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Re: Eiddelyn update

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Hi Ethelyn,

Great to hear from you all! We know it's hard to go through the

casting procedure, but that's why she has a wonderful mother to get

her through it all! We would love to see you guys relatively soon - I

know we have all been so busy.

Hugs to Eiddelyn,

, mom to

>

> From: D. Esser <cesserhabush (DOT) com>

> Subject: RE: [infantile_scoliosi s] Need advice on when to cast

> To: " infantile_scoliosi syahoogroups (DOT) com " <infantile_scoliosis

@yahoogroups. com>

> Date: Tuesday, August 5, 2008, 9:34 AM

>

>

>

>

>

>

> Remind me again how old Hadley is—our daughter could have made it 3

months with no problem she could have gone 3 ½ months—but she was 4

and 5. It all depends on if she grows in the cast and how much.

>

> E

>

>

>

>

>

>

> From: infantile_scoliosis @yahoogroups. com [mailto:infantile_

scoliosis@ yahoogroups. com] On Behalf Of Shauna

> Sent: Monday, August 04, 2008 8:18 PM

> To: infantile_scoliosis @yahoogroups. com

> Subject: [infantile_scoliosi s] Need advice on when to cast

>

>

>

>

> Just got a call from the same day surgery scheduler to let us know

> when Hadley's next casting apt will take place. She was casted last

> July 1st with her 2nd cast. So, i figured in Sept. would be the next

> one. Turns out our Hosp. will be closed Nov and December so they want

> to cast everybody in Oct so they will hopefully make it till Jan.

> until the hospital opens. Makes sense, but it will be 3 months in the

> cast if we wait until Oct 1st! Her first cast, she went 2 1/2 months

> in cast. The scheduler had her down for Sept. 16th for getting her 3rd

> cast. But i said, theres no way she'll make it till January if we cast

> her in September. Then she informed me that is why they plan on

> recasting her again Oct. 21st. That would mean she would only be in

> her cast about 1 month until we have to change it. I was a little

> worried about that so she said we could try and see if we can wait

> till Oct 21st. But then that would mean she will be in this cast for 3

> 1/2 months. Is that possible? Seems long to me. She needs to know at

> the end of the wk because she is holding the dates for us. We dont

> know what to do. I dont think Hadley will be able to make it that

> long, but i dont like the idea of her getting casted so soon after

> they put the 3rd cast on her. Im worried about loss of correction

> since its such a short time in the cast before they take it off and

> also, I dont want Hadley to have to go through that twice so soon.

>

> Any advice? What would you all do? Has any of your children made it 3

> 1/2 months in a cast?

> Anything would be great! Thanks and sorry for the long explanation!

>

> Shauna

>

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Thanks for the reply . Ya I hope we could get together again. Guess what during Eiddelyn's casting thee were about two other patients witht the same predicament and whose doctor is also our doctor but I am not sure whether they have been to this group yet. I never get to meet the parents of the children. That means that there are other patients here and parents which could add to our group in this part of the country.

Ethelyn

Subject: Re: Eiddelyn updateTo: infantile_scoliosis Date: Friday, August 8, 2008, 4:08 AM

Hi Ethelyn,Great to hear from you all! We know it's hard to go through thecasting procedure, but that's why she has a wonderful mother to gether through it all! We would love to see you guys relatively soon - Iknow we have all been so busy.Hugs to Eiddelyn,, mom to > > From: D. Esser <cesserhabush (DOT) com>> Subject: RE: [infantile_scoliosi s] Need advice on when to cast> To: "infantile_scoliosi syahoogroups (DOT) com" <infantile_scoliosi syahoogroups (DOT) com>> Date: Tuesday, August 5, 2008, 9:34 AM> > > > > > > Remind me again how old Hadley is—our daughter could have made it 3months with no problem she could have gone 3 ½ months—but she was 4and 5. It all depends on if she grows in the cast and how much.> > E> > > > > > > From: infantile_scoliosis @yahoogroups. com [mailto:infantile_scoliosis@ yahoogroups. com] On Behalf Of Shauna> Sent: Monday, August 04, 2008 8:18 PM> To: infantile_scoliosis @yahoogroups. com> Subject: [infantile_scoliosi s] Need advice on when to

cast> > > > > Just got a call from the same day surgery scheduler to let us know> when Hadley's next casting apt will take place. She was casted last> July 1st with her 2nd cast. So, i figured in Sept. would be the next> one. Turns out our Hosp. will be closed Nov and December so they want> to cast everybody in Oct so they will hopefully make it till Jan.> until the hospital opens. Makes sense, but it will be 3 months in the> cast if we wait until Oct 1st! Her first cast, she went 2 1/2 months> in cast. The scheduler had her down for Sept. 16th for getting her 3rd> cast. But i said, theres no way she'll make it till January if we cast> her in September. Then she informed me that is why they plan on> recasting her again Oct. 21st. That would mean she would only be in> her cast about 1 month until we have to change it. I was a little>

worried about that so she said we could try and see if we can wait> till Oct 21st. But then that would mean she will be in this cast for 3> 1/2 months. Is that possible? Seems long to me. She needs to know at> the end of the wk because she is holding the dates for us. We dont> know what to do. I dont think Hadley will be able to make it that> long, but i dont like the idea of her getting casted so soon after> they put the 3rd cast on her. Im worried about loss of correction> since its such a short time in the cast before they take it off and> also, I dont want Hadley to have to go through that twice so soon. > > Any advice? What would you all do? Has any of your children made it 3> 1/2 months in a cast? > Anything would be great! Thanks and sorry for the long explanation!> > Shauna>

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Hi Ethelyn!

Thanks! Noelle is in cast #3 now and we go back October 5-8 for probably cast#4.....

I know it's a slow road with Eiddy, but chin up.... There will be a light at the end of the tunnel! Steph

From: D. Esser <cesserhabush (DOT) com>Subject: RE: [infantile_scoliosi s] Need advice on when to castTo: "infantile_scoliosi syahoogroups (DOT) com" <infantile_scoliosis @yahoogroups. com>Date: Tuesday, August 5, 2008, 9:34 AM

Remind me again how old Hadley is—our daughter could have made it 3 months with no problem she could have gone 3 ½ months—but she was 4 and 5. It all depends on if she grows in the cast and how much.

E

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of ShaunaSent: Monday, August 04, 2008 8:18 PMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] Need advice on when to cast

Just got a call from the same day surgery scheduler to let us knowwhen Hadley's next casting apt will take place. She was casted lastJuly 1st with her 2nd cast. So, i figured in Sept. would be the nextone. Turns out our Hosp. will be closed Nov and December so they wantto cast everybody in Oct so they will hopefully make it till Jan.until the hospital opens. Makes sense, but it will be 3 months in thecast if we wait until Oct 1st! Her first cast, she went 2 1/2 monthsin cast. The scheduler had her down for Sept. 16th for getting her 3rdcast. But i said, theres no way she'll make it till January if we casther in September. Then she informed me that is why they plan onrecasting her again Oct. 21st. That would mean she would only be inher cast about 1 month until we have to change it. I was a littleworried about that so she said we could try and see if we can waittill Oct 21st. But then that would

mean she will be in this cast for 31/2 months. Is that possible? Seems long to me. She needs to know atthe end of the wk because she is holding the dates for us. We dontknow what to do. I dont think Hadley will be able to make it thatlong, but i dont like the idea of her getting casted so soon afterthey put the 3rd cast on her. Im worried about loss of correctionsince its such a short time in the cast before they take it off andalso, I dont want Hadley to have to go through that twice so soon. Any advice? What would you all do? Has any of your children made it 31/2 months in a cast? Anything would be great! Thanks and sorry for the long explanation!Shauna

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Thanks Steph,

Ya, it is because she is much older now. She will be 4 this September. We lost some precious time too during her faster growth rate. i am still waiting for the schedule for cast #3 bec. initially we were sched. Dec. 19 but I told the dr. that it will be about 5 mos. from the 2nd cast then if we wait for Dec.

( Off the record LOL) We will be off to Vegas tomorrow to meet some of my high school classmates. This is the high light of my leave of abscence from work bec. of her casting.

Ethelyn

From: D. Esser <cesserhabush (DOT) com>Subject: RE: [infantile_scoliosi s] Need advice on when to castTo: "infantile_scoliosi syahoogroups (DOT) com" <infantile_scoliosis @yahoogroups. com>Date: Tuesday, August 5, 2008, 9:34 AM

Remind me again how old Hadley is—our daughter could have made it 3 months with no problem she could have gone 3 ½ months—but she was 4 and 5. It all depends on if she grows in the cast and how much.

E

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of ShaunaSent: Monday, August 04, 2008 8:18 PMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] Need advice on when to cast

Just got a call from the same day surgery scheduler to let us knowwhen Hadley's next casting apt will take place. She was casted lastJuly 1st with her 2nd cast. So, i figured in Sept. would be the nextone. Turns out our Hosp. will be closed Nov and December so they wantto cast everybody in Oct so they will hopefully make it till Jan.until the hospital opens. Makes sense, but it will be 3 months in thecast if we wait until Oct 1st! Her first cast, she went 2 1/2 monthsin cast. The scheduler had her down for Sept. 16th for getting her 3rdcast. But i said, theres no way she'll make it till January if we casther in September. Then she informed me that is why they plan onrecasting her again Oct. 21st. That would mean she would only be inher cast about 1 month until we have to change it. I was a littleworried about that so she said we could try and see if we can waittill Oct 21st. But then that would

mean she will be in this cast for 31/2 months. Is that possible? Seems long to me. She needs to know atthe end of the wk because she is holding the dates for us. We dontknow what to do. I dont think Hadley will be able to make it thatlong, but i dont like the idea of her getting casted so soon afterthey put the 3rd cast on her. Im worried about loss of correctionsince its such a short time in the cast before they take it off andalso, I dont want Hadley to have to go through that twice so soon. Any advice? What would you all do? Has any of your children made it 31/2 months in a cast? Anything would be great! Thanks and sorry for the long explanation!Shauna

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Have fun!!!!! Steph

From: D. Esser <cesserhabush (DOT) com>Subject: RE: [infantile_scoliosi s] Need advice on when to castTo: "infantile_scoliosi syahoogroups (DOT) com" <infantile_scoliosis @yahoogroups. com>Date: Tuesday, August 5, 2008, 9:34 AM

Remind me again how old Hadley is—our daughter could have made it 3 months with no problem she could have gone 3 ½ months—but she was 4 and 5. It all depends on if she grows in the cast and how much.

E

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of ShaunaSent: Monday, August 04, 2008 8:18 PMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] Need advice on when to cast

Just got a call from the same day surgery scheduler to let us knowwhen Hadley's next casting apt will take place. She was casted lastJuly 1st with her 2nd cast. So, i figured in Sept. would be the nextone. Turns out our Hosp. will be closed Nov and December so they wantto cast everybody in Oct so they will hopefully make it till Jan.until the hospital opens. Makes sense, but it will be 3 months in thecast if we wait until Oct 1st! Her first cast, she went 2 1/2 monthsin cast. The scheduler had her down for Sept. 16th for getting her 3rdcast. But i said, theres no way she'll make it till January if we casther in September. Then she informed me that is why they plan onrecasting her again Oct. 21st. That would mean she would only be inher cast about 1 month until we have to change it. I was a littleworried about that so she said we could try and see if we can waittill Oct 21st. But then that would

mean she will be in this cast for 31/2 months. Is that possible? Seems long to me. She needs to know atthe end of the wk because she is holding the dates for us. We dontknow what to do. I dont think Hadley will be able to make it thatlong, but i dont like the idea of her getting casted so soon afterthey put the 3rd cast on her. Im worried about loss of correctionsince its such a short time in the cast before they take it off andalso, I dont want Hadley to have to go through that twice so soon. Any advice? What would you all do? Has any of your children made it 31/2 months in a cast? Anything would be great! Thanks and sorry for the long explanation!Shauna

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Hi ,

Finally I got to sit down and check e-mails. Before going back to work we went to Vegas for a breather. We are about 4 hrs south of it. so i was kind of out of touch again for the past 5 days.

Flexiform mass is another subcutaneous growth just like another cyst.But why do they call it flexiform, I really do not know. Eiddelyn has one in the spine and another one in the right chest. as you know NF has so many symptoms and manifestations like scoliosis but unles it hinders or causes problem the drs just keep an eye on it.

Wish you and sophia well. I already inquired here in our hospital about going with Eiddelyn but I never got my way. they said that it bec. of legalitis.

Ethelyn

From: D. Esser <cesserhabush (DOT) com>Subject: RE: [infantile_scoliosi s] Need advice on when to castTo: "infantile_scoliosi syahoogroups (DOT) com" <infantile_scoliosis @yahoogroups. com>Date: Tuesday, August 5, 2008, 9:34 AM

Remind me again how old Hadley is—our daughter could have made it 3 months with no problem she could have gone 3 ½ months—but she was 4 and 5. It all depends on if she grows in the cast and how much.

E

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of ShaunaSent: Monday, August 04, 2008 8:18 PMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] Need advice on when to cast

Just got a call from the same day surgery scheduler to let us knowwhen Hadley's next casting apt will take place. She was casted lastJuly 1st with her 2nd cast. So, i figured in Sept. would be the nextone. Turns out our Hosp. will be closed Nov and December so they wantto cast everybody in Oct so they will hopefully make it till Jan.until the hospital opens. Makes sense, but it will be 3 months in thecast if we wait until Oct 1st! Her first cast, she went 2 1/2 monthsin cast. The scheduler had her down for Sept. 16th for getting her 3rdcast. But i said, theres no way she'll make it till January if we casther in September. Then she informed me that is why they plan onrecasting her again Oct. 21st. That would mean she would only be inher cast about 1 month until we have to change it. I was a littleworried about that so she

said we could try and see if we can waittill Oct 21st. But then that would mean she will be in this cast for 31/2 months. Is that possible? Seems long to me. She needs to know atthe end of the wk because she is holding the dates for us. We dontknow what to do. I dont think Hadley will be able to make it thatlong, but i dont like the idea of her getting casted so soon afterthey put the 3rd cast on her. Im worried about loss of correctionsince its such a short time in the cast before they take it off andalso, I dont want Hadley to have to go through that twice so soon. Any advice? What would you all do? Has any of your children made it 31/2 months in a cast? Anything would be great! Thanks and sorry for the long explanation!Shauna

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Thanks for

the explanation and well wishes.  I am now counting down the days.  The procedure

will take place on Sept. 2nd, so please think of my girl on that day.

Recovery will be around 2/3 weeks.

Thanks Ethelyn!

HRH

[infantile_scoliosi s] Need advice on when to cast

Just got a call from the same day surgery

scheduler to let us know

when Hadley's next casting apt will take place. She was casted last

July 1st with her 2nd cast. So, i figured in Sept. would be the next

one. Turns out our Hosp. will be closed Nov and December so they want

to cast everybody in Oct so they will hopefully make it till Jan.

until the hospital opens. Makes sense, but it will be 3 months in the

cast if we wait until Oct 1st! Her first cast, she went 2 1/2 months

in cast. The scheduler had her down for Sept. 16th for getting her 3rd

cast. But i said, theres no way she'll make it till January if we cast

her in September. Then she informed me that is why they plan on

recasting her again Oct. 21st. That would mean she would only be in

her cast about 1 month until we have to change it. I was a little

worried about that so she said we could try and see if we can wait

till Oct 21st. But then that would mean she will be in this cast for 3

1/2 months. Is that possible? Seems long to me. She needs to know at

the end of the wk because she is holding the dates for us. We dont

know what to do. I dont think Hadley will be able to make it that

long, but i dont like the idea of her getting casted so soon after

they put the 3rd cast on her. Im worried about loss of correction

since its such a short time in the cast before they take it off and

also, I dont want Hadley to have to go through that twice so soon.

Any advice? What would you all do? Has any of your children made it 3

1/2 months in a cast?

Anything would be great! Thanks and sorry for the long explanation!

Shauna

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-- We will definitely be thinking of you both!! Tell Liv we said hi!!! I am going to be in Denver on Sep 5 & 6 for a dollhouse show so we'll miss each other but I'll be thinking of you. Let us know if we can do anything. Hugs

Shara

[infantile_scoliosi s] Need advice on when to cast

Just got a call from the same day surgery scheduler to let us knowwhen Hadley's next casting apt will take place. She was casted lastJuly 1st with her 2nd cast. So, i figured in Sept. would be the nextone. Turns out our Hosp. will be closed Nov and December so they wantto cast everybody in Oct so they will hopefully make it till Jan.until the hospital opens. Makes sense, but it will be 3 months in thecast if we wait until Oct 1st! Her first cast, she went 2 1/2 monthsin cast. The scheduler had her down for Sept. 16th for getting her 3rdcast. But i said, theres no way she'll make it till January if we casther in September. Then she informed me that is why they plan onrecasting her again Oct. 21st. That would mean she would only be inher cast about 1 month until we have to change it. I was a littleworried about that so she said we could try and see if we can waittill Oct 21st. But then that would mean she will be in this cast for 31/2 months. Is that possible? Seems long to me. She needs to know atthe end of the wk because she is holding the dates for us. We dontknow what to do. I dont think Hadley will be able to make it thatlong, but i dont like the idea of her getting casted so soon afterthey put the 3rd cast on her. Im worried about loss of correctionsince its such a short time in the cast before they take it off andalso, I dont want Hadley to have to go through that twice so soon. Any advice? What would you all do? Has any of your children made it 31/2 months in a cast? Anything would be great! Thanks and sorry for the long explanation!Shauna

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I will be thinking of you ans esp. Olivia. I hope they will have a child psychologist that will be you during that time. I forgot how old is Olivia but try some things that would distract her ; for Eiddelyn the balloons did it as well as the blocks. I also have some lollipops for her after the procedure but of course after she was ok i tried to "steal" and throw away" the lollipops away.

Ethelyn From: D. Esser <cesserhabush (DOT) com>Subject: RE: [infantile_scoliosi s] Need advice on when to castTo: "infantile_scoliosi syahoogroups (DOT) com" <infantile_scoliosis @yahoogroups. com>Date: Tuesday, August 5, 2008, 9:34 AM

Remind me again how old Hadley is—our daughter could have made it 3 months with no problem she could have gone 3 ½ months—but she was 4 and 5. It all depends on if she grows in the cast and how much.

E

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of ShaunaSent: Monday, August 04, 2008 8:18 PMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] Need advice on when to cast

Just got a call from the same day surgery scheduler to let us knowwhen Hadley's next casting apt will take place. She was casted lastJuly 1st with her 2nd cast. So, i figured in Sept. would be the nextone. Turns out our Hosp. will be closed Nov and December so they wantto cast everybody in Oct so they will hopefully make it till Jan.until the hospital opens. Makes sense, but it will be 3 months in thecast if we wait until Oct 1st! Her first cast, she went 2 1/2 monthsin cast. The scheduler had her down for Sept. 16th for getting her 3rdcast. But i said, theres no way she'll make it till January if we casther in September. Then she informed me that is why they plan onrecasting her again Oct. 21st. That would mean she would only be inher cast about 1 month until we have to change it. I was a littleworried about that so she

said we could try and see if we can waittill Oct 21st. But then that would mean she will be in this cast for 31/2 months. Is that possible? Seems long to me. She needs to know atthe end of the wk because she is holding the dates for us. We dontknow what to do. I dont think Hadley will be able to make it thatlong, but i dont like the idea of her getting casted so soon afterthey put the 3rd cast on her. Im worried about loss of correctionsince its such a short time in the cast before they take it off andalso, I dont want Hadley to have to go through that twice so soon. Any advice? What would you all do? Has any of your children made it 31/2 months in a cast? Anything would be great! Thanks and sorry for the long explanation!Shauna

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