surgery

[Guest guest]

Thanks Casey. is usually a good sleeper but I just never feel rested.

I feel good the first few hours I'm awake and then I crash. I'm ready for

bed at 5pm, then when does go to sleep at 8 pm, I can't seem to fall

asleep. UGH. I know things will get easier and to tell you the truth. I

wouldn't have it any other way now. I love my son more than anything. He is

the joy of my life. All he does is smile. You would never know anything was

ever wrong with him just by his expressions. He loves life. He is so happy

when he wakes in the morning. I love it.

God bless,

Lynda

[Guest guest]

Thanks Casey. is usually a good sleeper but I just never feel rested.

I feel good the first few hours I'm awake and then I crash. I'm ready for

bed at 5pm, then when does go to sleep at 8 pm, I can't seem to fall

asleep. UGH. I know things will get easier and to tell you the truth. I

wouldn't have it any other way now. I love my son more than anything. He is

the joy of my life. All he does is smile. You would never know anything was

ever wrong with him just by his expressions. He loves life. He is so happy

when he wakes in the morning. I love it.

God bless,

Lynda

[Guest guest]

Thanks Casey. is usually a good sleeper but I just never feel rested.

I feel good the first few hours I'm awake and then I crash. I'm ready for

bed at 5pm, then when does go to sleep at 8 pm, I can't seem to fall

asleep. UGH. I know things will get easier and to tell you the truth. I

wouldn't have it any other way now. I love my son more than anything. He is

the joy of my life. All he does is smile. You would never know anything was

ever wrong with him just by his expressions. He loves life. He is so happy

when he wakes in the morning. I love it.

God bless,

Lynda

[Guest guest]

Lynda-

Of course, your past does not affect the way we think of you! Here you are a

CHARGE parent -- that's all we need to know to accept you into our " family " .

Your past behavior did not contribute to 's CHARGE. All you have to do is

look at the wide variety of families affected by CHARGE to see that there is no

one common denominator. CHARGE is random.

Another good book is Why Bad Things Happen to Good People (pipe in here,

someone, if I haven't gotten the title quite right -- can't remember for sure).

It's written by a rabbi and helps to reconcile religious beliefs about God with

having something like this happen to your family. We've all heard that " God

only gives you what you can handle " etc. Those comments have been very

difficult for me and this book helped put it into perspective in a way that I

could understand.

The other book I mentioned, Changed by a Child, is written in short excerpts --

sort of like the Hazelton meditation series for alcoholics. It might be one you

could handle because each complete essay is only 1-2 pages. It uses quotes and

thoughts from parents of children with disabilities and expands on each. It

goes through each phase of the journey -- from diagnosis to adulthood. It

helped me to know that the feelings I was having in the beginning were " normal " ,

and it helped me to see what might be coming in the future.

Michele W

Aubrie's mom

[Guest guest]

&

The name of the book is " When Bad things happen to good people " . It

was written in 1981 by a rabbi named Kushner, and it was written in

response to the challenge of faith he had after his son died

tragically. Kushner presents his theological framework in the form

of a re-interpretation of the story of Job. He lets go of the notion

that God is all-powerful in favor of the notion that God is good.

I haven't read it, but I think about it alot. I saw an interview

between the rabbi and Joan Rivers years back (after JR's husband

committed suicide). The interview was so powerful then and I

remember crying.

I don't know if it is still in print, but you can always look on the

internet for second hand or at the library.

Good luck

Tracey

[Guest guest]

&

The name of the book is " When Bad things happen to good people " . It

was written in 1981 by a rabbi named Kushner, and it was written in

response to the challenge of faith he had after his son died

tragically. Kushner presents his theological framework in the form

of a re-interpretation of the story of Job. He lets go of the notion

that God is all-powerful in favor of the notion that God is good.

I haven't read it, but I think about it alot. I saw an interview

between the rabbi and Joan Rivers years back (after JR's husband

committed suicide). The interview was so powerful then and I

remember crying.

I don't know if it is still in print, but you can always look on the

internet for second hand or at the library.

Good luck

Tracey

[Guest guest]

You all might think I am nuts, but I have a different view on why Dylan is

with us. Perhaps it is because my first child died at birth that I did all

my why me's then. I have always felt that Dylan's and my souls knew each

other before life on this earth and that we were meant to be here together.

I believe he looked out over the future of his life, before he was born, and

he knew there would be challenges, but that he would need them to accomplish

his purpose on earth and that he accepted these challenges and his purpose.

Yeah maybe I read too much, Celestine Prophecy and Embraced by The Light,

but it does give me comfort.

Kim

----------

>

>To: CHARGE

>Subject: Re: re: surgery

>Date: Wed, Sep 25, 2002, 10:40 AM

>

> Lynda,

>

> Like says it does get better.. even after 10 years I go through

> the " why us? " thing.

>

> Aari's surgeries coming up one to place a palate expander in to

> widen his palate for the bone graft surgery. The bone graft is going

> to be the big one.. He'll be on a liquid diet for weeks. soft foods for

> a while after. He's gonna hate it because that boy does love to eat.

>

> As far as the conference in Cleveland.. I'm planning on going.. and

> you will love it.. Great info, get to meet people that have gone

> through it .. get to see what is going on with all the kiddos.. meet old

> friends and make new ones..

>

> BTW you do have friends and family... right here on this list.. we all

> concider ourselves family and have for the last seven years this list

> has been here.

>

> Geez, I can't believe I started this list almost 7 years ago.. went from

> 5 or 6 to over 450 now..

>

> You take care,

>

>

> Casey

> Mom to Dawn, 23 HH, Ken 13, ADHD,LD, , 10 CHARGE

> Cobb CA

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

[Guest guest]

You all might think I am nuts, but I have a different view on why Dylan is

with us. Perhaps it is because my first child died at birth that I did all

my why me's then. I have always felt that Dylan's and my souls knew each

other before life on this earth and that we were meant to be here together.

I believe he looked out over the future of his life, before he was born, and

he knew there would be challenges, but that he would need them to accomplish

his purpose on earth and that he accepted these challenges and his purpose.

Yeah maybe I read too much, Celestine Prophecy and Embraced by The Light,

but it does give me comfort.

Kim

----------

>

>To: CHARGE

>Subject: Re: re: surgery

>Date: Wed, Sep 25, 2002, 10:40 AM

>

> Lynda,

>

> Like says it does get better.. even after 10 years I go through

> the " why us? " thing.

>

> Aari's surgeries coming up one to place a palate expander in to

> widen his palate for the bone graft surgery. The bone graft is going

> to be the big one.. He'll be on a liquid diet for weeks. soft foods for

> a while after. He's gonna hate it because that boy does love to eat.

>

> As far as the conference in Cleveland.. I'm planning on going.. and

> you will love it.. Great info, get to meet people that have gone

> through it .. get to see what is going on with all the kiddos.. meet old

> friends and make new ones..

>

> BTW you do have friends and family... right here on this list.. we all

> concider ourselves family and have for the last seven years this list

> has been here.

>

> Geez, I can't believe I started this list almost 7 years ago.. went from

> 5 or 6 to over 450 now..

>

> You take care,

>

>

> Casey

> Mom to Dawn, 23 HH, Ken 13, ADHD,LD, , 10 CHARGE

> Cobb CA

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

[Guest guest]

I've read the Celestine Prophecy and have had long discussions with a friend

whose beliefs mirror yours. I haven't decided what I most believe yet, but

your ideas are interesting and equally or more plausible to me than any

other religious doctrine.

Michele W

Aubrie's mom

Re: re: surgery

> >Date: Wed, Sep 25, 2002, 10:40 AM

> >

>

> > Lynda,

> >

> > Like says it does get better.. even after 10 years I go through

> > the " why us? " thing.

> >

> > Aari's surgeries coming up one to place a palate expander in to

> > widen his palate for the bone graft surgery. The bone graft is going

> > to be the big one.. He'll be on a liquid diet for weeks. soft foods for

> > a while after. He's gonna hate it because that boy does love to eat.

> >

> > As far as the conference in Cleveland.. I'm planning on going.. and

> > you will love it.. Great info, get to meet people that have gone

> > through it .. get to see what is going on with all the kiddos.. meet old

> > friends and make new ones..

> >

> > BTW you do have friends and family... right here on this list.. we all

> > concider ourselves family and have for the last seven years this list

> > has been here.

> >

> > Geez, I can't believe I started this list almost 7 years ago.. went from

> > 5 or 6 to over 450 now..

> >

> > You take care,

> >

> >

> > Casey

> > Mom to Dawn, 23 HH, Ken 13, ADHD,LD, , 10 CHARGE

> > Cobb CA

> >

> >

> > 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

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

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

> >

> >

> >

[Guest guest]

Kim

I don't think you sound nuts. It sounded beautiful. is my little soul

mate too. I can't imagine him not with us.

Lynda

[Guest guest]

Kim

I don't think you sound nuts. It sounded beautiful. is my little soul

mate too. I can't imagine him not with us.

Lynda

[Guest guest]

Kim

I don't think you sound nuts. It sounded beautiful. is my little soul

mate too. I can't imagine him not with us.

Lynda

[Guest guest]

,

What thyroid problems do you have that you are getting surgery? I have a complex cyst in my right lobe and the endo that I saw last week told me that my left side is multi-nodular. He thinks that I will need surgery for this eventually. I'm so terrified of going into surgery, but if it comes to that then I guess I will have to suck it up. I hope your surgery goes very well with no complications...and hopefully you can keep one lobe! Good luck and be sure to post after your surgery to let me know how it went.

Serena

[Guest guest]

,

What thyroid problems do you have that you are getting surgery? I have a complex cyst in my right lobe and the endo that I saw last week told me that my left side is multi-nodular. He thinks that I will need surgery for this eventually. I'm so terrified of going into surgery, but if it comes to that then I guess I will have to suck it up. I hope your surgery goes very well with no complications...and hopefully you can keep one lobe! Good luck and be sure to post after your surgery to let me know how it went.

Serena

[Guest guest]

,

What thyroid problems do you have that you are getting surgery? I have a complex cyst in my right lobe and the endo that I saw last week told me that my left side is multi-nodular. He thinks that I will need surgery for this eventually. I'm so terrified of going into surgery, but if it comes to that then I guess I will have to suck it up. I hope your surgery goes very well with no complications...and hopefully you can keep one lobe! Good luck and be sure to post after your surgery to let me know how it went.

Serena

[Guest guest]

one which is hypoechoic

What is hypoechoic? These darn thyroids have so many malfunctions to them! I can't wait to see what they call my problems. They haven't classified anything yet except that I have a complex cyst. But now they want an ultrasound and may end up doing the needle biopsy AGAIN! Good thing needleds don't bother me. He said something about maybe doing a thyroid scan too. I wish I knew specifically what to call this so I could research it more and know my options. Relax about the surgery, you'll be fine. Have you ever had surgery? It's scary but it really is all in the mind. Once they give you that stuff to "relax" you, you won't remember anything after that!!! Try not to think about it...and let them know as soon as you go in on Thurs. that you are anxious about it and they'll give you a shot of something. It'll be ok. And it's for better health. Sometimes we have to go through painful things to make us better. I'll pray for your surgery to go well, and for you to have peace and comfort with it.

Serena

[Guest guest]

one which is hypoechoic

What is hypoechoic? These darn thyroids have so many malfunctions to them! I can't wait to see what they call my problems. They haven't classified anything yet except that I have a complex cyst. But now they want an ultrasound and may end up doing the needle biopsy AGAIN! Good thing needleds don't bother me. He said something about maybe doing a thyroid scan too. I wish I knew specifically what to call this so I could research it more and know my options. Relax about the surgery, you'll be fine. Have you ever had surgery? It's scary but it really is all in the mind. Once they give you that stuff to "relax" you, you won't remember anything after that!!! Try not to think about it...and let them know as soon as you go in on Thurs. that you are anxious about it and they'll give you a shot of something. It'll be ok. And it's for better health. Sometimes we have to go through painful things to make us better. I'll pray for your surgery to go well, and for you to have peace and comfort with it.

Serena

[Guest guest]

one which is hypoechoic

What is hypoechoic? These darn thyroids have so many malfunctions to them! I can't wait to see what they call my problems. They haven't classified anything yet except that I have a complex cyst. But now they want an ultrasound and may end up doing the needle biopsy AGAIN! Good thing needleds don't bother me. He said something about maybe doing a thyroid scan too. I wish I knew specifically what to call this so I could research it more and know my options. Relax about the surgery, you'll be fine. Have you ever had surgery? It's scary but it really is all in the mind. Once they give you that stuff to "relax" you, you won't remember anything after that!!! Try not to think about it...and let them know as soon as you go in on Thurs. that you are anxious about it and they'll give you a shot of something. It'll be ok. And it's for better health. Sometimes we have to go through painful things to make us better. I'll pray for your surgery to go well, and for you to have peace and comfort with it.

Serena

[Guest guest]

Topper,

Yes it is when they give you a "small" amount of radioactive iodine and 24hours later they take an x-ray of the thyroid. It shows whether a nodule is hot or cold. I'm awaiting his desicion on whether or not I will have to have the scan done.

Serena

[Guest guest]

Topper,

Yes it is when they give you a "small" amount of radioactive iodine and 24hours later they take an x-ray of the thyroid. It shows whether a nodule is hot or cold. I'm awaiting his desicion on whether or not I will have to have the scan done.

Serena

[Guest guest]

Hi,

I got this but had not yet responded to it.. I still had it in my "gotta get to folder".. sometimes I get behind and then have to just work my way back.

You weren't being ignored... Honest... and always remember that you can contact or me directly if you need someone to 'talk' to.

I loved reading how the nurses are going to be helping you with this, getting nervous and upset before a procedure can really suck.. knowing that you have folks around you that are concerned for how you feel makes a HUGE difference.

The surgery is sure to go without a hitch. I'm eager to hear... make sure that your hubby lets us know!

Ouch.. you had to get stuck twice, I couldn't handle that... you're braver than I.. but them I'm a chicken S*** when it comes to needles... I have to give my little speech, they are then scooting around to find the best sticker that they have to make sure they get it on the first try. They appreciate that I warn them first... see... I get scared in my head, even though I know it doesnt' really hurt, and sometimes kick... so I have to warn them to sit to the side so that if a foot shoots up I don't have someone on the floor!!! hehehehehehe

Have you ever had surgery before? I haven't yet... so I have no idea what it's like.

Oh.. if your hubby is shy about posting to this whole throng of women.. he can send your updates to me.. then I'll post to the group... guys can get tongue tied when confronted with hundreds of women!!! hehehehe

Again, sorry for being late... I'm just working my way backwards....

Topper () *hanging head in shame*

On Mon, 26 Jul 2004 17:25:16 -0400 writes:

Well, I just went for my pre-op testing today for my surgery on thurday. The RN at the pre-op testing was amazing and made me feel so much better. The anestestiaologist was just as amazing. They already wrote on my chart that I am having anxiety and will give me something to relax whenever I request it prior to surgery. They were so responsive to my feelings. They also told me what a great surgeon I have. I almost forgot the extra bloodwork that my surgeon ordered (Free T4 and TSH) so I had to get stuck twice. But it was my own fault. lol I really didn't mind. So, If they only take out the left lobe I will be home sometime on friday but if the whole lobe comes out then I will be home sometime on saturday. I will try and have hubby email everyone but don't know if that will happen. lol "Dreams are the touchstones of our character." Henry Thoreau

[Guest guest]

Hi,

I got this but had not yet responded to it.. I still had it in my "gotta get to folder".. sometimes I get behind and then have to just work my way back.

You weren't being ignored... Honest... and always remember that you can contact or me directly if you need someone to 'talk' to.

I loved reading how the nurses are going to be helping you with this, getting nervous and upset before a procedure can really suck.. knowing that you have folks around you that are concerned for how you feel makes a HUGE difference.

The surgery is sure to go without a hitch. I'm eager to hear... make sure that your hubby lets us know!

Ouch.. you had to get stuck twice, I couldn't handle that... you're braver than I.. but them I'm a chicken S*** when it comes to needles... I have to give my little speech, they are then scooting around to find the best sticker that they have to make sure they get it on the first try. They appreciate that I warn them first... see... I get scared in my head, even though I know it doesnt' really hurt, and sometimes kick... so I have to warn them to sit to the side so that if a foot shoots up I don't have someone on the floor!!! hehehehehehe

Have you ever had surgery before? I haven't yet... so I have no idea what it's like.

Oh.. if your hubby is shy about posting to this whole throng of women.. he can send your updates to me.. then I'll post to the group... guys can get tongue tied when confronted with hundreds of women!!! hehehehe

Again, sorry for being late... I'm just working my way backwards....

Topper () *hanging head in shame*

On Mon, 26 Jul 2004 17:25:16 -0400 writes:

Well, I just went for my pre-op testing today for my surgery on thurday. The RN at the pre-op testing was amazing and made me feel so much better. The anestestiaologist was just as amazing. They already wrote on my chart that I am having anxiety and will give me something to relax whenever I request it prior to surgery. They were so responsive to my feelings. They also told me what a great surgeon I have. I almost forgot the extra bloodwork that my surgeon ordered (Free T4 and TSH) so I had to get stuck twice. But it was my own fault. lol I really didn't mind. So, If they only take out the left lobe I will be home sometime on friday but if the whole lobe comes out then I will be home sometime on saturday. I will try and have hubby email everyone but don't know if that will happen. lol "Dreams are the touchstones of our character." Henry Thoreau

[Guest guest]

Hi,

I got this but had not yet responded to it.. I still had it in my "gotta get to folder".. sometimes I get behind and then have to just work my way back.

You weren't being ignored... Honest... and always remember that you can contact or me directly if you need someone to 'talk' to.

I loved reading how the nurses are going to be helping you with this, getting nervous and upset before a procedure can really suck.. knowing that you have folks around you that are concerned for how you feel makes a HUGE difference.

The surgery is sure to go without a hitch. I'm eager to hear... make sure that your hubby lets us know!

Ouch.. you had to get stuck twice, I couldn't handle that... you're braver than I.. but them I'm a chicken S*** when it comes to needles... I have to give my little speech, they are then scooting around to find the best sticker that they have to make sure they get it on the first try. They appreciate that I warn them first... see... I get scared in my head, even though I know it doesnt' really hurt, and sometimes kick... so I have to warn them to sit to the side so that if a foot shoots up I don't have someone on the floor!!! hehehehehehe

Have you ever had surgery before? I haven't yet... so I have no idea what it's like.

Oh.. if your hubby is shy about posting to this whole throng of women.. he can send your updates to me.. then I'll post to the group... guys can get tongue tied when confronted with hundreds of women!!! hehehehe

Again, sorry for being late... I'm just working my way backwards....

Topper () *hanging head in shame*

On Mon, 26 Jul 2004 17:25:16 -0400 writes:

Well, I just went for my pre-op testing today for my surgery on thurday. The RN at the pre-op testing was amazing and made me feel so much better. The anestestiaologist was just as amazing. They already wrote on my chart that I am having anxiety and will give me something to relax whenever I request it prior to surgery. They were so responsive to my feelings. They also told me what a great surgeon I have. I almost forgot the extra bloodwork that my surgeon ordered (Free T4 and TSH) so I had to get stuck twice. But it was my own fault. lol I really didn't mind. So, If they only take out the left lobe I will be home sometime on friday but if the whole lobe comes out then I will be home sometime on saturday. I will try and have hubby email everyone but don't know if that will happen. lol "Dreams are the touchstones of our character." Henry Thoreau

[Guest guest]

I was diagnosed as hypo in 94. Then years went by and a move to another state and I was diagnosed with a goiter and hashimoto's thyroiditis and taken off my meds. Well after yet another move I finally found some good doctors. I have had several ultrasounds ect over the past 2 1/2 years. On my left lobe I have a solid nodule that has consistantly grown despite being back on synthroid. So they are calling it suspicious and will take out my left lobe during surgery and do a frozen section on the nodule. If it is cancer then they will take the whole thyroid. If not they are still going to look at the right lobe since I have many nodules (one which is hypoechoic) and it is larger than the left lobe. I won't know the outcome until after surgery.

Thanks so much for asking. As it is getting closer I am more nervous. My dr prescriped some xanax because I have been a wreck. But it so helps to talk to other people who care and understand.

"Dreams are the touchstones of our character." Henry Thoreau

Re: Surgery

,

What thyroid problems do you have that you are getting surgery? I have a complex cyst in my right lobe and the endo that I saw last week told me that my left side is multi-nodular. He thinks that I will need surgery for this eventually. I'm so terrified of going into surgery, but if it comes to that then I guess I will have to suck it up. I hope your surgery goes very well with no complications...and hopefully you can keep one lobe! Good luck and be sure to post after your surgery to let me know how it went.

Serena

[Guest guest]

I was diagnosed as hypo in 94. Then years went by and a move to another state and I was diagnosed with a goiter and hashimoto's thyroiditis and taken off my meds. Well after yet another move I finally found some good doctors. I have had several ultrasounds ect over the past 2 1/2 years. On my left lobe I have a solid nodule that has consistantly grown despite being back on synthroid. So they are calling it suspicious and will take out my left lobe during surgery and do a frozen section on the nodule. If it is cancer then they will take the whole thyroid. If not they are still going to look at the right lobe since I have many nodules (one which is hypoechoic) and it is larger than the left lobe. I won't know the outcome until after surgery.

Thanks so much for asking. As it is getting closer I am more nervous. My dr prescriped some xanax because I have been a wreck. But it so helps to talk to other people who care and understand.

"Dreams are the touchstones of our character." Henry Thoreau

Re: Surgery

,

What thyroid problems do you have that you are getting surgery? I have a complex cyst in my right lobe and the endo that I saw last week told me that my left side is multi-nodular. He thinks that I will need surgery for this eventually. I'm so terrified of going into surgery, but if it comes to that then I guess I will have to suck it up. I hope your surgery goes very well with no complications...and hopefully you can keep one lobe! Good luck and be sure to post after your surgery to let me know how it went.

Serena