updates as it sure had been quite awhile. Peace to
everyone and may good things come your way!

Mary (mom to Avery age 12, Juliet age 10 and Camryn age 8)

----- Original Message -----

From: Dee Dee HARRINGTON

To: avenues2

Sent: Mon, 7 Dec 2009 12:36:12 -0500 (EST)

Subject: RE: [avenues2] What is going on?

































 








  






    


      

      

      



We are still here as well. Elijah is seven now and doing good. He loves math and
science but is really struggling with reading and writing. He was just diagnosed
with a bilateral moderate hearing loss and will be having surgery on his right
ear soon to rebuild the bones in his ear. We also need to get to Seattle again
and get his thumb released. Other than that he is doing good. Does anyone know
the dates of the next Seattle Arthro clinic?Dee Dee


> To: avenues2@yahoogroups.com


> From: jddncb@...


> Date: Mon, 7 Dec 2009 10:41:35 -0500


> Subject: RE: [avenues2] What is going on?


>


>


> Wow Gail,


>


>  


>


> We are in the same position.  My husband lost his job back in August.  He is
in HR.  I can't believe how bad it is out there.  Very scary!!!


>


> Good luck!


>


>  


>


> Jaime


>


>  


>


>


> To: avenues2@yahoogroups.com


> From: brookhart1@...


> Date: Mon, 7 Dec 2009 10:36:00 -0500


> Subject: Re: [avenues2] What is going on?


>


>  


>


>


>


> We're doing pretty well here in Indiana.


>


> Alec is 12 now and in middle school getting good grades and being social with
the world. Our other son is missing his brother since he's still in elementary
school.


>


> Husband lost his job. He works in IT/Computer or Customer Support if you have
any leads.


>


> Gail & Bill, the parents


> Alec & Dane, the children, I think


>


> ----- Original Message -----


> From: Dimitra Giannopoulou


> To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ;
'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'


> Sent: Sunday, November 22, 2009 1:50 PM


> Subject: [avenues2] What is going on?


>


> Dear all,


>


> This is Dimitra from Greece. We have been awfully quit lately. Have I missed


> something.


>


> I have been a member of all AMC groups since 1999 and gone through all


> changes that have happened due to poor e-mail service. Lately, I keep


> receiving only commercial e-mails. Does this happen to you as well?


>


> Our groups have been a life saver for me. Mom of a girl with AMC. I feel


> that it is my duty to keep the groups alive in order to help other moms &


> dads that will feel as I was feeling. Is there something I can do to help?


>


> Dimitra


>


> [Non-text portions of this message have been removed]


>


> ----------------------------------------------------------


>


> No virus found in this incoming message.


> Checked by AVG - www.avg.com


> Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09
02:38:00


>


> [Non-text portions of this message have been removed]


>


>


>


>


>                            


> __________________________________________________________


> Windows 7: Unclutter your desktop. Learn more.


>
http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&me\
dia=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_\
WIN_7secdemo:122009


>


> [Non-text portions of this message have been removed]


>


>


>


> ------------------------------------


>


> Yahoo! Groups Links


>


>


>


                          





[Non-text portions of this message have been removed]









    

    



    

    














  
















[Non-text portions of this message have been removed]



------------------------------------

Yahoo! Groups Links





[Non-text portions of this message have been removed]

Keep us posted on the service dog. Alec has made noises about wanting a service
dog so he's watching all the dog training shows on Animal Planet and likes to
sit down with me to look at my dog breed books.

I assume that this is a Canine Companions for Independence placement?

Anyone else with news of interest about AMC and service dogs, sing out.

Thanks,

Gail


   ----- Original Message -----
   From: MARK & MARY HEINEN
   To: avenues2@yahoogroups.com
   Sent: Monday, December 07, 2009 1:36 PM
   Subject: RE: [avenues2] What is going on?



   Hi All,

   We are still here too...just trying to weather the economic storm. My husband
was diagnosed with lymphatic cancer a couple of years ago (right around the time
the economy really started to tank). Thankfully he came through the cancer with
flying colors, but his industry which is construction obviously did not. He is
self employed and work has been very sparse with no unemployment to draw on.
Thankfully I am employed so although I don't make a ton of money, I do have a
paying, secure (I hope) job.

   On a better note, Juliet is now 10 years old and in 5th grade and doing
wonderfully. Our big news is that after 2 years of being on a waiting list for a
service dog, we have finally moved to the top of the list and will be heading
out for Columbus, Ohio Feb 1-13 for team training. How we are going to pay for
the trip costs and whether my 10 year old van can actually make the trip remains
to be seen, but we are in "damn the torpedoes" mode and are going for it!

   Nice to hear everyone's updates as it sure had been quite awhile. Peace to
everyone and may good things come your way!

   Mary (mom to Avery age 12, Juliet age 10 and Camryn age 8)

   ----- Original Message -----

   From: Dee Dee HARRINGTON

   To: avenues2

   Sent: Mon, 7 Dec 2009 12:36:12 -0500 (EST)

   Subject: RE: [avenues2] What is going on?

   We are still here as well. Elijah is seven now and doing good. He loves math
and science but is really struggling with reading and writing. He was just
diagnosed with a bilateral moderate hearing loss and will be having surgery on
his right ear soon to rebuild the bones in his ear. We also need to get to
Seattle again and get his thumb released. Other than that he is doing good. Does
anyone know the dates of the next Seattle Arthro clinic?Dee Dee

   > To: avenues2@yahoogroups.com

   > From: jddncb@...

   > Date: Mon, 7 Dec 2009 10:41:35 -0500

   > Subject: RE: [avenues2] What is going on?

   >

   >

   > Wow Gail,

   >

   >

   >

   > We are in the same position. My husband lost his job back in August. He is
in HR. I can't believe how bad it is out there. Very scary!!!

   >

   > Good luck!

   >

   >

   >

   > Jaime

   >

   >

   >

   >

   > To: avenues2@yahoogroups.com

   > From: brookhart1@...

   > Date: Mon, 7 Dec 2009 10:36:00 -0500

   > Subject: Re: [avenues2] What is going on?

   >

   >

   >

   >

   >

   > We're doing pretty well here in Indiana.

   >

   > Alec is 12 now and in middle school getting good grades and being social
with the world. Our other son is missing his brother since he's still in
elementary school.

   >

   > Husband lost his job. He works in IT/Computer or Customer Support if you
have any leads.

   >

   > Gail & Bill, the parents

   > Alec & Dane, the children, I think

   >

   > ----- Original Message -----

   > From: Dimitra Giannopoulou

   > To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ;
'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'

   > Sent: Sunday, November 22, 2009 1:50 PM

   > Subject: [avenues2] What is going on?

   >

   > Dear all,

   >

   > This is Dimitra from Greece. We have been awfully quit lately. Have I missed

   > something.

   >

   > I have been a member of all AMC groups since 1999 and gone through all

   > changes that have happened due to poor e-mail service. Lately, I keep

   > receiving only commercial e-mails. Does this happen to you as well?

   >

   > Our groups have been a life saver for me. Mom of a girl with AMC. I feel

   > that it is my duty to keep the groups alive in order to help other moms &

   > dads that will feel as I was feeling. Is there something I can do to help?

   >

   > Dimitra

   >

   > [Non-text portions of this message have been removed]

   >

   > ----------------------------------------------------------

   >

   > No virus found in this incoming message.

   > Checked by AVG - www.avg.com

   > Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09
02:38:00

   >

   > [Non-text portions of this message have been removed]

   >

   >

   >

   >

   >

   > __________________________________________________________

   > Windows 7: Unclutter your desktop. Learn more.

   >
http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&me\
dia=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_\
WIN_7secdemo:122009

   >

   > [Non-text portions of this message have been removed]

   >

   >

   >

   > ------------------------------------

   >

   > Yahoo! Groups Links

   >

   >

   >

   [Non-text portions of this message have been removed]

   [Non-text portions of this message have been removed]






------------------------------------------------------------------------------



   No virus found in this incoming message.
   Checked by AVG - www.avg.com
   Version: 9.0.709 / Virus Database: 270.14.97/2550 - Release Date: 12/07/09
02:33:00


[Non-text portions of this message have been removed]

Hi All,

We are still here too...just trying to weather the economic storm. My husband
was diagnosed with lymphatic cancer a couple of years ago (right around the time
the economy really started to tank). Thankfully he came through the cancer with
flying colors, but his industry which is construction obviously did not. He is
self employed and work has been very sparse with no unemployment to draw on. 
Thankfully I am employed so although I don't make a ton of money, I do have a
paying, secure (I hope) job.

On a better note, Juliet is now 10 years old and in 5th grade and doing
wonderfully. Our big news is that after 2 years of being on a waiting list for a
service dog, we have finally moved to the top of the list and will be heading
out for Columbus, Ohio Feb 1-13 for team training.  How we are going to pay for
the trip costs  and whether my 10 year old van can actually make the trip
remains to be seen,  but we are in "damn the torpedoes" mode and are going for
it!

Nice to hear everyone's updates as it sure had been quite awhile. Peace to
everyone and may good things come your way!

Mary (mom to Avery age 12, Juliet age 10 and Camryn age 8)

----- Original Message -----

From: Dee Dee HARRINGTON

To: avenues2

Sent: Mon, 7 Dec 2009 12:36:12 -0500 (EST)

Subject: RE: [avenues2] What is going on?




























































We are still here as well. Elijah is seven now and doing good. He loves math and
science but is really struggling with reading and writing. He was just diagnosed
with a bilateral moderate hearing loss and will be having surgery on his right
ear soon to rebuild the bones in his ear. We also need to get to Seattle again
and get his thumb released. Other than that he is doing good. Does anyone know
the dates of the next Seattle Arthro clinic?Dee Dee


> To: avenues2@yahoogroups.com


> From: jddncb@...


> Date: Mon, 7 Dec 2009 10:41:35 -0500


> Subject: RE: [avenues2] What is going on?


>


>


> Wow Gail,


>


>


>


> We are in the same position.  My husband lost his job back in August.  He is
in HR.  I can't believe how bad it is out there.  Very scary!!!


>


> Good luck!


>


>


>


> Jaime


>


>


>


>


> To: avenues2@yahoogroups.com


> From: brookhart1@...


> Date: Mon, 7 Dec 2009 10:36:00 -0500


> Subject: Re: [avenues2] What is going on?


>


>


>


>


>


> We're doing pretty well here in Indiana.


>


> Alec is 12 now and in middle school getting good grades and being social with
the world. Our other son is missing his brother since he's still in elementary
school.


>


> Husband lost his job. He works in IT/Computer or Customer Support if you have
any leads.


>


> Gail & Bill, the parents


> Alec & Dane, the children, I think


>


> ----- Original Message -----


> From: Dimitra Giannopoulou


> To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ;
'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'


> Sent: Sunday, November 22, 2009 1:50 PM


> Subject: [avenues2] What is going on?


>


> Dear all,


>


> This is Dimitra from Greece. We have been awfully quit lately. Have I missed


> something.


>


> I have been a member of all AMC groups since 1999 and gone through all


> changes that have happened due to poor e-mail service. Lately, I keep


> receiving only commercial e-mails. Does this happen to you as well?


>


> Our groups have been a life saver for me. Mom of a girl with AMC. I feel


> that it is my duty to keep the groups alive in order to help other moms &


> dads that will feel as I was feeling. Is there something I can do to help?


>


> Dimitra


>


> [Non-text portions of this message have been removed]


>


> ----------------------------------------------------------


>


> No virus found in this incoming message.


> Checked by AVG - www.avg.com


> Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09
02:38:00


>


> [Non-text portions of this message have been removed]


>


>


>


>


>


> __________________________________________________________


> Windows 7: Unclutter your desktop. Learn more.


>
http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&me\
dia=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_\
WIN_7secdemo:122009


>


> [Non-text portions of this message have been removed]


>


>


>


> ------------------------------------


>


> Yahoo! Groups Links


>


>


>








[Non-text portions of this message have been removed]

















































[Non-text portions of this message have been removed]

We are still here as well. Elijah is seven now and doing good. He loves math and
science but is really struggling with reading and writing. He was just diagnosed
with a bilateral moderate hearing loss and will be having surgery on his right
ear soon to rebuild the bones in his ear. We also need to get to Seattle again
and get his thumb released. Other than that he is doing good. Does anyone know
the dates of the next Seattle Arthro clinic?Dee Dee
> To: avenues2@yahoogroups.com
> From: jddncb@...
> Date: Mon, 7 Dec 2009 10:41:35 -0500
> Subject: RE: [avenues2] What is going on?
>
>
> Wow Gail,
>
>
>
> We are in the same position.  My husband lost his job back in August.  He is
in HR.  I can't believe how bad it is out there.  Very scary!!!
>
> Good luck!
>
>
>
> Jaime
>
>
>
>
> To: avenues2@yahoogroups.com
> From: brookhart1@...
> Date: Mon, 7 Dec 2009 10:36:00 -0500
> Subject: Re: [avenues2] What is going on?
>
>
>
>
>
> We're doing pretty well here in Indiana.
>
> Alec is 12 now and in middle school getting good grades and being social with
the world. Our other son is missing his brother since he's still in elementary
school.
>
> Husband lost his job. He works in IT/Computer or Customer Support if you have
any leads.
>
> Gail & Bill, the parents
> Alec & Dane, the children, I think
>
> ----- Original Message -----
> From: Dimitra Giannopoulou
> To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ;
'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'
> Sent: Sunday, November 22, 2009 1:50 PM
> Subject: [avenues2] What is going on?
>
> Dear all,
>
> This is Dimitra from Greece. We have been awfully quit lately. Have I missed
> something.
>
> I have been a member of all AMC groups since 1999 and gone through all
> changes that have happened due to poor e-mail service. Lately, I keep
> receiving only commercial e-mails. Does this happen to you as well?
>
> Our groups have been a life saver for me. Mom of a girl with AMC. I feel
> that it is my duty to keep the groups alive in order to help other moms &
> dads that will feel as I was feeling. Is there something I can do to help?
>
> Dimitra
>
> [Non-text portions of this message have been removed]
>
> ----------------------------------------------------------
>
> No virus found in this incoming message.
> Checked by AVG - www.avg.com
> Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09
02:38:00
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
> _________________________________________________________________
> Windows 7: Unclutter your desktop. Learn more.
>
http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&me\
dia=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_\
WIN_7secdemo:122009
>
> [Non-text portions of this message have been removed]
>
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>


[Non-text portions of this message have been removed]

Wow Gail,



We are in the same position.  My husband lost his job back in August.  He is in
HR.  I can't believe how bad it is out there.  Very scary!!!

Good luck!



Jaime




To: avenues2@yahoogroups.com
From: brookhart1@...
Date: Mon, 7 Dec 2009 10:36:00 -0500
Subject: Re: [avenues2] What is going on?





We're doing pretty well here in Indiana.

Alec is 12 now and in middle school getting good grades and being social with
the world. Our other son is missing his brother since he's still in elementary
school.

Husband lost his job. He works in IT/Computer or Customer Support if you have
any leads.

Gail & Bill, the parents
Alec & Dane, the children, I think

----- Original Message -----
From: Dimitra Giannopoulou
To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ;
'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'
Sent: Sunday, November 22, 2009 1:50 PM
Subject: [avenues2] What is going on?

Dear all,

This is Dimitra from Greece. We have been awfully quit lately. Have I missed
something.

I have been a member of all AMC groups since 1999 and gone through all
changes that have happened due to poor e-mail service. Lately, I keep
receiving only commercial e-mails. Does this happen to you as well?

Our groups have been a life saver for me. Mom of a girl with AMC. I feel
that it is my duty to keep the groups alive in order to help other moms &
dads that will feel as I was feeling. Is there something I can do to help?

Dimitra

[Non-text portions of this message have been removed]

----------------------------------------------------------

No virus found in this incoming message.
Checked by AVG - www.avg.com
Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09
02:38:00

[Non-text portions of this message have been removed]





_________________________________________________________________
Windows 7: Unclutter your desktop. Learn more.
http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&me\
dia=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_\
WIN_7secdemo:122009

[Non-text portions of this message have been removed]

We're doing pretty well here in Indiana.

Alec is 12 now and in middle school getting good grades and being social with
the world. Our other son is missing his brother since he's still in elementary
school.

Husband lost his job. He works in IT/Computer or Customer Support if you have
any leads.

Gail &  Bill, the parents
Alec & Dane, the children, I think


   ----- Original Message -----
   From: Dimitra Giannopoulou
   To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ;
'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'
   Sent: Sunday, November 22, 2009 1:50 PM
   Subject: [avenues2] What is going on?



   Dear all,

   This is Dimitra from Greece. We have been awfully quit lately. Have I missed
   something.

   I have been a member of all AMC groups since 1999 and gone through all
   changes that have happened due to poor e-mail service. Lately, I keep
   receiving only commercial e-mails. Does this happen to you as well?

   Our groups have been a life saver for me. Mom of a girl with AMC. I feel
   that it is my duty to keep the groups alive in order to help other moms &
   dads that will feel as I was feeling. Is there something I can do to help?

   Dimitra

   [Non-text portions of this message have been removed]






------------------------------------------------------------------------------



   No virus found in this incoming message.
   Checked by AVG - www.avg.com
   Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09
02:38:00


[Non-text portions of this message have been removed]

Thanks Traci,



Glad to hear your kids are doing well!



Jaime







To: avenues2@yahoogroups.com
From: TAHARTT@...
Date: Mon, 7 Dec 2009 09:30:09 -0500
Subject: Re: [avenues2] What is going on?






Oh Jamie I am so sorry for Dylan! Secondary infections are such a problem,
especially in kids.
Hope everything heals soon!

And we are still here too - Ana is now 12 and doing very well in school with no
help and Henry is still plugging along, needing his chair more now but other
than that doing well. He had his neck fusion this summer and it went very well.

Take care,

Traci Hart-Thomas
mom to 8, 2 with AMC

-----Original Message-----
From: Jaime and Darrin Brown <jddncb@...>
To: avenues2@yahoogroups.com
Sent: Fri, Nov 6, 2009 9:04 pm
Subject: Re: [avenues2] What is going on?

Thanks Patty!!!

From: Patty Clarke
Sent: Saturday, December 05, 2009 1:27 AM
To: avenues2@yahoogroups.com
Subject: RE: [avenues2] What is going on?

Hi Jaime, I am so sorry to hear about Dylan! Gosh I know I had a hip
replacement and ended up with so many problems, getting the horrible cdif
infection.these infections are so brutal and we never saw them back when I
was a kid going through all my surgeries. I just don't understand why more
attention isn't being paid to this, seems it is only crisis management never
anything preventative is being done.hang in there he is young and will be
resilient to it all!!

Patty.

From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
Of Jaime and Darrin Brown
Sent: November-04-09 8:19 PM
To: avenues2@yahoogroups.com
Subject: Re: [avenues2] What is going on?

We're still here. Dylan (just turned 11) had a tethered spinal cord release
on October 8th and has been in and out of the hospital ever since. It was
supposed to be a very easy surgery, which was followed by intense headaches,

and an infection which took more than a month to clear up. Dylan had to go
back in for surgery November 23 to clean out the infection. He has a 2 inch
deep wound into the base of his spine and is on a wound vac, which is
supposed to suck out all the bad stuff and heal the wound. He is on it
24/7, has to have the dressing changed 3 times a week, and will hopefully be

able to come off it before Christmas. We are so thankful Dylan is alright,
but this was anything but an easy surgery. I would continue to worry about
all the possibilities that could still occur, but I fear my fears. I was
terrified of this seemingly "simple" surgery, assured everything would be
ok, and have watched Dylan (who has been amazing through this all) suffer
for 2 months. Sometimes life is just so unfair to our kids. Sorry we have
been quiet, but we are still here.

Jaime
(mom to Dylan - 11-years-old, Neurogenic Arthrogryposis from an unknown MD
origin
and Casey - 8 - years-old)

--------------------------------------------------
From: "Deb L" <deblop__1@... <mailto:deblop__1%40hotmail.com> >
Sent: Friday, December 04, 2009 1:05 PM
To: "ave2 Email addy" <avenues2@yahoogroups.com
<mailto:avenues2%40yahoogroups.com> >;
<adults_with_arthrogryposis@yahoogroups.com
<mailto:adults_with_arthrogryposis%40yahoogroups.com> >;
<amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> >;
<arthrogryposissupport@yahoogroups.com
<mailto:arthrogryposissupport%40yahoogroups.com> >;
<arthrogryposissupportgroup@yahoogroups.com
<mailto:arthrogryposissupportgroup%40yahoogroups.com> >; "Ave Email"
<avenues@yahoogroups.com <mailto:avenues%40yahoogroups.com> >
Subject: RE: [avenues2] What is going on?

>
> I have been recieving only the ads too.. Is anyone still out there????
>
>
> Life is like a play - Length is not nearly as important as performance.
> ~~~~~~~~~~
> If God brings you to it-He will bring you through it. Lord I love You and
> I need You, come into my heart,Today. For without You I can do nothing.
> ~~~~~~~
>
>
>
>
>
>
> To: Adults_With_Arthrogryposis@yahoogroups.com
<mailto:Adults_With_Arthrogryposis%40yahoogroups.com> ;
> amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> ;
ArthrogryposisSupport@yahoogroups.com
<mailto:ArthrogryposisSupport%40yahoogroups.com> ;
> arthrogryposissupportgroup@yahoogroups.com
<mailto:arthrogryposissupportgroup%40yahoogroups.com> ;
Avenues@yahoogroups.com <mailto:Avenues%40yahoogroups.com> ;
> avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
> From: dimitra@... <mailto:dimitra%40gemdome.gr>
> Date: Sun, 22 Nov 2009 20:50:58 +0200
> Subject: [avenues2] What is going on?
>
>
>
>
>
> Dear all,
>
> This is Dimitra from Greece. We have been awfully quit lately. Have I
> missed
> something.
>
> I have been a member of all AMC groups since 1999 and gone through all
> changes that have happened due to poor e-mail service. Lately, I keep
> receiving only commercial e-mails. Does this happen to you as well?
>
> Our groups have been a life saver for me. Mom of a girl with AMC. I feel
> that it is my duty to keep the groups alive in order to help other moms &
> dads that will feel as I was feeling. Is there something I can do to help?
>
> Dimitra
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
> __________________________________________________________
> Windows Live Hotmail gives you a free,exclusive gift.
>
http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?oc
id=PID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009
>
> [Non-text portions of this message have been removed]
>
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]





_________________________________________________________________
Get gifts for them and cashback for you. Try Bing now.
http://www.bing.com/shopping/search?q=xbox+games&scope=cashback&form=MSHYCB&publ\
=WLHMTAG&crea=TEXT_MSHYCB_Shopping_Giftsforthem_cashback_1x1

[Non-text portions of this message have been removed]

Oh Jamie I am so sorry for Dylan!  Secondary infections are such a problem,
especially in kids.
Hope everything heals soon!

And we are still here too - Ana is now 12 and doing very well in school with no
help and Henry is still plugging along, needing his chair more now but other
than that doing well.  He had his neck fusion this summer and it went very well.

Take care,

Traci Hart-Thomas
    mom to 8, 2 with AMC



-----Original Message-----
From: Jaime and Darrin Brown <jddncb@...>
To: avenues2@yahoogroups.com
Sent: Fri, Nov 6, 2009 9:04 pm
Subject: Re: [avenues2] What is going on?




Thanks Patty!!!

From: Patty Clarke
Sent: Saturday, December 05, 2009 1:27 AM
To: avenues2@yahoogroups.com
Subject: RE: [avenues2] What is going on?

Hi Jaime, I am so sorry to hear about Dylan! Gosh I know I had a hip
replacement and ended up with so many problems, getting the horrible cdif
infection.these infections are so brutal and we never saw them back when I
was a kid going through all my surgeries. I just don't understand why more
attention isn't being paid to this, seems it is only crisis management never
anything preventative is being done.hang in there he is young and will be
resilient to it all!!

Patty.

From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
Of Jaime and Darrin Brown
Sent: November-04-09 8:19 PM
To: avenues2@yahoogroups.com
Subject: Re: [avenues2] What is going on?

We're still here. Dylan (just turned 11) had a tethered spinal cord release
on October 8th and has been in and out of the hospital ever since. It was
supposed to be a very easy surgery, which was followed by intense headaches,

and an infection which took more than a month to clear up. Dylan had to go
back in for surgery November 23 to clean out the infection. He has a 2 inch
deep wound into the base of his spine and is on a wound vac, which is
supposed to suck out all the bad stuff and heal the wound. He is on it
24/7, has to have the dressing changed 3 times a week, and will hopefully be

able to come off it before Christmas. We are so thankful Dylan is alright,
but this was anything but an easy surgery. I would continue to worry about
all the possibilities that could still occur, but I fear my fears. I was
terrified of this seemingly "simple" surgery, assured everything would be
ok, and have watched Dylan (who has been amazing through this all) suffer
for 2 months. Sometimes life is just so unfair to our kids. Sorry we have
been quiet, but we are still here.

Jaime
(mom to Dylan - 11-years-old, Neurogenic Arthrogryposis from an unknown MD
origin
and Casey - 8 - years-old)

--------------------------------------------------
From: "Deb L" <deblop__1@... <mailto:deblop__1%40hotmail.com> >
Sent: Friday, December 04, 2009 1:05 PM
To: "ave2 Email addy" <avenues2@yahoogroups.com
<mailto:avenues2%40yahoogroups.com> >;
<adults_with_arthrogryposis@yahoogroups.com
<mailto:adults_with_arthrogryposis%40yahoogroups.com> >;
<amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> >;
<arthrogryposissupport@yahoogroups.com
<mailto:arthrogryposissupport%40yahoogroups.com> >;
<arthrogryposissupportgroup@yahoogroups.com
<mailto:arthrogryposissupportgroup%40yahoogroups.com> >; "Ave Email"
<avenues@yahoogroups.com <mailto:avenues%40yahoogroups.com> >
Subject: RE: [avenues2] What is going on?

>
> I have been recieving only the ads too.. Is anyone still out there????
>
>
> Life is like a play - Length is not nearly as important as performance.
> ~~~~~~~~~~
> If God brings you to it-He will bring you through it. Lord I love You and
> I need You, come into my heart,Today. For without You I can do nothing.
> ~~~~~~~
>
>
>
>
>
>
> To: Adults_With_Arthrogryposis@yahoogroups.com
<mailto:Adults_With_Arthrogryposis%40yahoogroups.com> ;
> amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> ;
ArthrogryposisSupport@yahoogroups.com
<mailto:ArthrogryposisSupport%40yahoogroups.com> ;
> arthrogryposissupportgroup@yahoogroups.com
<mailto:arthrogryposissupportgroup%40yahoogroups.com> ;
Avenues@yahoogroups.com <mailto:Avenues%40yahoogroups.com> ;
> avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
> From: dimitra@... <mailto:dimitra%40gemdome.gr>
> Date: Sun, 22 Nov 2009 20:50:58 +0200
> Subject: [avenues2] What is going on?
>
>
>
>
>
> Dear all,
>
> This is Dimitra from Greece. We have been awfully quit lately. Have I
> missed
> something.
>
> I have been a member of all AMC groups since 1999 and gone through all
> changes that have happened due to poor e-mail service. Lately, I keep
> receiving only commercial e-mails. Does this happen to you as well?
>
> Our groups have been a life saver for me. Mom of a girl with AMC. I feel
> that it is my duty to keep the groups alive in order to help other moms &
> dads that will feel as I was feeling. Is there something I can do to help?
>
> Dimitra
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
> __________________________________________________________
> Windows Live Hotmail gives you a free,exclusive gift.
>
http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?oc
id=PID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009
>
> [Non-text portions of this message have been removed]
>
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]







[Non-text portions of this message have been removed]

Thanks Patty!!!


From: Patty Clarke
Sent: Saturday, December 05, 2009 1:27 AM
To: avenues2@yahoogroups.com
Subject: RE: [avenues2] What is going on?



Hi Jaime, I am so sorry to hear about Dylan! Gosh I know I had a hip
replacement and ended up with so many problems, getting the horrible cdif
infection.these infections are so brutal and we never saw them back when I
was a kid going through all my surgeries. I just don't understand why more
attention isn't being paid to this, seems it is only crisis management never
anything preventative is being done.hang in there he is young and will be
resilient to it all!!

Patty.

From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
Of Jaime and Darrin Brown
Sent: November-04-09 8:19 PM
To: avenues2@yahoogroups.com
Subject: Re: [avenues2] What is going on?

We're still here. Dylan (just turned 11) had a tethered spinal cord release
on October 8th and has been in and out of the hospital ever since. It was
supposed to be a very easy surgery, which was followed by intense headaches,

and an infection which took more than a month to clear up. Dylan had to go
back in for surgery November 23 to clean out the infection. He has a 2 inch
deep wound into the base of his spine and is on a wound vac, which is
supposed to suck out all the bad stuff and heal the wound. He is on it
24/7, has to have the dressing changed 3 times a week, and will hopefully be

able to come off it before Christmas. We are so thankful Dylan is alright,
but this was anything but an easy surgery. I would continue to worry about
all the possibilities that could still occur, but I fear my fears. I was
terrified of this seemingly "simple" surgery, assured everything would be
ok, and have watched Dylan (who has been amazing through this all) suffer
for 2 months. Sometimes life is just so unfair to our kids. Sorry we have
been quiet, but we are still here.

Jaime
(mom to Dylan - 11-years-old, Neurogenic Arthrogryposis from an unknown MD
origin
and Casey - 8 - years-old)

--------------------------------------------------
From: "Deb L" <deblop__1@... <mailto:deblop__1%40hotmail.com> >
Sent: Friday, December 04, 2009 1:05 PM
To: "ave2 Email addy" <avenues2@yahoogroups.com
<mailto:avenues2%40yahoogroups.com> >;
<adults_with_arthrogryposis@yahoogroups.com
<mailto:adults_with_arthrogryposis%40yahoogroups.com> >;
<amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> >;
<arthrogryposissupport@yahoogroups.com
<mailto:arthrogryposissupport%40yahoogroups.com> >;
<arthrogryposissupportgroup@yahoogroups.com
<mailto:arthrogryposissupportgroup%40yahoogroups.com> >; "Ave Email"
<avenues@yahoogroups.com <mailto:avenues%40yahoogroups.com> >
Subject: RE: [avenues2] What is going on?

>
> I have been recieving only the ads too.. Is anyone still out there????
>
>
> Life is like a play - Length is not nearly as important as performance.
> ~~~~~~~~~~
> If God brings you to it-He will bring you through it. Lord I love You and
> I need You, come into my heart,Today. For without You I can do nothing.
> ~~~~~~~
>
>
>
>
>
>
> To: Adults_With_Arthrogryposis@yahoogroups.com
<mailto:Adults_With_Arthrogryposis%40yahoogroups.com> ;
> amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> ;
ArthrogryposisSupport@yahoogroups.com
<mailto:ArthrogryposisSupport%40yahoogroups.com> ;
> arthrogryposissupportgroup@yahoogroups.com
<mailto:arthrogryposissupportgroup%40yahoogroups.com> ;
Avenues@yahoogroups.com <mailto:Avenues%40yahoogroups.com> ;
> avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
> From: dimitra@... <mailto:dimitra%40gemdome.gr>
> Date: Sun, 22 Nov 2009 20:50:58 +0200
> Subject: [avenues2] What is going on?
>
>
>
>
>
> Dear all,
>
> This is Dimitra from Greece. We have been awfully quit lately. Have I
> missed
> something.
>
> I have been a member of all AMC groups since 1999 and gone through all
> changes that have happened due to poor e-mail service. Lately, I keep
> receiving only commercial e-mails. Does this happen to you as well?
>
> Our groups have been a life saver for me. Mom of a girl with AMC. I feel
> that it is my duty to keep the groups alive in order to help other moms &
> dads that will feel as I was feeling. Is there something I can do to help?
>
> Dimitra
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
> __________________________________________________________
> Windows Live Hotmail gives you a free,exclusive gift.
>
http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?oc
id=PID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009
>
> [Non-text portions of this message have been removed]
>
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>
>

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Hi Jaime, I am so sorry to hear about Dylan!  Gosh I know I had a hip
replacement and ended up with so many problems, getting the horrible cdif
infection.these infections are so brutal and we never saw them back when I
was a kid going through all my surgeries.  I just don't understand why more
attention isn't being paid to this, seems it is only crisis management never
anything preventative is being done.hang in there he is young and will be
resilient to it all!!



Patty.



From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
Of Jaime and Darrin Brown
Sent: November-04-09 8:19 PM
To: avenues2@yahoogroups.com
Subject: Re: [avenues2] What is going on?





We're still here. Dylan (just turned 11) had a tethered spinal cord release
on October 8th and has been in and out of the hospital ever since. It was
supposed to be a very easy surgery, which was followed by intense headaches,

and an infection which took more than a month to clear up. Dylan had to go
back in for surgery November 23 to clean out the infection. He has a 2 inch
deep wound into the base of his spine and is on a wound vac, which is
supposed to suck out all the bad stuff and heal the wound. He is on it
24/7, has to have the dressing changed 3 times a week, and will hopefully be

able to come off it before Christmas. We are so thankful Dylan is alright,
but this was anything but an easy surgery. I would continue to worry about
all the possibilities that could still occur, but I fear my fears. I was
terrified of this seemingly "simple" surgery, assured everything would be
ok, and have watched Dylan (who has been amazing through this all) suffer
for 2 months. Sometimes life is just so unfair to our kids. Sorry we have
been quiet, but we are still here.

Jaime
(mom to Dylan - 11-years-old, Neurogenic Arthrogryposis from an unknown MD
origin
and Casey - 8 - years-old)

--------------------------------------------------
From: "Deb L" <deblop__1@... <mailto:deblop__1%40hotmail.com> >
Sent: Friday, December 04, 2009 1:05 PM
To: "ave2 Email addy" <avenues2@yahoogroups.com
<mailto:avenues2%40yahoogroups.com> >;
<adults_with_arthrogryposis@yahoogroups.com
<mailto:adults_with_arthrogryposis%40yahoogroups.com> >;
<amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> >;
<arthrogryposissupport@yahoogroups.com
<mailto:arthrogryposissupport%40yahoogroups.com> >;
<arthrogryposissupportgroup@yahoogroups.com
<mailto:arthrogryposissupportgroup%40yahoogroups.com> >; "Ave Email"
<avenues@yahoogroups.com <mailto:avenues%40yahoogroups.com> >
Subject: RE: [avenues2] What is going on?

>
> I have been recieving only the ads too.. Is anyone still out there????
>
>
> Life is like a play - Length is not nearly as important as performance.
> ~~~~~~~~~~
> If God brings you to it-He will bring you through it. Lord I love You and
> I need You, come into my heart,Today. For without You I can do nothing.
> ~~~~~~~
>
>
>
>
>
>
> To: Adults_With_Arthrogryposis@yahoogroups.com
<mailto:Adults_With_Arthrogryposis%40yahoogroups.com> ;
> amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> ;
ArthrogryposisSupport@yahoogroups.com
<mailto:ArthrogryposisSupport%40yahoogroups.com> ;
> arthrogryposissupportgroup@yahoogroups.com
<mailto:arthrogryposissupportgroup%40yahoogroups.com> ;
Avenues@yahoogroups.com <mailto:Avenues%40yahoogroups.com> ;
> avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
> From: dimitra@... <mailto:dimitra%40gemdome.gr>
> Date: Sun, 22 Nov 2009 20:50:58 +0200
> Subject: [avenues2] What is going on?
>
>
>
>
>
> Dear all,
>
> This is Dimitra from Greece. We have been awfully quit lately. Have I
> missed
> something.
>
> I have been a member of all AMC groups since 1999 and gone through all
> changes that have happened due to poor e-mail service. Lately, I keep
> receiving only commercial e-mails. Does this happen to you as well?
>
> Our groups have been a life saver for me. Mom of a girl with AMC. I feel
> that it is my duty to keep the groups alive in order to help other moms &
> dads that will feel as I was feeling. Is there something I can do to help?
>
> Dimitra
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
> __________________________________________________________
> Windows Live Hotmail gives you a free,exclusive gift.
>
http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?oc
id=PID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009
>
> [Non-text portions of this message have been removed]
>
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>
>





[Non-text portions of this message have been removed]

We're still here.  Dylan (just turned 11) had a tethered spinal cord release
on October 8th and has been in and out of the hospital ever since.  It was
supposed to be a very easy surgery, which was followed by intense headaches,
and an infection which took more than a month to clear up.  Dylan had to go
back in for surgery November 23 to clean out the infection.  He has a 2 inch
deep wound into the base of his spine and is on a wound vac, which is
supposed to suck out all the bad stuff and heal the wound.  He is on it
24/7, has to have the dressing changed 3 times a week, and will hopefully be
able to come off it before Christmas.  We are so thankful Dylan is alright,
but this was anything but an easy surgery.  I would continue to worry about
all the possibilities that could still occur, but I fear my fears.  I was
terrified of this seemingly "simple" surgery, assured everything would be
ok, and have watched Dylan (who has been amazing through this all) suffer
for 2 months.  Sometimes life is just so unfair to our kids.  Sorry we have
been quiet, but we are still here.

Jaime
(mom to Dylan - 11-years-old, Neurogenic Arthrogryposis from an unknown MD
origin
and Casey - 8 - years-old)

--------------------------------------------------
From: "Deb L" <deblop__1@...>
Sent: Friday, December 04, 2009 1:05 PM
To: "ave2 Email addy" <avenues2@yahoogroups.com>;
<adults_with_arthrogryposis@yahoogroups.com>; <amc_adults@yahoogroups.com>;
<arthrogryposissupport@yahoogroups.com>;
<arthrogryposissupportgroup@yahoogroups.com>; "Ave Email"
<avenues@yahoogroups.com>
Subject: RE: [avenues2] What is going on?

>
> I have been recieving only the ads too..  Is anyone still out there????
>
>
> Life is like a play - Length is not nearly as important as performance.
> ~~~~~~~~~~
> If God brings you to it-He will bring you through it. Lord I love You and
> I need You, come into my heart,Today. For without You I can do nothing.
> ~~~~~~~
>
>
>
>
>
>
> To: Adults_With_Arthrogryposis@yahoogroups.com;
> amc_adults@yahoogroups.com; ArthrogryposisSupport@yahoogroups.com;
> arthrogryposissupportgroup@yahoogroups.com; Avenues@yahoogroups.com;
> avenues2@yahoogroups.com
> From: dimitra@...
> Date: Sun, 22 Nov 2009 20:50:58 +0200
> Subject: [avenues2] What is going on?
>
>
>
>
>
> Dear all,
>
> This is Dimitra from Greece. We have been awfully quit lately. Have I
> missed
> something.
>
> I have been a member of all AMC groups since 1999 and gone through all
> changes that have happened due to poor e-mail service. Lately, I keep
> receiving only commercial e-mails. Does this happen to you as well?
>
> Our groups have been a life saver for me. Mom of a girl with AMC. I feel
> that it is my duty to keep the groups alive in order to help other moms &
> dads that will feel as I was feeling. Is there something I can do to help?
>
> Dimitra
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
> _________________________________________________________________
> Windows Live Hotmail gives you a free,exclusive  gift.
>
http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?ocid=P\
ID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009
>
> [Non-text portions of this message have been removed]
>
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>
>

I have been recieving only the ads too..  Is anyone still out there????


Life is like a play - Length is not nearly as important as performance.
  ~~~~~~~~~~
If God brings you to it-He will bring you through it. Lord I love You and I need
You, come into my heart,Today. For without You I can do nothing. ~~~~~~~






To: Adults_With_Arthrogryposis@yahoogroups.com; amc_adults@yahoogroups.com;
ArthrogryposisSupport@yahoogroups.com;
arthrogryposissupportgroup@yahoogroups.com; Avenues@yahoogroups.com;
avenues2@yahoogroups.com
From: dimitra@...
Date: Sun, 22 Nov 2009 20:50:58 +0200
Subject: [avenues2] What is going on?





Dear all,

This is Dimitra from Greece. We have been awfully quit lately. Have I missed
something.

I have been a member of all AMC groups since 1999 and gone through all
changes that have happened due to poor e-mail service. Lately, I keep
receiving only commercial e-mails. Does this happen to you as well?

Our groups have been a life saver for me. Mom of a girl with AMC. I feel
that it is my duty to keep the groups alive in order to help other moms &
dads that will feel as I was feeling. Is there something I can do to help?

Dimitra

[Non-text portions of this message have been removed]





_________________________________________________________________
Windows Live Hotmail gives you a free,exclusive  gift.
http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?ocid=P\
ID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009

[Non-text portions of this message have been removed]

Dear all,

This is Dimitra from Greece. We have been awfully quit lately. Have I missed
something.

I have been a member of all AMC groups since 1999 and gone through all
changes that have happened due to poor e-mail service. Lately, I keep
receiving only commercial e-mails. Does this happen to you as well?

Our groups have been a life saver for me. Mom of a girl with AMC. I feel
that it is my duty to keep the groups alive in order to help other moms &
dads that will feel as I was feeling. Is there something I can do to help?

Dimitra



[Non-text portions of this message have been removed]

http://www.allan932.webdesignerpages.com/2DeLsQLIQC.html

http://stceciliaconservatory.com/VDEnZPWXOP.html

Yes, true Theresa.., but you cannot vote!  Voting is very important!  So I
still encourage those who are not members yet to become a paid member now,
so that you may participate in the voting process that is occurring in this
important time in the history of AMCSI.  If you are already a member, please
take this time to vote!  Thanks!



:-)



Chris Johnson



   _____

From: Adults_With_Arthrogryposis@yahoogroups.com
[mailto:Adults_With_Arthrogryposis@yahoogroups.com] On Behalf Of Theresa
Lucas
Sent: Thursday, October 22, 2009 7:37 PM
To: Adults_With_Arthrogryposis@yahoogroups.com; Avenues2@yahoogroups.com;
Arthrogryposis@yahoogroups.com; ArthrogryposisSupport@yahoogroups.com;
amc_adults@yahoogroups.com
Subject: Re: [Adults w/ AMC] AMCSI Membership






THANKS Chris!

Just to let everyone know, AMCSI's membership dues runs yearly from Jan-Dec.
We do not pro rate dues.

Also, You still can attend convention & join our forums (
http://www.amcsuppo <http://www.amcsupport.org/forum> rt.org/forum ) for
free without being a paid member!

~Theresa Lucas
http://www.theresal <http://www.theresalucas.com> ucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsuppo <http://www.amcsupport.org> rt.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator

-----Original Message-----
From: Chris Johnson <chris.johnson1@ <mailto:chris.johnson1%40comcast.net>
comcast.net>
To: Adults_With_ <mailto:Adults_With_Arthrogryposis%40yahoogroups.com>
Arthrogryposis@yahoogroups.com; Avenues2@yahoogroup
<mailto:Avenues2%40yahoogroups.com> s.com; Arthrogryposis@
<mailto:Arthrogryposis%40yahoogroups.com> yahoogroups.com;
ArthrogryposisSuppo <mailto:ArthrogryposisSupport%40yahoogroups.com>
rt@yahoogroups.com; amc_adults@yahoogro
<mailto:amc_adults%40yahoogroups.com> ups.com
Sent: Thu, Oct 22, 2009 5:27 pm
Subject: [Adults w/ AMC] AMCSI Membership

Hello Everyone:

Please let me encourge those of you who enjoy the benifits of AMCSI, like
the conventions and forums, to please become a paid member and make your
vote heard!

https://www. <https://www.formspring.com/forms/?578046-azDXdQGUmr>
formspring.com/forms/?578046-azDXdQGUmr

Thank you for your time!

Chris Johnson

AMCSI Voting member.

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

THANKS Chris!

Just to let everyone know, AMCSI's membership dues runs yearly from Jan-Dec. We
do not pro rate dues.

Also, You still can attend convention & join our forums (
http://www.amcsupport.org/forum ) for free without being a paid member!



~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator



-----Original Message-----
From: Chris Johnson <chris.johnson1@...>
To: Adults_With_Arthrogryposis@yahoogroups.com; Avenues2@yahoogroups.com;
Arthrogryposis@yahoogroups.com; ArthrogryposisSupport@yahoogroups.com;
amc_adults@yahoogroups.com
Sent: Thu, Oct 22, 2009 5:27 pm
Subject: [Adults w/ AMC] AMCSI Membership






Hello Everyone:

Please let me encourge those of you who enjoy the benifits of AMCSI, like
the conventions and forums, to please become a paid member and make your
vote heard!

https://www.formspring.com/forms/?578046-azDXdQGUmr

Thank you for your time!


Chris Johnson

AMCSI Voting member.

[Non-text portions of this message have been removed]







[Non-text portions of this message have been removed]

Hello Everyone:



Please let me encourge those of you who enjoy the benifits of AMCSI, like
the conventions and forums, to please become a paid member and make your
vote heard!



https://www.formspring.com/forms/?578046-azDXdQGUmr



Thank you for your time!


Chris Johnson

AMCSI Voting member.







[Non-text portions of this message have been removed]

Funny the endocrinologist is who discovered TJ's problem too. We were there for
bone density testing after he broke his left humerus 3 times. The first time the
pediatrician caught it but the urologist said it was ok. Glad to hear Mason had
an easy recovery.
Thanks-
Sharon
   ----- Original Message -----
   From: mikeaub@...<mailto:mikeaub@...>
   To: avenues2@yahoogroups.com<mailto:avenues2@yahoogroups.com>
   Sent: Sunday, September 13, 2009 12:11 PM
   Subject: Re: [avenues2] a few questions


     Hi Sharon,

   Our son Mason had the surgery for undescended testes at age six and he had an
easy recovery no problems. Same as your son everything was okay but then we were
at an endocrinologist for another problem and she couldn't find "them" so off to
a urologist we went!!!!

   Aubray
   ----- Original Message -----
   From: "tjohns7147" <tjohns6@...<mailto:tjohns6%40msn.com>>
   To: avenues2@yahoogroups.com<mailto:avenues2%40yahoogroups.com>
   Sent: Saturday, September 12, 2009 10:07:01 PM GMT -05:00 US/Canada Eastern
   Subject: [avenues2] a few questions

   So it seems that TJ is either growing or maybe this is a typical age to see
lots of changes. He is now 9 and we have just outgrown the night braces for his
knee that he had been having made from aquaplast by PT. His leg is now too long
so we have to have something custom made. Orthotist says insurance will probably
not pay for this. Question 1- Has anyone else had any luck having this covered
by insurance? Next issue is that he is going to be having surgery for
undescended testes. They were checked when he was maybe 2 1/2 and they were ok,
but now they still haven't come down. Question 2-Has anyone else's child had
this done? It seems pretty simple but I have to wonder if the AMC will make the
recovery any more difficult. Lastly, I am trying to crack down with my children
and have them help around the house more. Any suggestions of chores TJ might be
able to handle? I don't want him to feel left out or have the other kids feel
like he's getting out of hel ping. Dusting was all I could come up with. Sorry
this is so long, and thanks in advance for any advice :)
   Sharon
   mom to Jess 19, Michaela 13, TJ 9 and Tyler 7





[Non-text portions of this message have been removed]

very interesting thought Patty. This is the point where I am at right now,
meaning I need to make a chore chart. He is a very good delegater too.lol Thanks
so much.
Blessings-
Sharon
   ----- Original Message -----
   From: Patty Clarke<mailto:pelclarke@...>
   To: avenues2@yahoogroups.com<mailto:avenues2@yahoogroups.com>
   Sent: Sunday, September 13, 2009 12:05 AM
   Subject: RE: [avenues2] a few questions


     Hi there, well I am not sure about TJ's physical ability so if dusting is
   something he could only do because everything else is too physical then how
   about this as another suggestion:

   Have TJ responsible for setting up the chore schedule each week with mom
   giving input each week if things change. This is not to say TJ enforces the
   chores because that is mom's job and that is not equitable meaning not fair
   that his siblings take "orders" from him but it is a schedule TJ sets up,
   having a meeting with mom each week prior to the schedule change or reminder
   to add things that might change, like the normal taking out the garbage,
   cleaning one's room, etc etc.a different chore could come up that mom
   reminds TJ to add to the chore list and assign such as the monthly washing
   of the car etc.

   This does a couple of things.gives TJ practice and learning how to manage a
   schedule.this learning will serve him very well if in his adolescents and
   adult life if he needs to schedule his personal care attendants if he needs
   this kind if support..or home support chores and simply teaching him
   organization skills for university or a job etc...

   Because he has physical limitations, his siblings learn these how to keep
   order in their rooms adhere to chores which are skills that serve them for
   their adult life, then the example of a chore schedule gives TJ same skills
   just a different way of learning them that will serve him very well with his
   disability and learning he contributes to the house hold just as anyone
   else..

   That is the suggestion I can think of that came to me off the top of my
   head!!!!

   Patty.please let me know if this might work..if so I can pass it on to
   parents of the kids with disabilities I support in my Access job...

   From: avenues2@yahoogroups.com<mailto:avenues2%40yahoogroups.com>
[mailto:avenues2@yahoogroups.com<mailto:avenues2%40yahoogroups.com>] On Behalf
   Of tjohns7147
   Sent: September-12-09 7:07 PM
   To: avenues2@yahoogroups.com<mailto:avenues2%40yahoogroups.com>
   Subject: [avenues2] a few questions

   So it seems that TJ is either growing or maybe this is a typical age to see
   lots of changes. He is now 9 and we have just outgrown the night braces for
   his knee that he had been having made from aquaplast by PT. His leg is now
   too long so we have to have something custom made. Orthotist says insurance
   will probably not pay for this. Question 1- Has anyone else had any luck
   having this covered by insurance? Next issue is that he is going to be
   having surgery for undescended testes. They were checked when he was maybe 2
   1/2 and they were ok, but now they still haven't come down. Question 2-Has
   anyone else's child had this done? It seems pretty simple but I have to
   wonder if the AMC will make the recovery any more difficult. Lastly, I am
   trying to crack down with my children and have them help around the house
   more. Any suggestions of chores TJ might be able to handle? I don't want him
   to feel left out or have the other kids feel like he's getting out of hel
   ping. Dusting was all I could come up with. Sorry this is so long, and
   thanks in advance for any advice :)
   Sharon
   mom to Jess 19, Michaela 13, TJ 9 and Tyler 7

   [Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Hi Sharon,

Our son Mason had the surgery for undescended testes at age six and he had an
easy recovery no problems. Same as your son everything was okay but then we were
at an endocrinologist for another problem and she couldn't find "them" so off to
a urologist we went!!!!

Aubray
----- Original Message -----
From: "tjohns7147" <tjohns6@...>
To: avenues2@yahoogroups.com
Sent: Saturday, September 12, 2009 10:07:01 PM GMT -05:00 US/Canada Eastern
Subject: [avenues2] a few questions






So it seems that TJ is either growing or maybe this is a typical age to see lots
of changes. He is now 9 and we have just outgrown the night braces for his knee
that he had been having made from aquaplast by PT. His leg is now too long so we
have to have something custom made. Orthotist says insurance will probably not
pay for this. Question 1- Has anyone else had any luck having this covered by
insurance? Next issue is that he is going to be having surgery for undescended
testes. They were checked when he was maybe 2 1/2 and they were ok, but now they
still haven't come down. Question 2-Has anyone else's child had this done? It
seems pretty simple but I have to wonder if the AMC will make the recovery any
more difficult. Lastly, I am trying to crack down with my children and have them
help around the house more. Any suggestions of chores TJ might be able to
handle? I don't want him to feel left out or have the other kids feel like he's
getting out of hel ping. Dusting was all I could come up with. Sorry this is so
long, and thanks in advance for any advice :)
Sharon
mom to Jess 19, Michaela 13, TJ 9 and Tyler 7

Hi Sharon,

I would call your insurance company to ask what your plan would cover on the
orthotic he needs. Most plans that I have seen cover at least part of what is
called "durable medical".

We struggle with the chore thing too. Juliet's job is too unload the silverware
from the dishwasher. I pull out the silverware basket and set it on a chair
right next to the silverware drawer and she sorts it and puts it away.

Good luck!

Mary

----- Original Message -----

From: tjohns7147

To: avenues2@yahoogroups.com

Sent: Sat, 12 Sep 2009 22:07:01 -0400 (EDT)

Subject: [avenues2] a few questions











































So it seems that TJ is either growing or maybe this is a typical age to see lots
of changes. He is now 9 and we have just outgrown the night braces for his knee
that he had been having made from aquaplast by PT. His leg is now too long so we
have to have something custom made. Orthotist says insurance will probably not
pay for this. Question 1- Has anyone else had any luck having this covered by
insurance? Next issue is that he is going to be having surgery for undescended
testes. They were checked when he was maybe 2 1/2 and they were ok, but now they
still haven't come down. Question 2-Has anyone else's child had this done? It
seems pretty simple but I have to wonder if the AMC will make the recovery any
more difficult. Lastly, I am trying to crack down with my children and have them
help around the house more. Any suggestions of chores TJ might be able to
handle? I don't want him to feel left out or have the other kids feel like he's
getting out of helping. Dusting was all I could come up with. Sorry this is so
long, and thanks in advance for any advice :)


Sharon


mom to Jess 19, Michaela 13, TJ 9 and Tyler 7





















































[Non-text portions of this message have been removed]

Hi there, well I am not sure about TJ's physical ability so if dusting is
something he could only do because everything else is too physical then how
about this as another suggestion:



Have TJ responsible for setting up the chore schedule each week with mom
giving input each week if things change.  This is not to say TJ enforces the
chores because that is mom's job and that is not equitable meaning not fair
that his siblings take "orders" from him but it is a schedule TJ sets up,
having a meeting with mom each week prior to the schedule change or reminder
to add things that might change, like the normal taking out the garbage,
cleaning one's room, etc etc.a different chore could come up that mom
reminds TJ to add to the chore list and assign such as the monthly washing
of the car etc.



This does a couple of things.gives TJ practice and learning how to manage a
schedule.this learning will serve him very well if in his adolescents and
adult life if he needs to schedule his personal care attendants if he needs
this kind if support..or home support chores and simply teaching him
organization skills for university or a job etc...



Because he has physical limitations, his siblings learn these how to keep
order in their rooms adhere to chores which are skills that serve them for
their adult life, then the example of a chore schedule gives TJ same skills
just a different way of learning them that will serve him very well with his
disability and learning he contributes to the house hold just as anyone
else..



That is the suggestion I can think of that came to me off the top of my
head!!!!



Patty.please let me know if this might work..if so I can pass it on to
parents of the kids with disabilities I support in my Access job...



From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
Of tjohns7147
Sent: September-12-09 7:07 PM
To: avenues2@yahoogroups.com
Subject: [avenues2] a few questions





So it seems that TJ is either growing or maybe this is a typical age to see
lots of changes. He is now 9 and we have just outgrown the night braces for
his knee that he had been having made from aquaplast by PT. His leg is now
too long so we have to have something custom made. Orthotist says insurance
will probably not pay for this. Question 1- Has anyone else had any luck
having this covered by insurance? Next issue is that he is going to be
having surgery for undescended testes. They were checked when he was maybe 2
1/2 and they were ok, but now they still haven't come down. Question 2-Has
anyone else's child had this done? It seems pretty simple but I have to
wonder if the AMC will make the recovery any more difficult. Lastly, I am
trying to crack down with my children and have them help around the house
more. Any suggestions of chores TJ might be able to handle? I don't want him
to feel left out or have the other kids feel like he's getting out of hel
ping. Dusting was all I could come up with. Sorry this is so long, and
thanks in advance for any advice :)
Sharon
mom to Jess 19, Michaela 13, TJ 9 and Tyler 7





[Non-text portions of this message have been removed]

So it seems that TJ is either growing or maybe this is a typical age to see lots
of changes. He is now 9 and we have just outgrown the night braces for his knee
that he had been having made from aquaplast by PT. His leg is now too long so we
have to have something custom made. Orthotist says insurance will probably not
pay for this. Question 1- Has anyone else had any luck having this covered by
insurance? Next issue is that he is going to be having surgery for undescended
testes. They were checked when he was maybe 2 1/2 and they were ok, but now they
still haven't come down. Question 2-Has anyone else's child had this done? It
seems pretty simple but I have to wonder if the AMC will make the recovery any
more difficult. Lastly, I am trying to crack down with my children and have them
help around the house more. Any suggestions of chores TJ might be able to
handle? I don't want him to feel left out or have the other kids feel like he's
getting out of helping. Dusting was all I could come up with. Sorry this is so
long, and thanks in advance for any advice :)
Sharon
mom to Jess 19, Michaela 13, TJ 9 and Tyler 7

It was great to finally meet you also!!!  I can't wait to see you again!!



Jaime





To: avenues2@yahoogroups.com
From: TERRY2745@...
Date: Thu, 27 Aug 2009 09:33:07 -0400
Subject: Re: [avenues2] Re: tethered chord - Reaching out!!!






Hey Jamie,

it was so nice to FINALLY meet you in Philly!!

Wish I had more time to talk! :)

Hope to see you on the boards!

~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator

-----Original Message-----
From: lalabonita <lalabonita@...>
To: avenues2@yahoogroups.com
Sent: Thu, Aug 27, 2009 9:26 am
Subject: [avenues2] Re: tethered chord - Reaching out!!!

Jamie

There is an active discussion on tethered cords at amcsupport. I encourage you
to log in and post your question there.

http://www.amcsupport.org/forum

Link to current discussion on topic
http://www.amcsupport.org/forum/viewtopic.php?f=4&t=6933&p=66194#p66194

Hope someone will be able to help you!!

--- In avenues2@yahoogroups.com, "Jaime" <jddncb@...> wrote:
>
> Hi everyone,
>
> I haven't asked a question in a long time...a very long time, but I watch and
answer from time to time. My son Dylan is 10-years-old...He has Neurogenic
Arthrogryposis, a mutated form of SMA. He doesn't have the SMN deletion, but
fits the "clinical and EMG/Nerve Conduction study" portion of SMA. He doesn't
fit the typical profile of AMC, but he is contracted and therefore diagnosed
with AMC.
>
> Dylan is contracted in his arms (shoulders, elbows, wrists, fingers), legs
(hips, knees, ankles, toes), neck (torticollis), back (scoliosis,
lordosis)...everywhere really!!! Dylan is a smart kid (like the rest), but is
definitely not your typical Amyoplasia. Dylan has almost no voluntary movement,
other than his head movement (which is awesome). He drives his powerchair with
his chin, completely accesses the Internet on his own (head and toe), plays PS2
by himself (when he wants to with various switches), and does pretty much
whatever he wants to with adaptive equipment (just ask and I will share pictures
or ideas).
>
> No matter what it is, we have tried it, adapted it, failed it, succeeded
it...been there, done that, and have a whole bunch of t-shirts (AMC and
MDA)!!!!! If there is a piece of equipment for it, we have tried it, bought it,
owned it, loaned it, and might even have it in our garage if Dylan can't use
it!!!
>
> Dylan has gone to A.I. DuPont Hospital for Children since he was
18-months-old. We drove 21 hours (more than once) to see Dr. Jay, Reenee, and
Marnie when we lived in Illinois (now live in NJ), and truly believe it saved
Dylan's life!!!
>
> Here we are today, almost a decade later. Dylan is doing awesome!! Living,
thriving, doing!!........At this point, you (I, ME) wonder (as a parent), what
more is there??? My child is completely incapable, but doing so much more than
any doctor said he would...For so many years, I have just been so completelt
happy Dylan is alive and doing as much as he is!!!
>
> SO... the reason for my email...Of course, I have a problem...And I come to
you for advise....
>
> I found out by chance (from Dylan Urologist), that Dylan has a Tethered Spinal
Cord and I have no idea what to do. He said we need to see a Neurosurgeon ASAP.
(I have yet to hear from Dr. Jay). I am desperately asking anyone who can help
to tell me what this means, what I have to do, what the recovery is like, what
surgeon to use (keep in mind I live in NJ), and anything else that might be
helpful in this situation.
>
> I suddenly went from a mom who has "been there, done that" to one who has no
idea, no direction, and no help. I am completely lost in this situation and hope
there is someone out there who can help!!
>
>
> That being said...Even if there is no one out there to assist us...if we could
be of any assistance to anyone who has a VERY special needs child, please feel
free to contact me.....Thank you for your assistance.
>
> PS. This is a picture of Dylan with a very good friend! (love ya Scarman!)
>
> Jaime Brown
> (mom to Dylan - 10 - years - old)
>
> [Non-text portions of this message have been removed]
>

[Non-text portions of this message have been removed]









_________________________________________________________________
With Windows Live, you can organize, edit, and share your photos.
http://www.windowslive.com/Desktop/PhotoGallery

[Non-text portions of this message have been removed]

Hey Jamie,

it was so nice to FINALLY meet you in Philly!!

Wish I had more time to talk! :)



Hope to see you on the boards!





~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


-----Original Message-----
From: lalabonita <lalabonita@...>
To: avenues2@yahoogroups.com
Sent: Thu, Aug 27, 2009 9:26 am
Subject: [avenues2] Re: tethered chord - Reaching out!!!






Jamie

There is an active discussion on tethered cords at amcsupport. I encourage you
to log in and post your question there.

http://www.amcsupport.org/forum

Link to current discussion on topic
http://www.amcsupport.org/forum/viewtopic.php?f=4&t=6933&p=66194#p66194

Hope someone will be able to help you!!

--- In avenues2@yahoogroups.com, "Jaime" <jddncb@...> wrote:
>
> Hi everyone,
>
> I haven't asked a question in a long time...a very long time, but I watch and
answer from time to time. My son Dylan is 10-years-old...He has Neurogenic
Arthrogryposis, a mutated form of SMA. He doesn't have the SMN deletion, but
fits the "clinical and EMG/Nerve Conduction study" portion of SMA. He doesn't
fit the typical profile of AMC, but he is contracted and therefore diagnosed
with AMC.
>
> Dylan is contracted in his arms (shoulders, elbows, wrists, fingers), legs
(hips, knees, ankles, toes), neck (torticollis), back (scoliosis,
lordosis)...everywhere really!!! Dylan is a smart kid (like the rest), but is
definitely not your typical Amyoplasia. Dylan has almost no voluntary movement,
other than his head movement (which is awesome). He drives his powerchair with
his chin, completely accesses the Internet on his own (head and toe), plays PS2
by himself (when he wants to with various switches), and does pretty much
whatever he wants to with adaptive equipment (just ask and I will share pictures
or ideas).
>
> No matter what it is, we have tried it, adapted it, failed it, succeeded
it...been there, done that, and have a whole bunch of t-shirts (AMC and
MDA)!!!!! If there is a piece of equipment for it, we have tried it, bought it,
owned it, loaned it, and might even have it in our garage if Dylan can't use
it!!!
>
> Dylan has gone to A.I. DuPont Hospital for Children since he was
18-months-old. We drove 21 hours (more than once) to see Dr. Jay, Reenee, and
Marnie when we lived in Illinois (now live in NJ), and truly believe it saved
Dylan's life!!!
>
> Here we are today, almost a decade later. Dylan is doing awesome!! Living,
thriving, doing!!........At this point, you (I, ME) wonder (as a parent), what
more is there??? My child is completely incapable, but doing so much more than
any doctor said he would...For so many years, I have just been so completelt
happy Dylan is alive and doing as much as he is!!!
>
> SO... the reason for my email...Of course, I have a problem...And I come to
you for advise....
>
> I found out by chance (from Dylan Urologist), that Dylan has a Tethered Spinal
Cord and I have no idea what to do. He said we need to see a Neurosurgeon ASAP.
(I have yet to hear from Dr. Jay). I am desperately asking anyone who can help
to tell me what this means, what I have to do, what the recovery is like, what
surgeon to use (keep in mind I live in NJ), and anything else that might be
helpful in this situation.
>
> I suddenly went from a mom who has "been there, done that" to one who has no
idea, no direction, and no help. I am completely lost in this situation and hope
there is someone out there who can help!!
>
>
> That being said...Even if there is no one out there to assist us...if we could
be of any assistance to anyone who has a VERY special needs child, please feel
free to contact me.....Thank you for your assistance.
>
> PS. This is a picture of Dylan with a very good friend! (love ya Scarman!)
>
> Jaime Brown
> (mom to Dylan - 10 - years - old)
>
> [Non-text portions of this message have been removed]
>








[Non-text portions of this message have been removed]