re: The World According to Westmaas...

[Guest guest]

Michele,

Good to hear from you, I am tired just reading this message....

Give Aubrie (and you!) a big hug from Kennedy & I...you guys sound like

you're going through a lot. I know all about the hectic/no time for

computer thing, I feel like I never have time to communicate on the list

anymore!

Hugs to all,

Weir

Mom to Kennedy 6 yr old with CHARGE, 14, 12 and wife to Graeme.

New Brunswick, Canada

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

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

The World According to Westmaas...

We've had our follow-up appt with the plastic surgeon re: Aubrie's ear and

palate reconstruction. He was very pleased with the palate although it's

a

bit early to tell how much it will improve her speech in the long run.

The

SLP has said that there is at least one sound that she could not produce

before that she can do now in isolation in therapy. To me, that says that

we have lifted the ceiling off of her maximum potential and increased the

possibilities for improvement.

He was not as pleased with her ears. Nor am I. They are a vast

improvement, but just not perfect. They are still a bit floppier than

we'd

hoped. He was being cautious so as not to leave too little room for her

hearing aids. I think it's hard to know in advance how each child will

heal. It's interesting to note that her left side (the side with the

" bad "

ear and " bad " eye) is healing markedly slower than the right. Anyway, he

suggested that we could possibly make improvement with splinting but that

it

requires the splint stay in place 24/7 which is difficult in the hot

summer

months and with the activity level of a young child. However, she will be

immobilized when she has her body cast for 2 months so we will try it

then.

We'll see the dr after and decide how to proceed after seeing how the

splinting works.

Next week is our preop visit at Shriners before her hip surgery. I'm

pleased that hubby (DJ) is going with me. He usually does not take

vacation

time for such things. At this visit though, we will learn the details of

the surgery and I hope we will view the 3D CTscan of her hips

(fascinating).

We'll also go the area blood bank to give a directed-donation of 2 units

of

blood for her surgery. I know blood banks are supposed to be safe, but

why

risk it if you have time to plan ahead? I had been concerned about how

I'd

get 2 donors down to St Louis to give (each person can only give 1 unit

max)

so I'm glad he's able to go.

Another fun issue this week has been head lice. I found Aubrie swarming

with them on Tues (after Monday in St Louis for an eye check and before

leaving Wed for Chicago for ear follow-up). What a nightmare to treat a

kid

who hates shampoo and haircombing. Luckily, she was intent upon finishing

in time for her morning speech session so she dealt with the discomfort

and

let me get it done. We de-loused the family and the house all day and

evening Tues before heading out of town. It was crazy. I had been

dreading

the day when Aubrie would get it. It's very difficult to avoid with

school

age kids. She loves to try on hats in the store too and usually gets to

it

before I can stop her. You can be sure we'll be putting an end to that.

Only 3 weekends until surgery and we have plans for all 3 plus several

appts

and things to take care of on the " to do " list before then. I am not

looking forward to this. Seems that life as we know it will come to a

screeching halt on July 22. How do you guys do it who have to deal with

issues this big all the time? I have been insane since the spring when we

found out we had to do both of these surgeries this year.

To top it off, DJ has a job opportunity in N IL (Dixon -- near you,

?).

It's the town where was born. We loved it there and would not mind

going back. In fact, it might be a good move in the long run. Dixon is a

bit bigger (but still a small town) with more opportunties, better

schools,

a YMCA, and a better economic outlook for the community. Our town is

aging

and absolutely not progressive in its thinking or planning for the future.

We love it here and would love to stay forever, but it may be wiser to

move

somewhere with a better future if it has all the benefits of here and a

better job opportunity for DJ. I've told him to continue with the process

but not talk to me about it until it is more imminent. However, I just

can't stop worrying about it.

Hugs to all... best wishes to all the new babies arrived and arriving...

As

always a little piece of my heart and mind is always with my CHARGE family

even when life is hectic.

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,

Good to hear from you, I am tired just reading this message....

Give Aubrie (and you!) a big hug from Kennedy & I...you guys sound like

you're going through a lot. I know all about the hectic/no time for

computer thing, I feel like I never have time to communicate on the list

anymore!

Hugs to all,

Weir

Mom to Kennedy 6 yr old with CHARGE, 14, 12 and wife to Graeme.

New Brunswick, Canada

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

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

The World According to Westmaas...

We've had our follow-up appt with the plastic surgeon re: Aubrie's ear and

palate reconstruction. He was very pleased with the palate although it's

a

bit early to tell how much it will improve her speech in the long run.

The

SLP has said that there is at least one sound that she could not produce

before that she can do now in isolation in therapy. To me, that says that

we have lifted the ceiling off of her maximum potential and increased the

possibilities for improvement.

He was not as pleased with her ears. Nor am I. They are a vast

improvement, but just not perfect. They are still a bit floppier than

we'd

hoped. He was being cautious so as not to leave too little room for her

hearing aids. I think it's hard to know in advance how each child will

heal. It's interesting to note that her left side (the side with the

" bad "

ear and " bad " eye) is healing markedly slower than the right. Anyway, he

suggested that we could possibly make improvement with splinting but that

it

requires the splint stay in place 24/7 which is difficult in the hot

summer

months and with the activity level of a young child. However, she will be

immobilized when she has her body cast for 2 months so we will try it

then.

We'll see the dr after and decide how to proceed after seeing how the

splinting works.

Next week is our preop visit at Shriners before her hip surgery. I'm

pleased that hubby (DJ) is going with me. He usually does not take

vacation

time for such things. At this visit though, we will learn the details of

the surgery and I hope we will view the 3D CTscan of her hips

(fascinating).

We'll also go the area blood bank to give a directed-donation of 2 units

of

blood for her surgery. I know blood banks are supposed to be safe, but

why

risk it if you have time to plan ahead? I had been concerned about how

I'd

get 2 donors down to St Louis to give (each person can only give 1 unit

max)

so I'm glad he's able to go.

Another fun issue this week has been head lice. I found Aubrie swarming

with them on Tues (after Monday in St Louis for an eye check and before

leaving Wed for Chicago for ear follow-up). What a nightmare to treat a

kid

who hates shampoo and haircombing. Luckily, she was intent upon finishing

in time for her morning speech session so she dealt with the discomfort

and

let me get it done. We de-loused the family and the house all day and

evening Tues before heading out of town. It was crazy. I had been

dreading

the day when Aubrie would get it. It's very difficult to avoid with

school

age kids. She loves to try on hats in the store too and usually gets to

it

before I can stop her. You can be sure we'll be putting an end to that.

Only 3 weekends until surgery and we have plans for all 3 plus several

appts

and things to take care of on the " to do " list before then. I am not

looking forward to this. Seems that life as we know it will come to a

screeching halt on July 22. How do you guys do it who have to deal with

issues this big all the time? I have been insane since the spring when we

found out we had to do both of these surgeries this year.

To top it off, DJ has a job opportunity in N IL (Dixon -- near you,

?).

It's the town where was born. We loved it there and would not mind

going back. In fact, it might be a good move in the long run. Dixon is a

bit bigger (but still a small town) with more opportunties, better

schools,

a YMCA, and a better economic outlook for the community. Our town is

aging

and absolutely not progressive in its thinking or planning for the future.

We love it here and would love to stay forever, but it may be wiser to

move

somewhere with a better future if it has all the benefits of here and a

better job opportunity for DJ. I've told him to continue with the process

but not talk to me about it until it is more imminent. However, I just

can't stop worrying about it.

Hugs to all... best wishes to all the new babies arrived and arriving...

As

always a little piece of my heart and mind is always with my CHARGE family

even when life is hectic.

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,

Good to hear from you, I am tired just reading this message....

Give Aubrie (and you!) a big hug from Kennedy & I...you guys sound like

you're going through a lot. I know all about the hectic/no time for

computer thing, I feel like I never have time to communicate on the list

anymore!

Hugs to all,

Weir

Mom to Kennedy 6 yr old with CHARGE, 14, 12 and wife to Graeme.

New Brunswick, Canada

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

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

The World According to Westmaas...

We've had our follow-up appt with the plastic surgeon re: Aubrie's ear and

palate reconstruction. He was very pleased with the palate although it's

a

bit early to tell how much it will improve her speech in the long run.

The

SLP has said that there is at least one sound that she could not produce

before that she can do now in isolation in therapy. To me, that says that

we have lifted the ceiling off of her maximum potential and increased the

possibilities for improvement.

He was not as pleased with her ears. Nor am I. They are a vast

improvement, but just not perfect. They are still a bit floppier than

we'd

hoped. He was being cautious so as not to leave too little room for her

hearing aids. I think it's hard to know in advance how each child will

heal. It's interesting to note that her left side (the side with the

" bad "

ear and " bad " eye) is healing markedly slower than the right. Anyway, he

suggested that we could possibly make improvement with splinting but that

it

requires the splint stay in place 24/7 which is difficult in the hot

summer

months and with the activity level of a young child. However, she will be

immobilized when she has her body cast for 2 months so we will try it

then.

We'll see the dr after and decide how to proceed after seeing how the

splinting works.

Next week is our preop visit at Shriners before her hip surgery. I'm

pleased that hubby (DJ) is going with me. He usually does not take

vacation

time for such things. At this visit though, we will learn the details of

the surgery and I hope we will view the 3D CTscan of her hips

(fascinating).

We'll also go the area blood bank to give a directed-donation of 2 units

of

blood for her surgery. I know blood banks are supposed to be safe, but

why

risk it if you have time to plan ahead? I had been concerned about how

I'd

get 2 donors down to St Louis to give (each person can only give 1 unit

max)

so I'm glad he's able to go.

Another fun issue this week has been head lice. I found Aubrie swarming

with them on Tues (after Monday in St Louis for an eye check and before

leaving Wed for Chicago for ear follow-up). What a nightmare to treat a

kid

who hates shampoo and haircombing. Luckily, she was intent upon finishing

in time for her morning speech session so she dealt with the discomfort

and

let me get it done. We de-loused the family and the house all day and

evening Tues before heading out of town. It was crazy. I had been

dreading

the day when Aubrie would get it. It's very difficult to avoid with

school

age kids. She loves to try on hats in the store too and usually gets to

it

before I can stop her. You can be sure we'll be putting an end to that.

Only 3 weekends until surgery and we have plans for all 3 plus several

appts

and things to take care of on the " to do " list before then. I am not

looking forward to this. Seems that life as we know it will come to a

screeching halt on July 22. How do you guys do it who have to deal with

issues this big all the time? I have been insane since the spring when we

found out we had to do both of these surgeries this year.

To top it off, DJ has a job opportunity in N IL (Dixon -- near you,

?).

It's the town where was born. We loved it there and would not mind

going back. In fact, it might be a good move in the long run. Dixon is a

bit bigger (but still a small town) with more opportunties, better

schools,

a YMCA, and a better economic outlook for the community. Our town is

aging

and absolutely not progressive in its thinking or planning for the future.

We love it here and would love to stay forever, but it may be wiser to

move

somewhere with a better future if it has all the benefits of here and a

better job opportunity for DJ. I've told him to continue with the process

but not talk to me about it until it is more imminent. However, I just

can't stop worrying about it.

Hugs to all... best wishes to all the new babies arrived and arriving...

As

always a little piece of my heart and mind is always with my CHARGE family

even when life is hectic.

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]

,

I concur--reading MIchele's post made me tired, too!

Good luck with it all, Michele.

Also, for those of your who might be interested, today is Helen Keller's

birthday.

Pam

[Guest guest]

,

I concur--reading MIchele's post made me tired, too!

Good luck with it all, Michele.

Also, for those of your who might be interested, today is Helen Keller's

birthday.

Pam

[Guest guest]

Michele,

I recently heard that this surgery needs done again after children grow. I

have no idea if that is true, but maybe you can ask when you go to

Shriner's. I hate to add more to your plate, but I know I would want to

know, before I went in and had that major of a surgery done.

Kim L

> We've had our follow-up appt with the plastic surgeon re: Aubrie's ear and

> palate reconstruction. He was very pleased with the palate although it's a

> bit early to tell how much it will improve her speech in the long run. The

> SLP has said that there is at least one sound that she could not produce

> before that she can do now in isolation in therapy. To me, that says that

> we have lifted the ceiling off of her maximum potential and increased the

> possibilities for improvement.

>

> He was not as pleased with her ears. Nor am I. They are a vast

> improvement, but just not perfect. They are still a bit floppier than we'd

> hoped. He was being cautious so as not to leave too little room for her

> hearing aids. I think it's hard to know in advance how each child will

> heal. It's interesting to note that her left side (the side with the " bad "

> ear and " bad " eye) is healing markedly slower than the right. Anyway, he

> suggested that we could possibly make improvement with splinting but that it

> requires the splint stay in place 24/7 which is difficult in the hot summer

> months and with the activity level of a young child. However, she will be

> immobilized when she has her body cast for 2 months so we will try it then.

> We'll see the dr after and decide how to proceed after seeing how the

> splinting works.

>

> Next week is our preop visit at Shriners before her hip surgery. I'm

> pleased that hubby (DJ) is going with me. He usually does not take vacation

> time for such things. At this visit though, we will learn the details of

> the surgery and I hope we will view the 3D CTscan of her hips (fascinating).

> We'll also go the area blood bank to give a directed-donation of 2 units of

> blood for her surgery. I know blood banks are supposed to be safe, but why

> risk it if you have time to plan ahead? I had been concerned about how I'd

> get 2 donors down to St Louis to give (each person can only give 1 unit max)

> so I'm glad he's able to go.

>

> Another fun issue this week has been head lice. I found Aubrie swarming

> with them on Tues (after Monday in St Louis for an eye check and before

> leaving Wed for Chicago for ear follow-up). What a nightmare to treat a kid

> who hates shampoo and haircombing. Luckily, she was intent upon finishing

> in time for her morning speech session so she dealt with the discomfort and

> let me get it done. We de-loused the family and the house all day and

> evening Tues before heading out of town. It was crazy. I had been dreading

> the day when Aubrie would get it. It's very difficult to avoid with school

> age kids. She loves to try on hats in the store too and usually gets to it

> before I can stop her. You can be sure we'll be putting an end to that.

>

> Only 3 weekends until surgery and we have plans for all 3 plus several appts

> and things to take care of on the " to do " list before then. I am not

> looking forward to this. Seems that life as we know it will come to a

> screeching halt on July 22. How do you guys do it who have to deal with

> issues this big all the time? I have been insane since the spring when we

> found out we had to do both of these surgeries this year.

>

> To top it off, DJ has a job opportunity in N IL (Dixon -- near you, ?).

> It's the town where was born. We loved it there and would not mind

> going back. In fact, it might be a good move in the long run. Dixon is a

> bit bigger (but still a small town) with more opportunties, better schools,

> a YMCA, and a better economic outlook for the community. Our town is aging

> and absolutely not progressive in its thinking or planning for the future.

> We love it here and would love to stay forever, but it may be wiser to move

> somewhere with a better future if it has all the benefits of here and a

> better job opportunity for DJ. I've told him to continue with the process

> but not talk to me about it until it is more imminent. However, I just

> can't stop worrying about it.

>

> Hugs to all... best wishes to all the new babies arrived and arriving... As

> always a little piece of my heart and mind is always with my CHARGE family

> even when life is hectic.

>

> 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 recently heard that this surgery needs done again after children grow. I

have no idea if that is true, but maybe you can ask when you go to

Shriner's. I hate to add more to your plate, but I know I would want to

know, before I went in and had that major of a surgery done.

Kim L

> We've had our follow-up appt with the plastic surgeon re: Aubrie's ear and

> palate reconstruction. He was very pleased with the palate although it's a

> bit early to tell how much it will improve her speech in the long run. The

> SLP has said that there is at least one sound that she could not produce

> before that she can do now in isolation in therapy. To me, that says that

> we have lifted the ceiling off of her maximum potential and increased the

> possibilities for improvement.

>

> He was not as pleased with her ears. Nor am I. They are a vast

> improvement, but just not perfect. They are still a bit floppier than we'd

> hoped. He was being cautious so as not to leave too little room for her

> hearing aids. I think it's hard to know in advance how each child will

> heal. It's interesting to note that her left side (the side with the " bad "

> ear and " bad " eye) is healing markedly slower than the right. Anyway, he

> suggested that we could possibly make improvement with splinting but that it

> requires the splint stay in place 24/7 which is difficult in the hot summer

> months and with the activity level of a young child. However, she will be

> immobilized when she has her body cast for 2 months so we will try it then.

> We'll see the dr after and decide how to proceed after seeing how the

> splinting works.

>

> Next week is our preop visit at Shriners before her hip surgery. I'm

> pleased that hubby (DJ) is going with me. He usually does not take vacation

> time for such things. At this visit though, we will learn the details of

> the surgery and I hope we will view the 3D CTscan of her hips (fascinating).

> We'll also go the area blood bank to give a directed-donation of 2 units of

> blood for her surgery. I know blood banks are supposed to be safe, but why

> risk it if you have time to plan ahead? I had been concerned about how I'd

> get 2 donors down to St Louis to give (each person can only give 1 unit max)

> so I'm glad he's able to go.

>

> Another fun issue this week has been head lice. I found Aubrie swarming

> with them on Tues (after Monday in St Louis for an eye check and before

> leaving Wed for Chicago for ear follow-up). What a nightmare to treat a kid

> who hates shampoo and haircombing. Luckily, she was intent upon finishing

> in time for her morning speech session so she dealt with the discomfort and

> let me get it done. We de-loused the family and the house all day and

> evening Tues before heading out of town. It was crazy. I had been dreading

> the day when Aubrie would get it. It's very difficult to avoid with school

> age kids. She loves to try on hats in the store too and usually gets to it

> before I can stop her. You can be sure we'll be putting an end to that.

>

> Only 3 weekends until surgery and we have plans for all 3 plus several appts

> and things to take care of on the " to do " list before then. I am not

> looking forward to this. Seems that life as we know it will come to a

> screeching halt on July 22. How do you guys do it who have to deal with

> issues this big all the time? I have been insane since the spring when we

> found out we had to do both of these surgeries this year.

>

> To top it off, DJ has a job opportunity in N IL (Dixon -- near you, ?).

> It's the town where was born. We loved it there and would not mind

> going back. In fact, it might be a good move in the long run. Dixon is a

> bit bigger (but still a small town) with more opportunties, better schools,

> a YMCA, and a better economic outlook for the community. Our town is aging

> and absolutely not progressive in its thinking or planning for the future.

> We love it here and would love to stay forever, but it may be wiser to move

> somewhere with a better future if it has all the benefits of here and a

> better job opportunity for DJ. I've told him to continue with the process

> but not talk to me about it until it is more imminent. However, I just

> can't stop worrying about it.

>

> Hugs to all... best wishes to all the new babies arrived and arriving... As

> always a little piece of my heart and mind is always with my CHARGE family

> even when life is hectic.

>

> 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 recently heard that this surgery needs done again after children grow. I

have no idea if that is true, but maybe you can ask when you go to

Shriner's. I hate to add more to your plate, but I know I would want to

know, before I went in and had that major of a surgery done.

Kim L

> We've had our follow-up appt with the plastic surgeon re: Aubrie's ear and

> palate reconstruction. He was very pleased with the palate although it's a

> bit early to tell how much it will improve her speech in the long run. The

> SLP has said that there is at least one sound that she could not produce

> before that she can do now in isolation in therapy. To me, that says that

> we have lifted the ceiling off of her maximum potential and increased the

> possibilities for improvement.

>

> He was not as pleased with her ears. Nor am I. They are a vast

> improvement, but just not perfect. They are still a bit floppier than we'd

> hoped. He was being cautious so as not to leave too little room for her

> hearing aids. I think it's hard to know in advance how each child will

> heal. It's interesting to note that her left side (the side with the " bad "

> ear and " bad " eye) is healing markedly slower than the right. Anyway, he

> suggested that we could possibly make improvement with splinting but that it

> requires the splint stay in place 24/7 which is difficult in the hot summer

> months and with the activity level of a young child. However, she will be

> immobilized when she has her body cast for 2 months so we will try it then.

> We'll see the dr after and decide how to proceed after seeing how the

> splinting works.

>

> Next week is our preop visit at Shriners before her hip surgery. I'm

> pleased that hubby (DJ) is going with me. He usually does not take vacation

> time for such things. At this visit though, we will learn the details of

> the surgery and I hope we will view the 3D CTscan of her hips (fascinating).

> We'll also go the area blood bank to give a directed-donation of 2 units of

> blood for her surgery. I know blood banks are supposed to be safe, but why

> risk it if you have time to plan ahead? I had been concerned about how I'd

> get 2 donors down to St Louis to give (each person can only give 1 unit max)

> so I'm glad he's able to go.

>

> Another fun issue this week has been head lice. I found Aubrie swarming

> with them on Tues (after Monday in St Louis for an eye check and before

> leaving Wed for Chicago for ear follow-up). What a nightmare to treat a kid

> who hates shampoo and haircombing. Luckily, she was intent upon finishing

> in time for her morning speech session so she dealt with the discomfort and

> let me get it done. We de-loused the family and the house all day and

> evening Tues before heading out of town. It was crazy. I had been dreading

> the day when Aubrie would get it. It's very difficult to avoid with school

> age kids. She loves to try on hats in the store too and usually gets to it

> before I can stop her. You can be sure we'll be putting an end to that.

>

> Only 3 weekends until surgery and we have plans for all 3 plus several appts

> and things to take care of on the " to do " list before then. I am not

> looking forward to this. Seems that life as we know it will come to a

> screeching halt on July 22. How do you guys do it who have to deal with

> issues this big all the time? I have been insane since the spring when we

> found out we had to do both of these surgeries this year.

>

> To top it off, DJ has a job opportunity in N IL (Dixon -- near you, ?).

> It's the town where was born. We loved it there and would not mind

> going back. In fact, it might be a good move in the long run. Dixon is a

> bit bigger (but still a small town) with more opportunties, better schools,

> a YMCA, and a better economic outlook for the community. Our town is aging

> and absolutely not progressive in its thinking or planning for the future.

> We love it here and would love to stay forever, but it may be wiser to move

> somewhere with a better future if it has all the benefits of here and a

> better job opportunity for DJ. I've told him to continue with the process

> but not talk to me about it until it is more imminent. However, I just

> can't stop worrying about it.

>

> Hugs to all... best wishes to all the new babies arrived and arriving... As

> always a little piece of my heart and mind is always with my CHARGE family

> even when life is hectic.

>

> 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]

-

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

[Guest guest]

-

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

[Guest guest]

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

[Guest guest]

Michele,

I too am tired just reading you message.

Prayers, Blessings and Hugs,

Lynn

The World According to Westmaas...

We've had our follow-up appt with the plastic surgeon re: Aubrie's ear and

palate reconstruction. He was very pleased with the palate although it's

a

bit early to tell how much it will improve her speech in the long run.

The

SLP has said that there is at least one sound that she could not produce

before that she can do now in isolation in therapy. To me, that says that

we have lifted the ceiling off of her maximum potential and increased the

possibilities for improvement.

He was not as pleased with her ears. Nor am I. They are a vast

improvement, but just not perfect. They are still a bit floppier than

we'd

hoped. He was being cautious so as not to leave too little room for her

hearing aids. I think it's hard to know in advance how each child will

heal. It's interesting to note that her left side (the side with the

" bad "

ear and " bad " eye) is healing markedly slower than the right. Anyway, he

suggested that we could possibly make improvement with splinting but that

it

requires the splint stay in place 24/7 which is difficult in the hot

summer

months and with the activity level of a young child. However, she will be

immobilized when she has her body cast for 2 months so we will try it

then.

We'll see the dr after and decide how to proceed after seeing how the

splinting works.

Next week is our preop visit at Shriners before her hip surgery. I'm

pleased that hubby (DJ) is going with me. He usually does not take

vacation

time for such things. At this visit though, we will learn the details of

the surgery and I hope we will view the 3D CTscan of her hips

(fascinating).

We'll also go the area blood bank to give a directed-donation of 2 units

of

blood for her surgery. I know blood banks are supposed to be safe, but

why

risk it if you have time to plan ahead? I had been concerned about how

I'd

get 2 donors down to St Louis to give (each person can only give 1 unit

max)

so I'm glad he's able to go.

Another fun issue this week has been head lice. I found Aubrie swarming

with them on Tues (after Monday in St Louis for an eye check and before

leaving Wed for Chicago for ear follow-up). What a nightmare to treat a

kid

who hates shampoo and haircombing. Luckily, she was intent upon finishing

in time for her morning speech session so she dealt with the discomfort

and

let me get it done. We de-loused the family and the house all day and

evening Tues before heading out of town. It was crazy. I had been

dreading

the day when Aubrie would get it. It's very difficult to avoid with

school

age kids. She loves to try on hats in the store too and usually gets to

it

before I can stop her. You can be sure we'll be putting an end to that.

Only 3 weekends until surgery and we have plans for all 3 plus several

appts

and things to take care of on the " to do " list before then. I am not

looking forward to this. Seems that life as we know it will come to a

screeching halt on July 22. How do you guys do it who have to deal with

issues this big all the time? I have been insane since the spring when we

found out we had to do both of these surgeries this year.

To top it off, DJ has a job opportunity in N IL (Dixon -- near you,

?).

It's the town where was born. We loved it there and would not mind

going back. In fact, it might be a good move in the long run. Dixon is a

bit bigger (but still a small town) with more opportunties, better

schools,

a YMCA, and a better economic outlook for the community. Our town is

aging

and absolutely not progressive in its thinking or planning for the future.

We love it here and would love to stay forever, but it may be wiser to

move

somewhere with a better future if it has all the benefits of here and a

better job opportunity for DJ. I've told him to continue with the process

but not talk to me about it until it is more imminent. However, I just

can't stop worrying about it.

Hugs to all... best wishes to all the new babies arrived and arriving...

As

always a little piece of my heart and mind is always with my CHARGE family

even when life is hectic.

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]

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. Thank

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)

[Guest guest]

Martha-

Aubrie's palate surgery was done by Dr Bruce Bauer in Chicago. The cleft

team in St Louis didn't want to do surgery on her after a day of invasive

testing to get more info. Dr Bauer heard her talk, looked at the roof of

her mouth with a pen light, and insisted that he could help her -- no

invasive testing needed. I wish we'd gotten to him before the other testing

had taken place. I don't know the name of the head of plastics in St Louis

since we didn't end up having an appt with him. We did our testing thru the

ENT. He, BTW, was fabulous with Aubrie. He had an amazing way with her.

Dr Molter is his name. He is not our usual ENT -- that's Dr. Clary. I like

Dr Clary very much. He's done a great job with Aubrie's care all along and

referred me to Dr Bauer when I asked for suggestions for the ear

reconstruction. Dr Molter is the ENT who does the palate/speech testing so

he worked with us that day only.

Do you dr in St Louis as well? If so, we need to keep each other informed

as to our appt dates in case we are there at the same by chance and could

meet.

Michele W

[Guest guest]

Martha-

Aubrie's palate surgery was done by Dr Bruce Bauer in Chicago. The cleft

team in St Louis didn't want to do surgery on her after a day of invasive

testing to get more info. Dr Bauer heard her talk, looked at the roof of

her mouth with a pen light, and insisted that he could help her -- no

invasive testing needed. I wish we'd gotten to him before the other testing

had taken place. I don't know the name of the head of plastics in St Louis

since we didn't end up having an appt with him. We did our testing thru the

ENT. He, BTW, was fabulous with Aubrie. He had an amazing way with her.

Dr Molter is his name. He is not our usual ENT -- that's Dr. Clary. I like

Dr Clary very much. He's done a great job with Aubrie's care all along and

referred me to Dr Bauer when I asked for suggestions for the ear

reconstruction. Dr Molter is the ENT who does the palate/speech testing so

he worked with us that day only.

Do you dr in St Louis as well? If so, we need to keep each other informed

as to our appt dates in case we are there at the same by chance and could

meet.

Michele W

[Guest guest]

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

[Guest guest]

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

[Guest guest]

Hey.l.jsut wanmted tos ay i read ur message and thining of u

Belinda

> Michele,

> I too am tired just reading you message.

> Prayers, Blessings and Hugs,

> Lynn

> The World According to Westmaas...

>

>

> We've had our follow-up appt with the plastic surgeon re:

Aubrie's ear and

> palate reconstruction. He was very pleased with the palate

although it's

> a

> bit early to tell how much it will improve her speech in the

long run.

> The

> SLP has said that there is at least one sound that she could

not produce

> before that she can do now in isolation in therapy. To me,

that says that

> we have lifted the ceiling off of her maximum potential and

increased the

> possibilities for improvement.

>

> He was not as pleased with her ears. Nor am I. They are a

vast

> improvement, but just not perfect. They are still a bit

floppier than

> we'd

> hoped. He was being cautious so as not to leave too little

room for her

> hearing aids. I think it's hard to know in advance how each

child will

> heal. It's interesting to note that her left side (the side

with the

> " bad "

> ear and " bad " eye) is healing markedly slower than the right.

Anyway, he

> suggested that we could possibly make improvement with

splinting but that

> it

> requires the splint stay in place 24/7 which is difficult in

the hot

> summer

> months and with the activity level of a young child. However,

she will be

> immobilized when she has her body cast for 2 months so we will

try it

> then.

> We'll see the dr after and decide how to proceed after seeing

how the

> splinting works.

>

> Next week is our preop visit at Shriners before her hip

surgery. I'm

> pleased that hubby (DJ) is going with me. He usually does not

take

> vacation

> time for such things. At this visit though, we will learn the

details of

> the surgery and I hope we will view the 3D CTscan of her hips

> (fascinating).

> We'll also go the area blood bank to give a directed-donation

of 2 units

> of

> blood for her surgery. I know blood banks are supposed to be

safe, but

> why

> risk it if you have time to plan ahead? I had been concerned

about how

> I'd

> get 2 donors down to St Louis to give (each person can only

give 1 unit

> max)

> so I'm glad he's able to go.

>

> Another fun issue this week has been head lice. I found

Aubrie swarming

> with them on Tues (after Monday in St Louis for an eye check

and before

> leaving Wed for Chicago for ear follow-up). What a nightmare

to treat a

> kid

> who hates shampoo and haircombing. Luckily, she was intent

upon finishing

> in time for her morning speech session so she dealt with the

discomfort

> and

> let me get it done. We de-loused the family and the house all

day and

> evening Tues before heading out of town. It was crazy. I had

been

> dreading

> the day when Aubrie would get it. It's very difficult to

avoid with

> school

> age kids. She loves to try on hats in the store too and

usually gets to

> it

> before I can stop her. You can be sure we'll be putting an

end to that.

>

> Only 3 weekends until surgery and we have plans for all 3 plus

several

> appts

> and things to take care of on the " to do " list before then. I

am not

> looking forward to this. Seems that life as we know it will

come to a

> screeching halt on July 22. How do you guys do it who have to

deal with

> issues this big all the time? I have been insane since the

spring when we

> found out we had to do both of these surgeries this year.

>

> To top it off, DJ has a job opportunity in N IL (Dixon -- near

you,

> ?).

> It's the town where was born. We loved it there and

would not mind

> going back. In fact, it might be a good move in the long

run. Dixon is a

> bit bigger (but still a small town) with more opportunties,

better

> schools,

> a YMCA, and a better economic outlook for the community. Our

town is

> aging

> and absolutely not progressive in its thinking or planning for

the future.

> We love it here and would love to stay forever, but it may be

wiser to

> move

> somewhere with a better future if it has all the benefits of

here and a

> better job opportunity for DJ. I've told him to continue with

the process

> but not talk to me about it until it is more imminent.

However, I just

> can't stop worrying about it.

>

> Hugs to all... best wishes to all the new babies arrived and

arriving...

> As

> always a little piece of my heart and mind is always with my

CHARGE family

> even when life is hectic.

>

> 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@c... 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@c... Thank you!

>

>

>

>

[Guest guest]

I had head lice before! I was too young to remember. Strangely enough

I remember chicken poxs and I was even younger, lol! Go figure!

Chantelle

[Guest guest]

wow!!! I hope all goes well wth plans toward and the surgery. glad palate

surgery seems to have improved sspeech at least a little. hope ears can be

improved. hope all the little buggers are gone and stay gone....knock on

wood, we've never had to deal with that---you can bet we will now that I've

said that!!! summer school starts here next week, and tim is getting to the

point of needing it, because I've been sick we haven't been doing much and

he's getting itchy. have a great week!

maria

The World According to Westmaas...

> We've had our follow-up appt with the plastic surgeon re: Aubrie's ear and

> palate reconstruction. He was very pleased with the palate although it's

a

> bit early to tell how much it will improve her speech in the long run.

The

> SLP has said that there is at least one sound that she could not produce

> before that she can do now in isolation in therapy. To me, that says that

> we have lifted the ceiling off of her maximum potential and increased the

> possibilities for improvement.

>

> He was not as pleased with her ears. Nor am I. They are a vast

> improvement, but just not perfect. They are still a bit floppier than

we'd

> hoped. He was being cautious so as not to leave too little room for her

> hearing aids. I think it's hard to know in advance how each child will

> heal. It's interesting to note that her left side (the side with the

" bad "

> ear and " bad " eye) is healing markedly slower than the right. Anyway, he

> suggested that we could possibly make improvement with splinting but that

it

> requires the splint stay in place 24/7 which is difficult in the hot

summer

> months and with the activity level of a young child. However, she will be

> immobilized when she has her body cast for 2 months so we will try it

then.

> We'll see the dr after and decide how to proceed after seeing how the

> splinting works.

>

> Next week is our preop visit at Shriners before her hip surgery. I'm

> pleased that hubby (DJ) is going with me. He usually does not take

vacation

> time for such things. At this visit though, we will learn the details of

> the surgery and I hope we will view the 3D CTscan of her hips

(fascinating).

> We'll also go the area blood bank to give a directed-donation of 2 units

of

> blood for her surgery. I know blood banks are supposed to be safe, but

why

> risk it if you have time to plan ahead? I had been concerned about how

I'd

> get 2 donors down to St Louis to give (each person can only give 1 unit

max)

> so I'm glad he's able to go.

>

> Another fun issue this week has been head lice. I found Aubrie swarming

> with them on Tues (after Monday in St Louis for an eye check and before

> leaving Wed for Chicago for ear follow-up). What a nightmare to treat a

kid

> who hates shampoo and haircombing. Luckily, she was intent upon finishing

> in time for her morning speech session so she dealt with the discomfort

and

> let me get it done. We de-loused the family and the house all day and

> evening Tues before heading out of town. It was crazy. I had been

dreading

> the day when Aubrie would get it. It's very difficult to avoid with

school

> age kids. She loves to try on hats in the store too and usually gets to

it

> before I can stop her. You can be sure we'll be putting an end to that.

>

> Only 3 weekends until surgery and we have plans for all 3 plus several

appts

> and things to take care of on the " to do " list before then. I am not

> looking forward to this. Seems that life as we know it will come to a

> screeching halt on July 22. How do you guys do it who have to deal with

> issues this big all the time? I have been insane since the spring when we

> found out we had to do both of these surgeries this year.

>

> To top it off, DJ has a job opportunity in N IL (Dixon -- near you,

?).

> It's the town where was born. We loved it there and would not mind

> going back. In fact, it might be a good move in the long run. Dixon is a

> bit bigger (but still a small town) with more opportunties, better

schools,

> a YMCA, and a better economic outlook for the community. Our town is

aging

> and absolutely not progressive in its thinking or planning for the future.

> We love it here and would love to stay forever, but it may be wiser to

move

> somewhere with a better future if it has all the benefits of here and a

> better job opportunity for DJ. I've told him to continue with the process

> but not talk to me about it until it is more imminent. However, I just

> can't stop worrying about it.

>

> Hugs to all... best wishes to all the new babies arrived and arriving...

As

> always a little piece of my heart and mind is always with my CHARGE family

> even when life is hectic.

>

> 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]

,

That is a lot to go through in a year. I've had two surgeries in 6 months

but I'm older and I understand (more or less) what I'm getting myself into.

I will say I didn't realize how hard it was going to be to eat slow, but

that's another story!

Best wishes through all of this!

Kay

The World According to Westmaas...

> We've had our follow-up appt with the plastic surgeon re: Aubrie's ear and

> palate reconstruction. He was very pleased with the palate although it's

a

> bit early to tell how much it will improve her speech in the long run.

The

> SLP has said that there is at least one sound that she could not produce

> before that she can do now in isolation in therapy. To me, that says that

> we have lifted the ceiling off of her maximum potential and increased the

> possibilities for improvement.

>

> He was not as pleased with her ears. Nor am I. They are a vast

> improvement, but just not perfect. They are still a bit floppier than

we'd

> hoped. He was being cautious so as not to leave too little room for her

> hearing aids. I think it's hard to know in advance how each child will

> heal. It's interesting to note that her left side (the side with the

" bad "

> ear and " bad " eye) is healing markedly slower than the right. Anyway, he

> suggested that we could possibly make improvement with splinting but that

it

> requires the splint stay in place 24/7 which is difficult in the hot

summer

> months and with the activity level of a young child. However, she will be

> immobilized when she has her body cast for 2 months so we will try it

then.

> We'll see the dr after and decide how to proceed after seeing how the

> splinting works.

>

> Next week is our preop visit at Shriners before her hip surgery. I'm

> pleased that hubby (DJ) is going with me. He usually does not take

vacation

> time for such things. At this visit though, we will learn the details of

> the surgery and I hope we will view the 3D CTscan of her hips

(fascinating).

> We'll also go the area blood bank to give a directed-donation of 2 units

of

> blood for her surgery. I know blood banks are supposed to be safe, but

why

> risk it if you have time to plan ahead? I had been concerned about how

I'd

> get 2 donors down to St Louis to give (each person can only give 1 unit

max)

> so I'm glad he's able to go.

>

> Another fun issue this week has been head lice. I found Aubrie swarming

> with them on Tues (after Monday in St Louis for an eye check and before

> leaving Wed for Chicago for ear follow-up). What a nightmare to treat a

kid

> who hates shampoo and haircombing. Luckily, she was intent upon finishing

> in time for her morning speech session so she dealt with the discomfort

and

> let me get it done. We de-loused the family and the house all day and

> evening Tues before heading out of town. It was crazy. I had been

dreading

> the day when Aubrie would get it. It's very difficult to avoid with

school

> age kids. She loves to try on hats in the store too and usually gets to

it

> before I can stop her. You can be sure we'll be putting an end to that.

>

> Only 3 weekends until surgery and we have plans for all 3 plus several

appts

> and things to take care of on the " to do " list before then. I am not

> looking forward to this. Seems that life as we know it will come to a

> screeching halt on July 22. How do you guys do it who have to deal with

> issues this big all the time? I have been insane since the spring when we

> found out we had to do both of these surgeries this year.

>

> To top it off, DJ has a job opportunity in N IL (Dixon -- near you,

?).

> It's the town where was born. We loved it there and would not mind

> going back. In fact, it might be a good move in the long run. Dixon is a

> bit bigger (but still a small town) with more opportunties, better

schools,

> a YMCA, and a better economic outlook for the community. Our town is

aging

> and absolutely not progressive in its thinking or planning for the future.

> We love it here and would love to stay forever, but it may be wiser to

move

> somewhere with a better future if it has all the benefits of here and a

> better job opportunity for DJ. I've told him to continue with the process

> but not talk to me about it until it is more imminent. However, I just

> can't stop worrying about it.

>

> Hugs to all... best wishes to all the new babies arrived and arriving...

As

> always a little piece of my heart and mind is always with my CHARGE family

> even when life is hectic.

>

> 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]

,

That is a lot to go through in a year. I've had two surgeries in 6 months

but I'm older and I understand (more or less) what I'm getting myself into.

I will say I didn't realize how hard it was going to be to eat slow, but

that's another story!

Best wishes through all of this!

Kay

The World According to Westmaas...

> We've had our follow-up appt with the plastic surgeon re: Aubrie's ear and

> palate reconstruction. He was very pleased with the palate although it's

a

> bit early to tell how much it will improve her speech in the long run.

The

> SLP has said that there is at least one sound that she could not produce

> before that she can do now in isolation in therapy. To me, that says that

> we have lifted the ceiling off of her maximum potential and increased the

> possibilities for improvement.

>

> He was not as pleased with her ears. Nor am I. They are a vast

> improvement, but just not perfect. They are still a bit floppier than

we'd

> hoped. He was being cautious so as not to leave too little room for her

> hearing aids. I think it's hard to know in advance how each child will

> heal. It's interesting to note that her left side (the side with the

" bad "

> ear and " bad " eye) is healing markedly slower than the right. Anyway, he

> suggested that we could possibly make improvement with splinting but that

it

> requires the splint stay in place 24/7 which is difficult in the hot

summer

> months and with the activity level of a young child. However, she will be

> immobilized when she has her body cast for 2 months so we will try it

then.

> We'll see the dr after and decide how to proceed after seeing how the

> splinting works.

>

> Next week is our preop visit at Shriners before her hip surgery. I'm

> pleased that hubby (DJ) is going with me. He usually does not take

vacation

> time for such things. At this visit though, we will learn the details of

> the surgery and I hope we will view the 3D CTscan of her hips

(fascinating).

> We'll also go the area blood bank to give a directed-donation of 2 units

of

> blood for her surgery. I know blood banks are supposed to be safe, but

why

> risk it if you have time to plan ahead? I had been concerned about how

I'd

> get 2 donors down to St Louis to give (each person can only give 1 unit

max)

> so I'm glad he's able to go.

>

> Another fun issue this week has been head lice. I found Aubrie swarming

> with them on Tues (after Monday in St Louis for an eye check and before

> leaving Wed for Chicago for ear follow-up). What a nightmare to treat a

kid

> who hates shampoo and haircombing. Luckily, she was intent upon finishing

> in time for her morning speech session so she dealt with the discomfort

and

> let me get it done. We de-loused the family and the house all day and

> evening Tues before heading out of town. It was crazy. I had been

dreading

> the day when Aubrie would get it. It's very difficult to avoid with

school

> age kids. She loves to try on hats in the store too and usually gets to

it

> before I can stop her. You can be sure we'll be putting an end to that.

>

> Only 3 weekends until surgery and we have plans for all 3 plus several

appts

> and things to take care of on the " to do " list before then. I am not

> looking forward to this. Seems that life as we know it will come to a

> screeching halt on July 22. How do you guys do it who have to deal with

> issues this big all the time? I have been insane since the spring when we

> found out we had to do both of these surgeries this year.

>

> To top it off, DJ has a job opportunity in N IL (Dixon -- near you,

?).

> It's the town where was born. We loved it there and would not mind

> going back. In fact, it might be a good move in the long run. Dixon is a

> bit bigger (but still a small town) with more opportunties, better

schools,

> a YMCA, and a better economic outlook for the community. Our town is

aging

> and absolutely not progressive in its thinking or planning for the future.

> We love it here and would love to stay forever, but it may be wiser to

move

> somewhere with a better future if it has all the benefits of here and a

> better job opportunity for DJ. I've told him to continue with the process

> but not talk to me about it until it is more imminent. However, I just

> can't stop worrying about it.

>

> Hugs to all... best wishes to all the new babies arrived and arriving...

As

> always a little piece of my heart and mind is always with my CHARGE family

> even when life is hectic.

>

> 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]

Lynn-

Thanks for the reassurance...

Michele W

[Guest guest]

Lynn-

Thanks for the reassurance...

Michele W

[Guest guest]

Lynn-

Thanks for the reassurance...

Michele W