Re: Surgery at 14 months old, 2nd surgery scheduled for April (20 months old)

March 14, 2004

Hadley,

I am so glad that your son is doing well. To be totally frank, I

was somewhat shocked to read your post - I had no idea that doctors

were still performing surgery to correct positional plagiocephaly.

I know that surgery is the only option available after the baby is

24 months old, but even then, I haven't heard of any parents

electing to do so, although I'm sure some must. The DOCband, for

instance, and depending on the situation, may be used up to 24

months of age. We have a lot of older babies who received good

correction from active bands such as the Starband or DOCband at

advanced ages, as evidenced by the photos in the Before and After

Photos section, including one who started the band at 19.5 months of

age. Your post was very informative and detailed, and I read it

with great interest.

Did your son ever have any x-rays, etc. to rule out

craniosynostosis, where there is premature fusing of one or more of

the sutures? The plagiocephalic shaped skull can also be caused by

cranio, which we know requires surgery for treatment

www.cappskids.com . Many of our babies that are eventually

diagnosed with positional plagiocephaly (no premature fusing of any

sutures), have to rule out craniosynostosis through x-rays or

whatever, because the head shapes for the two conditions can appear

similar. That is one reason I could think of that would make two

helmets not work at all, since fused sutures would make the skull

resistant to remolding. I'm sure you did, but I have to ask, did

your doctors discuss this term with you, and rule it out with your

son? What type/name of helmet did you try with your son? Again,

I'm really surprised to read that he did start using the first of

two helmets at 4 months, which is very young, and at the youngest

end of the age for starting helmet treatment, and yet he received no

correction.... how distressing. Am I to understand that you elected

surgical correction when Bo was about 14 months old? During your

decision process and discussion with the doctors, were you made

aware, or did you research other banding options, which could be

effective on a baby your son's age at that time?

I agree that positional plagiocephaly is not a cosmetic condition.

Although no studies exist that document the psychological effect of

plagio, emerging studies are beginning to show that plagio can

increase the risk of visual field development, auditory processing

disorders, sleep apnea, astigmatism, learning problems, etc. We

have collected a large amount of studies on the subject of

plagiocephaly in the LINKS section, PLAGIO STUDIES AND RESEARCH

folder.

Again, I am very, very happy to read that your son is doing well.

To be perfectly candid, I am stunned that in the absence of

craniosynostosis, doctors recommended cranial vault surgery prior to

14 months of age for positional plagiocephaly, when active bands

such as the Starband (18 months) and DOCband (24 months) can yield

results in older babies. I know that your son and family have been

through so much already, and my heart and support go out to all of

you for his upcoming surgery. Thank you for sharing your treatment

story, and if you have time, I would be very interested in hearing

any answers or comments about my questions.

Take care,

Christie (Mom to Aggressively Repositioned Remy)

--- In Plagiocephaly , " Hadley " <mcgregorfamily@c...>

wrote:

> Hi everyone,

>

> My name is Hadley and my son is Bo. Bo is 19 months old. He went

> through two helmets, starting at 4 months old. They caught it

early,

> but it didn't make a difference. The helmets did not improve his

> head shape very much at all.

>

> The plastic surgeon & neurosurgeon in Atlanta, who have followed

him

> since the beginning, strongly suggested that we get the Cranial

Vault

> Reconstruction Surgery. I know that some may not choose to do this

> because they consider it cosmetic. But, the same thing can be said

> about a cleft lip (actually what one surgeon in Philadelphia said

to

> us). They also said that surgery shouldn't be performed after the

> age of 2 or 2 1/2.

>

> The surgeons strongly believe in the psychological damage that can

be

> done if this abnormal shape of the skull is not corrected. My son's

> head was rated as moderately severe. The flatness is on his back

> left side. He also had frontal bossing on the right side of his

> forehead. I was just so worried that one day he would come to me

and

> say, " Mommy, why didn't you help me by fixing this when you had the

> chance? " I just didn't want to risk the emotional & psychological

> damage that comes along with teasing and feeling inadequate as a

> child and teenager.

>

> Although I fully understand why some parents choose to not do this

> surgery. It is emotionally taxing to see your child like this and

> the worries that go along with any surgery are always there. It was

> just the right thing for us to do in our son's situation. I read

> everything I could get my hands on prior to making the decision,

> stories from parents who chose to do it, parents who chose to not

do

> it and grown adults that never had it done as a child. I also

looked

> at photos from other children's surgeries. I will post my son's

> photos in the file section so those making this decision will have

> something to reference.

>

> The first surgery was to take care of the frontal bossing on his

> forehead. The surgery has to be done in two parts. First the front

> was done on October 31, 2003. The second is scheduled for April

2004.

>

> The surgery went smoothly, although it is very difficult to see

your

> child in this type of situation, even if you know it is for the

best

> in the long run. The surgery last about 4-5 hours. After it was

> over he was taken to the Pediatric Intensive Care Unit for one

> night. After the night in PICU, he was transferred the next

> afternoon to a regular hospital room on the neuro floor.

>

> For the moms out there going through this surgery - my advice is to

> not stay awake the entire first night like I did. The nurses,

> doctors & my husband all urged me to try to sleep some, but I

didn't

> listen and stayed by his bedside the entire night without sleeping

at

> all. It is was just so hard to see him in the bandage with all of

> the tubes everywhere. They are on morphine so they sleep almost the

> entire time, but will moan and whimper every so often, which is

what

> kept me from wanting to leave his side. I was so exhausted the

and

> you really need your sleep if you can get any. In the PICU they

> have " sleep rooms " so you can go there and switch off with your

> husband every few hours.

>

> The hardest part of the surgery is the swelling. Bo's eyes were

> swollen shut for the first 3 days. It is very upsetting for them

> because they don't know what is going on and can't see at all. He

> would get extremely scared everytime the door would open to the

room,

> so we asked all friends & family to not come by the hospital.

>

> We kept up with them by website updates to my son's free page on

> www.tlcontact.com . This is a great service and all of your friends

> & family will thank you for using it. You can update them as much

as

> you want, with written accounts of what is going on and by adding

> photos. It was a life saver also because I set the website up (very

> simple to do) while my son was in surgery. They had a computer set

> up in the PICU waiting room w/ internet access. This allowed me to

> keep busy during the surgery so I wouldn't be pacing the halls the

> entire time. Just make sure you take your friend's email addresses

> to the hospital with you. We were supposed to wait in the surgery

> waiting area, but a friend who's daughter had been there before

told

> us to request the PICU waiting room. The surgeons thought that was

a

> great idea and said they would have one of the nurses call that

> waiting room instead with our hourly updates during the surgery.

>

> The surgery was at ish Rite Hospital in Atlanta, Georgia

> www.choa.org . Our surgeons were Dr. Reisner (neurosurgeon)

> and Dr. ph K. (plastic/craniofacial surgeon). They are

> excellent and have the best bedside manner - to the point that you

> wonder how they can actually be doctors (ha ha)! They both have

> children and are very involved with their patients. They took care

> of my husband and myself just as well. They are very caring and

> always want to make sure that you are well informed and feel

> comfortable about everything 100% of the time. Both of them are

very

> special to us. Having surgeons that are excellent in their work &

> also easy to talk to with great bedside manners is very very very

> important. You are trusting these guys with the most precious thing

> in your life. Be sure they are the ones to handle such an enormous

> task.

>

> Shop around if you have to, and even fly out of state if needed. We

> actually live in Rehoboth Beach, Delaware. We just moved here from

> Atlanta last year. We took my son to surgeons in Philadelphia (1.5

> hours from our house), some that are world renown, considered " the

> best " in their field. But, they just seemed very robotic and just

> didn't make me feel comfortable. They answered my questions, but it

> was just the way they did it. I felt as if my child was just

another

> number to them and that not only did they need to be good at the

> actual task, but that it was important that we felt we could talk

to

> them and ask anything.

>

> The Atlanta surgeons we ended up choosing gave us their cell phone

> numbers at home to call day or night if we had concerns or needed

to

> talk while our son was in the hospital post-op. They came by each

> morning personally to check on him in the hospital - even on their

> days off, instead of letting their partner " on call " attend to us.

> That is what we were looking for, just the right combination.

>

> My son was on morphine the entire hosptial stay, so I don't think

his

> pain was too bad. I slept in the bed with him every night (he

> started out in a crib, but we requested a regular hospital bed &

they

> brought one and put the rails up on the side. This works great b/c

> you can lay there with them and it is very comforting to them when

> they can't see yet because of the swelling. We also took his

> favorite blankets from home & stuffed animals. Don't wash them

> before you go though, to keep the familiar " home " scent on them. We

> also took the little music box w/ the ocean noise that my son

listens

> to every night while he falls asleep. Anything like that will help

> to comfort them when their eyes are swollen shut and all they can

do

> is smell, feel and hear. We also took his favorite music cd's and

> videos. We played the videos after one of his eyes opened and he

was

> so thrilled to see something familiar like that.

>

> He was in the hosptial for 5 days. Once at home, he did have some

> problems sleeping at night and was pretty clingy for about 3 months

> afterward. But that is to be expected.

>

> The material they used in the surgery was resorbable/dissolvable

> plates & screws. It is amazing, they completely dissolve in 1 year.

> These are fairly new and have a great track record so far. No metal

> hardware sitting inside your head for the rest of your life! The

> stitches also dissolve about 6-10 weeks later.

>

> My son goes back for his 2nd surgery in Atlanta during the month of

> April. I will be glad once this is all over. It has been hard to

> put him through this, but in the long run I think he will thank us

> for it. The time actually flies by and before you know it the

> surgery is over and they recover so fast. My son was running

around

> the Mc House where we stayed after the surgery before

> flying home. He was playing and being his usual self with only

one

> eye open and the other one still swollen shut. This was just 5

days

> after the surgery. I was amazed at how fast he bounced back.

>

> Feel free to email me with questions or reply to this message on

the

> group, I know how hard it is to make this decision and go through

> this as a parent.

>

> Hadley

March 14, 2004

Hi Hadley,

Welcome to the group. Your son will be in my prayers. Please let us

know how everything goes on the 20th. What type of helmet was Bo in?

Was your orthotist experienced in treating plagio babies?

Does/did Bo have craniosynostosis? I checked out his Bo's pictures,

he is adorable. Thanks for sharing.

--- In Plagiocephaly , " Hadley " <mcgregorfamily@c...>

wrote:

> Hi everyone,

>

> My name is Hadley and my son is Bo. Bo is 19 months old. He went

> through two helmets, starting at 4 months old. They caught it

early,

> but it didn't make a difference. The helmets did not improve his

> head shape very much at all.

>

> The plastic surgeon & neurosurgeon in Atlanta, who have followed him

> since the beginning, strongly suggested that we get the Cranial

Vault

> Reconstruction Surgery. I know that some may not choose to do this

> because they consider it cosmetic. But, the same thing can be said

> about a cleft lip (actually what one surgeon in Philadelphia said

to

> us). They also said that surgery shouldn't be performed after the

> age of 2 or 2 1/2.

>

> The surgeons strongly believe in the psychological damage that can

be

> done if this abnormal shape of the skull is not corrected. My son's

> head was rated as moderately severe. The flatness is on his back

> left side. He also had frontal bossing on the right side of his

> forehead. I was just so worried that one day he would come to me and

> say, " Mommy, why didn't you help me by fixing this when you had the

> chance? " I just didn't want to risk the emotional & psychological

> damage that comes along with teasing and feeling inadequate as a

> child and teenager.

>

> Although I fully understand why some parents choose to not do this

> surgery. It is emotionally taxing to see your child like this and

> the worries that go along with any surgery are always there. It was

> just the right thing for us to do in our son's situation. I read

> everything I could get my hands on prior to making the decision,

> stories from parents who chose to do it, parents who chose to not do

> it and grown adults that never had it done as a child. I also looked

> at photos from other children's surgeries. I will post my son's

> photos in the file section so those making this decision will have

> something to reference.

>

> The first surgery was to take care of the frontal bossing on his

> forehead. The surgery has to be done in two parts. First the front

> was done on October 31, 2003. The second is scheduled for April

2004.

>

> The surgery went smoothly, although it is very difficult to see your

> child in this type of situation, even if you know it is for the best

> in the long run. The surgery last about 4-5 hours. After it was

> over he was taken to the Pediatric Intensive Care Unit for one

> night. After the night in PICU, he was transferred the next

> afternoon to a regular hospital room on the neuro floor.

>

> For the moms out there going through this surgery - my advice is to

> not stay awake the entire first night like I did. The nurses,

> doctors & my husband all urged me to try to sleep some, but I didn't

> listen and stayed by his bedside the entire night without sleeping

at

> all. It is was just so hard to see him in the bandage with all of

> the tubes everywhere. They are on morphine so they sleep almost the

> entire time, but will moan and whimper every so often, which is what

> kept me from wanting to leave his side. I was so exhausted the

> you really need your sleep if you can get any. In the PICU they

> have " sleep rooms " so you can go there and switch off with your

> husband every few hours.

>

> The hardest part of the surgery is the swelling. Bo's eyes were

> swollen shut for the first 3 days. It is very upsetting for them

> because they don't know what is going on and can't see at all. He

> would get extremely scared everytime the door would open to the

room,

> so we asked all friends & family to not come by the hospital.

>

> We kept up with them by website updates to my son's free page on

> www.tlcontact.com . This is a great service and all of your friends

> & family will thank you for using it. You can update them as much as

> you want, with written accounts of what is going on and by adding

> photos. It was a life saver also because I set the website up (very

> simple to do) while my son was in surgery. They had a computer set

> up in the PICU waiting room w/ internet access. This allowed me to

> keep busy during the surgery so I wouldn't be pacing the halls the

> entire time. Just make sure you take your friend's email addresses

> to the hospital with you. We were supposed to wait in the surgery

> waiting area, but a friend who's daughter had been there before told

> us to request the PICU waiting room. The surgeons thought that was a

> great idea and said they would have one of the nurses call that

> waiting room instead with our hourly updates during the surgery.

>

> The surgery was at ish Rite Hospital in Atlanta, Georgia

> www.choa.org . Our surgeons were Dr. Reisner (neurosurgeon)

> and Dr. ph K. (plastic/craniofacial surgeon). They are

> excellent and have the best bedside manner - to the point that you

> wonder how they can actually be doctors (ha ha)! They both have

> children and are very involved with their patients. They took care

> of my husband and myself just as well. They are very caring and

> always want to make sure that you are well informed and feel

> comfortable about everything 100% of the time. Both of them are very

> special to us. Having surgeons that are excellent in their work &

> also easy to talk to with great bedside manners is very very very

> important. You are trusting these guys with the most precious thing

> in your life. Be sure they are the ones to handle such an enormous

> task.

>

> Shop around if you have to, and even fly out of state if needed. We

> actually live in Rehoboth Beach, Delaware. We just moved here from

> Atlanta last year. We took my son to surgeons in Philadelphia (1.5

> hours from our house), some that are world renown, considered " the

> best " in their field. But, they just seemed very robotic and just

> didn't make me feel comfortable. They answered my questions, but it

> was just the way they did it. I felt as if my child was just another

> number to them and that not only did they need to be good at the

> actual task, but that it was important that we felt we could talk to

> them and ask anything.

>

> The Atlanta surgeons we ended up choosing gave us their cell phone

> numbers at home to call day or night if we had concerns or needed to

> talk while our son was in the hospital post-op. They came by each

> morning personally to check on him in the hospital - even on their

> days off, instead of letting their partner " on call " attend to us.

> That is what we were looking for, just the right combination.

>

> My son was on morphine the entire hosptial stay, so I don't think

his

> pain was too bad. I slept in the bed with him every night (he

> started out in a crib, but we requested a regular hospital bed &

they

> brought one and put the rails up on the side. This works great b/c

> you can lay there with them and it is very comforting to them when

> they can't see yet because of the swelling. We also took his

> favorite blankets from home & stuffed animals. Don't wash them

> before you go though, to keep the familiar " home " scent on them. We

> also took the little music box w/ the ocean noise that my son

listens

> to every night while he falls asleep. Anything like that will help

> to comfort them when their eyes are swollen shut and all they can do

> is smell, feel and hear. We also took his favorite music cd's and

> videos. We played the videos after one of his eyes opened and he was

> so thrilled to see something familiar like that.

>

> He was in the hosptial for 5 days. Once at home, he did have some

> problems sleeping at night and was pretty clingy for about 3 months

> afterward. But that is to be expected.

>

> The material they used in the surgery was resorbable/dissolvable

> plates & screws. It is amazing, they completely dissolve in 1 year.

> These are fairly new and have a great track record so far. No metal

> hardware sitting inside your head for the rest of your life! The

> stitches also dissolve about 6-10 weeks later.

>

> My son goes back for his 2nd surgery in Atlanta during the month of

> April. I will be glad once this is all over. It has been hard to

> put him through this, but in the long run I think he will thank us

> for it. The time actually flies by and before you know it the

> surgery is over and they recover so fast. My son was running

around

> the Mc House where we stayed after the surgery before

> flying home. He was playing and being his usual self with only one

> eye open and the other one still swollen shut. This was just 5

days

> after the surgery. I was amazed at how fast he bounced back.

>

> Feel free to email me with questions or reply to this message on the

> group, I know how hard it is to make this decision and go through

> this as a parent.

>

> Hadley

March 15, 2004

,

Bo was in a StarBand through the Orthotics department at Children's

Healthcare of Atlanta (ish Rite Hospital) www.choa.org . The

orthotists there were very experienced w/ plagio babies and were

wonderful with us. They did everything they could and followed Bo's

progress very closely. He went through two helmets because he grew

out of the first one.

The surgeons say this does happen sometimes and unfortunately it

results in the need for surgery. Because Bo started the first helmet

(which we named " Ralph " - made me actually feel better to say " ralph "

instead of " helmet " or " band " )so early at 4 months of age, he really

had one of the best chances for correction of his head shape.

It is strange, but Bo does not have Craniosynostosis. His sutures

are open. He has had 4 CT scans from 4 months old to 17 months old.

The only theory we have heard thus far to explain this, is from a

geneticist who said he probably has a Craniofacial syndrome. The

problem, I think, is that all the craniofacial syndromes I read about

have the bones being " fused " as their primary symptom.

So, we have no idea what to think. We will probably never know.

I hope others will still go to CHOA in Atlanta after reading my

post. They are truly wonderful and see a high volume of plagio

babies. After researching, I went with them because they were one of

the most experienced centers in the United States. Bo was just a

rare case.

Also, the process they use for scanning is superior to the Cranial

Tech process. At the time, they told us that Cranial Tech uses a

mold to get the shape for the helmet.

At CHOA, they use the StarBand, and lay the child on this little

piece of equipment which scans their skull shape and only takes about

3 seconds. So in 3 seconds they have the info on your child's head

without upsetting them or making them uncomfortable. This is used to

make the helmet. They also use this scanner to check the children

every few weeks.

At each check up they gave us a computer printout of Bo's head shape

showing how much it had or hadn't grown since the last check up &

since the first initial scan.

If my next child had plagio, I would take him to the people at CHOA.

They are top-notch, do everything possible to help them and are

terrific about educating the parents.

Thanks for the prayers and your reply,

Hadley

> > Hi everyone,

> >

> > My name is Hadley and my son is Bo. Bo is 19 months old. He went

> > through two helmets, starting at 4 months old. They caught it

> early,

> > but it didn't make a difference. The helmets did not improve his

> > head shape very much at all.

> >

> > The plastic surgeon & neurosurgeon in Atlanta, who have followed

him

> > since the beginning, strongly suggested that we get the Cranial

> Vault

> > Reconstruction Surgery. I know that some may not choose to do this

> > because they consider it cosmetic. But, the same thing can be said

> > about a cleft lip (actually what one surgeon in Philadelphia said

> to

> > us). They also said that surgery shouldn't be performed after

the

> > age of 2 or 2 1/2.

> >

> > The surgeons strongly believe in the psychological damage that

can

> be

> > done if this abnormal shape of the skull is not corrected. My

son's

> > head was rated as moderately severe. The flatness is on his back

> > left side. He also had frontal bossing on the right side of his

> > forehead. I was just so worried that one day he would come to me

and

> > say, " Mommy, why didn't you help me by fixing this when you had

the

> > chance? " I just didn't want to risk the emotional & psychological

> > damage that comes along with teasing and feeling inadequate as a

> > child and teenager.

> >

> > Although I fully understand why some parents choose to not do this

> > surgery. It is emotionally taxing to see your child like this and

> > the worries that go along with any surgery are always there. It

was

> > just the right thing for us to do in our son's situation. I read

> > everything I could get my hands on prior to making the decision,

> > stories from parents who chose to do it, parents who chose to not

do

> > it and grown adults that never had it done as a child. I also

looked

> > at photos from other children's surgeries. I will post my son's

> > photos in the file section so those making this decision will have

> > something to reference.

> >

> > The first surgery was to take care of the frontal bossing on his

> > forehead. The surgery has to be done in two parts. First the front

> > was done on October 31, 2003. The second is scheduled for April

> 2004.

> >

> > The surgery went smoothly, although it is very difficult to see

your

> > child in this type of situation, even if you know it is for the

best

> > in the long run. The surgery last about 4-5 hours. After it was

> > over he was taken to the Pediatric Intensive Care Unit for one

> > night. After the night in PICU, he was transferred the next

> > afternoon to a regular hospital room on the neuro floor.

> >

> > For the moms out there going through this surgery - my advice is

to

> > not stay awake the entire first night like I did. The nurses,

> > doctors & my husband all urged me to try to sleep some, but I

didn't

> > listen and stayed by his bedside the entire night without

sleeping

> at

> > all. It is was just so hard to see him in the bandage with all of

> > the tubes everywhere. They are on morphine so they sleep almost

the

> > entire time, but will moan and whimper every so often, which is

what

> > kept me from wanting to leave his side. I was so exhausted the

> next

> > day I could barely hold it together. This is an emotional time

and

> > you really need your sleep if you can get any. In the PICU they

> > have " sleep rooms " so you can go there and switch off with your

> > husband every few hours.

> >

> > The hardest part of the surgery is the swelling. Bo's eyes were

> > swollen shut for the first 3 days. It is very upsetting for them

> > because they don't know what is going on and can't see at all. He

> > would get extremely scared everytime the door would open to the

> room,

> > so we asked all friends & family to not come by the hospital.

> >

> > We kept up with them by website updates to my son's free page on

> > www.tlcontact.com . This is a great service and all of your

friends

> > & family will thank you for using it. You can update them as much

as

> > you want, with written accounts of what is going on and by adding

> > photos. It was a life saver also because I set the website up

(very

> > simple to do) while my son was in surgery. They had a computer set

> > up in the PICU waiting room w/ internet access. This allowed me to

> > keep busy during the surgery so I wouldn't be pacing the halls the

> > entire time. Just make sure you take your friend's email addresses

> > to the hospital with you. We were supposed to wait in the surgery

> > waiting area, but a friend who's daughter had been there before

told

> > us to request the PICU waiting room. The surgeons thought that

was a

> > great idea and said they would have one of the nurses call that

> > waiting room instead with our hourly updates during the surgery.

> >

> > The surgery was at ish Rite Hospital in Atlanta, Georgia

> > www.choa.org . Our surgeons were Dr. Reisner (neurosurgeon)

> > and Dr. ph K. (plastic/craniofacial surgeon). They

are

> > excellent and have the best bedside manner - to the point that you

> > wonder how they can actually be doctors (ha ha)! They both have

> > children and are very involved with their patients. They took care

> > of my husband and myself just as well. They are very caring and

> > always want to make sure that you are well informed and feel

> > comfortable about everything 100% of the time. Both of them are

very

> > special to us. Having surgeons that are excellent in their work &

> > also easy to talk to with great bedside manners is very very very

> > important. You are trusting these guys with the most precious

thing

> > in your life. Be sure they are the ones to handle such an enormous

> > task.

> >

> > Shop around if you have to, and even fly out of state if needed.

We

> > actually live in Rehoboth Beach, Delaware. We just moved here from

> > Atlanta last year. We took my son to surgeons in Philadelphia (1.5

> > hours from our house), some that are world renown, considered " the

> > best " in their field. But, they just seemed very robotic and just

> > didn't make me feel comfortable. They answered my questions, but

it

> > was just the way they did it. I felt as if my child was just

another

> > number to them and that not only did they need to be good at the

> > actual task, but that it was important that we felt we could talk

to

> > them and ask anything.

> >

> > The Atlanta surgeons we ended up choosing gave us their cell phone

> > numbers at home to call day or night if we had concerns or needed

to

> > talk while our son was in the hospital post-op. They came by each

> > morning personally to check on him in the hospital - even on their

> > days off, instead of letting their partner " on call " attend to us.

> > That is what we were looking for, just the right combination.

> >

> > My son was on morphine the entire hosptial stay, so I don't think

> his

> > pain was too bad. I slept in the bed with him every night (he

> > started out in a crib, but we requested a regular hospital bed &

> they

> > brought one and put the rails up on the side. This works great b/c

> > you can lay there with them and it is very comforting to them when

> > they can't see yet because of the swelling. We also took his

> > favorite blankets from home & stuffed animals. Don't wash them

> > before you go though, to keep the familiar " home " scent on them.

We

> > also took the little music box w/ the ocean noise that my son

> listens

> > to every night while he falls asleep. Anything like that will help

> > to comfort them when their eyes are swollen shut and all they can

do

> > is smell, feel and hear. We also took his favorite music cd's and

> > videos. We played the videos after one of his eyes opened and he

was

> > so thrilled to see something familiar like that.

> >

> > He was in the hosptial for 5 days. Once at home, he did have some

> > problems sleeping at night and was pretty clingy for about 3

months

> > afterward. But that is to be expected.

> >

> > The material they used in the surgery was resorbable/dissolvable

> > plates & screws. It is amazing, they completely dissolve in 1

year.

> > These are fairly new and have a great track record so far. No

metal

> > hardware sitting inside your head for the rest of your life! The

> > stitches also dissolve about 6-10 weeks later.

> >

> > My son goes back for his 2nd surgery in Atlanta during the month

of

> > April. I will be glad once this is all over. It has been hard to

> > put him through this, but in the long run I think he will thank us

> > for it. The time actually flies by and before you know it the

> > surgery is over and they recover so fast. My son was running

> around

> > the Mc House where we stayed after the surgery

before

> > flying home. He was playing and being his usual self with only

one

> > eye open and the other one still swollen shut. This was just 5

> days

> > after the surgery. I was amazed at how fast he bounced back.

> >

> > Feel free to email me with questions or reply to this message on

the

> > group, I know how hard it is to make this decision and go through

> > this as a parent.

> >

> > Hadley

March 15, 2004

Christie,

Hi and thanks for your reply. Bo does not have Craniosynostosis. He

has had 4 CT scans & 1 MRI since he was 4 months old. He has also

had a skeletal survey which is when they take individual x-rays of

your entire body.

Bo has strabismus (his eyes cross) and chronic ear infections. Like

you said, this may or may not cause more vision problems, along with

hearing, TMJ issues, etc.

He also is developmentally delayed. He receives speech,

occupational, physical and cognitive therapy several times each week

at Easter Seals. He was diagnosed with moderate to severe Cerebral

Palsy at 5 months of age. They said he would probably never walk. I

have had him in intense therapy since that day, never went back to my

job so I could work with him 1-on-1 everyday and now they say his

diagnosis is Mild Cerebral Palsy. He started walking at 12 months

and is all over the place. He still has low muscle tone and is

completely non-verbal at 19 months. He also has Sensory Integration

Dysfunction. All of this is much more than we ever dreamed of. He

is a little miracle.

His surgeons in Atlanta are two of the best in the country. We also

had 2nd opinions from 2 surgeons at Children's Hospital of

Philadelphia. That place is amazing and is consistently ranked as

the #1 pediatric hospital in the US. The surgeons there agreed with

the Atlanta surgeons.

I am sure that the bands work on a lot of the older plagio babies. I

also know that it is a fact that the skull becomes less able to

correct itself this way as the children age. This is why we have to

get Bo's surgery completed now, the window of time to do so is

closing very soon.

None of Bo's sutures were fused. They were 100% sure and so were we

after 4 CT scans.

Also, in grilling these 4 surgeons with questions (like all moms do

ha ha) I found out that these surgeries on plagio kids aren't as rare

as we all think. They even gave me families to contact who had been

through the same surgery for the same reason. I got to see photos

and read the stories written from the parents. Just like you I was

so surprised to hear this. But this was coming from 4 very well

known pediatric neurosurgeons & pediatric craniofacial plastic

surgeons who use the latest techniques including the resorbable

plates & screws with great success. Trust me, they know their stuff.

They saw a pattern with Bo and I am so glad they intervened with the

idea for surgery. I would have hated to band him up to 24 months and

then find out he never improved and the window of time had closed for

the surgery. I even asked the doctors about the banding option until

24 months and they said that the chances were extremely slim. They

said the cases where this is successful, is when the flattening is

more mild and also when there has been a pattern of improvement

throughout the child's banding process. Bo's head was rated

moderately severe.

I know that there aren't a lot of studies to show the psychological

damage done to kids with abnormal shaped heads. I really went with

common sense on this one though. And I wasn't going to wait 20 years

until all the " Bo's " grow up, participate in these case studies and

then the researchers agree that all the teasing crushes their self

esteem & damages them psychologically. We all know how cruel

children can be. All of us remember the kids that were pursued

relentlessly by bullies at school who wouldn't let up on them because

of a physical feature that they couldn't help. If this happened to

Bo, it would be too late and I couldn't help him. If he were

overweight and they teased him, then I would change his diet and get

him exercising, not suggest a gastric bypass. In this case though,

we were really left with only one option. I had to think, " what

would " Bo the teenager " or " Bo the adult " want me to do for him? It

was hard, but I had to get past seeing him as just a toddler (hard

for a mom, we want them to stay this little forever!). I just see it

as they can't make decisions for themselves right now. We have to

make decisions for them that will affect them today and tomorrow.

On the internet, there are stories from teenagers and young adults

who say it did affect them in this way. That also had a lot to do

with my decision.

In reading, I did find that there are many parents of kids with

Craniosynostosis that go through the same thing. Lots of these kids

have Cranio that isn't causing Intracranial Pressure. This puts them

in the same category as us. They don't have to do it for the purpose

of saving their child's life, and they are left with the same options

as us. The surgery Bo had is actually the exact same one that these

cranio kids get - Cranial Vault Reconstruction. I spoke with several

of these moms who had a lot of great advice to share regarding the

surgery.

I also looked into the percentages of kids who have complications

from this surgery. It is very very very rare and practically unheard

of. This surgery, although it is not fun to go through, is very

safe. The recovery rate is super fast as well. To go through a

surgery and be out of the hospital in 3-5 days is amazing.

So I hope I have answered some questions, please feel free to ask

more as they pop up! I hope I didn't rush too much, my husband keeps

reminding me that The Sopranos is about to come on and I'm going to

miss it - lol.

Hadley

> > Hi everyone,

> >

> > My name is Hadley and my son is Bo. Bo is 19 months old. He went

> > through two helmets, starting at 4 months old. They caught it

> early,

> > but it didn't make a difference. The helmets did not improve his

> > head shape very much at all.

> >

> > The plastic surgeon & neurosurgeon in Atlanta, who have followed

> him

> > since the beginning, strongly suggested that we get the Cranial

> Vault

> > Reconstruction Surgery. I know that some may not choose to do this

> > because they consider it cosmetic. But, the same thing can be said

> > about a cleft lip (actually what one surgeon in Philadelphia said

> to

> > us). They also said that surgery shouldn't be performed after

the

> > age of 2 or 2 1/2.

> >

> > The surgeons strongly believe in the psychological damage that

can

> be

> > done if this abnormal shape of the skull is not corrected. My

son's

> > head was rated as moderately severe. The flatness is on his back

> > left side. He also had frontal bossing on the right side of his

> > forehead. I was just so worried that one day he would come to me

> and

> > say, " Mommy, why didn't you help me by fixing this when you had

the

> > chance? " I just didn't want to risk the emotional & psychological

> > damage that comes along with teasing and feeling inadequate as a

> > child and teenager.

> >

> > Although I fully understand why some parents choose to not do this

> > surgery. It is emotionally taxing to see your child like this and

> > the worries that go along with any surgery are always there. It

was

> > just the right thing for us to do in our son's situation. I read

> > everything I could get my hands on prior to making the decision,

> > stories from parents who chose to do it, parents who chose to not

> do

> > it and grown adults that never had it done as a child. I also

> looked

> > at photos from other children's surgeries. I will post my son's

> > photos in the file section so those making this decision will have

> > something to reference.

> >

> > The first surgery was to take care of the frontal bossing on his

> > forehead. The surgery has to be done in two parts. First the front

> > was done on October 31, 2003. The second is scheduled for April

> 2004.

> >

> > The surgery went smoothly, although it is very difficult to see

> your

> > child in this type of situation, even if you know it is for the

> best

> > in the long run. The surgery last about 4-5 hours. After it was

> > over he was taken to the Pediatric Intensive Care Unit for one

> > night. After the night in PICU, he was transferred the next

> > afternoon to a regular hospital room on the neuro floor.

> >

> > For the moms out there going through this surgery - my advice is

to

> > not stay awake the entire first night like I did. The nurses,

> > doctors & my husband all urged me to try to sleep some, but I

> didn't

> > listen and stayed by his bedside the entire night without

sleeping

> at

> > all. It is was just so hard to see him in the bandage with all of

> > the tubes everywhere. They are on morphine so they sleep almost

the

> > entire time, but will moan and whimper every so often, which is

> what

> > kept me from wanting to leave his side. I was so exhausted the

> next

> > day I could barely hold it together. This is an emotional time

> and

> > you really need your sleep if you can get any. In the PICU they

> > have " sleep rooms " so you can go there and switch off with your

> > husband every few hours.

> >

> > The hardest part of the surgery is the swelling. Bo's eyes were

> > swollen shut for the first 3 days. It is very upsetting for them

> > because they don't know what is going on and can't see at all. He

> > would get extremely scared everytime the door would open to the

> room,

> > so we asked all friends & family to not come by the hospital.

> >

> > We kept up with them by website updates to my son's free page on

> > www.tlcontact.com . This is a great service and all of your

friends

> > & family will thank you for using it. You can update them as much

> as

> > you want, with written accounts of what is going on and by adding

> > photos. It was a life saver also because I set the website up

(very

> > simple to do) while my son was in surgery. They had a computer set

> > up in the PICU waiting room w/ internet access. This allowed me to

> > keep busy during the surgery so I wouldn't be pacing the halls the

> > entire time. Just make sure you take your friend's email addresses

> > to the hospital with you. We were supposed to wait in the surgery

> > waiting area, but a friend who's daughter had been there before

> told

> > us to request the PICU waiting room. The surgeons thought that

was

> a

> > great idea and said they would have one of the nurses call that

> > waiting room instead with our hourly updates during the surgery.

> >

> > The surgery was at ish Rite Hospital in Atlanta, Georgia

> > www.choa.org . Our surgeons were Dr. Reisner (neurosurgeon)

> > and Dr. ph K. (plastic/craniofacial surgeon). They

are

> > excellent and have the best bedside manner - to the point that you

> > wonder how they can actually be doctors (ha ha)! They both have

> > children and are very involved with their patients. They took care

> > of my husband and myself just as well. They are very caring and

> > always want to make sure that you are well informed and feel

> > comfortable about everything 100% of the time. Both of them are

> very

> > special to us. Having surgeons that are excellent in their work &

> > also easy to talk to with great bedside manners is very very very

> > important. You are trusting these guys with the most precious

thing

> > in your life. Be sure they are the ones to handle such an enormous

> > task.

> >

> > Shop around if you have to, and even fly out of state if needed.

We

> > actually live in Rehoboth Beach, Delaware. We just moved here from

> > Atlanta last year. We took my son to surgeons in Philadelphia (1.5

> > hours from our house), some that are world renown, considered " the

> > best " in their field. But, they just seemed very robotic and just

> > didn't make me feel comfortable. They answered my questions, but

it

> > was just the way they did it. I felt as if my child was just

> another

> > number to them and that not only did they need to be good at the

> > actual task, but that it was important that we felt we could talk

> to

> > them and ask anything.

> >

> > The Atlanta surgeons we ended up choosing gave us their cell phone

> > numbers at home to call day or night if we had concerns or needed

> to

> > talk while our son was in the hospital post-op. They came by each

> > morning personally to check on him in the hospital - even on their

> > days off, instead of letting their partner " on call " attend to us.

> > That is what we were looking for, just the right combination.

> >

> > My son was on morphine the entire hosptial stay, so I don't think

> his

> > pain was too bad. I slept in the bed with him every night (he

> > started out in a crib, but we requested a regular hospital bed &

> they

> > brought one and put the rails up on the side. This works great b/c

> > you can lay there with them and it is very comforting to them when

> > they can't see yet because of the swelling. We also took his

> > favorite blankets from home & stuffed animals. Don't wash them

> > before you go though, to keep the familiar " home " scent on them.

We

> > also took the little music box w/ the ocean noise that my son

> listens

> > to every night while he falls asleep. Anything like that will help

> > to comfort them when their eyes are swollen shut and all they can

> do

> > is smell, feel and hear. We also took his favorite music cd's and

> > videos. We played the videos after one of his eyes opened and he

> was

> > so thrilled to see something familiar like that.

> >

> > He was in the hosptial for 5 days. Once at home, he did have some

> > problems sleeping at night and was pretty clingy for about 3

months

> > afterward. But that is to be expected.

> >

> > The material they used in the surgery was resorbable/dissolvable

> > plates & screws. It is amazing, they completely dissolve in 1

year.

> > These are fairly new and have a great track record so far. No

metal

> > hardware sitting inside your head for the rest of your life! The

> > stitches also dissolve about 6-10 weeks later.

> >

> > My son goes back for his 2nd surgery in Atlanta during the month

of

> > April. I will be glad once this is all over. It has been hard to

> > put him through this, but in the long run I think he will thank us

> > for it. The time actually flies by and before you know it the

> > surgery is over and they recover so fast. My son was running

> around

> > the Mc House where we stayed after the surgery

before

> > flying home. He was playing and being his usual self with only

> one

> > eye open and the other one still swollen shut. This was just 5

> days

> > after the surgery. I was amazed at how fast he bounced back.

> >

> > Feel free to email me with questions or reply to this message on

> the

> > group, I know how hard it is to make this decision and go through

> > this as a parent.

> >

> > Hadley

March 15, 2004

Wow Hadley, you guys sure have been through alot. I had never heard

of helmets not working with sutures open. Did he have any

correction at all? Did his head still grow properly, but just not

change shape? Did you ever get a second opinion on the craniofacial

syndrome diagnoses? Thank you for sharing your story with us and

sorry to ask so many questions! Bo is absolutely adorable. What is

his assymetry like in the back now? From the front he looks

perfect! I hope you'll keep us updated on his progress.

, mom to Hannah, DOCgrad

Cape Cod, Ma

> > > Hi everyone,

> > >

> > > My name is Hadley and my son is Bo. Bo is 19 months old. He

went

> > > through two helmets, starting at 4 months old. They caught it

> > early,

> > > but it didn't make a difference. The helmets did not improve

his

> > > head shape very much at all.

> > >

> > > The plastic surgeon & neurosurgeon in Atlanta, who have

followed

> him

> > > since the beginning, strongly suggested that we get the

Cranial

> > Vault

> > > Reconstruction Surgery. I know that some may not choose to do

this

> > > because they consider it cosmetic. But, the same thing can be

said

> > > about a cleft lip (actually what one surgeon in Philadelphia

said

> > to

> > > us). They also said that surgery shouldn't be performed after

> the

> > > age of 2 or 2 1/2.

> > >

> > > The surgeons strongly believe in the psychological damage that

> can

> > be

> > > done if this abnormal shape of the skull is not corrected. My

> son's

> > > head was rated as moderately severe. The flatness is on his

back

> > > left side. He also had frontal bossing on the right side of his

> > > forehead. I was just so worried that one day he would come to

me

> and

> > > say, " Mommy, why didn't you help me by fixing this when you

had

> the

> > > chance? " I just didn't want to risk the emotional &

psychological

> > > damage that comes along with teasing and feeling inadequate as

a

> > > child and teenager.

> > >

> > > Although I fully understand why some parents choose to not do

this

> > > surgery. It is emotionally taxing to see your child like this

and

> > > the worries that go along with any surgery are always there.

It

> was

> > > just the right thing for us to do in our son's situation. I

read

> > > everything I could get my hands on prior to making the

decision,

> > > stories from parents who chose to do it, parents who chose to

not

> do

> > > it and grown adults that never had it done as a child. I also

> looked

> > > at photos from other children's surgeries. I will post my son's

> > > photos in the file section so those making this decision will

have

> > > something to reference.

> > >

> > > The first surgery was to take care of the frontal bossing on

his

> > > forehead. The surgery has to be done in two parts. First the

front

> > > was done on October 31, 2003. The second is scheduled for

April

> > 2004.

> > >

> > > The surgery went smoothly, although it is very difficult to

see

> your

> > > child in this type of situation, even if you know it is for

the

> best

> > > in the long run. The surgery last about 4-5 hours. After it was

> > > over he was taken to the Pediatric Intensive Care Unit for one

> > > night. After the night in PICU, he was transferred the next

> > > afternoon to a regular hospital room on the neuro floor.

> > >

> > > For the moms out there going through this surgery - my advice

is

> to

> > > not stay awake the entire first night like I did. The nurses,

> > > doctors & my husband all urged me to try to sleep some, but I

> didn't

> > > listen and stayed by his bedside the entire night without

> sleeping

> > at

> > > all. It is was just so hard to see him in the bandage with all

of

> > > the tubes everywhere. They are on morphine so they sleep

almost

> the

> > > entire time, but will moan and whimper every so often, which

is

> what

> > > kept me from wanting to leave his side. I was so exhausted

the

> > next

> > > day I could barely hold it together. This is an emotional

time

> and

> > > you really need your sleep if you can get any. In the PICU

they

> > > have " sleep rooms " so you can go there and switch off with

your

> > > husband every few hours.

> > >

> > > The hardest part of the surgery is the swelling. Bo's eyes were

> > > swollen shut for the first 3 days. It is very upsetting for

them

> > > because they don't know what is going on and can't see at all.

He

> > > would get extremely scared everytime the door would open to

the

> > room,

> > > so we asked all friends & family to not come by the hospital.

> > >

> > > We kept up with them by website updates to my son's free page

on

> > > www.tlcontact.com . This is a great service and all of your

> friends

> > > & family will thank you for using it. You can update them as

much

> as

> > > you want, with written accounts of what is going on and by

adding

> > > photos. It was a life saver also because I set the website up

> (very

> > > simple to do) while my son was in surgery. They had a computer

set

> > > up in the PICU waiting room w/ internet access. This allowed

me to

> > > keep busy during the surgery so I wouldn't be pacing the halls

the

> > > entire time. Just make sure you take your friend's email

addresses

> > > to the hospital with you. We were supposed to wait in the

surgery

> > > waiting area, but a friend who's daughter had been there

before

> told

> > > us to request the PICU waiting room. The surgeons thought that

> was a

> > > great idea and said they would have one of the nurses call that

> > > waiting room instead with our hourly updates during the

surgery.

> > >

> > > The surgery was at ish Rite Hospital in Atlanta, Georgia

> > > www.choa.org . Our surgeons were Dr. Reisner

(neurosurgeon)

> > > and Dr. ph K. (plastic/craniofacial surgeon).

They

> are

> > > excellent and have the best bedside manner - to the point that

you

> > > wonder how they can actually be doctors (ha ha)! They both have

> > > children and are very involved with their patients. They took

care

> > > of my husband and myself just as well. They are very caring and

> > > always want to make sure that you are well informed and feel

> > > comfortable about everything 100% of the time. Both of them

are

> very

> > > special to us. Having surgeons that are excellent in their

work &

> > > also easy to talk to with great bedside manners is very very

very

> > > important. You are trusting these guys with the most precious

> thing

> > > in your life. Be sure they are the ones to handle such an

enormous

> > > task.

> > >

> > > Shop around if you have to, and even fly out of state if

needed.

> We

> > > actually live in Rehoboth Beach, Delaware. We just moved here

from

> > > Atlanta last year. We took my son to surgeons in Philadelphia

(1.5

> > > hours from our house), some that are world renown,

considered " the

> > > best " in their field. But, they just seemed very robotic and

just

> > > didn't make me feel comfortable. They answered my questions,

but

> it

> > > was just the way they did it. I felt as if my child was just

> another

> > > number to them and that not only did they need to be good at

the

> > > actual task, but that it was important that we felt we could

talk

> to

> > > them and ask anything.

> > >

> > > The Atlanta surgeons we ended up choosing gave us their cell

phone

> > > numbers at home to call day or night if we had concerns or

needed

> to

> > > talk while our son was in the hospital post-op. They came by

each

> > > morning personally to check on him in the hospital - even on

their

> > > days off, instead of letting their partner " on call " attend to

us.

> > > That is what we were looking for, just the right combination.

> > >

> > > My son was on morphine the entire hosptial stay, so I don't

think

> > his

> > > pain was too bad. I slept in the bed with him every night (he

> > > started out in a crib, but we requested a regular hospital bed

&

> > they

> > > brought one and put the rails up on the side. This works great

b/c

> > > you can lay there with them and it is very comforting to them

when

> > > they can't see yet because of the swelling. We also took his

> > > favorite blankets from home & stuffed animals. Don't wash them

> > > before you go though, to keep the familiar " home " scent on

them.

> We

> > > also took the little music box w/ the ocean noise that my son

> > listens

> > > to every night while he falls asleep. Anything like that will

help

> > > to comfort them when their eyes are swollen shut and all they

can

> do

> > > is smell, feel and hear. We also took his favorite music cd's

and

> > > videos. We played the videos after one of his eyes opened and

he

> was

> > > so thrilled to see something familiar like that.

> > >

> > > He was in the hosptial for 5 days. Once at home, he did have

some

> > > problems sleeping at night and was pretty clingy for about 3

> months

> > > afterward. But that is to be expected.

> > >

> > > The material they used in the surgery was

resorbable/dissolvable

> > > plates & screws. It is amazing, they completely dissolve in 1

> year.

> > > These are fairly new and have a great track record so far. No

> metal

> > > hardware sitting inside your head for the rest of your life!

The

> > > stitches also dissolve about 6-10 weeks later.

> > >

> > > My son goes back for his 2nd surgery in Atlanta during the

month

> of

> > > April. I will be glad once this is all over. It has been hard

to

> > > put him through this, but in the long run I think he will

thank us

> > > for it. The time actually flies by and before you know it the

> > > surgery is over and they recover so fast. My son was running

> > around

> > > the Mc House where we stayed after the surgery

> before

> > > flying home. He was playing and being his usual self with

only

> one

> > > eye open and the other one still swollen shut. This was just

5

> > days

> > > after the surgery. I was amazed at how fast he bounced back.

> > >

> > > Feel free to email me with questions or reply to this message

on

> the

> > > group, I know how hard it is to make this decision and go

through

> > > this as a parent.

> > >

> > > Hadley

March 15, 2004

Hadley,

Thank you so much for being so patient with all of my questions -

Bo's situation is a new learning for me. I am surprised to learn

that the Starbands provided little improvement, even with the

sutures open! What a relief to find out that the surgery has such

low risks and quick recovery time. Sharing Bo's story and photos

will be invaluable to members joining the group who are facing a

surgical treatment decision.

Would you continue to keep us posted on Bo's progress and upcoming

surgery?

Take care,

Christie (Mom to Repo'd Remy)

> > > Hi everyone,

> > >

> > > My name is Hadley and my son is Bo. Bo is 19 months old. He

went

> > > through two helmets, starting at 4 months old. They caught it

> > early,

> > > but it didn't make a difference. The helmets did not improve

his

> > > head shape very much at all.

> > >

> > > The plastic surgeon & neurosurgeon in Atlanta, who have

followed

> > him

> > > since the beginning, strongly suggested that we get the

Cranial

> > Vault

> > > Reconstruction Surgery. I know that some may not choose to do

this

> > > because they consider it cosmetic. But, the same thing can be

said

> > > about a cleft lip (actually what one surgeon in Philadelphia

said

> > to

> > > us). They also said that surgery shouldn't be performed after

> the

> > > age of 2 or 2 1/2.

> > >

> > > The surgeons strongly believe in the psychological damage that

> can

> > be

> > > done if this abnormal shape of the skull is not corrected. My

> son's

> > > head was rated as moderately severe. The flatness is on his

back

> > > left side. He also had frontal bossing on the right side of his

> > > forehead. I was just so worried that one day he would come to

me

> > and

> > > say, " Mommy, why didn't you help me by fixing this when you

had

> the

> > > chance? " I just didn't want to risk the emotional &

psychological

> > > damage that comes along with teasing and feeling inadequate as

a

> > > child and teenager.

> > >

> > > Although I fully understand why some parents choose to not do

this

> > > surgery. It is emotionally taxing to see your child like this

and

> > > the worries that go along with any surgery are always there.

It

> was

> > > just the right thing for us to do in our son's situation. I

read

> > > everything I could get my hands on prior to making the

decision,

> > > stories from parents who chose to do it, parents who chose to

not

> > do

> > > it and grown adults that never had it done as a child. I also

> > looked

> > > at photos from other children's surgeries. I will post my son's

> > > photos in the file section so those making this decision will

have

> > > something to reference.

> > >

> > > The first surgery was to take care of the frontal bossing on

his

> > > forehead. The surgery has to be done in two parts. First the

front

> > > was done on October 31, 2003. The second is scheduled for

April

> > 2004.

> > >

> > > The surgery went smoothly, although it is very difficult to

see

> > your

> > > child in this type of situation, even if you know it is for

the

> > best

> > > in the long run. The surgery last about 4-5 hours. After it was

> > > over he was taken to the Pediatric Intensive Care Unit for one

> > > night. After the night in PICU, he was transferred the next

> > > afternoon to a regular hospital room on the neuro floor.

> > >

> > > For the moms out there going through this surgery - my advice

is

> to

> > > not stay awake the entire first night like I did. The nurses,

> > > doctors & my husband all urged me to try to sleep some, but I

> > didn't

> > > listen and stayed by his bedside the entire night without

> sleeping

> > at

> > > all. It is was just so hard to see him in the bandage with all

of

> > > the tubes everywhere. They are on morphine so they sleep

almost

> the

> > > entire time, but will moan and whimper every so often, which

is

> > what

> > > kept me from wanting to leave his side. I was so exhausted

the

> > next

> > > day I could barely hold it together. This is an emotional

time

> > and

> > > you really need your sleep if you can get any. In the PICU

they

> > > have " sleep rooms " so you can go there and switch off with

your

> > > husband every few hours.

> > >

> > > The hardest part of the surgery is the swelling. Bo's eyes were

> > > swollen shut for the first 3 days. It is very upsetting for

them

> > > because they don't know what is going on and can't see at all.

He

> > > would get extremely scared everytime the door would open to

the

> > room,

> > > so we asked all friends & family to not come by the hospital.

> > >

> > > We kept up with them by website updates to my son's free page

on

> > > www.tlcontact.com . This is a great service and all of your

> friends

> > > & family will thank you for using it. You can update them as

much

> > as

> > > you want, with written accounts of what is going on and by

adding

> > > photos. It was a life saver also because I set the website up

> (very

> > > simple to do) while my son was in surgery. They had a computer

set

> > > up in the PICU waiting room w/ internet access. This allowed

me to

> > > keep busy during the surgery so I wouldn't be pacing the halls

the

> > > entire time. Just make sure you take your friend's email

addresses

> > > to the hospital with you. We were supposed to wait in the

surgery

> > > waiting area, but a friend who's daughter had been there

before

> > told

> > > us to request the PICU waiting room. The surgeons thought that

> was

> > a

> > > great idea and said they would have one of the nurses call that

> > > waiting room instead with our hourly updates during the

surgery.

> > >

> > > The surgery was at ish Rite Hospital in Atlanta, Georgia

> > > www.choa.org . Our surgeons were Dr. Reisner

(neurosurgeon)

> > > and Dr. ph K. (plastic/craniofacial surgeon).

They

> are

> > > excellent and have the best bedside manner - to the point that

you

> > > wonder how they can actually be doctors (ha ha)! They both have

> > > children and are very involved with their patients. They took

care

> > > of my husband and myself just as well. They are very caring and

> > > always want to make sure that you are well informed and feel

> > > comfortable about everything 100% of the time. Both of them

are

> > very

> > > special to us. Having surgeons that are excellent in their

work &

> > > also easy to talk to with great bedside manners is very very

very

> > > important. You are trusting these guys with the most precious

> thing

> > > in your life. Be sure they are the ones to handle such an

enormous

> > > task.

> > >

> > > Shop around if you have to, and even fly out of state if

needed.

> We

> > > actually live in Rehoboth Beach, Delaware. We just moved here

from

> > > Atlanta last year. We took my son to surgeons in Philadelphia

(1.5

> > > hours from our house), some that are world renown,

considered " the

> > > best " in their field. But, they just seemed very robotic and

just

> > > didn't make me feel comfortable. They answered my questions,

but

> it

> > > was just the way they did it. I felt as if my child was just

> > another

> > > number to them and that not only did they need to be good at

the

> > > actual task, but that it was important that we felt we could

talk

> > to

> > > them and ask anything.

> > >

> > > The Atlanta surgeons we ended up choosing gave us their cell

phone

> > > numbers at home to call day or night if we had concerns or

needed

> > to

> > > talk while our son was in the hospital post-op. They came by

each

> > > morning personally to check on him in the hospital - even on

their

> > > days off, instead of letting their partner " on call " attend to

us.

> > > That is what we were looking for, just the right combination.

> > >

> > > My son was on morphine the entire hosptial stay, so I don't

think

> > his

> > > pain was too bad. I slept in the bed with him every night (he

> > > started out in a crib, but we requested a regular hospital bed

&

> > they

> > > brought one and put the rails up on the side. This works great

b/c

> > > you can lay there with them and it is very comforting to them

when

> > > they can't see yet because of the swelling. We also took his

> > > favorite blankets from home & stuffed animals. Don't wash them

> > > before you go though, to keep the familiar " home " scent on

them.

> We

> > > also took the little music box w/ the ocean noise that my son

> > listens

> > > to every night while he falls asleep. Anything like that will

help

> > > to comfort them when their eyes are swollen shut and all they

can

> > do

> > > is smell, feel and hear. We also took his favorite music cd's

and

> > > videos. We played the videos after one of his eyes opened and

he

> > was

> > > so thrilled to see something familiar like that.

> > >

> > > He was in the hosptial for 5 days. Once at home, he did have

some

> > > problems sleeping at night and was pretty clingy for about 3

> months

> > > afterward. But that is to be expected.

> > >

> > > The material they used in the surgery was

resorbable/dissolvable

> > > plates & screws. It is amazing, they completely dissolve in 1

> year.

> > > These are fairly new and have a great track record so far. No

> metal

> > > hardware sitting inside your head for the rest of your life!

The

> > > stitches also dissolve about 6-10 weeks later.

> > >

> > > My son goes back for his 2nd surgery in Atlanta during the

month

> of

> > > April. I will be glad once this is all over. It has been hard

to

> > > put him through this, but in the long run I think he will

thank us

> > > for it. The time actually flies by and before you know it the

> > > surgery is over and they recover so fast. My son was running

> > around

> > > the Mc House where we stayed after the surgery

> before

> > > flying home. He was playing and being his usual self with

only

> > one

> > > eye open and the other one still swollen shut. This was just

5

> > days

> > > after the surgery. I was amazed at how fast he bounced back.

> > >

> > > Feel free to email me with questions or reply to this message

on

> > the

> > > group, I know how hard it is to make this decision and go

through

> > > this as a parent.

> > >

> > > Hadley

March 15, 2004

Hi ,

His head did grow. It is actually quite large, in the 98th

percentile. His head was growing taller for a while, which they said

was " mild turricephaly " . It seems to have stopped though which is

good, we were really worried when it seemed to get taller all of a

sudden. He also had benign external hydrocephalus, which has

actually resolved itself.

The first CVR surgery was a frontal orbital advancement. It was to

correct the frontal bossing of his forehead. During the surgery,

they also gave him a brow ridge which he really didn't have before.

He was just pretty flat there.

The second CVR surgery will be for the back of his head. The back

was actually more severe than the front, but they say that the front

is more noticable since that is the direction people are usually

looking at you from. They typically do the front first, then the

back second.

The flatness in the back is very obvious. Looking at him in a mirror

is actually pretty shocking. One of his ears is set back further

from the other, so much that if he has to get glasses, they will have

to custom make them so one side is longer than the other. If the

back was not corrected, they said he would probably not be able to

ever wear a football, baseball or bike helmet. They also said that

hats would not fit correctly, so he would be unable to wear those

too. Today, he can't wear a baseball hat because of the back of his

head. It won't stay positioned on his head and is either too tight,

or if it is any bigger, will slide around sideways.

As far as the Craniofacial Syndrome goes, we have had lots of

opinions. The neurosurgeons and the craniofacial surgeons all agree

he probably does have some sort of genetic syndrome, but who knows

which one. We have also seen 3 geneticists. One in Atlanta at CHOA,

one in Philadelphia at CHOP and one in Delaware at AI Dupont. He has

had a lot of genetic testing done since he was 5 months old and still

nothing has come up.

Genetic testing has ended up being another surprise to me. The

geneticists say that 40% of kids tested, who show without a doubt

that they have a genetic syndrome (by distinct physical features),

will not ever show a positive finding on a genetic blood test. One

reason is that it is just not an exact science yet. There are many

kids out there who are given a diagnosis of a syndrome, show all the

clinical signs of having it, but when tested for the syndrome come up

negative.

Another reason is that there are so many thousands of syndromes out

there. There are ones that don't even have a name yet. They don't

have tests for all of them yet. And like I said, even if they do, it

doesn't mean it will show on the test. Angelman's Syndrome and

Syndrome are two good examples of syndromes where there are

kids labeled with the diagnosis, but it didn't show on the test. I

met a mom at Easter Seals last week whose son has a genetic syndrome

that is the first of its kind in the world. There is no name for it

yet of course, and she is just distraught at the idea of not knowing

anything about what is causing his medical issues.

Bo continues to have more genetic testing. It is unreal how many

tests there actually are. When they do the FISH test, they only test

for one individual syndrome at a time. I didn't know this at first

and just told them to test him for everything - they laughed. They

only test for a few syndromes at a time. This testing is very very

expensive so they are careful with how they go about it (getting

insurance to cover it,etc.) Basically it is like finding a needle in

a haystack. This is all stuff that most of you moms luckily won't

have to deal with so I won't bore you with the details. It really is

so frustrating. For instance in November he tested negative on the

FISH test for Syndrome. In April he will have the FISH test

for Angelman's Syndrome. And by the way, these tests take anywhere

from 10 to 18 weeks before you get the results back. It is

ridiculous.

I don't know why there isn't a lot of info out there about the plagio

and cranio kids who don't have intracranial pressure, but who do get

the surgery. Maybe because these companies like Cranial Tech are the

ones supplying a lot of the info.

I do wonder though how the bands are so similar, but StarBand and

others only band to a certain time and Cranial Tech claims they can

successfully band up to 24 months. Are they all really so different,

one far superior to the next? Or are we dealing with Coke & Pepsi,

Nike & Reebok? I wonder what the real statistics are. I mean if

only a small percentage of kids see results at that late of an age,

is it really a fair statement to say it works for older kids? They

are the ones getting more money for more bands. And the later they

set the age at, the more kids can use their helmets and more money

for them $. Meanwhile, there are probably kids who wear the band

until they are 24 months, it doesn't do the job and now it's too late

for the surgery.

It's unfortunate for the kids who have plagio now, but it will

probably be years and years before they figure it all out. Soon they

will probably come out and say that plagio does cause all these

developmental delays, vision and hearing problems, etc. I wonder

what the insurance companies who have denied payment for these bands

will think then? Probably that they saved a lot of money. At the

expense of our kids? Sad that a lot of things come down to money,

especially when it hurts our children.

Okay that was my venting time for corporate america...ha ha.

Hadley

> > > > Hi everyone,

> > > >

> > > > My name is Hadley and my son is Bo. Bo is 19 months old. He

> went

> > > > through two helmets, starting at 4 months old. They caught it

> > > early,

> > > > but it didn't make a difference. The helmets did not improve

> his

> > > > head shape very much at all.

> > > >

> > > > The plastic surgeon & neurosurgeon in Atlanta, who have

> followed

> > him

> > > > since the beginning, strongly suggested that we get the

> Cranial

> > > Vault

> > > > Reconstruction Surgery. I know that some may not choose to do

> this

> > > > because they consider it cosmetic. But, the same thing can be

> said

> > > > about a cleft lip (actually what one surgeon in Philadelphia

> said

> > > to

> > > > us). They also said that surgery shouldn't be performed

after

> > the

> > > > age of 2 or 2 1/2.

> > > >

> > > > The surgeons strongly believe in the psychological damage

that

> > can

> > > be

> > > > done if this abnormal shape of the skull is not corrected. My

> > son's

> > > > head was rated as moderately severe. The flatness is on his

> back

> > > > left side. He also had frontal bossing on the right side of

his

> > > > forehead. I was just so worried that one day he would come to

> me

> > and

> > > > say, " Mommy, why didn't you help me by fixing this when you

> had

> > the

> > > > chance? " I just didn't want to risk the emotional &

> psychological

> > > > damage that comes along with teasing and feeling inadequate

as

> a

> > > > child and teenager.

> > > >

> > > > Although I fully understand why some parents choose to not do

> this

> > > > surgery. It is emotionally taxing to see your child like this

> and

> > > > the worries that go along with any surgery are always there.

> It

> > was

> > > > just the right thing for us to do in our son's situation. I

> read

> > > > everything I could get my hands on prior to making the

> decision,

> > > > stories from parents who chose to do it, parents who chose to

> not

> > do

> > > > it and grown adults that never had it done as a child. I also

> > looked

> > > > at photos from other children's surgeries. I will post my

son's

> > > > photos in the file section so those making this decision will

> have

> > > > something to reference.

> > > >

> > > > The first surgery was to take care of the frontal bossing on

> his

> > > > forehead. The surgery has to be done in two parts. First the

> front

> > > > was done on October 31, 2003. The second is scheduled for

> April

> > > 2004.

> > > >

> > > > The surgery went smoothly, although it is very difficult to

> see

> > your

> > > > child in this type of situation, even if you know it is for

> the

> > best

> > > > in the long run. The surgery last about 4-5 hours. After it

was

> > > > over he was taken to the Pediatric Intensive Care Unit for one

> > > > night. After the night in PICU, he was transferred the next

> > > > afternoon to a regular hospital room on the neuro floor.

> > > >

> > > > For the moms out there going through this surgery - my advice

> is

> > to

> > > > not stay awake the entire first night like I did. The nurses,

> > > > doctors & my husband all urged me to try to sleep some, but I

> > didn't

> > > > listen and stayed by his bedside the entire night without

> > sleeping

> > > at

> > > > all. It is was just so hard to see him in the bandage with

all

> of

> > > > the tubes everywhere. They are on morphine so they sleep

> almost

> > the

> > > > entire time, but will moan and whimper every so often, which

> is

> > what

> > > > kept me from wanting to leave his side. I was so exhausted

> the

> > > next

> > > > day I could barely hold it together. This is an emotional

> time

> > and

> > > > you really need your sleep if you can get any. In the PICU

> they

> > > > have " sleep rooms " so you can go there and switch off with

> your

> > > > husband every few hours.

> > > >

> > > > The hardest part of the surgery is the swelling. Bo's eyes

were

> > > > swollen shut for the first 3 days. It is very upsetting for

> them

> > > > because they don't know what is going on and can't see at

all.

> He

> > > > would get extremely scared everytime the door would open to

> the

> > > room,

> > > > so we asked all friends & family to not come by the hospital.

> > > >

> > > > We kept up with them by website updates to my son's free page

> on

> > > > www.tlcontact.com . This is a great service and all of your

> > friends

> > > > & family will thank you for using it. You can update them as

> much

> > as

> > > > you want, with written accounts of what is going on and by

> adding

> > > > photos. It was a life saver also because I set the website up

> > (very

> > > > simple to do) while my son was in surgery. They had a

computer

> set

> > > > up in the PICU waiting room w/ internet access. This allowed

> me to

> > > > keep busy during the surgery so I wouldn't be pacing the

halls

> the

> > > > entire time. Just make sure you take your friend's email

> addresses

> > > > to the hospital with you. We were supposed to wait in the

> surgery

> > > > waiting area, but a friend who's daughter had been there

> before

> > told

> > > > us to request the PICU waiting room. The surgeons thought

that

> > was a

> > > > great idea and said they would have one of the nurses call

that

> > > > waiting room instead with our hourly updates during the

> surgery.

> > > >

> > > > The surgery was at ish Rite Hospital in Atlanta, Georgia

> > > > www.choa.org . Our surgeons were Dr. Reisner

> (neurosurgeon)

> > > > and Dr. ph K. (plastic/craniofacial surgeon).

> They

> > are

> > > > excellent and have the best bedside manner - to the point

that

> you

> > > > wonder how they can actually be doctors (ha ha)! They both

have

> > > > children and are very involved with their patients. They took

> care

> > > > of my husband and myself just as well. They are very caring

and

> > > > always want to make sure that you are well informed and feel

> > > > comfortable about everything 100% of the time. Both of them

> are

> > very

> > > > special to us. Having surgeons that are excellent in their

> work &

> > > > also easy to talk to with great bedside manners is very very

> very

> > > > important. You are trusting these guys with the most precious

> > thing

> > > > in your life. Be sure they are the ones to handle such an

> enormous

> > > > task.

> > > >

> > > > Shop around if you have to, and even fly out of state if

> needed.

> > We

> > > > actually live in Rehoboth Beach, Delaware. We just moved here

> from

> > > > Atlanta last year. We took my son to surgeons in Philadelphia

> (1.5

> > > > hours from our house), some that are world renown,

> considered " the

> > > > best " in their field. But, they just seemed very robotic and

> just

> > > > didn't make me feel comfortable. They answered my questions,

> but

> > it

> > > > was just the way they did it. I felt as if my child was just

> > another

> > > > number to them and that not only did they need to be good at

> the

> > > > actual task, but that it was important that we felt we could

> talk

> > to

> > > > them and ask anything.

> > > >

> > > > The Atlanta surgeons we ended up choosing gave us their cell

> phone

> > > > numbers at home to call day or night if we had concerns or

> needed

> > to

> > > > talk while our son was in the hospital post-op. They came by

> each

> > > > morning personally to check on him in the hospital - even on

> their

> > > > days off, instead of letting their partner " on call " attend

to

> us.

> > > > That is what we were looking for, just the right combination.

> > > >

> > > > My son was on morphine the entire hosptial stay, so I don't

> think

> > > his

> > > > pain was too bad. I slept in the bed with him every night (he

> > > > started out in a crib, but we requested a regular hospital

bed

> &

> > > they

> > > > brought one and put the rails up on the side. This works

great

> b/c

> > > > you can lay there with them and it is very comforting to them

> when

> > > > they can't see yet because of the swelling. We also took his

> > > > favorite blankets from home & stuffed animals. Don't wash them

> > > > before you go though, to keep the familiar " home " scent on

> them.

> > We

> > > > also took the little music box w/ the ocean noise that my son

> > > listens

> > > > to every night while he falls asleep. Anything like that will

> help

> > > > to comfort them when their eyes are swollen shut and all they

> can

> > do

> > > > is smell, feel and hear. We also took his favorite music cd's

> and

> > > > videos. We played the videos after one of his eyes opened and

> he

> > was

> > > > so thrilled to see something familiar like that.

> > > >

> > > > He was in the hosptial for 5 days. Once at home, he did have

> some

> > > > problems sleeping at night and was pretty clingy for about 3

> > months

> > > > afterward. But that is to be expected.

> > > >

> > > > The material they used in the surgery was

> resorbable/dissolvable

> > > > plates & screws. It is amazing, they completely dissolve in 1

> > year.

> > > > These are fairly new and have a great track record so far. No

> > metal

> > > > hardware sitting inside your head for the rest of your life!

> The

> > > > stitches also dissolve about 6-10 weeks later.

> > > >

> > > > My son goes back for his 2nd surgery in Atlanta during the

> month

> > of

> > > > April. I will be glad once this is all over. It has been hard

> to

> > > > put him through this, but in the long run I think he will

> thank us

> > > > for it. The time actually flies by and before you know it

the

> > > > surgery is over and they recover so fast. My son was running

> > > around

> > > > the Mc House where we stayed after the surgery

> > before

> > > > flying home. He was playing and being his usual self with

> only

> > one

> > > > eye open and the other one still swollen shut. This was just

> 5

> > > days

> > > > after the surgery. I was amazed at how fast he bounced back.

> > > >

> > > > Feel free to email me with questions or reply to this message

> on

> > the

> > > > group, I know how hard it is to make this decision and go

> through

> > > > this as a parent.

> > > >

> > > > Hadley

March 15, 2004

I'll keep you guys updated. I hope I didn't scare everyone. But, I

just want everyone to know the options and that stories like Bo's are

out there and are very real. We weren't talked into this surgery

because we live out in a cornfield somewhere with uninformed

doctors. We aren't parents who just want a kid with a perfect head.

We went to two major metropolitan pediatric hospitals with great

reputations and excellent surgeons who are practicing the latest

techniques. I researched this surgery so much that my husband used

to beg me to go to sleep before 4 am and get off the internet. I

called these doctors so much asking questions, that we actually

became good friends with them. Maybe not their office staff, who

probably cringe when they hear me on the other line! I would fax the

surgeons lists of questions and they would call me back with the

answers to each and every one of them.

We didn't take this lightly, so I have a lot of info to share with

those who end up in the same boat. Don't be afraid to ask, I

certainly never am! So send me an email or post to the board with

any questions you have and I'll be happy to help any moms that I can.

Hadley

> > > > Hi everyone,

> > > >

> > > > My name is Hadley and my son is Bo. Bo is 19 months old. He

> went

> > > > through two helmets, starting at 4 months old. They caught it

> > > early,

> > > > but it didn't make a difference. The helmets did not improve

> his

> > > > head shape very much at all.

> > > >

> > > > The plastic surgeon & neurosurgeon in Atlanta, who have

> followed

> > > him

> > > > since the beginning, strongly suggested that we get the

> Cranial

> > > Vault

> > > > Reconstruction Surgery. I know that some may not choose to do

> this

> > > > because they consider it cosmetic. But, the same thing can be

> said

> > > > about a cleft lip (actually what one surgeon in Philadelphia

> said

> > > to

> > > > us). They also said that surgery shouldn't be performed

after

> > the

> > > > age of 2 or 2 1/2.

> > > >

> > > > The surgeons strongly believe in the psychological damage

that

> > can

> > > be

> > > > done if this abnormal shape of the skull is not corrected. My

> > son's

> > > > head was rated as moderately severe. The flatness is on his

> back

> > > > left side. He also had frontal bossing on the right side of

his

> > > > forehead. I was just so worried that one day he would come to

> me

> > > and

> > > > say, " Mommy, why didn't you help me by fixing this when you

> had

> > the

> > > > chance? " I just didn't want to risk the emotional &

> psychological

> > > > damage that comes along with teasing and feeling inadequate

as

> a

> > > > child and teenager.

> > > >

> > > > Although I fully understand why some parents choose to not do

> this

> > > > surgery. It is emotionally taxing to see your child like this

> and

> > > > the worries that go along with any surgery are always there.

> It

> > was

> > > > just the right thing for us to do in our son's situation. I

> read

> > > > everything I could get my hands on prior to making the

> decision,

> > > > stories from parents who chose to do it, parents who chose to

> not

> > > do

> > > > it and grown adults that never had it done as a child. I also

> > > looked

> > > > at photos from other children's surgeries. I will post my

son's

> > > > photos in the file section so those making this decision will

> have

> > > > something to reference.

> > > >

> > > > The first surgery was to take care of the frontal bossing on

> his

> > > > forehead. The surgery has to be done in two parts. First the

> front

> > > > was done on October 31, 2003. The second is scheduled for

> April

> > > 2004.

> > > >

> > > > The surgery went smoothly, although it is very difficult to

> see

> > > your

> > > > child in this type of situation, even if you know it is for

> the

> > > best

> > > > in the long run. The surgery last about 4-5 hours. After it

was

> > > > over he was taken to the Pediatric Intensive Care Unit for one

> > > > night. After the night in PICU, he was transferred the next

> > > > afternoon to a regular hospital room on the neuro floor.

> > > >

> > > > For the moms out there going through this surgery - my advice

> is

> > to

> > > > not stay awake the entire first night like I did. The nurses,

> > > > doctors & my husband all urged me to try to sleep some, but I

> > > didn't

> > > > listen and stayed by his bedside the entire night without

> > sleeping

> > > at

> > > > all. It is was just so hard to see him in the bandage with

all

> of

> > > > the tubes everywhere. They are on morphine so they sleep

> almost

> > the

> > > > entire time, but will moan and whimper every so often, which

> is

> > > what

> > > > kept me from wanting to leave his side. I was so exhausted

> the

> > > next

> > > > day I could barely hold it together. This is an emotional

> time

> > > and

> > > > you really need your sleep if you can get any. In the PICU

> they

> > > > have " sleep rooms " so you can go there and switch off with

> your

> > > > husband every few hours.

> > > >

> > > > The hardest part of the surgery is the swelling. Bo's eyes

were

> > > > swollen shut for the first 3 days. It is very upsetting for

> them

> > > > because they don't know what is going on and can't see at

all.

> He

> > > > would get extremely scared everytime the door would open to

> the

> > > room,

> > > > so we asked all friends & family to not come by the hospital.

> > > >

> > > > We kept up with them by website updates to my son's free page

> on

> > > > www.tlcontact.com . This is a great service and all of your

> > friends

> > > > & family will thank you for using it. You can update them as

> much

> > > as

> > > > you want, with written accounts of what is going on and by

> adding

> > > > photos. It was a life saver also because I set the website up

> > (very

> > > > simple to do) while my son was in surgery. They had a

computer

> set

> > > > up in the PICU waiting room w/ internet access. This allowed

> me to

> > > > keep busy during the surgery so I wouldn't be pacing the

halls

> the

> > > > entire time. Just make sure you take your friend's email

> addresses

> > > > to the hospital with you. We were supposed to wait in the

> surgery

> > > > waiting area, but a friend who's daughter had been there

> before

> > > told

> > > > us to request the PICU waiting room. The surgeons thought

that

> > was

> > > a

> > > > great idea and said they would have one of the nurses call

that

> > > > waiting room instead with our hourly updates during the

> surgery.

> > > >

> > > > The surgery was at ish Rite Hospital in Atlanta, Georgia

> > > > www.choa.org . Our surgeons were Dr. Reisner

> (neurosurgeon)

> > > > and Dr. ph K. (plastic/craniofacial surgeon).

> They

> > are

> > > > excellent and have the best bedside manner - to the point

that

> you

> > > > wonder how they can actually be doctors (ha ha)! They both

have

> > > > children and are very involved with their patients. They took

> care

> > > > of my husband and myself just as well. They are very caring

and

> > > > always want to make sure that you are well informed and feel

> > > > comfortable about everything 100% of the time. Both of them

> are

> > > very

> > > > special to us. Having surgeons that are excellent in their

> work &

> > > > also easy to talk to with great bedside manners is very very

> very

> > > > important. You are trusting these guys with the most precious

> > thing

> > > > in your life. Be sure they are the ones to handle such an

> enormous

> > > > task.

> > > >

> > > > Shop around if you have to, and even fly out of state if

> needed.

> > We

> > > > actually live in Rehoboth Beach, Delaware. We just moved here

> from

> > > > Atlanta last year. We took my son to surgeons in Philadelphia

> (1.5

> > > > hours from our house), some that are world renown,

> considered " the

> > > > best " in their field. But, they just seemed very robotic and

> just

> > > > didn't make me feel comfortable. They answered my questions,

> but

> > it

> > > > was just the way they did it. I felt as if my child was just

> > > another

> > > > number to them and that not only did they need to be good at

> the

> > > > actual task, but that it was important that we felt we could

> talk

> > > to

> > > > them and ask anything.

> > > >

> > > > The Atlanta surgeons we ended up choosing gave us their cell

> phone

> > > > numbers at home to call day or night if we had concerns or

> needed

> > > to

> > > > talk while our son was in the hospital post-op. They came by

> each

> > > > morning personally to check on him in the hospital - even on

> their

> > > > days off, instead of letting their partner " on call " attend

to

> us.

> > > > That is what we were looking for, just the right combination.

> > > >

> > > > My son was on morphine the entire hosptial stay, so I don't

> think

> > > his

> > > > pain was too bad. I slept in the bed with him every night (he

> > > > started out in a crib, but we requested a regular hospital

bed

> &

> > > they

> > > > brought one and put the rails up on the side. This works

great

> b/c

> > > > you can lay there with them and it is very comforting to them

> when

> > > > they can't see yet because of the swelling. We also took his

> > > > favorite blankets from home & stuffed animals. Don't wash them

> > > > before you go though, to keep the familiar " home " scent on

> them.

> > We

> > > > also took the little music box w/ the ocean noise that my son

> > > listens

> > > > to every night while he falls asleep. Anything like that will

> help

> > > > to comfort them when their eyes are swollen shut and all they

> can

> > > do

> > > > is smell, feel and hear. We also took his favorite music cd's

> and

> > > > videos. We played the videos after one of his eyes opened and

> he

> > > was

> > > > so thrilled to see something familiar like that.

> > > >

> > > > He was in the hosptial for 5 days. Once at home, he did have

> some

> > > > problems sleeping at night and was pretty clingy for about 3

> > months

> > > > afterward. But that is to be expected.

> > > >

> > > > The material they used in the surgery was

> resorbable/dissolvable

> > > > plates & screws. It is amazing, they completely dissolve in 1

> > year.

> > > > These are fairly new and have a great track record so far. No

> > metal

> > > > hardware sitting inside your head for the rest of your life!

> The

> > > > stitches also dissolve about 6-10 weeks later.

> > > >

> > > > My son goes back for his 2nd surgery in Atlanta during the

> month

> > of

> > > > April. I will be glad once this is all over. It has been hard

> to

> > > > put him through this, but in the long run I think he will

> thank us

> > > > for it. The time actually flies by and before you know it

the

> > > > surgery is over and they recover so fast. My son was running

> > > around

> > > > the Mc House where we stayed after the surgery

> > before

> > > > flying home. He was playing and being his usual self with

> only

> > > one

> > > > eye open and the other one still swollen shut. This was just

> 5

> > > days

> > > > after the surgery. I was amazed at how fast he bounced back.

> > > >

> > > > Feel free to email me with questions or reply to this message

> on

> > > the

> > > > group, I know how hard it is to make this decision and go

> through

> > > > this as a parent.

> > > >

> > > > Hadley

March 15, 2004

Hi Hadley and welcome to the group. I have read this thread all

morning and find this very interesting. I would be interested in

seeing Bo's headshape BEFORE surgery, before the STARBand attempts.

If the sutures are open, it amazes me that 2 STARBands did not

correct the shape in anyway. Do you have any pictures of Bo in his

STARBands? Can you post any of these pictures?

Dustie, mom to , DOCGrad'03

Texas

> > > > > Hi everyone,

> > > > >

> > > > > My name is Hadley and my son is Bo. Bo is 19 months old.

He

> > went

> > > > > through two helmets, starting at 4 months old. They caught

it

> > > > early,

> > > > > but it didn't make a difference. The helmets did not

improve

> > his

> > > > > head shape very much at all.

> > > > >

> > > > > The plastic surgeon & neurosurgeon in Atlanta, who have

> > followed

> > > > him

> > > > > since the beginning, strongly suggested that we get the

> > Cranial

> > > > Vault

> > > > > Reconstruction Surgery. I know that some may not choose to

do

> > this

> > > > > because they consider it cosmetic. But, the same thing can

be

> > said

> > > > > about a cleft lip (actually what one surgeon in

Philadelphia

> > said

> > > > to

> > > > > us). They also said that surgery shouldn't be performed

> after

> > > the

> > > > > age of 2 or 2 1/2.

> > > > >

> > > > > The surgeons strongly believe in the psychological damage

> that

> > > can

> > > > be

> > > > > done if this abnormal shape of the skull is not corrected.

My

> > > son's

> > > > > head was rated as moderately severe. The flatness is on

his

> > back

> > > > > left side. He also had frontal bossing on the right side

of

> his

> > > > > forehead. I was just so worried that one day he would come

to

> > me

> > > > and

> > > > > say, " Mommy, why didn't you help me by fixing this when

you

> > had

> > > the

> > > > > chance? " I just didn't want to risk the emotional &

> > psychological

> > > > > damage that comes along with teasing and feeling

inadequate

> as

> > a

> > > > > child and teenager.

> > > > >

> > > > > Although I fully understand why some parents choose to not

do

> > this

> > > > > surgery. It is emotionally taxing to see your child like

this

> > and

> > > > > the worries that go along with any surgery are always

there.

> > It

> > > was

> > > > > just the right thing for us to do in our son's situation.

I

> > read

> > > > > everything I could get my hands on prior to making the

> > decision,

> > > > > stories from parents who chose to do it, parents who chose

to

> > not

> > > > do

> > > > > it and grown adults that never had it done as a child. I

also

> > > > looked

> > > > > at photos from other children's surgeries. I will post my

> son's

> > > > > photos in the file section so those making this decision

will

> > have

> > > > > something to reference.

> > > > >

> > > > > The first surgery was to take care of the frontal bossing

on

> > his

> > > > > forehead. The surgery has to be done in two parts. First

the

> > front

> > > > > was done on October 31, 2003. The second is scheduled for

> > April

> > > > 2004.

> > > > >

> > > > > The surgery went smoothly, although it is very difficult

to

> > see

> > > > your

> > > > > child in this type of situation, even if you know it is

for

> > the

> > > > best

> > > > > in the long run. The surgery last about 4-5 hours. After

it

> was

> > > > > over he was taken to the Pediatric Intensive Care Unit for

one

> > > > > night. After the night in PICU, he was transferred the next

> > > > > afternoon to a regular hospital room on the neuro floor.

> > > > >

> > > > > For the moms out there going through this surgery - my

advice

> > is

> > > to

> > > > > not stay awake the entire first night like I did. The

nurses,

> > > > > doctors & my husband all urged me to try to sleep some,

but I

> > > > didn't

> > > > > listen and stayed by his bedside the entire night without

> > > sleeping

> > > > at

> > > > > all. It is was just so hard to see him in the bandage with

> all

> > of

> > > > > the tubes everywhere. They are on morphine so they sleep

> > almost

> > > the

> > > > > entire time, but will moan and whimper every so often,

which

> > is

> > > > what

> > > > > kept me from wanting to leave his side. I was so

exhausted

> > the

> > > > next

> > > > > day I could barely hold it together. This is an emotional

> > time

> > > > and

> > > > > you really need your sleep if you can get any. In the

PICU

> > they

> > > > > have " sleep rooms " so you can go there and switch off with

> > your

> > > > > husband every few hours.

> > > > >

> > > > > The hardest part of the surgery is the swelling. Bo's eyes

> were

> > > > > swollen shut for the first 3 days. It is very upsetting

for

> > them

> > > > > because they don't know what is going on and can't see at

> all.

> > He

> > > > > would get extremely scared everytime the door would open

to

> > the

> > > > room,

> > > > > so we asked all friends & family to not come by the

hospital.

> > > > >

> > > > > We kept up with them by website updates to my son's free

page

> > on

> > > > > www.tlcontact.com . This is a great service and all of

your

> > > friends

> > > > > & family will thank you for using it. You can update them

as

> > much

> > > > as

> > > > > you want, with written accounts of what is going on and by

> > adding

> > > > > photos. It was a life saver also because I set the website

up

> > > (very

> > > > > simple to do) while my son was in surgery. They had a

> computer

> > set

> > > > > up in the PICU waiting room w/ internet access. This

allowed

> > me to

> > > > > keep busy during the surgery so I wouldn't be pacing the

> halls

> > the

> > > > > entire time. Just make sure you take your friend's email

> > addresses

> > > > > to the hospital with you. We were supposed to wait in the

> > surgery

> > > > > waiting area, but a friend who's daughter had been there

> > before

> > > > told

> > > > > us to request the PICU waiting room. The surgeons thought

> that

> > > was

> > > > a

> > > > > great idea and said they would have one of the nurses call

> that

> > > > > waiting room instead with our hourly updates during the

> > surgery.

> > > > >

> > > > > The surgery was at ish Rite Hospital in Atlanta,

Georgia

> > > > > www.choa.org . Our surgeons were Dr. Reisner

> > (neurosurgeon)

> > > > > and Dr. ph K. (plastic/craniofacial surgeon).

> > They

> > > are

> > > > > excellent and have the best bedside manner - to the point

> that

> > you

> > > > > wonder how they can actually be doctors (ha ha)! They both

> have

> > > > > children and are very involved with their patients. They

took

> > care

> > > > > of my husband and myself just as well. They are very

caring

> and

> > > > > always want to make sure that you are well informed and

feel

> > > > > comfortable about everything 100% of the time. Both of

them

> > are

> > > > very

> > > > > special to us. Having surgeons that are excellent in their

> > work &

> > > > > also easy to talk to with great bedside manners is very

very

> > very

> > > > > important. You are trusting these guys with the most

precious

> > > thing

> > > > > in your life. Be sure they are the ones to handle such an

> > enormous

> > > > > task.

> > > > >

> > > > > Shop around if you have to, and even fly out of state if

> > needed.

> > > We

> > > > > actually live in Rehoboth Beach, Delaware. We just moved

here

> > from

> > > > > Atlanta last year. We took my son to surgeons in

Philadelphia

> > (1.5

> > > > > hours from our house), some that are world renown,

> > considered " the

> > > > > best " in their field. But, they just seemed very robotic

and

> > just

> > > > > didn't make me feel comfortable. They answered my

questions,

> > but

> > > it

> > > > > was just the way they did it. I felt as if my child was

just

> > > > another

> > > > > number to them and that not only did they need to be good

at

> > the

> > > > > actual task, but that it was important that we felt we

could

> > talk

> > > > to

> > > > > them and ask anything.

> > > > >

> > > > > The Atlanta surgeons we ended up choosing gave us their

cell

> > phone

> > > > > numbers at home to call day or night if we had concerns or

> > needed

> > > > to

> > > > > talk while our son was in the hospital post-op. They came

by

> > each

> > > > > morning personally to check on him in the hospital - even

on

> > their

> > > > > days off, instead of letting their partner " on call "

attend

> to

> > us.

> > > > > That is what we were looking for, just the right

combination.

> > > > >

> > > > > My son was on morphine the entire hosptial stay, so I

don't

> > think

> > > > his

> > > > > pain was too bad. I slept in the bed with him every night

(he

> > > > > started out in a crib, but we requested a regular hospital

> bed

> > &

> > > > they

> > > > > brought one and put the rails up on the side. This works

> great

> > b/c

> > > > > you can lay there with them and it is very comforting to

them

> > when

> > > > > they can't see yet because of the swelling. We also took

his

> > > > > favorite blankets from home & stuffed animals. Don't wash

them

> > > > > before you go though, to keep the familiar " home " scent on

> > them.

> > > We

> > > > > also took the little music box w/ the ocean noise that my

son

> > > > listens

> > > > > to every night while he falls asleep. Anything like that

will

> > help

> > > > > to comfort them when their eyes are swollen shut and all

they

> > can

> > > > do

> > > > > is smell, feel and hear. We also took his favorite music

cd's

> > and

> > > > > videos. We played the videos after one of his eyes opened

and

> > he

> > > > was

> > > > > so thrilled to see something familiar like that.

> > > > >

> > > > > He was in the hosptial for 5 days. Once at home, he did

have

> > some

> > > > > problems sleeping at night and was pretty clingy for about

3

> > > months

> > > > > afterward. But that is to be expected.

> > > > >

> > > > > The material they used in the surgery was

> > resorbable/dissolvable

> > > > > plates & screws. It is amazing, they completely dissolve

in 1

> > > year.

> > > > > These are fairly new and have a great track record so far.

No

> > > metal

> > > > > hardware sitting inside your head for the rest of your

life!

> > The

> > > > > stitches also dissolve about 6-10 weeks later.

> > > > >

> > > > > My son goes back for his 2nd surgery in Atlanta during the

> > month

> > > of

> > > > > April. I will be glad once this is all over. It has been

hard

> > to

> > > > > put him through this, but in the long run I think he will

> > thank us

> > > > > for it. The time actually flies by and before you know it

> the

> > > > > surgery is over and they recover so fast. My son was

running

> > > > around

> > > > > the Mc House where we stayed after the

surgery

> > > before

> > > > > flying home. He was playing and being his usual self with

> > only

> > > > one

> > > > > eye open and the other one still swollen shut. This was

just

> > 5

> > > > days

> > > > > after the surgery. I was amazed at how fast he bounced

back.

> > > > >

> > > > > Feel free to email me with questions or reply to this

message

> > on

> > > > the

> > > > > group, I know how hard it is to make this decision and go

> > through

> > > > > this as a parent.

> > > > >

> > > > > Hadley

March 15, 2004

Hi Hadley! I have also read and re-read this thread 2xs this morning

and am also very interested in seeing photos of your son's headshape

before, during and after treatment. My 20-month old twin boys had

very severe brachy and after DOC band treatment still have moderate

to severe brachy headshapes. Not one of our doctors (plastic

surgeons, ped, orthotist, etc) ever recommended surgery. I'd like to

see how your son's headshape compares to theirs. (I have posted pics

of them here in the Photos section that you can see. They are in

the " Nolan & " folder.)

Glad to read your son's first surgery was successful and hoping that

his second is, as well.

mom to Nolan & , DOC band grads

> > > > > > Hi everyone,

> > > > > >

> > > > > > My name is Hadley and my son is Bo. Bo is 19 months old.

> He

> > > went

> > > > > > through two helmets, starting at 4 months old. They

caught

> it

> > > > > early,

> > > > > > but it didn't make a difference. The helmets did not

> improve

> > > his

> > > > > > head shape very much at all.

> > > > > >

> > > > > > The plastic surgeon & neurosurgeon in Atlanta, who have

> > > followed

> > > > > him

> > > > > > since the beginning, strongly suggested that we get the

> > > Cranial

> > > > > Vault

> > > > > > Reconstruction Surgery. I know that some may not choose

to

> do

> > > this

> > > > > > because they consider it cosmetic. But, the same thing

can

> be

> > > said

> > > > > > about a cleft lip (actually what one surgeon in

> Philadelphia

> > > said

> > > > > to

> > > > > > us). They also said that surgery shouldn't be performed

> > after

> > > > the

> > > > > > age of 2 or 2 1/2.

> > > > > >

> > > > > > The surgeons strongly believe in the psychological damage

> > that

> > > > can

> > > > > be

> > > > > > done if this abnormal shape of the skull is not

corrected.

> My

> > > > son's

> > > > > > head was rated as moderately severe. The flatness is on

> his

> > > back

> > > > > > left side. He also had frontal bossing on the right side

> of

> > his

> > > > > > forehead. I was just so worried that one day he would

come

> to

> > > me

> > > > > and

> > > > > > say, " Mommy, why didn't you help me by fixing this when

> you

> > > had

> > > > the

> > > > > > chance? " I just didn't want to risk the emotional &

> > > psychological

> > > > > > damage that comes along with teasing and feeling

> inadequate

> > as

> > > a

> > > > > > child and teenager.

> > > > > >

> > > > > > Although I fully understand why some parents choose to

not

> do

> > > this

> > > > > > surgery. It is emotionally taxing to see your child like

> this

> > > and

> > > > > > the worries that go along with any surgery are always

> there.

> > > It

> > > > was

> > > > > > just the right thing for us to do in our son's situation.

> I

> > > read

> > > > > > everything I could get my hands on prior to making the

> > > decision,

> > > > > > stories from parents who chose to do it, parents who

chose

> to

> > > not

> > > > > do

> > > > > > it and grown adults that never had it done as a child. I

> also

> > > > > looked

> > > > > > at photos from other children's surgeries. I will post my

> > son's

> > > > > > photos in the file section so those making this decision

> will

> > > have

> > > > > > something to reference.

> > > > > >

> > > > > > The first surgery was to take care of the frontal bossing

> on

> > > his

> > > > > > forehead. The surgery has to be done in two parts. First

> the

> > > front

> > > > > > was done on October 31, 2003. The second is scheduled for

> > > April

> > > > > 2004.

> > > > > >

> > > > > > The surgery went smoothly, although it is very difficult

> to

> > > see

> > > > > your

> > > > > > child in this type of situation, even if you know it is

> for

> > > the

> > > > > best

> > > > > > in the long run. The surgery last about 4-5 hours. After

> it

> > was

> > > > > > over he was taken to the Pediatric Intensive Care Unit

for

> one

> > > > > > night. After the night in PICU, he was transferred the

> > > > > >

> > > > > > For the moms out there going through this surgery - my

> advice

> > > is

> > > > to

> > > > > > not stay awake the entire first night like I did. The

> nurses,

> > > > > > doctors & my husband all urged me to try to sleep some,

> but I

> > > > > didn't

> > > > > > listen and stayed by his bedside the entire night without

> > > > sleeping

> > > > > at

> > > > > > all. It is was just so hard to see him in the bandage

with

> > all

> > > of

> > > > > > the tubes everywhere. They are on morphine so they sleep

> > > almost

> > > > the

> > > > > > entire time, but will moan and whimper every so often,

> which

> > > is

> > > > > what

> > > > > > kept me from wanting to leave his side. I was so

> exhausted

> > > the

> > > > > next

> > > > > > day I could barely hold it together. This is an

emotional

> > > time

> > > > > and

> > > > > > you really need your sleep if you can get any. In the

> PICU

> > > they

> > > > > > have " sleep rooms " so you can go there and switch off

with

> > > your

> > > > > > husband every few hours.

> > > > > >

> > > > > > The hardest part of the surgery is the swelling. Bo's

eyes

> > were

> > > > > > swollen shut for the first 3 days. It is very upsetting

> for

> > > them

> > > > > > because they don't know what is going on and can't see at

> > all.

> > > He

> > > > > > would get extremely scared everytime the door would open

> to

> > > the

> > > > > room,

> > > > > > so we asked all friends & family to not come by the

> hospital.

> > > > > >

> > > > > > We kept up with them by website updates to my son's free

> page

> > > on

> > > > > > www.tlcontact.com . This is a great service and all of

> your

> > > > friends

> > > > > > & family will thank you for using it. You can update them

> as

> > > much

> > > > > as

> > > > > > you want, with written accounts of what is going on and

by

> > > adding

> > > > > > photos. It was a life saver also because I set the

website

> up

> > > > (very

> > > > > > simple to do) while my son was in surgery. They had a

> > computer

> > > set

> > > > > > up in the PICU waiting room w/ internet access. This

> allowed

> > > me to

> > > > > > keep busy during the surgery so I wouldn't be pacing the

> > halls

> > > the

> > > > > > entire time. Just make sure you take your friend's email

> > > addresses

> > > > > > to the hospital with you. We were supposed to wait in the

> > > surgery

> > > > > > waiting area, but a friend who's daughter had been there

> > > before

> > > > > told

> > > > > > us to request the PICU waiting room. The surgeons thought

> > that

> > > > was

> > > > > a

> > > > > > great idea and said they would have one of the nurses

call

> > that

> > > > > > waiting room instead with our hourly updates during the

> > > surgery.

> > > > > >

> > > > > > The surgery was at ish Rite Hospital in Atlanta,

> Georgia

> > > > > > www.choa.org . Our surgeons were Dr. Reisner

> > > (neurosurgeon)

> > > > > > and Dr. ph K. (plastic/craniofacial

surgeon).

> > > They

> > > > are

> > > > > > excellent and have the best bedside manner - to the point

> > that

> > > you

> > > > > > wonder how they can actually be doctors (ha ha)! They

both

> > have

> > > > > > children and are very involved with their patients. They

> took

> > > care

> > > > > > of my husband and myself just as well. They are very

> caring

> > and

> > > > > > always want to make sure that you are well informed and

> feel

> > > > > > comfortable about everything 100% of the time. Both of

> them

> > > are

> > > > > very

> > > > > > special to us. Having surgeons that are excellent in

their

> > > work &

> > > > > > also easy to talk to with great bedside manners is very

> very

> > > very

> > > > > > important. You are trusting these guys with the most

> precious

> > > > thing

> > > > > > in your life. Be sure they are the ones to handle such an

> > > enormous

> > > > > > task.

> > > > > >

> > > > > > Shop around if you have to, and even fly out of state if

> > > needed.

> > > > We

> > > > > > actually live in Rehoboth Beach, Delaware. We just moved

> here

> > > from

> > > > > > Atlanta last year. We took my son to surgeons in

> Philadelphia

> > > (1.5

> > > > > > hours from our house), some that are world renown,

> > > considered " the

> > > > > > best " in their field. But, they just seemed very robotic

> and

> > > just

> > > > > > didn't make me feel comfortable. They answered my

> questions,

> > > but

> > > > it

> > > > > > was just the way they did it. I felt as if my child was

> just

> > > > > another

> > > > > > number to them and that not only did they need to be good

> at

> > > the

> > > > > > actual task, but that it was important that we felt we

> could

> > > talk

> > > > > to

> > > > > > them and ask anything.

> > > > > >

> > > > > > The Atlanta surgeons we ended up choosing gave us their

> cell

> > > phone

> > > > > > numbers at home to call day or night if we had concerns

or

> > > needed

> > > > > to

> > > > > > talk while our son was in the hospital post-op. They came

> by

> > > each

> > > > > > morning personally to check on him in the hospital - even

> on

> > > their

> > > > > > days off, instead of letting their partner " on call "

> attend

> > to

> > > us.

> > > > > > That is what we were looking for, just the right

> combination.

> > > > > >

> > > > > > My son was on morphine the entire hosptial stay, so I

> don't

> > > think

> > > > > his

> > > > > > pain was too bad. I slept in the bed with him every night

> (he

> > > > > > started out in a crib, but we requested a regular

hospital

> > bed

> > > &

> > > > > they

> > > > > > brought one and put the rails up on the side. This works

> > great

> > > b/c

> > > > > > you can lay there with them and it is very comforting to

> them

> > > when

> > > > > > they can't see yet because of the swelling. We also took

> his

> > > > > > favorite blankets from home & stuffed animals. Don't wash

> them

> > > > > > before you go though, to keep the familiar " home " scent

on

> > > them.

> > > > We

> > > > > > also took the little music box w/ the ocean noise that my

> son

> > > > > listens

> > > > > > to every night while he falls asleep. Anything like that

> will

> > > help

> > > > > > to comfort them when their eyes are swollen shut and all

> they

> > > can

> > > > > do

> > > > > > is smell, feel and hear. We also took his favorite music

> cd's

> > > and

> > > > > > videos. We played the videos after one of his eyes opened

> and

> > > he

> > > > > was

> > > > > > so thrilled to see something familiar like that.

> > > > > >

> > > > > > He was in the hosptial for 5 days. Once at home, he did

> have

> > > some

> > > > > > problems sleeping at night and was pretty clingy for

about

> 3

> > > > months

> > > > > > afterward. But that is to be expected.

> > > > > >

> > > > > > The material they used in the surgery was

> > > resorbable/dissolvable

> > > > > > plates & screws. It is amazing, they completely dissolve

> in 1

> > > > year.

> > > > > > These are fairly new and have a great track record so

far.

> No

> > > > metal

> > > > > > hardware sitting inside your head for the rest of your

> life!

> > > The

> > > > > > stitches also dissolve about 6-10 weeks later.

> > > > > >

> > > > > > My son goes back for his 2nd surgery in Atlanta during

the

> > > month

> > > > of

> > > > > > April. I will be glad once this is all over. It has been

> hard

> > > to

> > > > > > put him through this, but in the long run I think he will

> > > thank us

> > > > > > for it. The time actually flies by and before you know

it

> > the

> > > > > > surgery is over and they recover so fast. My son was

> running

> > > > > around

> > > > > > the Mc House where we stayed after the

> surgery

> > > > before

> > > > > > flying home. He was playing and being his usual self

with

> > > only

> > > > > one

> > > > > > eye open and the other one still swollen shut. This was

> just

> > > 5

> > > > > days

> > > > > > after the surgery. I was amazed at how fast he bounced

> back.

> > > > > >

> > > > > > Feel free to email me with questions or reply to this

> message

> > > on

> > > > > the

> > > > > > group, I know how hard it is to make this decision and go

> > > through

> > > > > > this as a parent.

> > > > > >

> > > > > > Hadley

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Re: Surgery at 14 months old, 2nd surgery scheduled for April (20 months old)

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