Re: Help - I think I'm a plagio mom and I'm scared!

[Guest guest]

I have been through a very rough time with my son as well. He has a

chromosome anomoly which causes neurological issues. My son is 6

months old, he has been in PICU three times, intubated twice. He

stops breathing. They thought it was apnea, but it isn't. They

don't know what it is. So we deal with him at home when he stops

breathing. We don't know how to treat it. We have physical

therapy, eye therapy twice a week, and his numorous specialists. I

don't have all of the answers to make you feel better, but what

keeps me going is knowing that my son is happy. Everytime I see

that smile, it makes all of the hard work and sacrifice worth it. I

know my son will not be a typical child, but his happiness is all

that matters. We almost lost him several times in his short life,

but he is such a fighter and such a great baby. Anything I can do

to better is life and make him happy is what I am willing to do.

Everything we have gone through is scary and yet we always manage to

get through it. We have strong children and they make us stronger.

Hang in there and you will get through this.

Trudy

>

> Hi - I'm Nikki and our 7 month old son, Chase, is such a little

> trooper. He's our first non-furry child (we have 2 dogs and a

cat)

> and the joy of our lives. He has had such a rocky beginning, but

> you'd never tell from his amazing outgoing personality.

>

> He was a full-term baby (although he was a vacuum birth - he had a

> big old head for my small pelvis). I thought being readmitted for

> jaundice at five days old was horrible, but while he was there,

our

> ped. caught a heart murmur. The jaundice was a blessing in

> disguise. Chase needed closed heart surgery when he was just 12

days

> old for a coarctation (an aortic valve was too narrow). He was

home

> on day 19 and other than repeated visits to our cardiologist, the

> small scar on his back is all that is left of that problem.

>

> At our follow-up after heart surgery at three weeks, our ped.

> detected a fibroid mastiosis coli (torticollis). He's been in PT

> since he was 6 weeks old (every week at first, but every other

week

> since Feb.). I was warned about the DOC band then, but his head

was

> pretty round, so none of us worried too much.

>

> By four months, he had some definite flatness on the right

posterior

> side. Around this time, we also were hospitalized for six days

with

> endocartitis (a bacterial infection of the heart). He came home

with

> a PICC line and I had to administer medicine 2xs a day for 28

days.

> This set us back with the PT and tort and his mild eczema now

turned

> so severe that we needed to see a dermatologist. Once the meds

> stopped, his skin got better (with the help of prescription

> hydrocortisone and Aquaphor, plus daily baths) and his neck once

> again started to improve. He also learned to roll on to his

stomach

> (constant tummy time since he was four weeks old had to help) and

> started to sleep that way.

>

> His flat spot in back is almost gone, but thanks to three months

of

> stomach sleeping and still some major tort issues, he's now

> developing a flat spot on the left side of his forehead. Both our

> ped and PT have referred us to a plastic surgeon (we have an

> appointment in three weeks for a consult). Our wonderful ped. who

> catches everything told me " maybe he won't need a helmet. " As I

just

> smiled at her, she added, " of course, the odds aren't in our

favor,

> but you never know. " This is the doctor I've been dreading since

he

> was six weeks old.

>

> If you saw Chase and didn't know any of the above, you'd think he

was

> the cutest baby ever. Friends, co-workers, church members and

family

> all know most (if not all) of his history, so I am forever giving

> doctor updates to the very thoughtful and concerned masses.

However,

> I'm terrified about the stares and rude questions we'll get if

Chase

> does indeed need a band - you can't hide that like a scar.

>

> My husband's theory is whatever is best for Chase is all that

matters

> (and thankfully until now, insurance has been really good). While

I

> completely agree, I just have days where I feel that enough is

> enough. We've been through so much but a new mom can only take so

> much. I just so want Chase to be like all of the other babies

(he's

> never been in a swing or a bouncy seat). I know all of these

issues

> have made us more appreciative of the little things and we're

blessed

> that he is always in such terrific spirits. I know he'll be fine

> (and my husband, the football coach, already has ideas about

> decorating a cool helmet) - right now, I'm worried about how I

will

> do with it. How do you all do it?

>

> With Mother's Day yesterday, I got a lot of cards and comments

about

> all I've been through and how strong of a person I am, but as we

get

> closer to the plastic surgeon visit - I don't feel strong - I feel

> scared! After a textbook perfect pregnancy (and waiting 34 years

to

> have a baby), I wasn't prepared for any of this. While I've

learned

> to cope, it's still so hard. I'm home (after 12 years of teaching

> 8th graders - this was a huge, but enjoyable, change), so I have

to

> deal with the doctors more than my husband (who goes to visits

when

> he can) and days like today, I just feel so helpless!

>

> Sorry to be so wordy on my first post - but ANY words of wisdom

would

> be so helpful! I wouldn't trade Chase for all of the stars in the

> sky, but something simple like an ear infection would be a nice

> change of pace

>

> Nikki

>

[Guest guest]

Nikki,

You have been through so much. You sound like a very strong mom. I

assure you - this you can handle. Yes it is more noticable than a

scar but really it's not that bad. We hardly got any stares. Both

of my girls have had to wear them. It seems my uterus produces tort

and plagio. We will help you get through this. so where are you

located? We may have some locals. Oh and 7 months is a great age

for treatment.

Big HUGS

na, DOC Grad 2/04

Kiersten, DOC Grad 4/06

www.thefilyaws.com/plagio/plagio.html

>

> Hi - I'm Nikki and our 7 month old son, Chase, is such a little

> trooper. He's our first non-furry child (we have 2 dogs and a

cat)

> and the joy of our lives. He has had such a rocky beginning, but

> you'd never tell from his amazing outgoing personality.

>

> He was a full-term baby (although he was a vacuum birth - he had a

> big old head for my small pelvis). I thought being readmitted for

> jaundice at five days old was horrible, but while he was there,

our

> ped. caught a heart murmur. The jaundice was a blessing in

> disguise. Chase needed closed heart surgery when he was just 12

days

> old for a coarctation (an aortic valve was too narrow). He was

home

> on day 19 and other than repeated visits to our cardiologist, the

> small scar on his back is all that is left of that problem.

>

> At our follow-up after heart surgery at three weeks, our ped.

> detected a fibroid mastiosis coli (torticollis). He's been in PT

> since he was 6 weeks old (every week at first, but every other

week

> since Feb.). I was warned about the DOC band then, but his head

was

> pretty round, so none of us worried too much.

>

> By four months, he had some definite flatness on the right

posterior

> side. Around this time, we also were hospitalized for six days

with

> endocartitis (a bacterial infection of the heart). He came home

with

> a PICC line and I had to administer medicine 2xs a day for 28

days.

> This set us back with the PT and tort and his mild eczema now

turned

> so severe that we needed to see a dermatologist. Once the meds

> stopped, his skin got better (with the help of prescription

> hydrocortisone and Aquaphor, plus daily baths) and his neck once

> again started to improve. He also learned to roll on to his

stomach

> (constant tummy time since he was four weeks old had to help) and

> started to sleep that way.

>

> His flat spot in back is almost gone, but thanks to three months

of

> stomach sleeping and still some major tort issues, he's now

> developing a flat spot on the left side of his forehead. Both our

> ped and PT have referred us to a plastic surgeon (we have an

> appointment in three weeks for a consult). Our wonderful ped. who

> catches everything told me " maybe he won't need a helmet. " As I

just

> smiled at her, she added, " of course, the odds aren't in our

favor,

> but you never know. " This is the doctor I've been dreading since

he

> was six weeks old.

>

> If you saw Chase and didn't know any of the above, you'd think he

was

> the cutest baby ever. Friends, co-workers, church members and

family

> all know most (if not all) of his history, so I am forever giving

> doctor updates to the very thoughtful and concerned masses.

However,

> I'm terrified about the stares and rude questions we'll get if

Chase

> does indeed need a band - you can't hide that like a scar.

>

> My husband's theory is whatever is best for Chase is all that

matters

> (and thankfully until now, insurance has been really good). While

I

> completely agree, I just have days where I feel that enough is

> enough. We've been through so much but a new mom can only take so

> much. I just so want Chase to be like all of the other babies

(he's

> never been in a swing or a bouncy seat). I know all of these

issues

> have made us more appreciative of the little things and we're

blessed

> that he is always in such terrific spirits. I know he'll be fine

> (and my husband, the football coach, already has ideas about

> decorating a cool helmet) - right now, I'm worried about how I

will

> do with it. How do you all do it?

>

> With Mother's Day yesterday, I got a lot of cards and comments

about

> all I've been through and how strong of a person I am, but as we

get

> closer to the plastic surgeon visit - I don't feel strong - I feel

> scared! After a textbook perfect pregnancy (and waiting 34 years

to

> have a baby), I wasn't prepared for any of this. While I've

learned

> to cope, it's still so hard. I'm home (after 12 years of teaching

> 8th graders - this was a huge, but enjoyable, change), so I have

to

> deal with the doctors more than my husband (who goes to visits

when

> he can) and days like today, I just feel so helpless!

>

> Sorry to be so wordy on my first post - but ANY words of wisdom

would

> be so helpful! I wouldn't trade Chase for all of the stars in the

> sky, but something simple like an ear infection would be a nice

> change of pace

>

> Nikki

>

[Guest guest]

Hi Nikki and welcome to the group,

Not only is little Chase a trooper but you and your husband are also troopers ( as cheesy as that sounds ). You guys have been through so much in 7 months. Like you I was SO worried about the stares I would get in public and the rude comments when my daughter got her band, but to my pleasent surprise we haven't had to endure anybody's rudness. We went right from her ortho's office to a craft store to pick out stickers and right away people were still coming up to us saying how cute she was and then asking politly what the band was for. Of course there is those people who will just kind of stare but just remember they are probably too scared to ask you why your son is wearing a band and they probably aren't being rude. Because if you think about it if you saw a baby with a band before you knew what plagio was don't you think you might look at it and be kind of curious? Some people just don't know how to go about asking. My daughter has been in her band since Jan. 31st and the time has just flown by SOOO fast, she will be a STARband graduate by June 6th. From the sounds of it you are a strong woman and if you made it through all that you guys have already been through than you can definately make it through this plagio journey. Stay strong and we are all here to support you please do keep us updated on how things go with the plastic surgeon.

STARband 1/31/06

> >> > Hi - I'm Nikki and our 7 month old son, Chase, is such a little > > trooper. He's our first non-furry child (we have 2 dogs and a > cat) > > and the joy of our lives. He has had such a rocky beginning, but > > you'd never tell from his amazing outgoing personality.> > > > He was a full-term baby (although he was a vacuum birth - he had a > > big old head for my small pelvis). I thought being readmitted for > > jaundice at five days old was horrible, but while he was there, > our > > ped. caught a heart murmur. The jaundice was a blessing in > > disguise. Chase needed closed heart surgery when he was just 12 > days > > old for a coarctation (an aortic valve was too narrow). He was > home > > on day 19 and other than repeated visits to our cardiologist, the > > small scar on his back is all that is left of that problem.> > > > At our follow-up after heart surgery at three weeks, our ped. > > detected a fibroid mastiosis coli (torticollis). He's been in PT > > since he was 6 weeks old (every week at first, but every other > week > > since Feb.). I was warned about the DOC band then, but his head > was > > pretty round, so none of us worried too much.> > > > By four months, he had some definite flatness on the right > posterior > > side. Around this time, we also were hospitalized for six days > with > > endocartitis (a bacterial infection of the heart). He came home > with > > a PICC line and I had to administer medicine 2xs a day for 28 > days. > > This set us back with the PT and tort and his mild eczema now > turned > > so severe that we needed to see a dermatologist. Once the meds > > stopped, his skin got better (with the help of prescription > > hydrocortisone and Aquaphor, plus daily baths) and his neck once > > again started to improve. He also learned to roll on to his > stomach > > (constant tummy time since he was four weeks old had to help) and > > started to sleep that way.> > > > His flat spot in back is almost gone, but thanks to three months > of > > stomach sleeping and still some major tort issues, he's now > > developing a flat spot on the left side of his forehead. Both our > > ped and PT have referred us to a plastic surgeon (we have an > > appointment in three weeks for a consult). Our wonderful ped. who > > catches everything told me "maybe he won't need a helmet." As I > just > > smiled at her, she added, "of course, the odds aren't in our > favor, > > but you never know." This is the doctor I've been dreading since > he > > was six weeks old.> > > > If you saw Chase and didn't know any of the above, you'd think he > was > > the cutest baby ever. Friends, co-workers, church members and > family > > all know most (if not all) of his history, so I am forever giving > > doctor updates to the very thoughtful and concerned masses. > However, > > I'm terrified about the stares and rude questions we'll get if > Chase > > does indeed need a band - you can't hide that like a scar.> > > > My husband's theory is whatever is best for Chase is all that > matters > > (and thankfully until now, insurance has been really good). While > I > > completely agree, I just have days where I feel that enough is > > enough. We've been through so much but a new mom can only take so > > much. I just so want Chase to be like all of the other babies > (he's > > never been in a swing or a bouncy seat). I know all of these > issues > > have made us more appreciative of the little things and we're > blessed > > that he is always in such terrific spirits. I know he'll be fine > > (and my husband, the football coach, already has ideas about > > decorating a cool helmet) - right now, I'm worried about how I > will > > do with it. How do you all do it?> > > > With Mother's Day yesterday, I got a lot of cards and comments > about > > all I've been through and how strong of a person I am, but as we > get > > closer to the plastic surgeon visit - I don't feel strong - I feel > > scared! After a textbook perfect pregnancy (and waiting 34 years > to > > have a baby), I wasn't prepared for any of this. While I've > learned > > to cope, it's still so hard. I'm home (after 12 years of teaching > > 8th graders - this was a huge, but enjoyable, change), so I have > to > > deal with the doctors more than my husband (who goes to visits > when > > he can) and days like today, I just feel so helpless!> > > > Sorry to be so wordy on my first post - but ANY words of wisdom > would > > be so helpful! I wouldn't trade Chase for all of the stars in the > > sky, but something simple like an ear infection would be a nice > > change of pace > > > > Nikki> >>

[Guest guest]

I understand your feelings of " enough already! " . It's totally worth

ot though! I was just sure people would be rude about it, stare at

my baby who was in yet another piece of equipment (Phoebe had hip

dysplasia and had to wear a harness from day one until she was about

two and a half months old). But they haven't been! Most people just

look at her and smile. Not " awww, look at that poor baby " smiles,

real, " what an adorable little girl! " smiles. The few people who

have asked me about it have been very polite, and are genuinely

interested. I felt the exact same way about wanting Phoebe to get to

be a " normal " baby. But now I think that this is like everything

else in my life... I get what seems like a lot of bad for a bit, but

then when the good payoff comes around, the bad was more than worth

it. Phoebe is Ms. personality too. Chase will shine past that

helmet. You didn't fail at making him, he's not failing " normal

baby " class.... it's just another one of those things, and hopefully

the last! *hugs*

>

> Hi - I'm Nikki and our 7 month old son, Chase, is such a little

> trooper. He's our first non-furry child (we have 2 dogs and a

cat)

> and the joy of our lives. He has had such a rocky beginning, but

> you'd never tell from his amazing outgoing personality.

>

> He was a full-term baby (although he was a vacuum birth - he had a

> big old head for my small pelvis). I thought being readmitted for

> jaundice at five days old was horrible, but while he was there,

our

> ped. caught a heart murmur. The jaundice was a blessing in

> disguise. Chase needed closed heart surgery when he was just 12

days

> old for a coarctation (an aortic valve was too narrow). He was

home

> on day 19 and other than repeated visits to our cardiologist, the

> small scar on his back is all that is left of that problem.

>

> At our follow-up after heart surgery at three weeks, our ped.

> detected a fibroid mastiosis coli (torticollis). He's been in PT

> since he was 6 weeks old (every week at first, but every other

week

> since Feb.). I was warned about the DOC band then, but his head

was

> pretty round, so none of us worried too much.

>

> By four months, he had some definite flatness on the right

posterior

> side. Around this time, we also were hospitalized for six days

with

> endocartitis (a bacterial infection of the heart). He came home

with

> a PICC line and I had to administer medicine 2xs a day for 28

days.

> This set us back with the PT and tort and his mild eczema now

turned

> so severe that we needed to see a dermatologist. Once the meds

> stopped, his skin got better (with the help of prescription

> hydrocortisone and Aquaphor, plus daily baths) and his neck once

> again started to improve. He also learned to roll on to his

stomach

> (constant tummy time since he was four weeks old had to help) and

> started to sleep that way.

>

> His flat spot in back is almost gone, but thanks to three months

of

> stomach sleeping and still some major tort issues, he's now

> developing a flat spot on the left side of his forehead. Both our

> ped and PT have referred us to a plastic surgeon (we have an

> appointment in three weeks for a consult). Our wonderful ped. who

> catches everything told me " maybe he won't need a helmet. " As I

just

> smiled at her, she added, " of course, the odds aren't in our

favor,

> but you never know. " This is the doctor I've been dreading since

he

> was six weeks old.

>

> If you saw Chase and didn't know any of the above, you'd think he

was

> the cutest baby ever. Friends, co-workers, church members and

family

> all know most (if not all) of his history, so I am forever giving

> doctor updates to the very thoughtful and concerned masses.

However,

> I'm terrified about the stares and rude questions we'll get if

Chase

> does indeed need a band - you can't hide that like a scar.

>

> My husband's theory is whatever is best for Chase is all that

matters

> (and thankfully until now, insurance has been really good). While

I

> completely agree, I just have days where I feel that enough is

> enough. We've been through so much but a new mom can only take so

> much. I just so want Chase to be like all of the other babies

(he's

> never been in a swing or a bouncy seat). I know all of these

issues

> have made us more appreciative of the little things and we're

blessed

> that he is always in such terrific spirits. I know he'll be fine

> (and my husband, the football coach, already has ideas about

> decorating a cool helmet) - right now, I'm worried about how I

will

> do with it. How do you all do it?

>

> With Mother's Day yesterday, I got a lot of cards and comments

about

> all I've been through and how strong of a person I am, but as we

get

> closer to the plastic surgeon visit - I don't feel strong - I feel

> scared! After a textbook perfect pregnancy (and waiting 34 years

to

> have a baby), I wasn't prepared for any of this. While I've

learned

> to cope, it's still so hard. I'm home (after 12 years of teaching

> 8th graders - this was a huge, but enjoyable, change), so I have

to

> deal with the doctors more than my husband (who goes to visits

when

> he can) and days like today, I just feel so helpless!

>

> Sorry to be so wordy on my first post - but ANY words of wisdom

would

> be so helpful! I wouldn't trade Chase for all of the stars in the

> sky, but something simple like an ear infection would be a nice

> change of pace

>

> Nikki

>

[Guest guest]

Hi Nikki,

You are truly a supermom! You have been through so much already and

I can understand your fears. I felt very similar to you- I didn't

want the stares or rude comments and was so used to everyone telling

me how cute my smiley baby was. You are very lucky your ped. is so

on top of things. I kept asking my ped about Jake's flat spot and he

kept telling me it would round itself out. At 7 months I became

proactive and took him to CT. He got his helmet 2 weeks ago. At

first I wanted to keep him in the stroller all the time and have him

wear a hat! We live in NYC and there are people everywhere. Now I

carry him all the time- no hats! I find that most people ask why he

has it on- one guy thought it was a new trend for babies!!! I rather

people ask than just stare.

He is still the same cute, smiley baby. He has no idea the helmet is

even on and we have seen such improvement in just two weeks. I am so

happy with the decision we made and these few months will go by so

fast and he will have the rest of his life with a great shaped head!

I found this group to be so helpful and supportive- the first 2

nights were rough and I was on the boards all the time. But everyone

here is so nice and we all understand what you are going through.

Good luck and keep us posted!

Tara

Mom to Jake, DOC band 5/1/06

>

> Hi - I'm Nikki and our 7 month old son, Chase, is such a little

> trooper. He's our first non-furry child (we have 2 dogs and a

cat)

> and the joy of our lives. He has had such a rocky beginning, but

> you'd never tell from his amazing outgoing personality.

>

> He was a full-term baby (although he was a vacuum birth - he had a

> big old head for my small pelvis). I thought being readmitted for

> jaundice at five days old was horrible, but while he was there,

our

> ped. caught a heart murmur. The jaundice was a blessing in

> disguise. Chase needed closed heart surgery when he was just 12

days

> old for a coarctation (an aortic valve was too narrow). He was

home

> on day 19 and other than repeated visits to our cardiologist, the

> small scar on his back is all that is left of that problem.

>

> At our follow-up after heart surgery at three weeks, our ped.

> detected a fibroid mastiosis coli (torticollis). He's been in PT

> since he was 6 weeks old (every week at first, but every other

week

> since Feb.). I was warned about the DOC band then, but his head

was

> pretty round, so none of us worried too much.

>

> By four months, he had some definite flatness on the right

posterior

> side. Around this time, we also were hospitalized for six days

with

> endocartitis (a bacterial infection of the heart). He came home

with

> a PICC line and I had to administer medicine 2xs a day for 28

days.

> This set us back with the PT and tort and his mild eczema now

turned

> so severe that we needed to see a dermatologist. Once the meds

> stopped, his skin got better (with the help of prescription

> hydrocortisone and Aquaphor, plus daily baths) and his neck once

> again started to improve. He also learned to roll on to his

stomach

> (constant tummy time since he was four weeks old had to help) and

> started to sleep that way.

>

> His flat spot in back is almost gone, but thanks to three months

of

> stomach sleeping and still some major tort issues, he's now

> developing a flat spot on the left side of his forehead. Both our

> ped and PT have referred us to a plastic surgeon (we have an

> appointment in three weeks for a consult). Our wonderful ped. who

> catches everything told me " maybe he won't need a helmet. " As I

just

> smiled at her, she added, " of course, the odds aren't in our

favor,

> but you never know. " This is the doctor I've been dreading since

he

> was six weeks old.

>

> If you saw Chase and didn't know any of the above, you'd think he

was

> the cutest baby ever. Friends, co-workers, church members and

family

> all know most (if not all) of his history, so I am forever giving

> doctor updates to the very thoughtful and concerned masses.

However,

> I'm terrified about the stares and rude questions we'll get if

Chase

> does indeed need a band - you can't hide that like a scar.

>

> My husband's theory is whatever is best for Chase is all that

matters

> (and thankfully until now, insurance has been really good). While

I

> completely agree, I just have days where I feel that enough is

> enough. We've been through so much but a new mom can only take so

> much. I just so want Chase to be like all of the other babies

(he's

> never been in a swing or a bouncy seat). I know all of these

issues

> have made us more appreciative of the little things and we're

blessed

> that he is always in such terrific spirits. I know he'll be fine

> (and my husband, the football coach, already has ideas about

> decorating a cool helmet) - right now, I'm worried about how I

will

> do with it. How do you all do it?

>

> With Mother's Day yesterday, I got a lot of cards and comments

about

> all I've been through and how strong of a person I am, but as we

get

> closer to the plastic surgeon visit - I don't feel strong - I feel

> scared! After a textbook perfect pregnancy (and waiting 34 years

to

> have a baby), I wasn't prepared for any of this. While I've

learned

> to cope, it's still so hard. I'm home (after 12 years of teaching

> 8th graders - this was a huge, but enjoyable, change), so I have

to

> deal with the doctors more than my husband (who goes to visits

when

> he can) and days like today, I just feel so helpless!

>

> Sorry to be so wordy on my first post - but ANY words of wisdom

would

> be so helpful! I wouldn't trade Chase for all of the stars in the

> sky, but something simple like an ear infection would be a nice

> change of pace

>

> Nikki

>

[Guest guest]

Hi Nikki. Wow u guys have been through so much in such a lil time.

But don't rush just take it step by step. Wait to hear what the

plastic surgeon says before getting upset. I worried for month about

how we where going to pay for my twins bands and how people would

react so much that I started getting sick myself. I was worried like

u that everyone would not think they where so cute with there bands

but actually we get more comments now with the bands. You have came

to the right place for support and questions. I know I always forget

questions when I am at the orthos but can come on here and have them

answered. Rememeber anytime u need to talk to someone just look and

see who is online or post a message. You will make it through this

b/c it sounds like your family is a stong one. Good luck and keep us

posted.

Sunshine, mommie to and Vedder one year old twins, starband

since 2/16/06

>

> Hi - I'm Nikki and our 7 month old son, Chase, is such a little

> trooper. He's our first non-furry child (we have 2 dogs and a cat)

> and the joy of our lives. He has had such a rocky beginning, but

> you'd never tell from his amazing outgoing personality.

>

> He was a full-term baby (although he was a vacuum birth - he had a

> big old head for my small pelvis). I thought being readmitted for

> jaundice at five days old was horrible, but while he was there, our

> ped. caught a heart murmur. The jaundice was a blessing in

> disguise. Chase needed closed heart surgery when he was just 12

days

> old for a coarctation (an aortic valve was too narrow). He was

home

> on day 19 and other than repeated visits to our cardiologist, the

> small scar on his back is all that is left of that problem.

>

> At our follow-up after heart surgery at three weeks, our ped.

> detected a fibroid mastiosis coli (torticollis). He's been in PT

> since he was 6 weeks old (every week at first, but every other week

> since Feb.). I was warned about the DOC band then, but his head

was

> pretty round, so none of us worried too much.

>

> By four months, he had some definite flatness on the right

posterior

> side. Around this time, we also were hospitalized for six days

with

> endocartitis (a bacterial infection of the heart). He came home

with

> a PICC line and I had to administer medicine 2xs a day for 28

days.

> This set us back with the PT and tort and his mild eczema now

turned

> so severe that we needed to see a dermatologist. Once the meds

> stopped, his skin got better (with the help of prescription

> hydrocortisone and Aquaphor, plus daily baths) and his neck once

> again started to improve. He also learned to roll on to his

stomach

> (constant tummy time since he was four weeks old had to help) and

> started to sleep that way.

>

> His flat spot in back is almost gone, but thanks to three months of

> stomach sleeping and still some major tort issues, he's now

> developing a flat spot on the left side of his forehead. Both our

> ped and PT have referred us to a plastic surgeon (we have an

> appointment in three weeks for a consult). Our wonderful ped. who

> catches everything told me " maybe he won't need a helmet. " As I

just

> smiled at her, she added, " of course, the odds aren't in our favor,

> but you never know. " This is the doctor I've been dreading since

he

> was six weeks old.

>

> If you saw Chase and didn't know any of the above, you'd think he

was

> the cutest baby ever. Friends, co-workers, church members and

family

> all know most (if not all) of his history, so I am forever giving

> doctor updates to the very thoughtful and concerned masses.

However,

> I'm terrified about the stares and rude questions we'll get if

Chase

> does indeed need a band - you can't hide that like a scar.

>

> My husband's theory is whatever is best for Chase is all that

matters

> (and thankfully until now, insurance has been really good). While

I

> completely agree, I just have days where I feel that enough is

> enough. We've been through so much but a new mom can only take so

> much. I just so want Chase to be like all of the other babies

(he's

> never been in a swing or a bouncy seat). I know all of these

issues

> have made us more appreciative of the little things and we're

blessed

> that he is always in such terrific spirits. I know he'll be fine

> (and my husband, the football coach, already has ideas about

> decorating a cool helmet) - right now, I'm worried about how I will

> do with it. How do you all do it?

>

> With Mother's Day yesterday, I got a lot of cards and comments

about

> all I've been through and how strong of a person I am, but as we

get

> closer to the plastic surgeon visit - I don't feel strong - I feel

> scared! After a textbook perfect pregnancy (and waiting 34 years

to

> have a baby), I wasn't prepared for any of this. While I've

learned

> to cope, it's still so hard. I'm home (after 12 years of teaching

> 8th graders - this was a huge, but enjoyable, change), so I have to

> deal with the doctors more than my husband (who goes to visits when

> he can) and days like today, I just feel so helpless!

>

> Sorry to be so wordy on my first post - but ANY words of wisdom

would

> be so helpful! I wouldn't trade Chase for all of the stars in the

> sky, but something simple like an ear infection would be a nice

> change of pace

>

> Nikki

>

[Guest guest]

Nikki--I'm sorry for everything your family has been through so far.

I see you've gotten a lot of good answers here already but I just

wanted to post too (which I don't do too often).

both of my sons have needed bands. My first son was a preemie breech

birth who ended up with severe plagio and my 2nd was a full term

birth who ended up with mild to moderate brachy. I remember being

absolutely sick to my stomach anytime I had to take Colin out

thinking people would stare and think he was mentally challenged or

something and honestly I hid him as much as I could in the beginning.

By the end I was parading him through malls and just ignoring all the

stares (most were curious--not full of pity I would like to add).

With my 2nd son I've just gone on with life--never once hiding his

helmet from anyone. I don't think anyone ever asked with our first

what the helmet was for other than the guy who built our house but

with our 2nd I've had several people ask what it's for and more than

I can count come up to me and say " my

son/daughter/neice/nephew/grandson/granddaughter had one of those " .

Just last week we went to an indoor playground and I saw a boy of

around 3 or 4 pointing at my youngest in his helmet and I heard his

dad say " your little brother had a helmet like that didn't he? " That

made me smile that people are beginning to know what they are for.

It will be hard at first but I think it's much easier to have a baby

in a helmet now in 2006 than it was for me in 2004--word has gotten

out more and although there are still a lot of people who have no

idea what they are for there are a lot more than will smile and say

hi and know exactly why your son is in a helmet.

And the time does go quickly--I can't believe my 2nd will be

graduating from his in a few weeks.

Hang in there--I know it's overwhelming but you've got a great

support group here. I only wish I'd found them when my first was in

his helmet.

mom to Colin (local band) banded 5/2004-9/2005 and

(starband) banded 2/2006-6/2006

[Guest guest]

Hi Nikki,

Oh, what a time you've had already! You've been so strong through

everything with Chase...I certainly understand not wanting just one

more thing to go through. But like most of the people who have

responded to your post have said, you CAN do this and it's really

not that bad.

My experience with my son having a STARband has been relatively

easy. We really haven't gotten many stares, and I honestly don't

even notice the band anymore. We decorate it every 2-3 weeks, which

makes it fun and cute and quite personal, and little Noah doesn't

notice the band at all. Like you, I was terrified before Noah got

his band--what would people think? What if it bothered him? Would

it bother me to have this thing on his head all the time? For me,

these fears were unfounded, and it's been just fine. And the time

is really flying by--Noah's been in his band 8 weeks already, so

we're at least halfway done!

Chase will be just as cute as he is now with a band on--maybe even

cuter. Noah has a different theme every 2 weeks to accent his good

looks, and some of them have been just adorable!

Please keep us updated on your progress, and know that there are

alot of moms out here going through the same thing, so you're not

alone. Good luck!

-Amy

mother to Noah, 9 months, STARbanded 3/17/06

>

> Hi - I'm Nikki and our 7 month old son, Chase, is such a little

> trooper. He's our first non-furry child (we have 2 dogs and a

cat)

> and the joy of our lives. He has had such a rocky beginning, but

> you'd never tell from his amazing outgoing personality.

>

> He was a full-term baby (although he was a vacuum birth - he had a

> big old head for my small pelvis). I thought being readmitted for

> jaundice at five days old was horrible, but while he was there,

our

> ped. caught a heart murmur. The jaundice was a blessing in

> disguise. Chase needed closed heart surgery when he was just 12

days

> old for a coarctation (an aortic valve was too narrow). He was

home

> on day 19 and other than repeated visits to our cardiologist, the

> small scar on his back is all that is left of that problem.

>

> At our follow-up after heart surgery at three weeks, our ped.

> detected a fibroid mastiosis coli (torticollis). He's been in PT

> since he was 6 weeks old (every week at first, but every other

week

> since Feb.). I was warned about the DOC band then, but his head

was

> pretty round, so none of us worried too much.

>

> By four months, he had some definite flatness on the right

posterior

> side. Around this time, we also were hospitalized for six days

with

> endocartitis (a bacterial infection of the heart). He came home

with

> a PICC line and I had to administer medicine 2xs a day for 28

days.

> This set us back with the PT and tort and his mild eczema now

turned

> so severe that we needed to see a dermatologist. Once the meds

> stopped, his skin got better (with the help of prescription

> hydrocortisone and Aquaphor, plus daily baths) and his neck once

> again started to improve. He also learned to roll on to his

stomach

> (constant tummy time since he was four weeks old had to help) and

> started to sleep that way.

>

> His flat spot in back is almost gone, but thanks to three months

of

> stomach sleeping and still some major tort issues, he's now

> developing a flat spot on the left side of his forehead. Both our

> ped and PT have referred us to a plastic surgeon (we have an

> appointment in three weeks for a consult). Our wonderful ped. who

> catches everything told me " maybe he won't need a helmet. " As I

just

> smiled at her, she added, " of course, the odds aren't in our

favor,

> but you never know. " This is the doctor I've been dreading since

he

> was six weeks old.

>

> If you saw Chase and didn't know any of the above, you'd think he

was

> the cutest baby ever. Friends, co-workers, church members and

family

> all know most (if not all) of his history, so I am forever giving

> doctor updates to the very thoughtful and concerned masses.

However,

> I'm terrified about the stares and rude questions we'll get if

Chase

> does indeed need a band - you can't hide that like a scar.

>

> My husband's theory is whatever is best for Chase is all that

matters

> (and thankfully until now, insurance has been really good). While

I

> completely agree, I just have days where I feel that enough is

> enough. We've been through so much but a new mom can only take so

> much. I just so want Chase to be like all of the other babies

(he's

> never been in a swing or a bouncy seat). I know all of these

issues

> have made us more appreciative of the little things and we're

blessed

> that he is always in such terrific spirits. I know he'll be fine

> (and my husband, the football coach, already has ideas about

> decorating a cool helmet) - right now, I'm worried about how I

will

> do with it. How do you all do it?

>

> With Mother's Day yesterday, I got a lot of cards and comments

about

> all I've been through and how strong of a person I am, but as we

get

> closer to the plastic surgeon visit - I don't feel strong - I feel

> scared! After a textbook perfect pregnancy (and waiting 34 years

to

> have a baby), I wasn't prepared for any of this. While I've

learned

> to cope, it's still so hard. I'm home (after 12 years of teaching

> 8th graders - this was a huge, but enjoyable, change), so I have

to

> deal with the doctors more than my husband (who goes to visits

when

> he can) and days like today, I just feel so helpless!

>

> Sorry to be so wordy on my first post - but ANY words of wisdom

would

> be so helpful! I wouldn't trade Chase for all of the stars in the

> sky, but something simple like an ear infection would be a nice

> change of pace

>

> Nikki

>

[Guest guest]

Hello Nikki

You may not feel very strong, but I tell you that you are. You have

been through sooo much. Believe me when I say the helmet therapy IF

this is the route you'll go will be a breeze compared to what you've

been through already.

Sandy Willow's Mom

> >

> > Hi - I'm Nikki and our 7 month old son, Chase, is such a little

> > trooper. He's our first non-furry child (we have 2 dogs and a

> cat)

> > and the joy of our lives. He has had such a rocky beginning,

but

> > you'd never tell from his amazing outgoing personality.

> >

> > He was a full-term baby (although he was a vacuum birth - he had

a

> > big old head for my small pelvis). I thought being readmitted

for

> > jaundice at five days old was horrible, but while he was there,

> our

> > ped. caught a heart murmur. The jaundice was a blessing in

> > disguise. Chase needed closed heart surgery when he was just 12

> days

> > old for a coarctation (an aortic valve was too narrow). He was

> home

> > on day 19 and other than repeated visits to our cardiologist,

the

> > small scar on his back is all that is left of that problem.

> >

> > At our follow-up after heart surgery at three weeks, our ped.

> > detected a fibroid mastiosis coli (torticollis). He's been in

PT

> > since he was 6 weeks old (every week at first, but every other

> week

> > since Feb.). I was warned about the DOC band then, but his head

> was

> > pretty round, so none of us worried too much.

> >

> > By four months, he had some definite flatness on the right

> posterior

> > side. Around this time, we also were hospitalized for six days

> with

> > endocartitis (a bacterial infection of the heart). He came home

> with

> > a PICC line and I had to administer medicine 2xs a day for 28

> days.

> > This set us back with the PT and tort and his mild eczema now

> turned

> > so severe that we needed to see a dermatologist. Once the meds

> > stopped, his skin got better (with the help of prescription

> > hydrocortisone and Aquaphor, plus daily baths) and his neck once

> > again started to improve. He also learned to roll on to his

> stomach

> > (constant tummy time since he was four weeks old had to help)

and

> > started to sleep that way.

> >

> > His flat spot in back is almost gone, but thanks to three months

> of

> > stomach sleeping and still some major tort issues, he's now

> > developing a flat spot on the left side of his forehead. Both

our

> > ped and PT have referred us to a plastic surgeon (we have an

> > appointment in three weeks for a consult). Our wonderful ped.

who

> > catches everything told me " maybe he won't need a helmet. " As I

> just

> > smiled at her, she added, " of course, the odds aren't in our

> favor,

> > but you never know. " This is the doctor I've been dreading

since

> he

> > was six weeks old.

> >

> > If you saw Chase and didn't know any of the above, you'd think

he

> was

> > the cutest baby ever. Friends, co-workers, church members and

> family

> > all know most (if not all) of his history, so I am forever

giving

> > doctor updates to the very thoughtful and concerned masses.

> However,

> > I'm terrified about the stares and rude questions we'll get if

> Chase

> > does indeed need a band - you can't hide that like a scar.

> >

> > My husband's theory is whatever is best for Chase is all that

> matters

> > (and thankfully until now, insurance has been really good).

While

> I

> > completely agree, I just have days where I feel that enough is

> > enough. We've been through so much but a new mom can only take

so

> > much. I just so want Chase to be like all of the other babies

> (he's

> > never been in a swing or a bouncy seat). I know all of these

> issues

> > have made us more appreciative of the little things and we're

> blessed

> > that he is always in such terrific spirits. I know he'll be

fine

> > (and my husband, the football coach, already has ideas about

> > decorating a cool helmet) - right now, I'm worried about how I

> will

> > do with it. How do you all do it?

> >

> > With Mother's Day yesterday, I got a lot of cards and comments

> about

> > all I've been through and how strong of a person I am, but as we

> get

> > closer to the plastic surgeon visit - I don't feel strong - I

feel

> > scared! After a textbook perfect pregnancy (and waiting 34

years

> to

> > have a baby), I wasn't prepared for any of this. While I've

> learned

> > to cope, it's still so hard. I'm home (after 12 years of

teaching

> > 8th graders - this was a huge, but enjoyable, change), so I have

> to

> > deal with the doctors more than my husband (who goes to visits

> when

> > he can) and days like today, I just feel so helpless!

> >

> > Sorry to be so wordy on my first post - but ANY words of wisdom

> would

> > be so helpful! I wouldn't trade Chase for all of the stars in

the

> > sky, but something simple like an ear infection would be a nice

> > change of pace

> >

> > Nikki

> >

>

[Guest guest]

Hugs to you - I can't believe everything you've been through. I can

relate to the " normal baby " a little bit - our Caroline had

strabismus (cross eyes) and glasses at 5 months, surgery on her eyes

at 7 months, and got her helmet at 10 months old. You've had much

more stress than that! (she was jaundiced too but fortunately did

not have to be readmitted - barely)

The glasses did get me used to staring. People are not used to

seeing a baby with glasses. However, I get more dumb questions about

the glasses than I've gotten about the helmet. Decorating the helmet

makes everything a little easier, as does knowing that you're doing

the right thing for your child.

Just like with the surgeries and the PT, you do what you have to do.

Chase is lucky to have you for parents and one thing about the

helmet is that it is only for a limited time and he will not

remember any of it! Hopefully someday all of this will be a distant

memory for all of us.

I don't know where you are in Chicago but I have a friend there who

just had to band her 17 month old.

Best of luck to you and continued wishes for good health to your

little Chase.

Terri

>

> Hi - I'm Nikki and our 7 month old son, Chase, is such a little

> trooper. He's our first non-furry child (we have 2 dogs and a

cat)

> and the joy of our lives. He has had such a rocky beginning, but

> you'd never tell from his amazing outgoing personality.

>

> He was a full-term baby (although he was a vacuum birth - he had a

> big old head for my small pelvis). I thought being readmitted for

> jaundice at five days old was horrible, but while he was there,

our

> ped. caught a heart murmur. The jaundice was a blessing in

> disguise. Chase needed closed heart surgery when he was just 12

days

> old for a coarctation (an aortic valve was too narrow). He was

home

> on day 19 and other than repeated visits to our cardiologist, the

> small scar on his back is all that is left of that problem.

>

> At our follow-up after heart surgery at three weeks, our ped.

> detected a fibroid mastiosis coli (torticollis). He's been in PT

> since he was 6 weeks old (every week at first, but every other

week

> since Feb.). I was warned about the DOC band then, but his head

was

> pretty round, so none of us worried too much.

>

> By four months, he had some definite flatness on the right

posterior

> side. Around this time, we also were hospitalized for six days

with

> endocartitis (a bacterial infection of the heart). He came home

with

> a PICC line and I had to administer medicine 2xs a day for 28

days.

> This set us back with the PT and tort and his mild eczema now

turned

> so severe that we needed to see a dermatologist. Once the meds

> stopped, his skin got better (with the help of prescription

> hydrocortisone and Aquaphor, plus daily baths) and his neck once

> again started to improve. He also learned to roll on to his

stomach

> (constant tummy time since he was four weeks old had to help) and

> started to sleep that way.

>

> His flat spot in back is almost gone, but thanks to three months

of

> stomach sleeping and still some major tort issues, he's now

> developing a flat spot on the left side of his forehead. Both our

> ped and PT have referred us to a plastic surgeon (we have an

> appointment in three weeks for a consult). Our wonderful ped. who

> catches everything told me " maybe he won't need a helmet. " As I

just

> smiled at her, she added, " of course, the odds aren't in our

favor,

> but you never know. " This is the doctor I've been dreading since

he

> was six weeks old.

>

> If you saw Chase and didn't know any of the above, you'd think he

was

> the cutest baby ever. Friends, co-workers, church members and

family

> all know most (if not all) of his history, so I am forever giving

> doctor updates to the very thoughtful and concerned masses.

However,

> I'm terrified about the stares and rude questions we'll get if

Chase

> does indeed need a band - you can't hide that like a scar.

>

> My husband's theory is whatever is best for Chase is all that

matters

> (and thankfully until now, insurance has been really good). While

I

> completely agree, I just have days where I feel that enough is

> enough. We've been through so much but a new mom can only take so

> much. I just so want Chase to be like all of the other babies

(he's

> never been in a swing or a bouncy seat). I know all of these

issues

> have made us more appreciative of the little things and we're

blessed

> that he is always in such terrific spirits. I know he'll be fine

> (and my husband, the football coach, already has ideas about

> decorating a cool helmet) - right now, I'm worried about how I

will

> do with it. How do you all do it?

>

> With Mother's Day yesterday, I got a lot of cards and comments

about

> all I've been through and how strong of a person I am, but as we

get

> closer to the plastic surgeon visit - I don't feel strong - I feel

> scared! After a textbook perfect pregnancy (and waiting 34 years

to

> have a baby), I wasn't prepared for any of this. While I've

learned

> to cope, it's still so hard. I'm home (after 12 years of teaching

> 8th graders - this was a huge, but enjoyable, change), so I have

to

> deal with the doctors more than my husband (who goes to visits

when

> he can) and days like today, I just feel so helpless!

>

> Sorry to be so wordy on my first post - but ANY words of wisdom

would

> be so helpful! I wouldn't trade Chase for all of the stars in the

> sky, but something simple like an ear infection would be a nice

> change of pace

>

> Nikki

>

[Guest guest]

Amy: Chase had his official visit with the plastic surgeon on May 23rd and it was confirmed he'll need a helmet for about 4 months (we're in the mild/moderate stage). We had to wait until we got a CT scan - done on May 31st. We're awaiting the results (and of course, we had to wait about insurance to see what was and wasn't covered). It looks like we'll be getting a STARband (that's the one we really wanted). I noticed that Noah has one - any tips for me? We're getting the results from the CT on Monday and we're scheduled for the casting on Thursday. Then I guess it's about a 2 week wait until our band is here. Any STARband infor would be oh so helpful! Thanks, Nikki mom to Chase - soon to be STARbandedonlyashadow8 <shadowfax8@...> wrote: Hi Nikki,Oh, what a time you've had already! You've been so strong through everything with Chase...I certainly understand not wanting just one more thing to go through. But like most of the people who have responded to your post have said, you CAN do this and it's really not that bad. My experience with my son having a STARband has been relatively easy. We really haven't gotten many stares, and I honestly don't even notice the band anymore. We decorate it every 2-3 weeks, which makes it fun and cute and quite personal, and little Noah doesn't notice the band at all. Like you, I was terrified before Noah got his band--what would people think? What if it bothered him? Would it bother me to have this thing on his head all the time? For me, these fears were unfounded, and it's been just fine. And the time

is really flying by--Noah's been in his band 8 weeks already, so we're at least halfway done! Chase will be just as cute as he is now with a band on--maybe even cuter. Noah has a different theme every 2 weeks to accent his good looks, and some of them have been just adorable! Please keep us updated on your progress, and know that there are alot of moms out here going through the same thing, so you're not alone. Good luck!-Amymother to Noah, 9 months, STARbanded 3/17/06 >> Hi - I'm Nikki and our 7 month old son, Chase, is such a little > trooper. He's our first non-furry child (we have 2 dogs and a cat) > and the joy of our lives. He has had such a rocky beginning, but > you'd never tell from his amazing outgoing personality.> > He was a

full-term baby (although he was a vacuum birth - he had a > big old head for my small pelvis). I thought being readmitted for > jaundice at five days old was horrible, but while he was there, our > ped. caught a heart murmur. The jaundice was a blessing in > disguise. Chase needed closed heart surgery when he was just 12 days > old for a coarctation (an aortic valve was too narrow). He was home > on day 19 and other than repeated visits to our cardiologist, the > small scar on his back is all that is left of that problem.> > At our follow-up after heart surgery at three weeks, our ped. > detected a fibroid mastiosis coli (torticollis). He's been in PT > since he was 6 weeks old (every week at first, but every other week > since Feb.). I was warned about the DOC band then, but his head was > pretty round, so none of us worried

too much.> > By four months, he had some definite flatness on the right posterior > side. Around this time, we also were hospitalized for six days with > endocartitis (a bacterial infection of the heart). He came home with > a PICC line and I had to administer medicine 2xs a day for 28 days. > This set us back with the PT and tort and his mild eczema now turned > so severe that we needed to see a dermatologist. Once the meds > stopped, his skin got better (with the help of prescription > hydrocortisone and Aquaphor, plus daily baths) and his neck once > again started to improve. He also learned to roll on to his stomach > (constant tummy time since he was four weeks old had to help) and > started to sleep that way.> > His flat spot in back is almost gone, but thanks to three months of > stomach sleeping and still

some major tort issues, he's now > developing a flat spot on the left side of his forehead. Both our > ped and PT have referred us to a plastic surgeon (we have an > appointment in three weeks for a consult). Our wonderful ped. who > catches everything told me "maybe he won't need a helmet." As I just > smiled at her, she added, "of course, the odds aren't in our favor, > but you never know." This is the doctor I've been dreading since he > was six weeks old.> > If you saw Chase and didn't know any of the above, you'd think he was > the cutest baby ever. Friends, co-workers, church members and family > all know most (if not all) of his history, so I am forever giving > doctor updates to the very thoughtful and concerned masses. However, > I'm terrified about the stares and rude questions we'll get if Chase > does

indeed need a band - you can't hide that like a scar.> > My husband's theory is whatever is best for Chase is all that matters > (and thankfully until now, insurance has been really good). While I > completely agree, I just have days where I feel that enough is > enough. We've been through so much but a new mom can only take so > much. I just so want Chase to be like all of the other babies (he's > never been in a swing or a bouncy seat). I know all of these issues > have made us more appreciative of the little things and we're blessed > that he is always in such terrific spirits. I know he'll be fine > (and my husband, the football coach, already has ideas about > decorating a cool helmet) - right now, I'm worried about how I will > do with it. How do you all do it?> > With Mother's Day yesterday, I got a lot of

cards and comments about > all I've been through and how strong of a person I am, but as we get > closer to the plastic surgeon visit - I don't feel strong - I feel > scared! After a textbook perfect pregnancy (and waiting 34 years to > have a baby), I wasn't prepared for any of this. While I've learned > to cope, it's still so hard. I'm home (after 12 years of teaching > 8th graders - this was a huge, but enjoyable, change), so I have to > deal with the doctors more than my husband (who goes to visits when > he can) and days like today, I just feel so helpless!> > Sorry to be so wordy on my first post - but ANY words of wisdom would > be so helpful! I wouldn't trade Chase for all of the stars in the > sky, but something simple like an ear infection would be a nice > change of pace > >

Nikki>

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Orthomerica, the maker of the STARband, has a lot of good information on their website regarding the STARband:

http://www.orthomerica.com/products/cranial/faq_parents.htm

Hope this helps!

Molly

California

Nicolas, 7.5 months, tort & plagio, STARband 4/25/06

, 3

, 6.5

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Nikki LoomosSent: 2 June 2006 2:07 PMPlagiocephaly Subject: Re: Re: Help - I think I'm a plagio mom and I'm scared!

Amy:

Chase had his official visit with the plastic surgeon on May 23rd and it was confirmed he'll need a helmet for about 4 months (we're in the mild/moderate stage). We had to wait until we got a CT scan - done on May 31st. We're awaiting the results (and of course, we had to wait about insurance to see what was and wasn't covered). It looks like we'll be getting a STARband (that's the one we really wanted). I noticed that Noah has one - any tips for me? We're getting the results from the CT on Monday and we're scheduled for the casting on Thursday. Then I guess it's about a 2 week wait until our band is here.

Any STARband infor would be oh so helpful!

Thanks, Nikki

mom to Chase - soon to be STARbandedonlyashadow8 <shadowfax8@...> wrote:

Hi Nikki,Oh, what a time you've had already! You've been so strong through everything with Chase...I certainly understand not wanting just one more thing to go through. But like most of the people who have responded to your post have said, you CAN do this and it's really not that bad. My experience with my son having a STARband has been relatively easy. We really haven't gotten many stares, and I honestly don't even notice the band anymore. We decorate it every 2-3 weeks, which makes it fun and cute and quite personal, and little Noah doesn't notice the band at all. Like you, I was terrified before Noah got his band--what would people think? What if it bothered him? Would it bother me to have this thing on his head all the time? For me, these fears were unfounded, and it's been just fine. And the time is really flying by--Noah's been in his band 8 weeks already, so we're at least halfway done! Chase will be just as cute as he is now with a band on--maybe even cuter. Noah has a different theme every 2 weeks to accent his good looks, and some of them have been just adorable! Please keep us updated on your progress, and know that there are alot of moms out here going through the same thing, so you're not alone. Good luck!-Amymother to Noah, 9 months, STARbanded 3/17/06 >> Hi - I'm Nikki and our 7 month old son, Chase, is such a little > trooper. He's our first non-furry child (we have 2 dogs and a cat) > and the joy of our lives. He has had such a rocky beginning, but > you'd never tell from his amazing outgoing personality.> > He was a full-term baby (although he was a vacuum birth - he had a > big old head for my small pelvis). I thought being readmitted for > jaundice at five days old was horrible, but while he was there, our > ped. caught a heart murmur. The jaundice was a blessing in > disguise. Chase needed closed heart surgery when he was just 12 days > old for a coarctation (an aortic valve was too narrow). He was home > on day 19 and other than repeated visits to our cardiologist, the > small scar on his back is all that is left of that problem.> > At our follow-up after heart surgery at three weeks, our ped. > detected a fibroid mastiosis coli (torticollis). He's been in PT > since he was 6 weeks old (every week at first, but every other week > since Feb.). I was warned about the DOC band then, but his head was > pretty round, so none of us worried too much.> > By four months, he had some definite flatness on the right posterior > side. Around this time, we also were hospitalized for six days with > endocartitis (a bacterial infection of the heart). He came home with > a PICC line and I had to administer medicine 2xs a day for 28 days. > This set us back with the PT and tort and his mild eczema now turned > so severe that we needed to see a dermatologist. Once the meds > stopped, his skin got better (with the help of prescription > hydrocortisone and Aquaphor, plus daily baths) and his neck once > again started to improve. He also learned to roll on to his stomach > (constant tummy time since he was four weeks old had to help) and > started to sleep that way.> > His flat spot in back is almost gone, but thanks to three months of > stomach sleeping and still some major tort issues, he's now > developing a flat spot on the left side of his forehead. Both our > ped and PT have referred us to a plastic surgeon (we have an > appointment in three weeks for a consult). Our wonderful ped. who > catches everything told me "maybe he won't need a helmet." As I just > smiled at her, she added, "of course, the odds aren't in our favor, > but you never know." This is the doctor I've been dreading since he > was six weeks old.> > If you saw Chase and didn't know any of the above, you'd think he was > the cutest baby ever. Friends, co-workers, church members and family > all know most (if not all) of his history, so I am forever giving > doctor updates to the very thoughtful and concerned masses. However, > I'm terrified about the stares and rude questions we'll get if Chase > does indeed need a band - you can't hide that like a scar.> > My husband's theory is whatever is best for Chase is all that matters > (and thankfully until now, insurance has been really good). While I > completely agree, I just have days where I feel that enough is > enough. We've been through so much but a new mom can only take so > much. I just so want Chase to be like all of the other babies (he's > never been in a swing or a bouncy seat). I know all of these issues > have made us more appreciative of the little things and we're blessed > that he is always in such terrific spirits. I know he'll be fine > (and my husband, the football coach, already has ideas about > decorating a cool helmet) - right now, I'm worried about how I will > do with it. How do you all do it?> > With Mother's Day yesterday, I got a lot of cards and comments about > all I've been through and how strong of a person I am, but as we get > closer to the plastic surgeon visit - I don't feel strong - I feel > scared! After a textbook perfect pregnancy (and waiting 34 years to > have a baby), I wasn't prepared for any of this. While I've learned > to cope, it's still so hard. I'm home (after 12 years of teaching > 8th graders - this was a huge, but enjoyable, change), so I have to > deal with the doctors more than my husband (who goes to visits when > he can) and days like today, I just feel so helpless!> > Sorry to be so wordy on my first post - but ANY words of wisdom would > be so helpful! I wouldn't trade Chase for all of the stars in the > sky, but something simple like an ear infection would be a nice > change of pace > > Nikki>

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