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Hey all,

went to the ortho today we are doing surgery on his left foot to

straighten it and remove a bone and he has a cyst on his left wrist. they

will do both surgeries at the same time. he will have a walking cast on for

about a month on his foot and a splint for 3 weeks on his wrist.

at this time we aren't worrying about his hips unless they keep giving him

trouble.

sorry got to run. miss you all big much. take care.

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,

So sorry s has to have surgery. He sure is one touch little guy. I

bet someday he will do something with medicine and children. Hope all goes

well.

Lynn

----------

> From: 12341234@...

>

> Subject: Re: [ ] and surgery

> Date: Thursday, November 29, 2001 6:25 PM

>

> Hey all,

>

> went to the ortho today we are doing surgery on his left foot to

> straighten it and remove a bone and he has a cyst on his left wrist. they

> will do both surgeries at the same time. he will have a walking cast on

for

> about a month on his foot and a splint for 3 weeks on his wrist.

>

> at this time we aren't worrying about his hips unless they keep giving

him

> trouble.

>

> sorry got to run. miss you all big much. take care.

>

>

>

>

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Thank you Lynn,

Surgery is Dec. 6th. We have to be there at 5am. We are trying to get things

that he will need after surgery now. I got a baby monitor so that during the

night if he needs me all he as to do is give a little shout. Today I am

getting him some cheap sweat pants so we can cut the leg cuff off to fit over

his cast.

I am trying to get the school to get his school work together for the next 2

1/2 weeks. I don't plan on him going back to school until after the new year.

He is getting a little nervous and thats understandable. He is a bit excited

too. I will let you all know how he is when i get him home. Say a little

prayer for him please.

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& ,

Good luck . I hope you heal quickly so that you can get back to your

normal

activates. I'll be waiting to hear how it's going, so please update us when

you can.

a

Re: [ ] and surgery

Hey all,

went to the ortho today we are doing surgery on his left foot to

straighten it and remove a bone and he has a cyst on his left wrist. they

will do both surgeries at the same time. he will have a walking cast on for

about a month on his foot and a splint for 3 weeks on his wrist.

at this time we aren't worrying about his hips unless they keep giving him

trouble.

sorry got to run. miss you all big much. take care.

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Hey everyone,

did well in surgery yesterday. When he woke up he had trouble though.

His blood pressure went up and he was real upset and in alot of pain. He not

once complained about his wrist, which in fact didn't have a cyst. The fluid

had become solid in a way and the dr trimmed that up but looks like the wrist

bone has fused itself. He will always have a lump in his wrist. His foot is

really giving him pain. They gave him 22 ccs of moraphine. The gases they

used to put him to sleep caused him to have trouble breathing when he woke

up. His oxygen sats keep dropping down to 64% when he would fall asleep. He

didn't rest at all at the hospital cause he would realize he wasn't breathing

when he fell asleep and he would jump to kick start and he would get all

upset again.They finally gave him a breathing treatment. He was finally

stable enough to come home yesterday afternoon.

The dr had ordered crutches for him but there was no way he could use them so

the nurse said a walker. I told her if he can't use crutches how is he

suppose to use a walker and she said well he still has one good hand. I

almost fell out at that point. I said its dangerous to use a walker with one

hand there would be no balance etc. The nurse case manager came down and she

told them all there was no way he could use crutches or a walker and they got

him a wheelchair. That is working very well.

All 's brothers are being wonderful helping out. Jake won't go to school

until Monday cause he is so worried about . He came to the hospital

yesterday morning and stayed until we left. He said he would not come home

without jesse. He sat glued to the monitor watching 's oxygen sats.

Everytime it got below 90% he would say Mom, get the nurse. I think its

really sweet that Jake is so protective of .

Well is sleeping right now so iam going to take a cat nap while i can.

Oh yeah i forgot. We have to go through putting him to sleep again next week.

The dr said he was going to put him to sleep and put the cast on him. That

should be fun.

I will let you know how he is doing in a couple of days. Ya'll take care.

and

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Hello,

I have not been a member of this group for long but

please know (the way I reply) my prayers are with you

all today for a fast recovery.

Sher

--- 12341234@... wrote:

> Hey everyone,

>

> did well in surgery yesterday. When he woke up

> he had trouble though.

> His blood pressure went up and he was real upset and

> in alot of pain. He not

> once complained about his wrist, which in fact

> didn't have a cyst. The fluid

> had become solid in a way and the dr trimmed that up

> but looks like the wrist

> bone has fused itself. He will always have a lump in

> his wrist. His foot is

> really giving him pain. They gave him 22 ccs of

> moraphine. The gases they

> used to put him to sleep caused him to have trouble

> breathing when he woke

> up. His oxygen sats keep dropping down to 64% when

> he would fall asleep. He

> didn't rest at all at the hospital cause he would

> realize he wasn't breathing

> when he fell asleep and he would jump to kick start

> and he would get all

> upset again.They finally gave him a breathing

> treatment. He was finally

> stable enough to come home yesterday afternoon.

>

> The dr had ordered crutches for him but there was no

> way he could use them so

> the nurse said a walker. I told her if he can't use

> crutches how is he

> suppose to use a walker and she said well he still

> has one good hand. I

> almost fell out at that point. I said its dangerous

> to use a walker with one

> hand there would be no balance etc. The nurse case

> manager came down and she

> told them all there was no way he could use crutches

> or a walker and they got

> him a wheelchair. That is working very well.

>

> All 's brothers are being wonderful helping

> out. Jake won't go to school

> until Monday cause he is so worried about . He

> came to the hospital

> yesterday morning and stayed until we left. He said

> he would not come home

> without jesse. He sat glued to the monitor watching

> 's oxygen sats.

> Everytime it got below 90% he would say Mom, get the

> nurse. I think its

> really sweet that Jake is so protective of .

>

> Well is sleeping right now so iam going to

> take a cat nap while i can.

> Oh yeah i forgot. We have to go through putting him

> to sleep again next week.

> The dr said he was going to put him to sleep and put

> the cast on him. That

> should be fun.

>

> I will let you know how he is doing in a couple of

> days. Ya'll take care.

> and

>

__________________________________________________

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Hi & & a special hug to all those brothers!

Some nurses aren't very bright. I've had my share. The other thing that gets

me about some nurses is they think they know more about your disease than

you do. I like to say, I've had this disease longer than you've been in

school and on duty and could drop my own blood blind folded! It's funny, I

told my Remicade nurse this and she said, " OK. That I could try it. " She

wouldn't let me. I was sad, because I knew I'd surprise her.

Anyway, totally away from what I was gonna talk about. I just want to wish

an easy recovery! He is so lucky to have such great brothers! I still

remember when I was about 19 and had a horrible flare and my hips were so

bad I couldn't walk, sit, lay down, and had to go to the bathroom! My

brother picked me up, deposited me at the bathroom door, and as soon as he

heard me opening the door he was back to take me back to the couch. That's

one of my favorite memories.

Shel, not sure why has to be put to sleep to have a cast put on?

So, , let your brothers carry ya to the bathroom if it's possible. All

the memories you're making now and going to be worth more than gold when you

get older! I promise you that!

~Hugs & Kisses, Kiddo!~

~Rainy Sue

Re: [ ] and surgery

> Hey everyone,

>

> did well in surgery yesterday. When he woke up he had trouble

though.

> His blood pressure went up and he was real upset and in alot of pain. He

not

> once complained about his wrist, which in fact didn't have a cyst. The

fluid

> had become solid in a way and the dr trimmed that up but looks like the

wrist

> bone has fused itself. He will always have a lump in his wrist. His foot

is

> really giving him pain. They gave him 22 ccs of moraphine. The gases they

> used to put him to sleep caused him to have trouble breathing when he woke

> up. His oxygen sats keep dropping down to 64% when he would fall asleep.

He

> didn't rest at all at the hospital cause he would realize he wasn't

breathing

> when he fell asleep and he would jump to kick start and he would get all

> upset again.They finally gave him a breathing treatment. He was finally

> stable enough to come home yesterday afternoon.

>

> The dr had ordered crutches for him but there was no way he could use them

so

> the nurse said a walker. I told her if he can't use crutches how is he

> suppose to use a walker and she said well he still has one good hand. I

> almost fell out at that point. I said its dangerous to use a walker with

one

> hand there would be no balance etc. The nurse case manager came down and

she

> told them all there was no way he could use crutches or a walker and they

got

> him a wheelchair. That is working very well.

>

> All 's brothers are being wonderful helping out. Jake won't go to

school

> until Monday cause he is so worried about . He came to the hospital

> yesterday morning and stayed until we left. He said he would not come home

> without jesse. He sat glued to the monitor watching 's oxygen sats.

> Everytime it got below 90% he would say Mom, get the nurse. I think its

> really sweet that Jake is so protective of .

>

> Well is sleeping right now so iam going to take a cat nap while i

can.

> Oh yeah i forgot. We have to go through putting him to sleep again next

week.

> The dr said he was going to put him to sleep and put the cast on him. That

> should be fun.

>

> I will let you know how he is doing in a couple of days. Ya'll take care.

> and

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Hi ,

Hope is feeling better by now. He sure did have a rough time of it.

Hope you and the kids can enjoy the holidays with the surgery behind you.

I will keep praying for .

Lynn

----------

> From: 12341234@...

>

> Subject: Re: [ ] and surgery

> Date: Friday, December 07, 2001 9:49 AM

>

> Hey everyone,

>

> did well in surgery yesterday. When he woke up he had trouble

though.

> His blood pressure went up and he was real upset and in alot of pain. He

not

> once complained about his wrist, which in fact didn't have a cyst. The

fluid

> had become solid in a way and the dr trimmed that up but looks like the

wrist

> bone has fused itself. He will always have a lump in his wrist. His foot

is

> really giving him pain. They gave him 22 ccs of moraphine. The gases they

> used to put him to sleep caused him to have trouble breathing when he

woke

> up. His oxygen sats keep dropping down to 64% when he would fall asleep.

He

> didn't rest at all at the hospital cause he would realize he wasn't

breathing

> when he fell asleep and he would jump to kick start and he would get all

> upset again.They finally gave him a breathing treatment. He was finally

> stable enough to come home yesterday afternoon.

>

> The dr had ordered crutches for him but there was no way he could use

them so

> the nurse said a walker. I told her if he can't use crutches how is he

> suppose to use a walker and she said well he still has one good hand. I

> almost fell out at that point. I said its dangerous to use a walker with

one

> hand there would be no balance etc. The nurse case manager came down and

she

> told them all there was no way he could use crutches or a walker and they

got

> him a wheelchair. That is working very well.

>

> All 's brothers are being wonderful helping out. Jake won't go to

school

> until Monday cause he is so worried about . He came to the hospital

> yesterday morning and stayed until we left. He said he would not come

home

> without jesse. He sat glued to the monitor watching 's oxygen sats.

> Everytime it got below 90% he would say Mom, get the nurse. I think its

> really sweet that Jake is so protective of .

>

> Well is sleeping right now so iam going to take a cat nap while i

can.

> Oh yeah i forgot. We have to go through putting him to sleep again next

week.

> The dr said he was going to put him to sleep and put the cast on him.

That

> should be fun.

>

> I will let you know how he is doing in a couple of days. Ya'll take care.

> and

>

>

>

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Sher,

Thank you for your post. i try to read all the post even if idon't post. i

usually have lot's going on with jesse and his 4 brothers. You have joined a

great group and i look forward to getting to know you.

I will fill you and all the new members in on who we are. is my 12 year

old son who was dx when he was 4 with JRA and with related lung disease at 6.

We live in alabama and have finally found the most wonderful RA dr. We have

had some good luck in the past 2 years. When i first joined this group

could barely move and now he is more active then he has ever been thanks to

his RA dr. takes a list of meds that i can't even remember without

looking and Enbrel is one of them. The enbrel has been 's ticket to

freedom and a real childhood. just had surgery on his left foot. He was

born with a club foot and had surgery at 10 months old but the JRA has caused

the bones to move so we had it straightend out and toe bones fused. They were

causing a bone to protrude the outside of his foot and that would be very

painful. He also had surgery on the left wrist at the same time. They thought

it was a cyst but turned out to be joint fluid that had harden up so they

trimmed that away and he should have a bit more range of motion. the wrist

has started to fuse itself as well.

also has an older brother who is almost 15 and 3 younger

brothers, 11, 7 and 5. We are a close family. My boyfriend

lives here with us and between him and the kids have talked me into trying

for a little girl.

My ex husband lives in FL and we are great friends and he tries real hard to

be here when ever the boys need him.

Gee, i can't think about anything else right now only cause my brain is like

mush. Not sleeping to well cause i worry about jesse. I know there is lots

more but i just can't think.

is doing well right now. He goes the 14th back to the or for a cast on

his foot. Hopefully no trouble this time.

take care,

and

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Sue,

They told me cause he has so much pain and such they rather put him under in

a twilght sleep so as not to cause him more pain. I think i like that idea.

He sure can't handle anymore right now. I can tell you this even though he is

doing good, he sure is moody and if he keeps it up he and I are gonna go

round and round. I guess it's his age. He was moody even before surgery.

PUBERTY. Just a couple months before he is 13. YEAH!!!!!!!!!!

love ya,

shelly and jesse

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Hi ,

Hope is feeling better? He sure has been through a lot. I'm okay,

eating is still a problem plus the fatigue. I get through it though. Just

have to push myself. I wish I had known about the eating problems.

Couldn't changed anything but it would have been nice to be ready for it.

I knew there would be some problems but I thought that was corrected with a

low fat diet, that is just the beginning. But I know me and I will make it

through all this stuff. Bet you are busy with Christmas. I remember when

my kids were little and Christmas, it was fun.

Hope you and are able to relax a little today,

Lynn

----------

> From: 12341234@...

>

> Subject: Re: [ ] and surgery

> Date: Monday, December 10, 2001 7:29 PM

>

> Thanks Lynn. How are you feeling? I sure hope you are doing good. You

have

> been through so much this past year.

>

> take care,

> and

>

>

>

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Hey everyone,

went and got his cast put on today. He did great after going to the OR.

They gave him a breathing treatment before he went to the OR and after they

put him to sleep they gave him an injection of steroids and one for nausea.

He did great. He goes back to the OR in a month to have the cast removed and

the pin removed. He doesn't know he has the pin in his foot. If he did he

would have a fit. We decided it was best not for him to know right now.

I was reading Sher's post about NO CURE. One of the hardest things I have

ever had to do was to tell Jesee at the age of 4 that there was no cure for

his JRA. At age 12 he understands there isn't one and also understands new

treatments are coming out every year. Now at age 7 wants a cure for

his older brother in the worst way. Lately, at least once a week he will ask

me if still has his disease. He always says he really wants

cured. Iam sure will start the same thing very soon.

and went with us to the hospital today. had conversations

with just about everyone in the waiting room. He ask a man for permission to

talk with his wife while he got ready for his surgery. He also asked if it

was ok to sit next to his wife. The man gave his permission and

proceeded to give the woman his life story. She loved it. At one point I came

out to the waiting room and the man was asking if he had any sisters

and I heard say no but my mom is gonna have a baby in a few weeks and

said with a smile as i walked in the waiting room OH NO SHE'S NOT. The whole

waiting room broke up into laughter. said well some day she is. I

thought it was very cute.

Ok now little one's want to go to cartoonnetwork.com. gotta go.

take care everyone,

and

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,

I'm glad it's over and hope has no problems with the cast or pin.

sounds like a real charm. He probably made that woman so relaxed that

she forget what she was there for.

It must have been very difficult to tell your child that he has an incurable

disease. I pray the future scientific discoveries change this. As so

eloquently said, we can't ever give up hope.

a

On Fri, 14 December 2001, 12341234@... wrote:

>

> <html><body>

>

>

> <tt>

> Hey everyone,<BR>

> <BR>

> went and got his cast put on today. He did great after going to the OR.

<BR>

> They gave him a breathing treatment before he went to the OR and after they

<BR>

> put him to sleep they gave him an injection of steroids and one for nausea.

<BR>

> He did great. He goes back to the OR in a month to have the cast removed and

<BR>

> the pin removed. He doesn't know he has the pin in his foot. If he did he <BR>

> would have a fit. We decided it was best not for him to know right now. <BR>

> <BR>

> I was reading Sher's post about NO CURE. & nbsp; One of the hardest things I

have <BR>

> ever had to do was to tell Jesee at the age of 4 that there was no cure for

<BR>

> his JRA. At age 12 he understands there isn't one and also understands new

<BR>

> treatments are coming out every year. Now at age 7 wants a cure for

<BR>

> his older brother in the worst way. Lately, at least once a week he will ask

<BR>

> me if still has his disease. He always says he really wants <BR>

> cured. Iam sure will start the same thing very soon. <BR>

> <BR>

> and went with us to the hospital today. had conversations

<BR>

> with just about everyone in the waiting room. He ask a man for permission to

<BR>

> talk with his wife while he got ready for his surgery. He also asked if it

<BR>

> was ok to sit next to his wife. The man gave his permission and

<BR>

> proceeded to give the woman his life story. She loved it. At one point I came

<BR>

> out to the waiting room and the man was asking if he had any sisters

<BR>

> and I heard say no but my mom is gonna have a baby in a few weeks and

<BR>

> said with a smile as i walked in the waiting room OH NO SHE'S NOT. & nbsp; The

whole <BR>

> waiting room broke up into laughter. said well some day she is. I <BR>

> thought it was very cute. <BR>

> <BR>

> Ok now little one's want to go to cartoonnetwork.com. gotta go. <BR>

> take care everyone,<BR>

> and <BR>

> </tt>

>

> <br>

>

> <!-- |**|begin egp html banner|**| -->

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> </table>

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> <!-- |**|end egp html banner|**| -->

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>

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Hi Shel and ,

Hi ! I can't believe it's been almost a year and will have another

birthday. Where did the time go? I will keep this short, have lots to do. I

hope you have Happy Holidays! Good idea, poor guy doesn't need anymore pain!

Let him know I am thinking of him! I would almost bet he is asking Santa for

the same thing I am. New joints. Health. :)

All my love, Rainy Sue

Re: [ ] and surgery

> Sue,

>

> They told me cause he has so much pain and such they rather put him under

in

> a twilght sleep so as not to cause him more pain. I think i like that

idea.

> He sure can't handle anymore right now. I can tell you this even though he

is

> doing good, he sure is moody and if he keeps it up he and I are gonna go

> round and round. I guess it's his age. He was moody even before surgery.

> PUBERTY. Just a couple months before he is 13. YEAH!!!!!!!!!!

>

> love ya,

> shelly and jesse

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  • 8 years later...

I would like to apologize. I was sending this out to several people and listed 's Doctors. Sorry about that - I forgot to edit.

Gail

From: Gail <patsmum2000@...>Subject: and surgerynov98moms , infantile scoliosis treatment , "Congenital" <CongenitalScoliosisSupport >Date: Sunday, October 24, 2010, 7:22 PM

Looks like will be having some minor surgery next month. Dr. Crawford looked at her on Friday and sent us to Plastic Surgery. The surgeon, Dr. Billimare, will see if he can pad her attachment site so she doesn't have the "divot" (what I call it anyway) any longer and feel more comfortable. Dr. Crawford didn't want to adjust her Veptr's or anything because right now her shoulder's look level and everything else looks good.

It will be day surgery and I should know tomorrow what date we will go. They mentioned the 2nd which would be great as she doesn't have school that day (Election Day) anyway.

Will keep you informed.

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Good luck to . I hope surgery goes well!

Gail <patsmum2000@...> wrote:

>Looks like will be having some minor surgery next month. Dr. Crawford

looked at her on Friday and sent us to Plastic Surgery. The surgeon, Dr.

Billimare, will see if he can pad her attachment site so she doesn't have the

" divot " (what I call it anyway) any longer and feel more comfortable. Dr.

Crawford didn't want to adjust her Veptr's or anything because right now her

shoulder's look level and everything else looks good.

> 

>It will be day surgery and I should know tomorrow what date we will go. They

mentioned the 2nd which would be great as she doesn't have school that day

(Election Day) anyway.

> 

>Will keep you informed.

>

>

>

>

>

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Good luck to . I hope surgery goes well!

Gail <patsmum2000@...> wrote:

>Looks like will be having some minor surgery next month. Dr. Crawford

looked at her on Friday and sent us to Plastic Surgery. The surgeon, Dr.

Billimare, will see if he can pad her attachment site so she doesn't have the

" divot " (what I call it anyway) any longer and feel more comfortable. Dr.

Crawford didn't want to adjust her Veptr's or anything because right now her

shoulder's look level and everything else looks good.

> 

>It will be day surgery and I should know tomorrow what date we will go. They

mentioned the 2nd which would be great as she doesn't have school that day

(Election Day) anyway.

> 

>Will keep you informed.

>

>

>

>

>

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Gail,We will be thinking about , please keep us posted!Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

>Looks like will be having some minor surgery next month. Dr. Crawford looked at her on Friday and sent us to Plastic Surgery. The surgeon, Dr. Billimare, will see if he can pad her attachment site so she doesn't have the "divot" (what I call it anyway) any longer and feel more comfortable. Dr. Crawford didn't want to adjust her Veptr's or anything because right now her shoulder's look level and everything else looks good.

>

>It will be day surgery and I should know tomorrow what date we will go. They mentioned the 2nd which would be great as she doesn't have school that day (Election Day) anyway.

>

>Will keep you informed.

>

>

>

>

>

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Will be thinking of you and . Keep us posted. Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: Gail <patsmum2000@...>nov98moms ; infantile scoliosis treatment ; Congenital <CongenitalScoliosisSupport >Sent: Sun, October 24, 2010 6:22:57 PMSubject: and surgery

Looks like will be having some minor surgery next month. Dr. Crawford looked at her on Friday and sent us to Plastic Surgery. The surgeon, Dr. Billimare, will see if he can pad her attachment site so she doesn't have the "divot" (what I call it anyway) any longer and feel more comfortable. Dr. Crawford didn't want to adjust her Veptr's or anything because right now her shoulder's look level and everything else looks good.

It will be day surgery and I should know tomorrow what date we will go. They mentioned the 2nd which would be great as she doesn't have school that day (Election Day) anyway.

Will keep you informed.

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Share on other sites

Please keep us informed. Im glad they consider this minor and

is considered Day surgery. Please give us the date when you got it!

Love,

HRH

From:

infantile scoliosis treatment

[mailto:infantile scoliosis treatment ] On Behalf Of Gail

Sent: Sunday, October 24, 2010 5:23 PM

nov98moms ; infantile scoliosis treatment ;

Congenital

Subject: and surgery

Looks like will be having some minor surgery next

month. Dr. Crawford looked at her on Friday and sent us to Plastic Surgery.

The surgeon, Dr. Billimare, will see if he can pad her attachment site so she

doesn't have the " divot " (what I call it anyway) any longer and

feel more comfortable. Dr. Crawford didn't want to adjust her Veptr's or

anything because right now her shoulder's look level and everything else

looks good.

It will be day surgery and I should know tomorrow what

date we will go. They mentioned the 2nd which would be great as she doesn't

have school that day (Election Day) anyway.

Will keep you informed.

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