Is it worth it?

April 28, 2003

Yes, it is worth it but you need t pray and God will steer you in the right direction I amcertain.

Best to you

beck

April 28, 2003

Please forgive me for my whining, questions, and indecisiveness. I am just

really struggling here.

I'm attaching a top view pic of Lorenzo's head. It's a month old, but his

head looks the same still. What are your honest opinions? At church

yesterday, no one could understand why he needs a helmet. They think that

his head looks just fine. They don't understand why I would want to fight

insurance. I've heard so many comments like " Well, I've seen lots of

babies' heads that look like that. What's the big deal? "

To pay for a DOC band out of pocket would be a huge sacrifice for us. I

stay at home and homeschool our children, while my dh is working on his

Master of Divinity degree to be a pastor. He has a job that just makes ends

meet for our family of 6. I don't even know where the money would come

from.

But I'm willing to make the sacrifice IF it is worth it. Now I just need to

know if it's worth it. Do you think the sacrifice for the DOC band would be

justified? None of my friends think it is. Of course, they aren't educated

about plagio either. I need the opinions of parents like yourselves. What

do you think?

God Bless,

in KY

Wife to Bert

Mama to Isabelle (5), Carolina (4), (3) and Lorenzo (7 mos.)

April 28, 2003

Hi :You are hardly whining!!! Not one bit, so please don't apologize, that's what we're here for, to help you thru all of this!!

Scaphy is pretty uncommon and it's the least talked about headshapes in our group. I would really love to help you one way or another, but honestly, I don't know what I would do either. What a difficult decision for your family to make. Argh! I'm really sorry I can't help you more, I wish I could, but I've thought about it for a few hrs now & I'm still undecided what to tell you.

Hugs!

Debbie Abby's mom DOCGrad

MI

p.s..look for the scanned Dustie letter this time Tues night! Lumetta <Lumetta@...> wrote:

Please forgive me for my whining, questions, and indecisiveness. I am justreally struggling here.I'm attaching a top view pic of Lorenzo's head. It's a month old, but hishead looks the same still. What are your honest opinions? At churchyesterday, no one could understand why he needs a helmet. They think thathis head looks just fine. They don't understand why I would want to fightinsurance. I've heard so many comments like "Well, I've seen lots ofbabies' heads that look like that. What's the big deal?"To pay for a DOC band out of pocket would be a huge sacrifice for us. Istay at home and homeschool our children, while my dh is working on hisMaster of Divinity degree to be a pastor. He has a job that just makes endsmeet for our family of 6. I don't even know where the money would comefrom.But I'm willing to make the sacrifice IF it is worth it. Now I just need toknow if it's worth it. Do you think the sacrifice for the DOC band would bejustified? None of my friends think it is. Of course, they aren't educatedabout plagio either. I need the opinions of parents like yourselves. Whatdo you think?God Bless, in KYWife to BertMama to Isabelle (5), Carolina (4), (3) and Lorenzo (7 mos.)For more plagio info

April 28, 2003

Hi

I know what you feel like and I hope I can give you some insight

into our situation. Like you our child needed a helmet, at least in

our opinion, and the service was not offered in our province. We

researched and luckily found a place that could help our child, but

it was in Toronto, and with all the SARS cases there, we could never

risk the trip. Plis the big thing was cost...we were being told

that it was prohibitally expensive: $5000 to $8000! There would be

flights every 2 to 3 weeks back to Toronto, and no guarentees that

she would benefit from the treatment..our insurance covered nothing

and the provincial health plan that is supposed to be universal

covered nothing. We did get a referal from one neurosurgeon to

another that saved us the cost of the visit to him, a potential

savings of about $600. We eventually got to another hospital and

had her helmet made this past week, and we are delighted. It has

been financally taxing, and hopefully we can get through the follow

up visits, but we also never want to look back and say that we

didn't do what we could for our little girl. What I am getting at

is that you have to look at the resources around you. Get your

church involved. We are Catholic, and members of the Knights have

helped us out, family has passed along that we had to leave and fly

out to have this done and they have arranged to have card games and

bake sales to help Kassidy... Just remember that the church and

community are part of your childs upbringing too. Don't feel to

proud to let others help you, whether it is emotionally or

financially. That is what your friends are for..

I hope things work out for all of you...and we are thinking and

praying for you!

I keep in my mind that God never gives us more than we can

handle,....just keep that in mind..

All the best..and I hope that I haven't been too pushy...

Wanda, Mom to Kassidy

- In Plagiocephaly , Debbie <dj2kirby@s...> wrote:

> Hi :

> You are hardly whining!!! Not one bit, so please don't apologize,

that's what we're here for, to help you thru all of this!! Scaphy

is pretty uncommon and it's the least talked about headshapes in our

group. I would really love to help you one way or another, but

honestly, I don't know what I would do either. What a difficult

decision for your family to make. Argh! I'm really sorry I can't

help you more, I wish I could, but I've thought about it for a few

hrs now & I'm still undecided what to tell you.Hugs!Debbie Abby's

mom DOCGradMIp.s..look for the scanned Dustie letter this time Tues

night!

>

> Lumetta <Lumetta@n...> wrote:Please forgive me for my

whining, questions, and indecisiveness. I am just

> really struggling here.

>

> I'm attaching a top view pic of Lorenzo's head. It's a month old,

but his

> head looks the same still. What are your honest opinions? At

church

> yesterday, no one could understand why he needs a helmet. They

think that

> his head looks just fine. They don't understand why I would want

to fight

> insurance. I've heard so many comments like " Well, I've seen lots

of

> babies' heads that look like that. What's the big deal? "

>

> To pay for a DOC band out of pocket would be a huge sacrifice for

us. I

> stay at home and homeschool our children, while my dh is working

on his

> Master of Divinity degree to be a pastor. He has a job that just

makes ends

> meet for our family of 6. I don't even know where the money would

come

> from.

>

> But I'm willing to make the sacrifice IF it is worth it. Now I

just need to

> know if it's worth it. Do you think the sacrifice for the DOC

band would be

> justified? None of my friends think it is. Of course, they

aren't educated

> about plagio either. I need the opinions of parents like

yourselves. What

> do you think?

>

> God Bless,

> in KY

>

> Wife to Bert

> Mama to Isabelle (5), Carolina (4), (3) and Lorenzo (7

mos.)

>

April 28, 2003

Hello,

I thought about this for a moment and I agree that it is a difficult

call. I do not have first hand knowledge of scaphocephaly. However,

I can understand the difficulty in deciding what to do in this

situation even without considering finances.

I assume you would like an honest opinion or you would not have

posted. Firstly, most parents are concerned with headshapes that

produce non-symmetrical appearances. You child's head is symmetrical

and the condition can only improve, not worsen.

Secondly, I understand how you would be torn between your decision.

The best advice I could offer would be that if you are concerned

then you should pursue treatment. You are his voice at the moment.

I sense that you might be concerned with the, I should have's and

why didn't we type scenario.

Thirdly, I do know that DOC specializes in a scaphocephaly helmet. I

would contact them and look at before and after pictures. Talk to an

orthotist to see what their experience has to offer. Basically speak

to anyone in the know and make an " informed decision " .

Fourthly, helmets can produce some marvelous results. In the end you

could say you did all that you could.

Would I lose sleep tonight if you decided not to band? Absolutely

not. This is your decision and your decision alone. Bottom line. If

this is going to torment you down the road then I would look at the

helmet. Your well being is just as important as his at the moment.

Make your deicision and move on, do not let this consume you.

All the best

Sponagle

--- In Plagiocephaly , " Lumetta " <Lumetta@n...>

wrote:

> Please forgive me for my whining, questions, and indecisiveness.

I am just

> really struggling here.

>

> I'm attaching a top view pic of Lorenzo's head. It's a month old,

but his

> head looks the same still. What are your honest opinions? At

church

> yesterday, no one could understand why he needs a helmet. They

think that

> his head looks just fine. They don't understand why I would want

to fight

> insurance. I've heard so many comments like " Well, I've seen lots

of

> babies' heads that look like that. What's the big deal? "

>

> To pay for a DOC band out of pocket would be a huge sacrifice for

us. I

> stay at home and homeschool our children, while my dh is working

on his

> Master of Divinity degree to be a pastor. He has a job that just

makes ends

> meet for our family of 6. I don't even know where the money would

come

> from.

>

> But I'm willing to make the sacrifice IF it is worth it. Now I

just need to

> know if it's worth it. Do you think the sacrifice for the DOC

band would be

> justified? None of my friends think it is. Of course, they

aren't educated

> about plagio either. I need the opinions of parents like

yourselves. What

> do you think?

>

> God Bless,

> in KY

>

> Wife to Bert

> Mama to Isabelle (5), Carolina (4), (3) and Lorenzo (7

mos.)

April 28, 2003

Hi ,

I just want to second everything that Beck said. I hope you find a

solution soon.

--- In Plagiocephaly , " Lumetta " <Lumetta@n...>

wrote:

> Please forgive me for my whining, questions, and indecisiveness. I

am just

> really struggling here.

>

> I'm attaching a top view pic of Lorenzo's head. It's a month old,

but his

> head looks the same still. What are your honest opinions? At

church

> yesterday, no one could understand why he needs a helmet. They

think that

> his head looks just fine. They don't understand why I would want

to fight

> insurance. I've heard so many comments like " Well, I've seen lots

of

> babies' heads that look like that. What's the big deal? "

>

> To pay for a DOC band out of pocket would be a huge sacrifice for

us. I

> stay at home and homeschool our children, while my dh is working on

his

> Master of Divinity degree to be a pastor. He has a job that just

makes ends

> meet for our family of 6. I don't even know where the money would

come

> from.

>

> But I'm willing to make the sacrifice IF it is worth it. Now I

just need to

> know if it's worth it. Do you think the sacrifice for the DOC band

would be

> justified? None of my friends think it is. Of course, they aren't

educated

> about plagio either. I need the opinions of parents like

yourselves. What

> do you think?

>

> God Bless,

> in KY

>

> Wife to Bert

> Mama to Isabelle (5), Carolina (4), (3) and Lorenzo (7 mos.)

April 28, 2003

Hey -

This is all hard stuff to digest isn't it?? We just want to hold that precious little gift from heaven in your arms and enjoy him 24/7...yet we get thrown curves (no pun intended) sometimes...

Hold on to your faith...keep on praying...trust God to give you and your husband and your church family confirmation...I got the same reaction initially from the family, friends, church members I spoke with...but the more I have educated them, the more they see what Noah's head is doing...note: we aren't dealing with scaph...but the bottom line is the same...

Prov. 3:5-6

Hope this helps...hang in there!!

U.

Mom to Noah (5 mo. today)

waiting ins. approval for DOCband

Atlanta Lumetta <Lumetta@...> wrote:

Please forgive me for my whining, questions, and indecisiveness. I am justreally struggling here.I'm attaching a top view pic of Lorenzo's head. It's a month old, but hishead looks the same still. What are your honest opinions? At churchyesterday, no one could understand why he needs a helmet. They think thathis head looks just fine. They don't understand why I would want to fightinsurance. I've heard so many comments like "Well, I've seen lots ofbabies' heads that look like that. What's the big deal?"To pay for a DOC band out of pocket would be a huge sacrifice for us. Istay at home and homeschool our children, while my dh is working on hisMaster of Divinity degree to be a pastor. He has a job that just makes endsmeet for our family of 6. I don't even know where the money would comefrom.But I'm willing to make the sacrifice IF it is worth it. Now I just need toknow if it's worth it. Do you think the sacrifice for the DOC band would bejustified? None of my friends think it is. Of course, they aren't educatedabout plagio either. I need the opinions of parents like yourselves. Whatdo you think?God Bless, in KYWife to BertMama to Isabelle (5), Carolina (4), (3) and Lorenzo (7 mos.)For more plagio info

April 29, 2003

laura, again I'm going to tell you that Lorenzo's head looks just

like 's did before treatment began. I have posted before how ppl

commented to me that her head was beautiful, why were we putting her

through this. Well, when the band came off....It was amazing to

EVERYONE!! Great improvement from before. Ultimitately it is going

to be your decision on whether to band him or not. Whatever you do

decide to do, I will be right here to support your decision. Just

let us know!

Dustie

--- In Plagiocephaly , " Lumetta " <Lumetta@n...>

wrote:

> Please forgive me for my whining, questions, and indecisiveness. I

am just

> really struggling here.

>

> I'm attaching a top view pic of Lorenzo's head. It's a month old,

but his

> head looks the same still. What are your honest opinions? At

church

> yesterday, no one could understand why he needs a helmet. They

think that

> his head looks just fine. They don't understand why I would want

to fight

> insurance. I've heard so many comments like " Well, I've seen lots

of

> babies' heads that look like that. What's the big deal? "

>

> To pay for a DOC band out of pocket would be a huge sacrifice for

us. I

> stay at home and homeschool our children, while my dh is working on

his

> Master of Divinity degree to be a pastor. He has a job that just

makes ends

> meet for our family of 6. I don't even know where the money would

come

> from.

>

> But I'm willing to make the sacrifice IF it is worth it. Now I

just need to

> know if it's worth it. Do you think the sacrifice for the DOC band

would be

> justified? None of my friends think it is. Of course, they aren't

educated

> about plagio either. I need the opinions of parents like

yourselves. What

> do you think?

>

> God Bless,

> in KY

>

> Wife to Bert

> Mama to Isabelle (5), Carolina (4), (3) and Lorenzo (7 mos.)

April 29, 2003

,

Well shoot. I've just read through all the posts thus far including your

responses and I still don't know what to say. You're definitely not whining -

not

at all! Hey, we're here to listen and offer support!

What can I say? His head looks good from the top. Do you have some side

view shots? Unfortunately I don't have much experience with scaphy - only

what I've read and learned about here. The absence of assymetries really

makes the decision just that much harder. Add to that the high cost and the 11

hour trip - wow - very tough call.

Dang - I wish you weren't going through this and I REALLY wish I had

some great advice. I wish I lived in the city where you are considering getting

treatment - I would pick you up at the airport and drive you to CT every time

personally! I agree with the others. Keep praying and keep the faith. And

please know this - we will support you 100% whether you decide to band or

not to band.

God bless you!

Marci (Mom to )

Oklahoma

--- In Plagiocephaly , " Lumetta " <Lumetta@n...>

wrote:

> Please forgive me for my whining, questions, and indecisiveness. I am just

> really struggling here.

>

> I'm attaching a top view pic of Lorenzo's head. It's a month old, but his

> head looks the same still. What are your honest opinions? At church

> yesterday, no one could understand why he needs a helmet. They think

that

> his head looks just fine. They don't understand why I would want to fight

> insurance. I've heard so many comments like " Well, I've seen lots of

> babies' heads that look like that. What's the big deal? "

>

> To pay for a DOC band out of pocket would be a huge sacrifice for us. I

> stay at home and homeschool our children, while my dh is working on his

> Master of Divinity degree to be a pastor. He has a job that just makes ends

> meet for our family of 6. I don't even know where the money would come

> from.

>

> But I'm willing to make the sacrifice IF it is worth it. Now I just need to

> know if it's worth it. Do you think the sacrifice for the DOC band would be

> justified? None of my friends think it is. Of course, they aren't educated

> about plagio either. I need the opinions of parents like yourselves. What

> do you think?

>

> God Bless,

> in KY

>

> Wife to Bert

> Mama to Isabelle (5), Carolina (4), (3) and Lorenzo (7 mos.)

May 29, 2003

Hello Ellen,

If you Haven " t read all the medical histories on here please do, as

there are many on here with great success stories from AP. I am just one of many

but worth it?? I was bed-ridden and could not walk or only afew feet. I now at

55 have a life and do just about everything. I had RA, and Skin Lupus now

just the skin lupus. I have to watch afew things now especially the sun and

bacterial infections, but I do everything have 3 little dogs and take care of my

blind 84 yr. old mother. and keep a house. I also have no pain and all my blood

tests are normal not bad for being on this for 16 yrs this Aug/ I still

have to watch things but worth it>>>> YES Just My View from Ohio. I wish

You all this success and to be this pain free

May 29, 2003

Dear

I do know there are some encouraging AP success stories,

and--yes--I have read several. Don't know now what prompted

me to ask that question.

Thanks for the well-wishes!

Ellen

Re: rheumatic Is it worth it?

Hello Ellen,

If you Haven " t read all the medical histories on here please do, as

there are many on here with great success stories from AP. I am just one of many

but worth it?? I was bed-ridden and could not walk or only afew feet. I now at

55 have a life and do just about everything. I had RA, and Skin Lupus now just

the skin lupus. I have to watch afew things now especially the sun and bacterial

infections, but I do everything have 3 little dogs and take care of my blind 84

yr. old mother. and keep a house. I also have no pain and all my blood tests are

normal not bad for being on this for 16 yrs this Aug/ I still have to watch

things but worth it>>>> YES Just My View from Ohio. I wish You all this

success and to be this pain free

May 31, 2003