Re: Re: The World According to Westmaas...

[Guest guest]

Michele,

I'm new to this list, but my heart goes out for you. You are not making too

much of this. As others have said, I'm warn out reading your post.

I know one thing I do is put all appointments on a calendar in the kitchen.

Put them in RED so DJ can see or try a different color for each person or

subject: you, Aubrie, shop, insurance, roof and even social events. Let him see

your " hecticness. "

We are military and have just moved, had a new baby, gotten my husband's

other 2 sons for the summer and are getting ready to see all new doctors and get

referrals and evaluations for my CHARGEr 2 year old son. All within 8 weeks.

Stress out if you need to, then take a deep breathe and jump back in.

My prayers will be with you and your family as you go to preop and surgery.

Best of luck.

Carolyn

Mother of Tanis CHARGEr and Denny (2 months), and " steppie " to Brent and

[Guest guest]

We will all be glad when it is over and done and she is back to walking with

her new gait. Prayers are with you in the meantime.

Kim

> Kim -

> Good point. I haven't even had time to worry and think of questions. I

> know it's something that must be done -- and now. What it means as far as

> repeat procedures is almost a mute point. I want to know just for peace of

> mind and so I can be prepared, but it won't change what happens now. I know

> she'll have to go in for the plate to be removed at some point.

>

> When we did the ears, I didn't think about it being an ongoing process and

> it's becoming one. Even with one of the best surgeons in the world. I sort

> of think this hip thing will be ongoing too. Last night at the fair, she

> began crying on the jumping thing (that inflatable jumping ride for kids).

> It's her favorite thing. She'd been on it several times before that night.

> This time, she was in tears just a few minutes after starting and she was

> alone so no one else had bumped her. She said she fell and her hip hurt. I

> can't be sure she was accurate, but it is quite possible that she had some

> pain there. If you could see how she walks and holds herself -- it's so

> interesting. Her whole posture will change with this surgery. You know how

> you can recognize a familiar person from a distance just by their silhouette

> -- hers will be completely different when they change the angle of her hips.

>

> Thanks for bringing up something important for me to be thinking about

> before this preop visit.

>

> Michele W

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

We will all be glad when it is over and done and she is back to walking with

her new gait. Prayers are with you in the meantime.

Kim

> Kim -

> Good point. I haven't even had time to worry and think of questions. I

> know it's something that must be done -- and now. What it means as far as

> repeat procedures is almost a mute point. I want to know just for peace of

> mind and so I can be prepared, but it won't change what happens now. I know

> she'll have to go in for the plate to be removed at some point.

>

> When we did the ears, I didn't think about it being an ongoing process and

> it's becoming one. Even with one of the best surgeons in the world. I sort

> of think this hip thing will be ongoing too. Last night at the fair, she

> began crying on the jumping thing (that inflatable jumping ride for kids).

> It's her favorite thing. She'd been on it several times before that night.

> This time, she was in tears just a few minutes after starting and she was

> alone so no one else had bumped her. She said she fell and her hip hurt. I

> can't be sure she was accurate, but it is quite possible that she had some

> pain there. If you could see how she walks and holds herself -- it's so

> interesting. Her whole posture will change with this surgery. You know how

> you can recognize a familiar person from a distance just by their silhouette

> -- hers will be completely different when they change the angle of her hips.

>

> Thanks for bringing up something important for me to be thinking about

> before this preop visit.

>

> Michele W

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

Things are going well post-op, no complications and she doesn't have to be

seen for a year for cardio. No summer school or therapy this summer for KK,

just school for me, taking two courses trying to get my degree

quicker...oy...

The appts were just regular routine maintenance, nothing major - she needs

to have a minor surgery in September for ear tube removal and a new g tube

but I can handle it - she's actually less busy than me lately but I must say

I am enjoying University a lot. is in Summer School for English,

playing soccer and has a pretty serious girlfriend and is doing a paper

route so things are still busy busy here but not medically related (thank

goodness!) I am looking into some type of summer camp for Kennedy, even

just a morning program as she is already going stir crazy a little....

Oy

Weir

Mom to Kennedy 6 yr old with CHARGE, 14, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

'

Re: The World According to Westmaas...

-

How have things been going after heart surgery? Does Kennedy have any

summer school or therapy? You said you were away for appts so it sounds

like you are busy as well.

Michele

Membership of this email support groups 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 CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Michele,

I can tell that surgery is stressing you out. I just want you to know

that we are thinking about you and your family...we went through the

surgery thing this winter. Postponed because of infections about 5

times. Originally we were scheduled for Thanksgiving and ended up

having it done March 22. And it was a big one. They restructured her

aortic arch. We saw the MRI. Her aorta was so narrowed in one spot

that it looked like a sausage link. In the midst of all this my third

grade job was cut due to monetary issues at our school. Everything

turned out as I will be teaching fifth grade next year and is

doing awesome, so I just want you to know that we will be praying for

you and Aubrie as she faces her surgeries...and you WILL get through

the day at the waterpark!

Good luck,

G.

On Monday, June 28, 2004, at 10:51 PM, Michele Westmaas wrote:

> Aubrie's pre-op appt is Fri. Her surgery is July 22.

>

> Michele W

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

I can tell that surgery is stressing you out. I just want you to know

that we are thinking about you and your family...we went through the

surgery thing this winter. Postponed because of infections about 5

times. Originally we were scheduled for Thanksgiving and ended up

having it done March 22. And it was a big one. They restructured her

aortic arch. We saw the MRI. Her aorta was so narrowed in one spot

that it looked like a sausage link. In the midst of all this my third

grade job was cut due to monetary issues at our school. Everything

turned out as I will be teaching fifth grade next year and is

doing awesome, so I just want you to know that we will be praying for

you and Aubrie as she faces her surgeries...and you WILL get through

the day at the waterpark!

Good luck,

G.

On Monday, June 28, 2004, at 10:51 PM, Michele Westmaas wrote:

> Aubrie's pre-op appt is Fri. Her surgery is July 22.

>

> Michele W

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

I can tell that surgery is stressing you out. I just want you to know

that we are thinking about you and your family...we went through the

surgery thing this winter. Postponed because of infections about 5

times. Originally we were scheduled for Thanksgiving and ended up

having it done March 22. And it was a big one. They restructured her

aortic arch. We saw the MRI. Her aorta was so narrowed in one spot

that it looked like a sausage link. In the midst of all this my third

grade job was cut due to monetary issues at our school. Everything

turned out as I will be teaching fifth grade next year and is

doing awesome, so I just want you to know that we will be praying for

you and Aubrie as she faces her surgeries...and you WILL get through

the day at the waterpark!

Good luck,

G.

On Monday, June 28, 2004, at 10:51 PM, Michele Westmaas wrote:

> Aubrie's pre-op appt is Fri. Her surgery is July 22.

>

> Michele W

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

You are not " a sap " . You are a caring human being. I get caught up in the

problems of the students I teach and have to really work at leaving it at

school. Summers are so valuable to me because I let go and recharge. I

understand that you are not angry at DJ . I wasn't angry either. I also

understand not liking feeling helpless.

You are human and caring and that is very very important.

Lynn

re: The World According to Westmaas...

Lynn-

Thanks for the support. I am not so much angry with DJ as frustrated that

things have to be that way. I don't like to feel out of control so things

that are beyond change or fixing annoy me :-)

My CHARGE family is of critical importance to me. The list provides

information and contacts, but I think the sanity factor is most important to

me. I could find info and contacts thru other means if I had to (granted it

would be much more difficult, but it is possible). But there is no other

way to feel so connected to others in similar situations.

When I am overwhelmed with Aubrie's stuff, I get sad for myself and for the

world at large. I know my problems/issues are not as difficult as many

people have to deal with (whether it's a more disabled child, a critically

ill child, hunger, starvation, poverty, abuse, etc). So then I'm thankful,

but sad that there is so much pain in the world. Am I a sap or what?

Yikes--

Michele W

Membership of this email support groups 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 CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

michele, I understand the husband or whomever not " in charge " of making all

appointments and in our case most decisions, not being there. pat says I

work and give you the money--just let me know where to be and when. nice to

have the $, but would be nice to share some of the burden of all the other

junk going on too. I know he cares and tries to keep up, but even having it

on the calendar and in his calendar doesn't always help--sometimes he needs

a reminder call too. good luck with all this overwhelming stuff and I'm

glad you are taking time for you--I tend to forget to do that until I have a

raging migrane and then when I have to take the time it's no fun!!

re: The World According to Westmaas...

> OK, so we all agree that the life of a CHARGE family can get hectic. But

> what can we do? It's so frustrating. I thought I'd reconciled myself to

> the fact that I just can't do all of the things that other people can do

> because CHARGE takes up a portion of my time and energy that can't be

> replaced. That time and energy has to come from somewhere so it must come

> at the expense of some other thing " regular " people have time for. But I

> can't stop real life from happening. And turns out you can't plan for all

> the CHARGE bumps. I mean, you can't keep your calendar open just waiting

> for the next CHARGE obstacle. So you fill your time with regular life

stuff

> and then, wham, something new comes up. If I hadn't had such advance

> warning for this surgery, I would have had to cancel many commitments this

> fall. That would have been very bad for me career-wise.

>

> Last year, I signed up for a booth at an awesome holiday gift show and had

> to cancel at the last minute because DJ had that job possibility in WY. I

> had planned on getting my name on the list right away for this year. Than

k

> goodness I didn't send it in yet because I'd have had to cancel again.

> Better to not sign up than to cancel twice in a row! I also do child care

> trainings and have turned down many opportunities this fall. At least

those

> folks know my situation and are very understanding.

>

> Who knows what will happen with Chelendipity (my painting and jewelry

> business) when I have to close up shop for 2 months. I am going to try to

> be in whenever I can but it will be sporadic and that's not good -- even

in

> a small town. Already, I've had to close shop for dr appts and have

missed

> customers. I don't know if I'll be able to take many Christmas orders or

> not.

>

> It's very frustrating. And that's just business. Then there's regular

> stuff. We haven't been to the pool at all this summer. Part is due to

cool

> weather, but most is due to being busy with appts on all the days I'm not

> working. We've had the ear dr, Shriners, eye appt, hearing aid appts,

> glasses, plus my own appts to get perimenopause under control before the

> stress of surgery begins. Plus we're in a legal process regarding our

roof

> which was improperly installed and we're dealing with insurance after the

> tornado here last month. None of that can wait. It's already being put

off

> as long as possible. I haven't even begun to battle with sorting out ins

> forms and paying what we owe on this year's dr appts. Then there's the

endo

> that I've never even made an initial appt with...

>

> So what do you guys do to slow things down or to deal with it when things

> get crazy? This is the first time since birth that we've had long-term

> crazy. Short-term sprints I can handle, but this is too much. As

wonderful

> as DJ is and as great as we've been getting along the past few years, it's

> annoying because he doesn't seem to understand why I'm overwhelmed. I

don't

> think I'm making it up, making it more than it is, or creating it. I

think

> it's real and, for the most part, out of my control. He's just not living

> it the way I am to understand why it's so hard to get everything done.

>

> Enough of that. If you have coping strategies, please share! BTW I've

been

> working out regularly (just not last week), taking vitamins, and doing

> things for myself. I take time out to walk to ice cream with the family,

to

> do playdates with friends, etc. I don't take every social opportunity,

but

> enough. The perimenopause thing is a significant part of the difficulty

> coping right now and I'm on my way to getting that under control.

>

> Michele W

> Aubrie's mom (6 yrs)

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

michele, I understand the husband or whomever not " in charge " of making all

appointments and in our case most decisions, not being there. pat says I

work and give you the money--just let me know where to be and when. nice to

have the $, but would be nice to share some of the burden of all the other

junk going on too. I know he cares and tries to keep up, but even having it

on the calendar and in his calendar doesn't always help--sometimes he needs

a reminder call too. good luck with all this overwhelming stuff and I'm

glad you are taking time for you--I tend to forget to do that until I have a

raging migrane and then when I have to take the time it's no fun!!

re: The World According to Westmaas...

> OK, so we all agree that the life of a CHARGE family can get hectic. But

> what can we do? It's so frustrating. I thought I'd reconciled myself to

> the fact that I just can't do all of the things that other people can do

> because CHARGE takes up a portion of my time and energy that can't be

> replaced. That time and energy has to come from somewhere so it must come

> at the expense of some other thing " regular " people have time for. But I

> can't stop real life from happening. And turns out you can't plan for all

> the CHARGE bumps. I mean, you can't keep your calendar open just waiting

> for the next CHARGE obstacle. So you fill your time with regular life

stuff

> and then, wham, something new comes up. If I hadn't had such advance

> warning for this surgery, I would have had to cancel many commitments this

> fall. That would have been very bad for me career-wise.

>

> Last year, I signed up for a booth at an awesome holiday gift show and had

> to cancel at the last minute because DJ had that job possibility in WY. I

> had planned on getting my name on the list right away for this year. Than

k

> goodness I didn't send it in yet because I'd have had to cancel again.

> Better to not sign up than to cancel twice in a row! I also do child care

> trainings and have turned down many opportunities this fall. At least

those

> folks know my situation and are very understanding.

>

> Who knows what will happen with Chelendipity (my painting and jewelry

> business) when I have to close up shop for 2 months. I am going to try to

> be in whenever I can but it will be sporadic and that's not good -- even

in

> a small town. Already, I've had to close shop for dr appts and have

missed

> customers. I don't know if I'll be able to take many Christmas orders or

> not.

>

> It's very frustrating. And that's just business. Then there's regular

> stuff. We haven't been to the pool at all this summer. Part is due to

cool

> weather, but most is due to being busy with appts on all the days I'm not

> working. We've had the ear dr, Shriners, eye appt, hearing aid appts,

> glasses, plus my own appts to get perimenopause under control before the

> stress of surgery begins. Plus we're in a legal process regarding our

roof

> which was improperly installed and we're dealing with insurance after the

> tornado here last month. None of that can wait. It's already being put

off

> as long as possible. I haven't even begun to battle with sorting out ins

> forms and paying what we owe on this year's dr appts. Then there's the

endo

> that I've never even made an initial appt with...

>

> So what do you guys do to slow things down or to deal with it when things

> get crazy? This is the first time since birth that we've had long-term

> crazy. Short-term sprints I can handle, but this is too much. As

wonderful

> as DJ is and as great as we've been getting along the past few years, it's

> annoying because he doesn't seem to understand why I'm overwhelmed. I

don't

> think I'm making it up, making it more than it is, or creating it. I

think

> it's real and, for the most part, out of my control. He's just not living

> it the way I am to understand why it's so hard to get everything done.

>

> Enough of that. If you have coping strategies, please share! BTW I've

been

> working out regularly (just not last week), taking vitamins, and doing

> things for myself. I take time out to walk to ice cream with the family,

to

> do playdates with friends, etc. I don't take every social opportunity,

but

> enough. The perimenopause thing is a significant part of the difficulty

> coping right now and I'm on my way to getting that under control.

>

> Michele W

> Aubrie's mom (6 yrs)

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

michele, I understand the husband or whomever not " in charge " of making all

appointments and in our case most decisions, not being there. pat says I

work and give you the money--just let me know where to be and when. nice to

have the $, but would be nice to share some of the burden of all the other

junk going on too. I know he cares and tries to keep up, but even having it

on the calendar and in his calendar doesn't always help--sometimes he needs

a reminder call too. good luck with all this overwhelming stuff and I'm

glad you are taking time for you--I tend to forget to do that until I have a

raging migrane and then when I have to take the time it's no fun!!

re: The World According to Westmaas...

> OK, so we all agree that the life of a CHARGE family can get hectic. But

> what can we do? It's so frustrating. I thought I'd reconciled myself to

> the fact that I just can't do all of the things that other people can do

> because CHARGE takes up a portion of my time and energy that can't be

> replaced. That time and energy has to come from somewhere so it must come

> at the expense of some other thing " regular " people have time for. But I

> can't stop real life from happening. And turns out you can't plan for all

> the CHARGE bumps. I mean, you can't keep your calendar open just waiting

> for the next CHARGE obstacle. So you fill your time with regular life

stuff

> and then, wham, something new comes up. If I hadn't had such advance

> warning for this surgery, I would have had to cancel many commitments this

> fall. That would have been very bad for me career-wise.

>

> Last year, I signed up for a booth at an awesome holiday gift show and had

> to cancel at the last minute because DJ had that job possibility in WY. I

> had planned on getting my name on the list right away for this year. Than

k

> goodness I didn't send it in yet because I'd have had to cancel again.

> Better to not sign up than to cancel twice in a row! I also do child care

> trainings and have turned down many opportunities this fall. At least

those

> folks know my situation and are very understanding.

>

> Who knows what will happen with Chelendipity (my painting and jewelry

> business) when I have to close up shop for 2 months. I am going to try to

> be in whenever I can but it will be sporadic and that's not good -- even

in

> a small town. Already, I've had to close shop for dr appts and have

missed

> customers. I don't know if I'll be able to take many Christmas orders or

> not.

>

> It's very frustrating. And that's just business. Then there's regular

> stuff. We haven't been to the pool at all this summer. Part is due to

cool

> weather, but most is due to being busy with appts on all the days I'm not

> working. We've had the ear dr, Shriners, eye appt, hearing aid appts,

> glasses, plus my own appts to get perimenopause under control before the

> stress of surgery begins. Plus we're in a legal process regarding our

roof

> which was improperly installed and we're dealing with insurance after the

> tornado here last month. None of that can wait. It's already being put

off

> as long as possible. I haven't even begun to battle with sorting out ins

> forms and paying what we owe on this year's dr appts. Then there's the

endo

> that I've never even made an initial appt with...

>

> So what do you guys do to slow things down or to deal with it when things

> get crazy? This is the first time since birth that we've had long-term

> crazy. Short-term sprints I can handle, but this is too much. As

wonderful

> as DJ is and as great as we've been getting along the past few years, it's

> annoying because he doesn't seem to understand why I'm overwhelmed. I

don't

> think I'm making it up, making it more than it is, or creating it. I

think

> it's real and, for the most part, out of my control. He's just not living

> it the way I am to understand why it's so hard to get everything done.

>

> Enough of that. If you have coping strategies, please share! BTW I've

been

> working out regularly (just not last week), taking vitamins, and doing

> things for myself. I take time out to walk to ice cream with the family,

to

> do playdates with friends, etc. I don't take every social opportunity,

but

> enough. The perimenopause thing is a significant part of the difficulty

> coping right now and I'm on my way to getting that under control.

>

> Michele W

> Aubrie's mom (6 yrs)

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Hi Michele,

Overwhelmed is an experience close to my heart during the last 2-3 months so

appreciate the feeling of staring into space and wondering what to tackle

first. I won't even go into the boring details but just wanted to say what

others have already said; hang in there, it will get slower in due course.

In terms of coping strategies, not sure I have any but know that my swearing

has quadrupled lately. Makes me feel better but have to wait until the

hearing child is asleep!!

Sending lots of positive thoughts and vibes yours and Aubrie's way for the

forthcoming surgery and all other trials and tribulations (head lice and

all!).

Flo

[Guest guest]

Hi Michele,

Overwhelmed is an experience close to my heart during the last 2-3 months so

appreciate the feeling of staring into space and wondering what to tackle

first. I won't even go into the boring details but just wanted to say what

others have already said; hang in there, it will get slower in due course.

In terms of coping strategies, not sure I have any but know that my swearing

has quadrupled lately. Makes me feel better but have to wait until the

hearing child is asleep!!

Sending lots of positive thoughts and vibes yours and Aubrie's way for the

forthcoming surgery and all other trials and tribulations (head lice and

all!).

Flo

[Guest guest]

Hi Michele,

Overwhelmed is an experience close to my heart during the last 2-3 months so

appreciate the feeling of staring into space and wondering what to tackle

first. I won't even go into the boring details but just wanted to say what

others have already said; hang in there, it will get slower in due course.

In terms of coping strategies, not sure I have any but know that my swearing

has quadrupled lately. Makes me feel better but have to wait until the

hearing child is asleep!!

Sending lots of positive thoughts and vibes yours and Aubrie's way for the

forthcoming surgery and all other trials and tribulations (head lice and

all!).

Flo

[Guest guest]

Michele,

Your welcome. You and yours are in my prayers. I think I missed it. When is

Aubrie's hip sugery? I am still waiting to hear when 's ear surgery is .

I left two messages today. I didn't get a real person on the phone at the

number they gave me. Tomorrow I will make some more calls to different numbers

until I get a date set.

Lynn

Re: The World According to Westmaas...

Lynn-

Thanks for the reassurance...

Michele W

Membership of this email support groups 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 CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Michele,

''So he'll be fighting nicotine while I battle with

perimenopause, is doing the preteen thing, and Aubrie has her big

surgery. We're one helluva combination right now. It's funny if you don't

have to live it. Actually, I'm smiling as I type this so it's funny even if

you are living it. We all try to keep our sense of humor.''

Hang in there. I could send you my night sweats, hot flashes, mood swings,

and a college kid trying to figure out the rest of her life in one summer.

Just trying to help.

Seriously, You all are in my daily prayers.

Blessings and Hugs,

Lynn

Re: The World According to Westmaas...

-

I've learned the hard way that I have to take care of myself. So I do my

best to keep myself well.

Plus there is the thing with being a mom of young children where you have to

play with them, do the social outings with friends, etc for their benefit.

We're going to the waterpark on Wed. I don't really need or want to go, but

the kids should get some fun this summer. So off we'll go. It'll mean a

full day away from all the things that will continue to pile up on my " to

do " list. I'll enjoy it, but it wouldn't be my first choice of entertaining

day events. DJ will look at it as totally fun time without realizing that

it's truly part of my job as Mom to do those things. If I didn't have to

spend time doing Mom things (that happen to be fun) I've had lots more time

for the other things that seem to never get done. Does that make sense?

Oh-- to top it off -- DJ is trying to quit smoking! I'm so thrilled! It's

a habit I hate. Never thought he'd consider quitting -- but it's been 10

hours now :-) So he'll be fighting nicotine while I battle with

perimenopause, is doing the preteen thing, and Aubrie has her big

surgery. We're one helluva combination right now. It's funny if you don't

have to live it. Actually, I'm smiling as I type this so it's funny even if

you are living it. We all try to keep our sense of humor.

At least I got a workout in today after missing it for over a week. Boy did

that feel good! I think we've gotten the last of the nits from both Aubrie

and my hair -- spent the am at a good friend's who helped out. What a

relief if we're done with that.

Take care!

Michele W

Membership of this email support groups 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 CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Michele, have fun at the water park--yes I know the feeling....we joined the

pool so the kids would have some funa nd mommy time--do you think I would

put this body in a bathing suit and go in public otherwise? the boys wanted

to go today, but I feel like crap and liam has a very runny nose -so maybe

tomorrow. we are also doing hershey park this summer again for hte

kids--yea we have fun, but it's not my choice of vacations. then again

neither is driving 1/2 across the country every summer, but in order to see

family it has to be done.

I'm chuckling as I read about your issues in your house...here it's, I'm

pmsing and have a cold/sinus infection , pat is working long hours, wants to

work on the house, but has 3 boys wanting attention, timmy is needing

routine again, keegan wants to be glued to the tv and mad I won't let him,

and liam has a cold, and is out of shape having his brothers here all the

time. as bad as your house? probably not, but now you can laugh at me!!!

have a good week, and go down a water slide for me!!

Re: The World According to Westmaas...

> -

> I've learned the hard way that I have to take care of myself. So I do my

> best to keep myself well.

>

> Plus there is the thing with being a mom of young children where you have

to

> play with them, do the social outings with friends, etc for their benefit.

> We're going to the waterpark on Wed. I don't really need or want to go,

but

> the kids should get some fun this summer. So off we'll go. It'll mean a

> full day away from all the things that will continue to pile up on my " to

> do " list. I'll enjoy it, but it wouldn't be my first choice of

entertaining

> day events. DJ will look at it as totally fun time without realizing that

> it's truly part of my job as Mom to do those things. If I didn't have to

> spend time doing Mom things (that happen to be fun) I've had lots more

time

> for the other things that seem to never get done. Does that make sense?

>

> Oh-- to top it off -- DJ is trying to quit smoking! I'm so thrilled!

It's

> a habit I hate. Never thought he'd consider quitting -- but it's been 10

> hours now :-) So he'll be fighting nicotine while I battle with

> perimenopause, is doing the preteen thing, and Aubrie has her big

> surgery. We're one helluva combination right now. It's funny if you

don't

> have to live it. Actually, I'm smiling as I type this so it's funny even

if

> you are living it. We all try to keep our sense of humor.

>

> At least I got a workout in today after missing it for over a week. Boy

did

> that feel good! I think we've gotten the last of the nits from both

Aubrie

> and my hair -- spent the am at a good friend's who helped out. What a

> relief if we're done with that.

>

> Take care!

>

> Michele W

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele:

We'll just miss you at Shriner's if you are going to Chicago. We have

another appointment July 20. We see the Rheumatologist again; and then we

also see the Orthopedic doc for the scholiosis.

We went to the Rheumatologist last week on Tuesday. He did an exam and said

that all of 's joints appear to be " mechanically sound " , meaning no

malformations were evident to indicate why she is having this migratory

joint pain. He did blood draws to check for several things besides

rheumatoid arthritis. Among them are Lyme's Disease, Lupus, staph

infection, and 2 others I think. He said if it were Lyme's, it would be a

" quick fix " as it would mean antibiotics for a month, then we'd be done.

(Said it can be dormant for as much as a year, and went to camp 2

times last Summer.)

He asked about family history of RA and also about psoriasis. He said both

are indicators of familial probability of RA. Rick's sister has psoriasis,

and an aunt has RA. Just got a note from my mom saying that her doc thinks

she may have RA. With all that, I'm afraid we may be looking at Juvenile

Rheumatoid Arthritis for . Anyone have any experience with this?

I'm hoping some of the new joint meds on the market are appropriate for

children. We'd been giving 2 tsp. ibuprofen twice a day for pain when

asks. The doctor said she can have as much as 3 tsp., 3 times a day

(as long as it is not for fever remedy). Fortunately, this has done a lot

to alleviate much of 's pains.

Shriner's was really nice. I wasn't sure what to expect from the website

photo. (Looked like a tiny, old building!) The facility is really wuite

large, very kid-friendly and good for families. made a new

" boyfriend " while playing Super in a waiting room! (And, yes, he was

really, really cute! says so!! I think I'm in trouble here

already!!!) Worst part was we drove ourselves. Getting there was easy.

But we got stuck in traffic leaving town --wall to wall trucks! - and I

missed a left handed exit. Took us 6 hours to get back to Indianapolis:

It's a 3-hour trip. I think I'll be calling the local chapter for a ride in

July!

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+)

Wife of Rick

oganm@...

oganr@...

Re: The World According to Westmaas...

Aubrie's pre-op appt is Fri. Her surgery is July 22.

Michele W

[Guest guest]

Michele:

We'll just miss you at Shriner's if you are going to Chicago. We have

another appointment July 20. We see the Rheumatologist again; and then we

also see the Orthopedic doc for the scholiosis.

We went to the Rheumatologist last week on Tuesday. He did an exam and said

that all of 's joints appear to be " mechanically sound " , meaning no

malformations were evident to indicate why she is having this migratory

joint pain. He did blood draws to check for several things besides

rheumatoid arthritis. Among them are Lyme's Disease, Lupus, staph

infection, and 2 others I think. He said if it were Lyme's, it would be a

" quick fix " as it would mean antibiotics for a month, then we'd be done.

(Said it can be dormant for as much as a year, and went to camp 2

times last Summer.)

He asked about family history of RA and also about psoriasis. He said both

are indicators of familial probability of RA. Rick's sister has psoriasis,

and an aunt has RA. Just got a note from my mom saying that her doc thinks

she may have RA. With all that, I'm afraid we may be looking at Juvenile

Rheumatoid Arthritis for . Anyone have any experience with this?

I'm hoping some of the new joint meds on the market are appropriate for

children. We'd been giving 2 tsp. ibuprofen twice a day for pain when

asks. The doctor said she can have as much as 3 tsp., 3 times a day

(as long as it is not for fever remedy). Fortunately, this has done a lot

to alleviate much of 's pains.

Shriner's was really nice. I wasn't sure what to expect from the website

photo. (Looked like a tiny, old building!) The facility is really wuite

large, very kid-friendly and good for families. made a new

" boyfriend " while playing Super in a waiting room! (And, yes, he was

really, really cute! says so!! I think I'm in trouble here

already!!!) Worst part was we drove ourselves. Getting there was easy.

But we got stuck in traffic leaving town --wall to wall trucks! - and I

missed a left handed exit. Took us 6 hours to get back to Indianapolis:

It's a 3-hour trip. I think I'll be calling the local chapter for a ride in

July!

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+)

Wife of Rick

oganm@...

oganr@...

Re: The World According to Westmaas...

Aubrie's pre-op appt is Fri. Her surgery is July 22.

Michele W

[Guest guest]

Michele:

We'll just miss you at Shriner's if you are going to Chicago. We have

another appointment July 20. We see the Rheumatologist again; and then we

also see the Orthopedic doc for the scholiosis.

We went to the Rheumatologist last week on Tuesday. He did an exam and said

that all of 's joints appear to be " mechanically sound " , meaning no

malformations were evident to indicate why she is having this migratory

joint pain. He did blood draws to check for several things besides

rheumatoid arthritis. Among them are Lyme's Disease, Lupus, staph

infection, and 2 others I think. He said if it were Lyme's, it would be a

" quick fix " as it would mean antibiotics for a month, then we'd be done.

(Said it can be dormant for as much as a year, and went to camp 2

times last Summer.)

He asked about family history of RA and also about psoriasis. He said both

are indicators of familial probability of RA. Rick's sister has psoriasis,

and an aunt has RA. Just got a note from my mom saying that her doc thinks

she may have RA. With all that, I'm afraid we may be looking at Juvenile

Rheumatoid Arthritis for . Anyone have any experience with this?

I'm hoping some of the new joint meds on the market are appropriate for

children. We'd been giving 2 tsp. ibuprofen twice a day for pain when

asks. The doctor said she can have as much as 3 tsp., 3 times a day

(as long as it is not for fever remedy). Fortunately, this has done a lot

to alleviate much of 's pains.

Shriner's was really nice. I wasn't sure what to expect from the website

photo. (Looked like a tiny, old building!) The facility is really wuite

large, very kid-friendly and good for families. made a new

" boyfriend " while playing Super in a waiting room! (And, yes, he was

really, really cute! says so!! I think I'm in trouble here

already!!!) Worst part was we drove ourselves. Getting there was easy.

But we got stuck in traffic leaving town --wall to wall trucks! - and I

missed a left handed exit. Took us 6 hours to get back to Indianapolis:

It's a 3-hour trip. I think I'll be calling the local chapter for a ride in

July!

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+)

Wife of Rick

oganm@...

oganr@...

Re: The World According to Westmaas...

Aubrie's pre-op appt is Fri. Her surgery is July 22.

Michele W

[Guest guest]

Michele,

Sounds like you have the support of your community as well. 's

class had their Christmas party early so she could be there...then

surgery was postponed again...they didn't mind, though.

And she got cards from Makenzie's sixth grade class as well as the

entire fifth grade...awesome,huh?

Glad you're feeling better...it is amazing what we can handle, isn't it?

G

On Tuesday, June 29, 2004, at 10:49 PM, Michele Westmaas wrote:

> -

> Thanks for the support. I'm so glad things worked out for with

> her

> surgery. Usually, in my life history, something that seems like a

> negative

> - like an unexpected job change -- turns out to be positive by

> opening me up

> to an opportunity I would have missed if the change hadn't happened.

> So

> let's hope that whatever comes during these next months -becomes a

> positive

> -- even if my initial reaction is negative :-)

>

> Aubrie's got such good friends. One of her classmates is planning his

> birthday party for before her surgery (his bday is the day after) so

> that

> she can come! Another little classmate's mom has told me over and

> over to

> call her when Aubrie's ready for visitors cuz her little girl is

> anxious to

> visit post-op but she doesn't want to call and intrude before we're

> ready.

> And I'm sure they'll all be clammering to help her at school in her

> wheelchair or with anything she needs.

>

> It'll all work out. Tonight has been one of the least hectic nights

> that

> I've had in ages so I'm feeling better. And the friend that's been

> annoying

> me came in to the shop for lunch (something we usually do often but

> hadn't

> in a while) and we had a great time so I'm feeling better about that

> too.

> I'm sure we'll have fun tomorrow. It'll be so nice to have a " summer "

> day.

> I haven't even had on a swim suit yet!

>

> Again-- thanks for the support and prayers!

>

> Michele W

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

Sounds like you have the support of your community as well. 's

class had their Christmas party early so she could be there...then

surgery was postponed again...they didn't mind, though.

And she got cards from Makenzie's sixth grade class as well as the

entire fifth grade...awesome,huh?

Glad you're feeling better...it is amazing what we can handle, isn't it?

G

On Tuesday, June 29, 2004, at 10:49 PM, Michele Westmaas wrote:

> -

> Thanks for the support. I'm so glad things worked out for with

> her

> surgery. Usually, in my life history, something that seems like a

> negative

> - like an unexpected job change -- turns out to be positive by

> opening me up

> to an opportunity I would have missed if the change hadn't happened.

> So

> let's hope that whatever comes during these next months -becomes a

> positive

> -- even if my initial reaction is negative :-)

>

> Aubrie's got such good friends. One of her classmates is planning his

> birthday party for before her surgery (his bday is the day after) so

> that

> she can come! Another little classmate's mom has told me over and

> over to

> call her when Aubrie's ready for visitors cuz her little girl is

> anxious to

> visit post-op but she doesn't want to call and intrude before we're

> ready.

> And I'm sure they'll all be clammering to help her at school in her

> wheelchair or with anything she needs.

>

> It'll all work out. Tonight has been one of the least hectic nights

> that

> I've had in ages so I'm feeling better. And the friend that's been

> annoying

> me came in to the shop for lunch (something we usually do often but

> hadn't

> in a while) and we had a great time so I'm feeling better about that

> too.

> I'm sure we'll have fun tomorrow. It'll be so nice to have a " summer "

> day.

> I haven't even had on a swim suit yet!

>

> Again-- thanks for the support and prayers!

>

> Michele W

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

Sounds like you have the support of your community as well. 's

class had their Christmas party early so she could be there...then

surgery was postponed again...they didn't mind, though.

And she got cards from Makenzie's sixth grade class as well as the

entire fifth grade...awesome,huh?

Glad you're feeling better...it is amazing what we can handle, isn't it?

G

On Tuesday, June 29, 2004, at 10:49 PM, Michele Westmaas wrote:

> -

> Thanks for the support. I'm so glad things worked out for with

> her

> surgery. Usually, in my life history, something that seems like a

> negative

> - like an unexpected job change -- turns out to be positive by

> opening me up

> to an opportunity I would have missed if the change hadn't happened.

> So

> let's hope that whatever comes during these next months -becomes a

> positive

> -- even if my initial reaction is negative :-)

>

> Aubrie's got such good friends. One of her classmates is planning his

> birthday party for before her surgery (his bday is the day after) so

> that

> she can come! Another little classmate's mom has told me over and

> over to

> call her when Aubrie's ready for visitors cuz her little girl is

> anxious to

> visit post-op but she doesn't want to call and intrude before we're

> ready.

> And I'm sure they'll all be clammering to help her at school in her

> wheelchair or with anything she needs.

>

> It'll all work out. Tonight has been one of the least hectic nights

> that

> I've had in ages so I'm feeling better. And the friend that's been

> annoying

> me came in to the shop for lunch (something we usually do often but

> hadn't

> in a while) and we had a great time so I'm feeling better about that

> too.

> I'm sure we'll have fun tomorrow. It'll be so nice to have a " summer "

> day.

> I haven't even had on a swim suit yet!

>

> Again-- thanks for the support and prayers!

>

> Michele W

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Marilyn,

What were the symptoms that had? Was she saying it hurt alot or

holding her legs? At what age did the pains start?

I'm asking because my 2 year old CHARGEr is often complaining about his legs,

especially his knees. I know kids go through growing pains and bumps and

bruises, but he won't even let me touch them. The only thing that helps when it

happens is warm baths, warm clothes and tylenol. He will be seeing an

orthopedic doctor sometime soon for a yearly check on his back and ribs and to

see if

he will have scoliosis. My husband is so afraid that as far as Tanis has

come, that he will digress and end up in a wheelchair (me too).

Thanks for any info,

Carolyn mother of Tanis 2 CHARGEr, Denny 2 months, and steptsons Brent 9 and

6

[Guest guest]

Marilyn,

What were the symptoms that had? Was she saying it hurt alot or

holding her legs? At what age did the pains start?

I'm asking because my 2 year old CHARGEr is often complaining about his legs,

especially his knees. I know kids go through growing pains and bumps and

bruises, but he won't even let me touch them. The only thing that helps when it

happens is warm baths, warm clothes and tylenol. He will be seeing an

orthopedic doctor sometime soon for a yearly check on his back and ribs and to

see if

he will have scoliosis. My husband is so afraid that as far as Tanis has

come, that he will digress and end up in a wheelchair (me too).

Thanks for any info,

Carolyn mother of Tanis 2 CHARGEr, Denny 2 months, and steptsons Brent 9 and

6