Re: ear/palate/hip surgery

[Guest guest]

Gosh, ,

so much to think about!!!

And that is all I can say--seems overwhelming to me.

pam

[Guest guest]

Michele,

I can relate to the palate surgery. That's how they finally corrected

's choanal atresia.She was 3 1/2 yrs.

It wasn't easy but as always you will live through it. It goes back to the

" Wonder Woman " mom discussions that have been on the list the last few days.

Is it possible for you and Aubrie to visit a hospital someplace so the two of

you could see a real person in a body cast like the one she will be in. I guess

it's the teacher in me that thinks of these thing. Just wondering.

Prayers, Blessings and Hugs.

Lynn

ear/palate/hip surgery

Hi!

It's been a busy weekend. Family usually comes to us for holidays, but this

time we went to my mom's because we had an appt with an ear specialist near her.

We saw Dr Bauer in Chicago -- plastic surgery at Children's Memorial. He is

confident that he can fix Aubrie's ears without using rib cartilage. Her ears

don't look too bad -- like if you could just hold them back they'd be fine.

Basically, he will pull them back and reconstruct the pinnae etc using the

tissue there. Very exciting!

Better than that though -- he heard her speech and said he could fix it. He

looked at her palate (she wouldn't let him touch it) and is certain that he can

repair her submucous cleft and improve her speech significantly -- although we

can't be sure how much because there are so many other factors hindering it.

You might recall that we had speech testing (SVF and VNE) this winter and the

cranial-facial team in St Louis decided they'd rather not do surgery because

she has some movement of the palate as it is. It is so confusing when

specialists have differing opinions. Made me wish we could get a second opinion

in every specialist area in Chicago just to see what they might come up with

that differs from St Louis. I love all our docs, but it's just a fact that each

team sees things differently some times.

Ok-- here's the complication. I was floored earlier this year when we learned

that Aubrie had to have major hip surgery. I had already made this consult appt

with the ear surgeon before that news, or I would have put it off until after.

I expected to consult, get info about ear surgery, and wait at least a year.

Well, with the palate repair making significant advances in speech, he really

didn't want to wait til next year. In fact, he wants to do it before her hips.

It must be done at least 3 weeks before the hips in order for the palate repair

to be ok for another intubation. Hips are the end of July. We will schedule

ears and palate next week. The surgeon is scheduling in July but has some

earlier openings so I'm hoping June -- not May which would interfere with

school.

So our summer will consist of ear/palate repair early, hips after with the

cast through the start of school, walker through our out-of-town wedding in Oct

maybe, and a " new woman " by Christmas. Argh-- I am so not looking forward to

any of this. Tell me it's gonna be ok!

For those who have done the body cast, what kind of clothes do I need to look

for at garage sales to wear over the cast? I'm thinking long skirts, dresses,

shorts. How much bigger than her do they need to be? How much will she weigh

in the cast if she's 38lb now? Any websites that will help with cast info? I

am interested in doing a cast on a teddy bear or baby doll with paper mache or

the plaster kits you use for mask making. Aubrie's been asking so many

questions. I think it'd help her to play with a casted baby for a while to get

familiar with how it will work. In order to do it, I need to really know what

the thing will look like, how the bedpan fits in there, etc. I have one info

sheet from the hospital that is some help.

Will she get her cast replaced throughout the 2 mos as it gets looser?

Michele W

mom to Aubrie 6 yrs

[Guest guest]

ly-- I am overwhelmed. We haven't had to deal with CHARGE since Aubrie was

a baby. A check-up here, PE tubes there, IEP meeting once in a while... but a

typical life most of the time. This s***s!!! I may have to up my Prozac for

the summer :-)

Michele W

RE: ear/palate/hip surgery

Gosh, ,

so much to think about!!!

And that is all I can say--seems overwhelming to me.

pam

[Guest guest]

Michele,

Why the surgery on the hips? Just curious.

Bonnie

[Guest guest]

Bonnie-

Aubrie's hips have become unstable. She can basically pop them out of joint at

will. The socket is shallow so the ball of her joint just moves in and out.

Plus she has such loose ligaments all over her body. The ball of her joint is

in the proper position in the socket when she has her legs spread in a " frog "

position. So... doc will cut off her femur bones, reattach so the ball is

aligned properly when standing, and use rib cartilage to rebuild her sockets.

An 8 hour surgery. Argh. It's making me sick to think of it. But the

alternative is severe arthritis making her immobile before she's an adult.

This developed in the past 2 years. I don't think she was born with hip

dysplasia. Rather, her bones developed abnormally because of her low muscle

tone, loose connective tissue, and unique mode of early mobility.

So... that's it in a nutshell. After having such an easy time of it in CHARGE

terms, our life now officially sucks. I'm having the most pathetic pity party.

I know I just have to deal with it for a few days until I've reconciled it all

within myself, but right now I'm just plain aggravated, agitated, and

frustrated. Ear surgery is scheduled for May 11. Much earlier than I'd

expected. It is the only day the doc has open until Aug -- only because he

decided to cancel attending a meeting in order to be in surgery that day. So

that will mess up school for 2 or 3 weeks (with pre-op and post-op visits). We

have to reschedule the IEP for 1st grade & summer which was supposed to be done

the 12th. And it will mess up her dance recital which is the Sat after the Tues

surgery. I haven't gotten word yet if she'll be allowed to dance assuming she

feels like it.

And tonight instead of coming home and relaxing after working, phone calling,

and running all day -- I've spent the last 2 hours making copies and searching

through old records for some stock stuff that is a total mess for taxes. So

we'll need to file an extension. Which means I won't have the tax info needed

for the state Division of Specialized Care for Children in order to re-eval our

status before our deadline of Apr 22. So-- I'll send them last years taxes, get

approved for one year, and deal with the reeval thing next year.

I could whine forever. Sorry. I've just had it. And there's not time or alone

space to cry.

Michele w

Re: ear/palate/hip surgery

Michele,

Why the surgery on the hips? Just curious.

Bonnie

[Guest guest]

You do have an awful lot to deal with right now and feeling bad about it is

just a step in getting ready to deal with it. None of want our kids to have

these set backs and to experience more pain, so of course it is normal for

us to grieve that for them. When the time comes you will have processed

your grief for her and will be ready (although not eager) to help her

through it. Hugs to you for now.

Kim

> Bonnie-

> Aubrie's hips have become unstable. She can basically pop them out of joint

> at will. The socket is shallow so the ball of her joint just moves in and

> out. Plus she has such loose ligaments all over her body. The ball of her

> joint is in the proper position in the socket when she has her legs spread in

> a " frog " position. So... doc will cut off her femur bones, reattach so the

> ball is aligned properly when standing, and use rib cartilage to rebuild her

> sockets. An 8 hour surgery. Argh. It's making me sick to think of it. But

> the alternative is severe arthritis making her immobile before she's an adult.

>

> This developed in the past 2 years. I don't think she was born with hip

> dysplasia. Rather, her bones developed abnormally because of her low muscle

> tone, loose connective tissue, and unique mode of early mobility.

>

> So... that's it in a nutshell. After having such an easy time of it in CHARGE

> terms, our life now officially sucks. I'm having the most pathetic pity

> party. I know I just have to deal with it for a few days until I've

> reconciled it all within myself, but right now I'm just plain aggravated,

> agitated, and frustrated. Ear surgery is scheduled for May 11. Much earlier

> than I'd expected. It is the only day the doc has open until Aug -- only

> because he decided to cancel attending a meeting in order to be in surgery

> that day. So that will mess up school for 2 or 3 weeks (with pre-op and

> post-op visits). We have to reschedule the IEP for 1st grade & summer which

> was supposed to be done the 12th. And it will mess up her dance recital which

> is the Sat after the Tues surgery. I haven't gotten word yet if she'll be

> allowed to dance assuming she feels like it.

>

> And tonight instead of coming home and relaxing after working, phone calling,

> and running all day -- I've spent the last 2 hours making copies and searching

> through old records for some stock stuff that is a total mess for taxes. So

> we'll need to file an extension. Which means I won't have the tax info needed

> for the state Division of Specialized Care for Children in order to re-eval

> our status before our deadline of Apr 22. So-- I'll send them last years

> taxes, get approved for one year, and deal with the reeval thing next year.

>

> I could whine forever. Sorry. I've just had it. And there's not time or

> alone space to cry.

>

> Michele w

> Re: ear/palate/hip surgery

>

>

> Michele,

>

> Why the surgery on the hips? Just curious.

>

> Bonnie

>

>

>

[Guest guest]

You do have an awful lot to deal with right now and feeling bad about it is

just a step in getting ready to deal with it. None of want our kids to have

these set backs and to experience more pain, so of course it is normal for

us to grieve that for them. When the time comes you will have processed

your grief for her and will be ready (although not eager) to help her

through it. Hugs to you for now.

Kim

> Bonnie-

> Aubrie's hips have become unstable. She can basically pop them out of joint

> at will. The socket is shallow so the ball of her joint just moves in and

> out. Plus she has such loose ligaments all over her body. The ball of her

> joint is in the proper position in the socket when she has her legs spread in

> a " frog " position. So... doc will cut off her femur bones, reattach so the

> ball is aligned properly when standing, and use rib cartilage to rebuild her

> sockets. An 8 hour surgery. Argh. It's making me sick to think of it. But

> the alternative is severe arthritis making her immobile before she's an adult.

>

> This developed in the past 2 years. I don't think she was born with hip

> dysplasia. Rather, her bones developed abnormally because of her low muscle

> tone, loose connective tissue, and unique mode of early mobility.

>

> So... that's it in a nutshell. After having such an easy time of it in CHARGE

> terms, our life now officially sucks. I'm having the most pathetic pity

> party. I know I just have to deal with it for a few days until I've

> reconciled it all within myself, but right now I'm just plain aggravated,

> agitated, and frustrated. Ear surgery is scheduled for May 11. Much earlier

> than I'd expected. It is the only day the doc has open until Aug -- only

> because he decided to cancel attending a meeting in order to be in surgery

> that day. So that will mess up school for 2 or 3 weeks (with pre-op and

> post-op visits). We have to reschedule the IEP for 1st grade & summer which

> was supposed to be done the 12th. And it will mess up her dance recital which

> is the Sat after the Tues surgery. I haven't gotten word yet if she'll be

> allowed to dance assuming she feels like it.

>

> And tonight instead of coming home and relaxing after working, phone calling,

> and running all day -- I've spent the last 2 hours making copies and searching

> through old records for some stock stuff that is a total mess for taxes. So

> we'll need to file an extension. Which means I won't have the tax info needed

> for the state Division of Specialized Care for Children in order to re-eval

> our status before our deadline of Apr 22. So-- I'll send them last years

> taxes, get approved for one year, and deal with the reeval thing next year.

>

> I could whine forever. Sorry. I've just had it. And there's not time or

> alone space to cry.

>

> Michele w

> Re: ear/palate/hip surgery

>

>

> Michele,

>

> Why the surgery on the hips? Just curious.

>

> Bonnie

>

>

>

[Guest guest]

Michele, here are BIG hugs going your way!!! I feel overwhelmed right now

also, and I have no major issues like you do right now. I'm just

over-committed and ready to tell people to pound salt---my family included.

why can't anyone do anything for themselves? I sooooooo need this up coming

week-end, have to go get some figures for my husband rounded up and them

maybe get some clothes put away---so sick of living from laundry

baskets--how can 5 people go through so many clothes each week? it's dreary

weather too, so that doesn't help the disposition--and I've got a headache

from hell--again!!! try to have a good one---we can whine together!!1

maria

Re: ear/palate/hip surgery

>

>

> Michele,

>

> Why the surgery on the hips? Just curious.

>

> Bonnie

>

>

>

[Guest guest]

It's so good to have friends in misery and joy!

Re: ear/palate/hip surgery

>

>

> Michele,

>

> Why the surgery on the hips? Just curious.

>

> Bonnie

>

>

>

[Guest guest]

Sorry to hear about Aubrie's new issues. Hope everything that's planned

goes smoothly and does not require any " extras " . Hang in there!

Christian Lobaugh

Husband to Ingrid, Father to (5) and (2 yr old charger)

PS - Whine away! If you can't whine here - where can ya?

Re: ear/palate/hip surgery

Bonnie-

Aubrie's hips have become unstable. She can basically pop them out of joint

at will. The socket is shallow so the ball of her joint just moves in and

out. Plus she has such loose ligaments all over her body. The ball of her

joint is in the proper position in the socket when she has her legs spread

in a " frog " position. So... doc will cut off her femur bones, reattach so

the ball is aligned properly when standing, and use rib cartilage to rebuild

her sockets. An 8 hour surgery. Argh. It's making me sick to think of it.

But the alternative is severe arthritis making her immobile before she's an

adult.

This developed in the past 2 years. I don't think she was born with hip

dysplasia. Rather, her bones developed abnormally because of her low muscle

tone, loose connective tissue, and unique mode of early mobility.

So... that's it in a nutshell. After having such an easy time of it in

CHARGE terms, our life now officially sucks. I'm having the most pathetic

pity party. I know I just have to deal with it for a few days until I've

reconciled it all within myself, but right now I'm just plain aggravated,

agitated, and frustrated. Ear surgery is scheduled for May 11. Much

earlier than I'd expected. It is the only day the doc has open until Aug --

only because he decided to cancel attending a meeting in order to be in

surgery that day. So that will mess up school for 2 or 3 weeks (with pre-op

and post-op visits). We have to reschedule the IEP for 1st grade & summer

which was supposed to be done the 12th. And it will mess up her dance

recital which is the Sat after the Tues surgery. I haven't gotten word yet

if she'll be allowed to dance assuming she feels like it.

And tonight instead of coming home and relaxing after working, phone

calling, and running all day -- I've spent the last 2 hours making copies

and searching through old records for some stock stuff that is a total mess

for taxes. So we'll need to file an extension. Which means I won't have

the tax info needed for the state Division of Specialized Care for Children

in order to re-eval our status before our deadline of Apr 22. So-- I'll

send them last years taxes, get approved for one year, and deal with the

reeval thing next year.

I could whine forever. Sorry. I've just had it. And there's not time or

alone space to cry.

Michele w

Re: ear/palate/hip surgery

Michele,

Why the surgery on the hips? Just curious.

Bonnie

[Guest guest]

Michele,

I totally understand. I am sorry to hear she has to go through this. But I

am not surprised. She is a tough little one and I am sure she will do fine.

Yes, I also know what you mean by getting frustrated. You are allowed that

you know. Sometimes it all comes at once and can be overwhelming. Been there

done that and am doing it again. Not only is there the CHARGE things then life

comes as well. Right now is going through Kidney stones. I feel bad

for him because of the pain but quietly in my heart I feel like " just stop it. "

Isn't that mean?

You last comment was profound. There seldom is time or space to cry.

Didn't you know that is what the shower is for. No one knows and it washes away

the crying eyes. Try it. Let your emotions out there. You'll see what I

mean.

I wish you well.

Take care,

Bonnie

[Guest guest]

Michele,

I totally understand. I am sorry to hear she has to go through this. But I

am not surprised. She is a tough little one and I am sure she will do fine.

Yes, I also know what you mean by getting frustrated. You are allowed that

you know. Sometimes it all comes at once and can be overwhelming. Been there

done that and am doing it again. Not only is there the CHARGE things then life

comes as well. Right now is going through Kidney stones. I feel bad

for him because of the pain but quietly in my heart I feel like " just stop it. "

Isn't that mean?

You last comment was profound. There seldom is time or space to cry.

Didn't you know that is what the shower is for. No one knows and it washes away

the crying eyes. Try it. Let your emotions out there. You'll see what I

mean.

I wish you well.

Take care,

Bonnie

[Guest guest]

I had forgotten. The shower was my outlet when Aubrie was newborn. It's too

late for today, but it's still there if I need it tomorrow :-) I have a wicked

headache. Used to be bothered by them all the time but changed diet and hasn't

been a problem. I had been thinking it was stress. But -- I think it's really

allergies. Duh! I always forget about allergies until I'm miserable! Let's

hope the medicine takes effect this morning. I got all of our tax stuff and

Aubrie's ear surgery arrangements made yesterday. Nonstop on the phone and

running, but I got it done. A few more errands and calls today, and I hope it

can be put to rest for a bit.

Thanks for the support-

Michele

Re: ear/palate/hip surgery

Michele,

I totally understand. I am sorry to hear she has to go through this. But I

am not surprised. She is a tough little one and I am sure she will do fine.

Yes, I also know what you mean by getting frustrated. You are allowed that

you know. Sometimes it all comes at once and can be overwhelming. Been there

done that and am doing it again. Not only is there the CHARGE things then

life

comes as well. Right now is going through Kidney stones. I feel bad

for him because of the pain but quietly in my heart I feel like " just stop

it. "

Isn't that mean?

You last comment was profound. There seldom is time or space to cry.

Didn't you know that is what the shower is for. No one knows and it washes

away

the crying eyes. Try it. Let your emotions out there. You'll see what I

mean.

I wish you well.

Take care,

Bonnie

[Guest guest]

I couldn't agree more about the shower crying. It's funny. I thought I was the

only one that used to do that. Even though our kids are older I still use

the shower sometimes.

Blessings and Hugs to all families facing surgeries. I have been there many

times in the past.

Lynn

Re: ear/palate/hip surgery

Michele,

I totally understand. I am sorry to hear she has to go through this. But I

am not surprised. She is a tough little one and I am sure she will do fine.

Yes, I also know what you mean by getting frustrated. You are allowed that

you know. Sometimes it all comes at once and can be overwhelming. Been there

done that and am doing it again. Not only is there the CHARGE things then

life

comes as well. Right now is going through Kidney stones. I feel bad

for him because of the pain but quietly in my heart I feel like " just stop

it. "

Isn't that mean?

You last comment was profound. There seldom is time or space to cry.

Didn't you know that is what the shower is for. No one knows and it washes

away

the crying eyes. Try it. Let your emotions out there. You'll see what I

mean.

I wish you well.

Take care,

Bonnie

[Guest guest]

I couldn't agree more about the shower crying. It's funny. I thought I was the

only one that used to do that. Even though our kids are older I still use

the shower sometimes.

Blessings and Hugs to all families facing surgeries. I have been there many

times in the past.

Lynn

Re: ear/palate/hip surgery

Michele,

I totally understand. I am sorry to hear she has to go through this. But I

am not surprised. She is a tough little one and I am sure she will do fine.

Yes, I also know what you mean by getting frustrated. You are allowed that

you know. Sometimes it all comes at once and can be overwhelming. Been there

done that and am doing it again. Not only is there the CHARGE things then

life

comes as well. Right now is going through Kidney stones. I feel bad

for him because of the pain but quietly in my heart I feel like " just stop

it. "

Isn't that mean?

You last comment was profound. There seldom is time or space to cry.

Didn't you know that is what the shower is for. No one knows and it washes

away

the crying eyes. Try it. Let your emotions out there. You'll see what I

mean.

I wish you well.

Take care,

Bonnie

[Guest guest]

Michele,

Remember to take care of yourself too. Looking back, I didn't do too well

in that area and it didn't help at time.

Blessings, Prayers and Hugs,

Lynn

Re: ear/palate/hip surgery

Michele,

I totally understand. I am sorry to hear she has to go through this. But I

am not surprised. She is a tough little one and I am sure she will do fine.

Yes, I also know what you mean by getting frustrated. You are allowed that

you know. Sometimes it all comes at once and can be overwhelming. Been

there

done that and am doing it again. Not only is there the CHARGE things then

life

comes as well. Right now is going through Kidney stones. I feel bad

for him because of the pain but quietly in my heart I feel like " just stop

it. "

Isn't that mean?

You last comment was profound. There seldom is time or space to cry.

Didn't you know that is what the shower is for. No one knows and it washes

away

the crying eyes. Try it. Let your emotions out there. You'll see what I

mean.

I wish you well.

Take care,

Bonnie

[Guest guest]

We have a new Curves workout center in town. I am working there 4 hours a week

which provides the motivation I need as well as the free membership to stick

with the program. Those who have met me at conferences know I don't need to

lose weight, but, boy, do I need to become more healthful and fit! I have never

been able to touch my toes -- never ever could do a cartwheel -- I've got no

muscle on my body. I've been going for only 2 weeks so far and I love it. It's

the only thing I've ever done that includes cardio training -- I really hate to

sweat. I know it's really good for me and I actually miss it if it's a day off.

So I am trying to balance everything. Thanks for the reminder!

I knew I just had to do the pity party thing for a few days. I'm over it now.

The plans are made, phone calls completed, for the ear/palate surgery. We're

still waiting for a firm date for hips so DJ can put in a request for the time

off. Then I'll have a few weeks to relax until May 11. Then the month of June

to relax until the plans need to be completed for the hips. Then no relaxing

til Jan cuz our house is always crazy through the fall and holidays -- but

things are definitely looking up. That allergy medicine this morning made a

difference too. I need to put a reminder note on my mirror or something so I

don't go through 3 days of headache before I remember to try my allergy meds!

Duh!

How're you doing?

Michele

Re: ear/palate/hip surgery

Michele,

I totally understand. I am sorry to hear she has to go through this. But

I

am not surprised. She is a tough little one and I am sure she will do

fine.

Yes, I also know what you mean by getting frustrated. You are allowed

that

you know. Sometimes it all comes at once and can be overwhelming. Been

there

done that and am doing it again. Not only is there the CHARGE things then

life

comes as well. Right now is going through Kidney stones. I feel bad

for him because of the pain but quietly in my heart I feel like " just stop

it. "

Isn't that mean?

You last comment was profound. There seldom is time or space to cry.

Didn't you know that is what the shower is for. No one knows and it

washes away

the crying eyes. Try it. Let your emotions out there. You'll see what I

mean.

I wish you well.

Take care,

Bonnie

[Guest guest]

Hi Michele,

I do Curves too and love it because it is so fast and so close to home. It

was easier to go last year, because of the time Dylan went to school. I

really miss it when I am off my 3 times a week routine.

Kim

> We have a new Curves workout center in town. I am working there 4 hours a

> week which provides the motivation I need as well as the free membership to

> stick with the program. Those who have met me at conferences know I don't

> need to lose weight, but, boy, do I need to become more healthful and fit! I

> have never been able to touch my toes -- never ever could do a cartwheel --

> I've got no muscle on my body. I've been going for only 2 weeks so far and I

> love it. It's the only thing I've ever done that includes cardio training --

> I really hate to sweat. I know it's really good for me and I actually miss it

> if it's a day off. So I am trying to balance everything. Thanks for the

> reminder!

>

> I knew I just had to do the pity party thing for a few days. I'm over it now.

> The plans are made, phone calls completed, for the ear/palate surgery. We're

> still waiting for a firm date for hips so DJ can put in a request for the time

> off. Then I'll have a few weeks to relax until May 11. Then the month of

> June to relax until the plans need to be completed for the hips. Then no

> relaxing til Jan cuz our house is always crazy through the fall and holidays

> -- but things are definitely looking up. That allergy medicine this morning

> made a difference too. I need to put a reminder note on my mirror or

> something so I don't go through 3 days of headache before I remember to try my

> allergy meds! Duh!

>

> How're you doing?

>

> Michele

> Re: ear/palate/hip surgery

>

>

> Michele,

>

> I totally understand. I am sorry to hear she has to go through this. But

> I

> am not surprised. She is a tough little one and I am sure she will do

> fine.

> Yes, I also know what you mean by getting frustrated. You are allowed

> that

> you know. Sometimes it all comes at once and can be overwhelming. Been

> there

> done that and am doing it again. Not only is there the CHARGE things then

> life

> comes as well. Right now is going through Kidney stones. I feel bad

> for him because of the pain but quietly in my heart I feel like " just stop

> it. "

> Isn't that mean?

> You last comment was profound. There seldom is time or space to cry.

> Didn't you know that is what the shower is for. No one knows and it

> washes away

> the crying eyes. Try it. Let your emotions out there. You'll see what I

> mean.

>

> I wish you well.

>

> Take care,

>

> Bonnie

>

>

>

[Guest guest]

Hi Michele,

I do Curves too and love it because it is so fast and so close to home. It

was easier to go last year, because of the time Dylan went to school. I

really miss it when I am off my 3 times a week routine.

Kim

> We have a new Curves workout center in town. I am working there 4 hours a

> week which provides the motivation I need as well as the free membership to

> stick with the program. Those who have met me at conferences know I don't

> need to lose weight, but, boy, do I need to become more healthful and fit! I

> have never been able to touch my toes -- never ever could do a cartwheel --

> I've got no muscle on my body. I've been going for only 2 weeks so far and I

> love it. It's the only thing I've ever done that includes cardio training --

> I really hate to sweat. I know it's really good for me and I actually miss it

> if it's a day off. So I am trying to balance everything. Thanks for the

> reminder!

>

> I knew I just had to do the pity party thing for a few days. I'm over it now.

> The plans are made, phone calls completed, for the ear/palate surgery. We're

> still waiting for a firm date for hips so DJ can put in a request for the time

> off. Then I'll have a few weeks to relax until May 11. Then the month of

> June to relax until the plans need to be completed for the hips. Then no

> relaxing til Jan cuz our house is always crazy through the fall and holidays

> -- but things are definitely looking up. That allergy medicine this morning

> made a difference too. I need to put a reminder note on my mirror or

> something so I don't go through 3 days of headache before I remember to try my

> allergy meds! Duh!

>

> How're you doing?

>

> Michele

> Re: ear/palate/hip surgery

>

>

> Michele,

>

> I totally understand. I am sorry to hear she has to go through this. But

> I

> am not surprised. She is a tough little one and I am sure she will do

> fine.

> Yes, I also know what you mean by getting frustrated. You are allowed

> that

> you know. Sometimes it all comes at once and can be overwhelming. Been

> there

> done that and am doing it again. Not only is there the CHARGE things then

> life

> comes as well. Right now is going through Kidney stones. I feel bad

> for him because of the pain but quietly in my heart I feel like " just stop

> it. "

> Isn't that mean?

> You last comment was profound. There seldom is time or space to cry.

> Didn't you know that is what the shower is for. No one knows and it

> washes away

> the crying eyes. Try it. Let your emotions out there. You'll see what I

> mean.

>

> I wish you well.

>

> Take care,

>

> Bonnie

>

>

>

[Guest guest]

Michele,

I am glad you are feeling better and that things seem more in your control.

I also go to CURVES and LOVE it. I definitely feel " off " when I miss a day,

too.

Good for you for taking these times for yourself.

pam

> ----------

> From: Michele Westmaas

> Reply To: CHARGE

> Sent: Thursday, April 15, 2004 11:22 PM

> To: CHARGE

> Subject: Re: ear/palate/hip surgery

>

> We have a new Curves workout center in town. I am working there 4 hours a

week which provides the motivation I need as well as the free membership to

stick with the program. Those who have met me at conferences know I don't need

to lose weight, but, boy, do I need to become more healthful and fit! I have

never been able to touch my toes -- never ever could do a cartwheel -- I've got

no muscle on my body. I've been going for only 2 weeks so far and I love it.

It's the only thing I've ever done that includes cardio training -- I really

hate to sweat. I know it's really good for me and I actually miss it if it's a

day off. So I am trying to balance everything. Thanks for the reminder!

>

> I knew I just had to do the pity party thing for a few days. I'm over it now.

The plans are made, phone calls completed, for the ear/palate surgery. We're

still waiting for a firm date for hips so DJ can put in a request for the time

off. Then I'll have a few weeks to relax until May 11. Then the month of June

to relax until the plans need to be completed for the hips. Then no relaxing

til Jan cuz our house is always crazy through the fall and holidays -- but

things are definitely looking up. That allergy medicine this morning made a

difference too. I need to put a reminder note on my mirror or something so I

don't go through 3 days of headache before I remember to try my allergy meds!

Duh!

>

> How're you doing?

>

> Michele

> Re: ear/palate/hip surgery

>

>

> Michele,

>

> I totally understand. I am sorry to hear she has to go through this.

But I

> am not surprised. She is a tough little one and I am sure she will do

fine.

> Yes, I also know what you mean by getting frustrated. You are allowed

that

> you know. Sometimes it all comes at once and can be overwhelming. Been

there

> done that and am doing it again. Not only is there the CHARGE things

then life

> comes as well. Right now is going through Kidney stones. I feel

bad >

> for him because of the pain but quietly in my heart I feel like " just

stop it. "

> Isn't that mean?

> You last comment was profound. There seldom is time or space to

cry.

> Didn't you know that is what the shower is for. No one knows and it

washes away

> the crying eyes. Try it. Let your emotions out there. You'll see what

I

> mean.

>

> I wish you well.

>

> Take care,

>

> Bonnie

>

>

>

[Guest guest]

,

I read your post with interest as my daughter had her SubMucous cleft

palate repair when she was 7 at GOSH in London. It was hoped this would

help her speech, but she still has big problems. All the doctors

involved with Jodie seem to pass the buck for what is affecting her

speech the most, and have long since given up really. Although she has

some movement of her palate now it is by no means right, but her surgeon

is rleuctant to do any more for her. I'm desperate for another opinion

on Jodie at the moment , as she is 12 now and depressed that her speech

is not gettting any better. I would love to talk to Dr. Bauer so would

be very grateful if you could give me a twelephone number or e-mail

address where I can get in touch with him.

Best of Luck with Aubrie's Op.

Vicky

Jodie's mum - 12 yrs

ear/palate/hip surgery

Hi!

It's been a busy weekend. Family usually comes to us for holidays, but

this time we went to my mom's because we had an appt with an ear

specialist near her. We saw Dr Bauer in Chicago -- plastic surgery at

Children's Memorial. He is confident that he can fix Aubrie's ears

without using rib cartilage. Her ears don't look too bad -- like if you

could just hold them back they'd be fine. Basically, he will pull them

back and reconstruct the pinnae etc using the tissue there. Very

exciting!

Better than that though -- he heard her speech and said he could fix it.

He looked at her palate (she wouldn't let him touch it) and is certain

that he can repair her submucous cleft and improve her speech

significantly -- although we can't be sure how much because there are so

many other factors hindering it. You might recall that we had speech

testing (SVF and VNE) this winter and the cranial-facial team in St

Louis decided they'd rather not do surgery because she has some

movement of the palate as it is. It is so confusing when specialists

have differing opinions. Made me wish we could get a second opinion in

every specialist area in Chicago just to see what they might come up

with that differs from St Louis. I love all our docs, but it's just a

fact that each team sees things differently some times.

Ok-- here's the complication. I was floored earlier this year when we

learned that Aubrie had to have major hip surgery. I had already made

this consult appt with the ear surgeon before that news, or I would have

put it off until after. I expected to consult, get info about ear

surgery, and wait at least a year. Well, with the palate repair making

significant advances in speech, he really didn't want to wait til next

year. In fact, he wants to do it before her hips. It must be done at

least 3 weeks before the hips in order for the palate repair to be ok

for another intubation. Hips are the end of July. We will schedule

ears and palate next week. The surgeon is scheduling in July but has

some earlier openings so I'm hoping June -- not May which would

interfere with school.

So our summer will consist of ear/palate repair early, hips after with

the cast through the start of school, walker through our out-of-town

wedding in Oct maybe, and a " new woman " by Christmas. Argh-- I am so

not looking forward to any of this. Tell me it's gonna be ok!

For those who have done the body cast, what kind of clothes do I need to

look for at garage sales to wear over the cast? I'm thinking long

skirts, dresses, shorts. How much bigger than her do they need to be?

How much will she weigh in the cast if she's 38lb now? Any websites

that will help with cast info? I am interested in doing a cast on a

teddy bear or baby doll with paper mache or the plaster kits you use for

mask making. Aubrie's been asking so many questions. I think it'd help

her to play with a casted baby for a while to get familiar with how it

will work. In order to do it, I need to really know what the thing will

look like, how the bedpan fits in there, etc. I have one info sheet

from the hospital that is some help.

Will she get her cast replaced throughout the 2 mos as it gets looser?

Michele W

mom to Aubrie 6 yrs

[Guest guest]

Jodie--

Here is Dr Bauer's bio at the Children's Memorial website.

http://www.childrensmemorial.org/findadoc/doctor.asp?ID=1104 & display=search & sear\

chID=6679

To contact him at the plastic surgery dept-

To contact the Plastic Surgery professionals at Children's Memorial Hospital,

call or write to:

Division of Plastic Surgery

Children's Memorial Hospital

2300 Children's Plaza, Box 93

Chicago, Illinois 60614

The division's fax number is

Note: New patients are scheduled through KIDS DOC. To make an appointment, call

1.800.KIDS DOC (1.).

I'm feeling a bit nervous about Aubrie's surgery. The team in St Louis was so

reluctant to do anything to her and then Dr Bauer was so insistent that he could

help. I sure hope we are right in putting our faith with him. There are so

many things interfering with speech -- low muscle tone, cranial nerve issues,

etc Who knows if this surgery will help a lot or a little? I feel confident

that it has to do something. I mean, her palate is definitely not structurally

able to do what it needs to do. However, even when it is " fixed " , the other

obstacles may be too much for the palate repair to overcome. I've noticed that

Aubrie can do things with her tongue that I can't do. She can cup it in a way

that most people cannot. The SLP noticed it ages ago. I don't know what

significance it has, but I think it has to indicate something. She is so loose

jointed that she can move all of her body in strange ways. She can also do this

weird thing with her tongue. I know there are no bones and joints in there, but

something's wired differently for her to be able to move it the way she does but

not in other ways that she needs to for speech.

Back to Dr Bauer-- he has been great so far! We have a long drive - 5 hours.

He knows that we'll be staying with my mom nearby so we are foregoing the pre-op

visit and checking in with just a phone call before surgery. I was talking with

his nurse about if we should plan to stay the week after or come home between

the surgery and the 1-week post-op visit. She had just bothered him a few

minutes before to ask if Aubrie could dance in her recital (it's the weekend

after surgery and Grandma was flying in just to attend). Then the nurse put me

through to him and he talked it over with me to decide what we should plan. I

mean, most drs are so hard to reach even for something important and this guy

was willing to discuss these things that are only important to us. When I

thanked him for his time, he said, " My pleasure. " I was impressed. Now-- he

wasn't very attentive to Aubrie when she was trying to show him her new necklace

during the visit, but he was excited about improving her speech and her ears, so

I'll take it.

Please let us know if you contact him and what comes of it.

Michele W

ear/palate/hip surgery

Hi!

It's been a busy weekend. Family usually comes to us for holidays, but

this time we went to my mom's because we had an appt with an ear

specialist near her. We saw Dr Bauer in Chicago -- plastic surgery at

Children's Memorial. He is confident that he can fix Aubrie's ears

without using rib cartilage. Her ears don't look too bad -- like if you

could just hold them back they'd be fine. Basically, he will pull them

back and reconstruct the pinnae etc using the tissue there. Very

exciting!

Better than that though -- he heard her speech and said he could fix it.

He looked at her palate (she wouldn't let him touch it) and is certain

that he can repair her submucous cleft and improve her speech

significantly -- although we can't be sure how much because there are so

many other factors hindering it. You might recall that we had speech

testing (SVF and VNE) this winter and the cranial-facial team in St

Louis decided they'd rather not do surgery because she has some

movement of the palate as it is. It is so confusing when specialists

have differing opinions. Made me wish we could get a second opinion in

every specialist area in Chicago just to see what they might come up

with that differs from St Louis. I love all our docs, but it's just a

fact that each team sees things differently some times.

Ok-- here's the complication. I was floored earlier this year when we

learned that Aubrie had to have major hip surgery. I had already made

this consult appt with the ear surgeon before that news, or I would have

put it off until after. I expected to consult, get info about ear

surgery, and wait at least a year. Well, with the palate repair making

significant advances in speech, he really didn't want to wait til next

year. In fact, he wants to do it before her hips. It must be done at

least 3 weeks before the hips in order for the palate repair to be ok

for another intubation. Hips are the end of July. We will schedule

ears and palate next week. The surgeon is scheduling in July but has

some earlier openings so I'm hoping June -- not May which would

interfere with school.

So our summer will consist of ear/palate repair early, hips after with

the cast through the start of school, walker through our out-of-town

wedding in Oct maybe, and a " new woman " by Christmas. Argh-- I am so

not looking forward to any of this. Tell me it's gonna be ok!

For those who have done the body cast, what kind of clothes do I need to

look for at garage sales to wear over the cast? I'm thinking long

skirts, dresses, shorts. How much bigger than her do they need to be?

How much will she weigh in the cast if she's 38lb now? Any websites

that will help with cast info? I am interested in doing a cast on a

teddy bear or baby doll with paper mache or the plaster kits you use for

mask making. Aubrie's been asking so many questions. I think it'd help

her to play with a casted baby for a while to get familiar with how it

will work. In order to do it, I need to really know what the thing will

look like, how the bedpan fits in there, etc. I have one info sheet

from the hospital that is some help.

Will she get her cast replaced throughout the 2 mos as it gets looser?

Michele W

mom to Aubrie 6 yrs

[Guest guest]

HI ,

Thanks very much for the info. I will contact him in the hope that he

may offer Jodie a second opinion. With Jodie too there are so many

factors influencing her speech, and it is certainly complicated. It was

interesting what you said about Aubries tounge as Jodie's is also quite

flexible!!

I know that there might be nothing more that can be done to help improve

Jodie's speech, her mucous production definately impacts on her voice

quality, as when she's very 'bubbly' and doesn't clear her throat she

struggles, but her hypernasality also affects her quality of voice, and

I'm quite sure her palate affects this. Perhaps it is not possible to

repair her palate in order for it to function better, who knows, But if

there's a chance it can be, I have to find it for her. I have this

constant nagging feeling that I haven't done enough to fight for the

answers yet. I know a second opinion may not come up with anything

different, but I also know I can't give up until I've had another go-

even if it means coming to the states for it !!

I really hope the op helps Aubrie. I read all the posts but don't get to

write much, but I think Aubrie and Jodie have lots of simi;aritys from

what I read.

Thanks again

Vicky

From: Michele Westmaas

Sent: 19 April 2004 04:37

To: CHARGE

Subject: Re: ear/palate/hip surgery

Jodie--

Here is Dr Bauer's bio at the Children's Memorial website.

http://www.childrensmemorial.org/findadoc/doctor.asp?ID=1104

<http://www.childrensmemorial.org/findadoc/doctor.asp?ID=1104 & display=se

arch & searchID=6679> & display=search & searchID=6679

To contact him at the plastic surgery dept-

To contact the Plastic Surgery professionals at Children's Memorial

Hospital, call or write to:

Division of Plastic Surgery

Children's Memorial Hospital

2300 Children's Plaza, Box 93

Chicago, Illinois 60614

The division's fax number is

Note: New patients are scheduled through KIDS DOC. To make an

appointment, call 1.800.KIDS DOC (1.).

I'm feeling a bit nervous about Aubrie's surgery. The team in St Louis

was so reluctant to do anything to her and then Dr Bauer was so

insistent that he could help. I sure hope we are right in putting our

faith with him. There are so many things interfering with speech -- low

muscle tone, cranial nerve issues, etc Who knows if this surgery will

help a lot or a little? I feel confident that it has to do something.

I mean, her palate is definitely not structurally able to do what it

needs to do. However, even when it is " fixed " , the other obstacles may

be too much for the palate repair to overcome. I've noticed that Aubrie

can do things with her tongue that I can't do. She can cup it in a way

that most people cannot. The SLP noticed it ages ago. I don't know

what significance it has, but I think it has to indicate something. She

is so loose jointed that she can move all of her body in strange ways.

She can also do this weird thing with her tongue. I know there are no

bones and joints in there, but something's wired differently for her to

be able to move it the way she does but not in other ways that she needs

to for speech.

Back to Dr Bauer-- he has been great so far! We have a long drive - 5

hours. He knows that we'll be staying with my mom nearby so we are

foregoing the pre-op visit and checking in with just a phone call before

surgery. I was talking with his nurse about if we should plan to stay

the week after or come home between the surgery and the 1-week post-op

visit. She had just bothered him a few minutes before to ask if Aubrie

could dance in her recital (it's the weekend after surgery and Grandma

was flying in just to attend). Then the nurse put me through to him and

he talked it over with me to decide what we should plan. I mean, most

drs are so hard to reach even for something important and this guy was

willing to discuss these things that are only important to us. When I

thanked him for his time, he said, " My pleasure. " I was impressed.

Now-- he wasn't very attentive to Aubrie when she was trying to show him

her new necklace during the visit, but he was excited about improving

her speech and her ears, so I'll take it.

Please let us know if you contact him and what comes of it.

Michele W

ear/palate/hip surgery

Hi!

It's been a busy weekend. Family usually comes to us for holidays,

but

this time we went to my mom's because we had an appt with an ear

specialist near her. We saw Dr Bauer in Chicago -- plastic surgery at

Children's Memorial. He is confident that he can fix Aubrie's ears

without using rib cartilage. Her ears don't look too bad -- like if

you

could just hold them back they'd be fine. Basically, he will pull

them

back and reconstruct the pinnae etc using the tissue there. Very

exciting!

Better than that though -- he heard her speech and said he could fix

it.

He looked at her palate (she wouldn't let him touch it) and is certain

that he can repair her submucous cleft and improve her speech

significantly -- although we can't be sure how much because there are

so

many other factors hindering it. You might recall that we had speech

testing (SVF and VNE) this winter and the cranial-facial team in St

Louis decided they'd rather not do surgery because she has some

movement of the palate as it is. It is so confusing when specialists

have differing opinions. Made me wish we could get a second opinion

in

every specialist area in Chicago just to see what they might come up

with that differs from St Louis. I love all our docs, but it's just a

fact that each team sees things differently some times.

Ok-- here's the complication. I was floored earlier this year when we

learned that Aubrie had to have major hip surgery. I had already made

this consult appt with the ear surgeon before that news, or I would

have

put it off until after. I expected to consult, get info about ear

surgery, and wait at least a year. Well, with the palate repair

making

significant advances in speech, he really didn't want to wait til next

year. In fact, he wants to do it before her hips. It must be done at

least 3 weeks before the hips in order for the palate repair to be ok

for another intubation. Hips are the end of July. We will schedule

ears and palate next week. The surgeon is scheduling in July but has

some earlier openings so I'm hoping June -- not May which would

interfere with school.

So our summer will consist of ear/palate repair early, hips after with

the cast through the start of school, walker through our out-of-town

wedding in Oct maybe, and a " new woman " by Christmas. Argh-- I am so

not looking forward to any of this. Tell me it's gonna be ok!

For those who have done the body cast, what kind of clothes do I need

to

look for at garage sales to wear over the cast? I'm thinking long

skirts, dresses, shorts. How much bigger than her do they need to be?

How much will she weigh in the cast if she's 38lb now? Any websites

that will help with cast info? I am interested in doing a cast on a

teddy bear or baby doll with paper mache or the plaster kits you use

for

mask making. Aubrie's been asking so many questions. I think it'd

help

her to play with a casted baby for a while to get familiar with how it

will work. In order to do it, I need to really know what the thing

will

look like, how the bedpan fits in there, etc. I have one info sheet

from the hospital that is some help.

Will she get her cast replaced throughout the 2 mos as it gets looser?

Michele W

mom to Aubrie 6 yrs

[Guest guest]

Vicky-

Sorry I called you Jodie! Anyway- I know what you mean about that feeling that

you haven't done enough. It's awfully frustrating, isn't it? It doesn't help

that there are so many differing opinions in the medical community. You think

you've had an expert opinion, but there are so many experts out there! I will

be very anxious to hear what Dr Bauer has to say about Jodie.

Michele W

ear/palate/hip surgery

Hi!

It's been a busy weekend. Family usually comes to us for holidays,

but

this time we went to my mom's because we had an appt with an ear

specialist near her. We saw Dr Bauer in Chicago -- plastic surgery at

Children's Memorial. He is confident that he can fix Aubrie's ears

without using rib cartilage. Her ears don't look too bad -- like if

you

could just hold them back they'd be fine. Basically, he will pull

them

back and reconstruct the pinnae etc using the tissue there. Very

exciting!

Better than that though -- he heard her speech and said he could fix

it.

He looked at her palate (she wouldn't let him touch it) and is certain

that he can repair her submucous cleft and improve her speech

significantly -- although we can't be sure how much because there are

so

many other factors hindering it. You might recall that we had speech

testing (SVF and VNE) this winter and the cranial-facial team in St

Louis decided they'd rather not do surgery because she has some

movement of the palate as it is. It is so confusing when specialists

have differing opinions. Made me wish we could get a second opinion

in

every specialist area in Chicago just to see what they might come up

with that differs from St Louis. I love all our docs, but it's just a

fact that each team sees things differently some times.

Ok-- here's the complication. I was floored earlier this year when we

learned that Aubrie had to have major hip surgery. I had already made

this consult appt with the ear surgeon before that news, or I would

have

put it off until after. I expected to consult, get info about ear

surgery, and wait at least a year. Well, with the palate repair

making

significant advances in speech, he really didn't want to wait til next

year. In fact, he wants to do it before her hips. It must be done at

least 3 weeks before the hips in order for the palate repair to be ok

for another intubation. Hips are the end of July. We will schedule

ears and palate next week. The surgeon is scheduling in July but has

some earlier openings so I'm hoping June -- not May which would

interfere with school.

So our summer will consist of ear/palate repair early, hips after with

the cast through the start of school, walker through our out-of-town

wedding in Oct maybe, and a " new woman " by Christmas. Argh-- I am so

not looking forward to any of this. Tell me it's gonna be ok!

For those who have done the body cast, what kind of clothes do I need

to

look for at garage sales to wear over the cast? I'm thinking long

skirts, dresses, shorts. How much bigger than her do they need to be?

How much will she weigh in the cast if she's 38lb now? Any websites

that will help with cast info? I am interested in doing a cast on a

teddy bear or baby doll with paper mache or the plaster kits you use

for

mask making. Aubrie's been asking so many questions. I think it'd

help

her to play with a casted baby for a while to get familiar with how it

will work. In order to do it, I need to really know what the thing

will

look like, how the bedpan fits in there, etc. I have one info sheet

from the hospital that is some help.

Will she get her cast replaced throughout the 2 mos as it gets looser?

Michele W

mom to Aubrie 6 yrs