Re: Worry, worry, worry

[Guest guest]

, I know how you feel. We have been so used to my son in his

helmet. When he does not have it on I notice more too. It's really weird how

these kids look much worse when you look at them in the mirror. Is it an

optical illusion?! Belinda (Indiana)

[Guest guest]

, I went back and looked at Grace's pictures again, and I don't think her head looks that big! But even if you (or others) think it looks abnormally large, just remember that she will most likely "grow into" it eventually (uh oh, do I sound like our pediatricians?). My nephew had a really large head for the size of his body when he was 1-2 and we always noticed it, but now at 2 1/2 he looks totally "normal". Anyway, hope you feel better! -Pam

----- Original Message -----

From: C.

Plagiocephaly

Sent: Wednesday, April 12, 2000 9:13 PM

Subject: Worry, worry, worry

Ok, I'm warning you, I'm stressed. You might just want to skip this post.

In these past 3 days or so that Grace has been unable to wear her band, I've noticed something. At first I forgot and thought it was because she had it on. But, she didn't.

People still stare.

And not the kind of stare that you would give an adorable smiling baby. It's the double-take, questioning look when they don't quite understand what they are seeing. And she's NOT WEARING THE BAND!

This bothered me so much, I asked my sister if she would tell me if Grace looked odd. She said, "Yes. She looks a little like she has Down Syndrome. Her face is flat and her head is big and tall". Ok. So, I thought I would get another opinion. After all, my whole family has been dissecting the evenness and flatness and symmetry of Grace's skull - they're all probably seeing zebra's where it's just a horse.

I asked a girl I work with. She's a mom of 2 little girls. She wouldn't say anything to purposely hurt my feelings. She also agreed there was something different in Grace's looks. Her head looks very big and "different."

I know Grace has a big head. The doctor's have even given me a name for it. But, it's not supposed to be something anyone would really notice! That's what the doctor said! I know Grace doesn't have Downs and I know she has all her ducks in a row mentally.

I'm not distressed because I might have a daughter who looks different. That doesn't matter in the grand scheme of things. I'm terrified because I might have a daughter with something really wrong with her! I thought I knew what was going on! I thought we had all the names and diagnosis codes and the projected course of treatments.

All I'm doing is whipping myself into a frenzy here. I'm just going to hit the hay and bawl for a little bit. Poor Grace! We go to CT Friday to try and get the band adjusted so she can wear it. Once she is able to have that on and the "treatment" starts again, I'll feel better.

I am so sorry I've dumped on you guys. This has been eating at me all day. Most of the day I've sniffled and snuffled at my desk.

Maybe I ate something bad too

C./subscribe/Plagiocephaly

[Guest guest]

Oh !!

:0* There's a big kiss on the cheek for you. I don't know

how to make a hug! Everythings O.K.! I think Grace is beautiful!

You go have a big cry. You'll feel better. She WILL grow

into her head - and it's not that bad to begin with!

Chin - up!!

Kendra

" C." wrote:

Ok,

I'm warning you, I'm stressed. You might just want to skip this post.

In these past 3 days or so that Grace

has been unable to wear her band, I've noticed something. At first

I forgot and thought it was because she had it on. But, she didn't.

People still stare.

And not the kind of stare that you

would give an adorable smiling baby. It's the double-take, questioning

look when they don't quite understand what they are seeing. And she's

NOT

WEARING THE BAND! This

bothered me so much, I asked my sister if she would tell me if Grace looked

odd. She said, "Yes. She looks a little like she has Down Syndrome.

Her face is flat and her head is big and tall". Ok. So, I thought

I would get another opinion. After all, my whole family has been

dissecting the evenness and flatness and symmetry of Grace's skull - they're

all probably seeing zebra's where it's just a horse. I

asked a girl I work with. She's a mom of 2 little girls. She

wouldn't say anything to purposely hurt my feelings. She also agreed

there was something different in Grace's looks. Her head looks very

big and "different." I know

Grace has a big head. The doctor's have even given me a name for

it. But, it's not supposed to be something anyone would really notice!

That's what the doctor said! I know Grace doesn't have Downs and

I know she has all her ducks in a row mentally. I'm

not distressed because I might have a daughter who looks different.

That doesn't matter in the grand scheme of things. I'm terrified

because I might have a daughter with something really wrong with her!

I thought I knew what was going on! I thought we had all the names

and diagnosis codes and the projected course of treatments.

All I'm doing is whipping myself into

a frenzy here. I'm just going to hit the hay and bawl for a little

bit. Poor Grace! We go to CT Friday to try and get the band

adjusted so she can wear it. Once she is able to have that on and

the "treatment" starts again, I'll feel better. I

am so sorry I've dumped on you guys. This has been eating at me all

day. Most of the day I've sniffled and snuffled at my desk.

Maybe I ate something bad too

C.

/subscribe/Plagiocephaly

[Guest guest]

{{{{{{{{{{Kendra}}}}}}}}}}}}}}}

There, I gave you a big hug! Thanks for the sentiments. I'm actually starting to feel better. Which is good, because I used up all my Kleenex.

C./subscribe/Plagiocephaly

----- Original Message -----

From: & Kendra

Plagiocephalyegroups

Sent: Wednesday, April 12, 2000 9:57 PM

Subject: Re: Worry, worry, worry

Oh !! :0* There's a big kiss on the cheek for you. I don't know how to make a hug! Everythings O.K.! I think Grace is beautiful! You go have a big cry. You'll feel better. She WILL grow into her head - and it's not that bad to begin with! Chin - up!! Kendra " C." wrote:

Ok, I'm warning you, I'm stressed. You might just want to skip this post. In these past 3 days or so that Grace has been unable to wear her band, I've noticed something. At first I forgot and thought it was because she had it on. But, she didn't. People still stare. And not the kind of stare that you would give an adorable smiling baby. It's the double-take, questioning look when they don't quite understand what they are seeing. And she's NOT WEARING THE BAND! This bothered me so much, I asked my sister if she would tell me if Grace looked odd. She said, "Yes. She looks a little like she has Down Syndrome. Her face is flat and her head is big and tall". Ok. So, I thought I would get another opinion. After all, my whole family has been dissecting the evenness and flatness and symmetry of Grace's skull - they're all probably seeing zebra's where it's just a horse. I asked a girl I work with. She's a mom of 2 little girls. She wouldn't say anything to purposely hurt my feelings. She also agreed there was something different in Grace's looks. Her head looks very big and "different." I know Grace has a big head. The doctor's have even given me a name for it. But, it's not supposed to be something anyone would really notice! That's what the doctor said! I know Grace doesn't have Downs and I know she has all her ducks in a row mentally. I'm not distressed because I might have a daughter who looks different. That doesn't matter in the grand scheme of things. I'm terrified because I might have a daughter with something really wrong with her! I thought I knew what was going on! I thought we had all the names and diagnosis codes and the projected course of treatments. All I'm doing is whipping myself into a frenzy here. I'm just going to hit the hay and bawl for a little bit. Poor Grace! We go to CT Friday to try and get the band adjusted so she can wear it. Once she is able to have that on and the "treatment" starts again, I'll feel better. I am so sorry I've dumped on you guys. This has been eating at me all day. Most of the day I've sniffled and snuffled at my desk. Maybe I ate something bad too C. /subscribe/Plagiocephaly

[Guest guest]

,

For all of the things that Grace has gone through since birth....you've been

through a lot, and perhaps it is now coming to a point where it's just a

little more to deal with than you want......and that's perfectly

understandable. It's difficult going through so much with our little ones,

we want so much to have everything be ok. I know you are worried that maybe

the Drs. are missing something, but at least they've been looking at the

different possibilities. She may grow into (most kids do)-- but then, I know

how difficult that is to hear when it does seem different. Only one of my

friends actually acknowledged immediately to my face when I spoke freely

about Quinn's head -- others just said " it's not so bad " --- even my mom,

who is always frank and honest with me, before she knew there was an option

to correct his shape a little, tried to calm me by saying " it's much better

than it was in December "

You are doing everything you can to help your little girl be happy and

healthy (no ear infection THIS time! *smile*) and it may take some time for

her body to catch up with her head. And drs. will keep an eye out to make

sure everything is progressing as it should...

Take a deep breath.... take another....

Much Peace.

-----Original Message-----

From: C. [mailto:crain@...]

Sent: Wednesday, April 12, 2000 10:13 PM

Plagiocephaly

Subject: Worry, worry, worry

Ok, I'm warning you, I'm stressed. You might just want to skip this post.

In these past 3 days or so that Grace has been unable to wear her band, I've

noticed something. At first I forgot and thought it was because she had it

on. But, she didn't.

People still stare.

And not the kind of stare that you would give an adorable smiling baby.

It's the double-take, questioning look when they don't quite understand what

they are seeing. And she's NOT WEARING THE BAND!

This bothered me so much, I asked my sister if she would tell me if Grace

looked odd. She said, " Yes. She looks a little like she has Down Syndrome.

Her face is flat and her head is big and tall " . Ok. So, I thought I would

get another opinion. After all, my whole family has been dissecting the

evenness and flatness and symmetry of Grace's skull - they're all probably

seeing zebra's where it's just a horse.

I asked a girl I work with. She's a mom of 2 little girls. She wouldn't

say anything to purposely hurt my feelings. She also agreed there was

something different in Grace's looks. Her head looks very big and

" different. "

I know Grace has a big head. The doctor's have even given me a name for it.

But, it's not supposed to be something anyone would really notice! That's

what the doctor said! I know Grace doesn't have Downs and I know she has

all her ducks in a row mentally.

I'm not distressed because I might have a daughter who looks different.

That doesn't matter in the grand scheme of things. I'm terrified because I

might have a daughter with something really wrong with her! I thought I

knew what was going on! I thought we had all the names and diagnosis codes

and the projected course of treatments.

All I'm doing is whipping myself into a frenzy here. I'm just going to hit

the hay and bawl for a little bit. Poor Grace! We go to CT Friday to try

and get the band adjusted so she can wear it. Once she is able to have that

on and the " treatment " starts again, I'll feel better.

I am so sorry I've dumped on you guys. This has been eating at me all day.

Most of the day I've sniffled and snuffled at my desk.

Maybe I ate something bad too

C.

/subscribe/Plagiocephaly

[Guest guest]

Hi ,

I just wanted to say the I was looking at Graces pictures earlier after reading one of the posts talking about how she was considered "severe" and I couldn't see how she was severe. She is absolutely beautiful. I couldn't tell from the pictures that she even had plagio. My son has a very round face, but we all think that it's adorable. He was born with a round face and that's what everyone commented on was how beautiful and round his face was. I hope that after your cry you can look at the pictures of Grace and realize that we all think she is beautiful.

PS, the picture of Kendra's niece is adorable. I don't think her head is big either.

Take care,

('s mom)

[Guest guest]

Ive seen your daughters pictures and she is beautiful!!! I personally

dont see anything wrong with her. Shes healthy right....and youre doing

what is right with the band. I know this is hard, but it will be okay.

We're all here for you:-)

[Guest guest]

angela,please don't worry about grace.she'll be just fine.you will too.i've

noticed that people look at olivia different with her helmet on and her

helmet off.i brought her by my office today,with the helmet on ,and patients

stared at her more than my coworkers.i work for a dental office as a dental

assistant/office manager.i related your concerns to my cousin whose daughter

has acondrosplasia which is a form of dwarfism and talk about stares! madison

is her name,she'll be 2 in may.she has a pronounced head and a small

body.michelle though business cards sounded like a good idea.i can remember

when my steven was an infant.all he did was cry!he had a neuro cry which is

just a high pitched wail of pain.anyway,we took him to a neurologist and they

confronted me with thoughts of cerebral palsy,down syndrome not associated

with facial features...all kinds of horrible things.i cried the whole way

home,most of the day,night and weekend until the brain ultrasound.everything

was normal.he just cried because he was in pain!diaphragmatic hernia will do

that do you.but please be assured she will fine,everyone will be fine and you

will be too.i can relate to the need for vent.totally.anytime.i can listed

and write.i'm very good at that.

lynne

[Guest guest]

Hi Lynne!

Thanks for the good wishes. Poor ! Is his diaphragm healed now?

I really do feel a lot better than I did yesterday. Talk about being in a funk!

Grace's father is adopted, and I never really thought about it until she was born and ended up with one difficulty after another. Now, it seems to be a very big deal to be in the dark about half her lineage.

C./subscribe/Plagiocephaly

----- Original Message -----

From: LYJOJOST2@...

Plagiocephalyegroups

Sent: Thursday, April 13, 2000 6:43 PM

Subject: Re: Worry, worry, worry

angela,please don't worry about grace.she'll be just fine.you will too.i've noticed that people look at olivia different with her helmet on and her helmet off.i brought her by my office today,with the helmet on ,and patients stared at her more than my coworkers.i work for a dental office as a dental assistant/office manager.i related your concerns to my cousin whose daughter has acondrosplasia which is a form of dwarfism and talk about stares! madison is her name,she'll be 2 in may.she has a pronounced head and a small body.michelle though business cards sounded like a good idea.i can remember when my steven was an infant.all he did was cry!he had a neuro cry which is just a high pitched wail of pain.anyway,we took him to a neurologist and they confronted me with thoughts of cerebral palsy,down syndrome not associated with facial features...all kinds of horrible things.i cried the whole way home,most of the day,night and weekend until the brain ultrasound.everything was normal.he just cried because he was in pain!diaphragmatic hernia will do that do you.but please be assured she will fine,everyone will be fine and you will be too.i can relate to the need for vent.totally.anytime.i can listed and write.i'm very good at that.lynne

[Guest guest]

all i did was worry about steven...he had diaphragmatic surgery repair at 17

months,it was not seen until 9 months on a chest xray.most children with

diaphragmatic hernia die at birth unless it's repaired right away.we found

out about the hernia at 9 months when he turned a funny yellow color.i just

thought he was eating too many carrots and sweet potatoes.we saw a surgon in

town boston who didn't seem all that interested in fixing it right away

because he was severly malnourished and failure to thrive.they didn't think

he could survive the anesthesia needed for the length of repair he needed to

have done.so we waied untilhe gained a little more weight and became more

stable.all in all he did well.to see him now he's actually dancing to a

commercial on t.v. for red lobster restaurant where the lobsters are crawling

on the bottom of the ocean and singing no where to run to,no where to

hide.he's a piece of work,this child of mine.thanks for all your support.it's

a daily battle sometimes isn't it?

lynne

[Guest guest]

I hear you. Bobby is mild -- but it doesn't look mild to me. The doctor's

keep saying it will round out.

I can't tell you how many tears and how much pain I have gone through over

this.

Sometimes it hits me at the weirdest times, but mostly at night when I am

tired.

That is one reason I can't thank you enough for starting this group.

Judy

[Guest guest]

, , . Now you owe your mother a lifetime of peace and health after all you've put her through in your first 2 years! Lynne, I am SO glad he is ok now.

C./subscribe/Plagiocephaly

----- Original Message -----

From: LYJOJOST2@...

Plagiocephalyegroups

Sent: Friday, April 14, 2000 7:33 PM

Subject: Re: Worry, worry, worry

all i did was worry about steven...he had diaphragmatic surgery repair at 17 months,it was not seen until 9 months on a chest xray.most children with diaphragmatic hernia die at birth unless it's repaired right away.we found out about the hernia at 9 months when he turned a funny yellow color.i just thought he was eating too many carrots and sweet potatoes.we saw a surgon in town boston who didn't seem all that interested in fixing it right away because he was severly malnourished and failure to thrive.they didn't think he could survive the anesthesia needed for the length of repair he needed to have done.so we waied untilhe gained a little more weight and became more stable.all in all he did well.to see him now he's actually dancing to a commercial on t.v. for red lobster restaurant where the lobsters are crawling on the bottom of the ocean and singing no where to run to,no where to hide.he's a piece of work,this child of mine.thanks for all your support.it's a daily battle sometimes isn't it?lynne

[Guest guest]

You guys always express your gratitude for me doing something that was really selfish in origin! I wanted someone to talk to about all of this and you all have helped ME tremendously.

C./subscribe/Plagiocephaly

----- Original Message -----

From: rmissirian@...

Plagiocephalyegroups

Sent: Friday, April 14, 2000 9:34 PM

Subject: Re: Worry, worry, worry

I hear you. Bobby is mild -- but it doesn't look mild to me. The doctor's keep saying it will round out. I can't tell you how many tears and how much pain I have gone through over this. Sometimes it hits me at the weirdest times, but mostly at night when I am tired.That is one reason I can't thank you enough for starting this group.Judy