Re: I just wanna cry

January 5, 2009

Antonia, maybe you should just take a step back and re-evaluate

your entire situation. I’m certainly no expert, but you still have

plenty of time to get it right. We didn’t start treatment with our

son until he was 15 months old. You want to see crazy brachy??? You

can see his pictures in the “S” file (last page, 4 grainy pictures

of our little guy Samson). We needed two bands because he was SO much

older than your son. We adopted from China and had no choice but to start

LATE in the game.

My two cents? It’s all about your son right now.

Forget silly thoughts that you could have been a better mom (are you

kidding???). DEFINITELY forget the rude family comments. And yeah, by

the sounds of it would probably be nice if your Hanger office was a little more

professional – but who really cares? Not your son! Look

forward and not back, and just figure out your best path, from here and now, to

get your son’s head rounded out the most. Maybe that will be to ask

that a new band be fitted for your son, as the first one has caused nothing but

problems?

Still plenty of time to get things corrected, so don’t

panic. Good luck and think positive, and of course never give up.

These bands do work – you just need to put your time in.

All the best, (Samson’s Dad)

From:

Plagiocephaly [mailto:Plagiocephaly ] On

Behalf Of Antonia

Sent: Monday, January 05, 2009 6:45 PM

Plagiocephaly

Subject: I just wanna cry

Well I could just cry. Or maybe throw

something. I posted pics from

today under Plagio babies J title Jayden right now. They are pics I

took of him in the bath today. The sight of his head makes me cry. It

looks terrible. It doesnt even look like he's had a helmet on!!!! In

fact before he was just severely bracy at 95%. Now he looks as if

there is some plagio going on too on one side. I left a message

Thursday and Friday for the ortho at Hanger. I guess they just moved

to a new office so I hope to hear from them tomorrow. Ladies I just

want to lose it!!! I have dealt with family telling me what an awful

mom I am for subjecting my son to the helmet. All the blisters,

sores, boils and staph infections. He finally has stopped getting

them and has had a month of wear with no issues, but I look at his

head and I can tell without any measurements he has stayed the same

if not gotten worse. Even if I could get to CT, I literally have $0

to pay out of pocket. I feel like the ortho office I'm working with

isnt as professional as they should be as they even went as far as to

email me through this board. I had never given them my email address.

They just recognized me through my posts. I know this is the internet

and I havent posted anything to be rude to the Ortho I simply shared

what Jayden went through. Should I ask that a new helmet be made

being that his head looks so terrible and he hasnt gotten any

correction? I can tell he's still severe. His head looks wider than

it is long. ANd just his pics alone I'm sure you can all feel my

pain. I feel like an awful mom for not getting treatment prior to 7

months because the neuro surgeon we first saw said no one in colorado

did helmets. I feel like a bad mom for putting my son down enough to

even cause this. My daughter never had this issue. I blame the swing

that goes from side to side. He loved that thing as a tiny baby.

Someone please just give me some guidance. Is it even worth trying to

see the same clinic at this point being that they made me feel so

uncomfortable by contacting off this message board? If its not worth

it am I entitled to be refunded the money that I paid for the

deductible??? I feel sick right now having jut looked at my sons

pics. There really isnt any other good ortho's in colorado. I have

researched and researched and the only other name I could come up

with was a Greg Smits and the few parents who went with him said it

wasnt worth it and that he lacked experience. I'm running out of

correction time here.

January 5, 2009

Antonia wrote:

> I have dealt with family telling me what an awful

> mom I am for subjecting my son to the helmet. All the blisters,

> sores, boils and staph infections.

First off, tell them to get stuffed. Doing the right thing is often not

the same as doing the easy thing and they should be supporting you, not

tearing you down for trying to do right by your son.

Second, I'm no expert, but I'd have to think that all those problems

suggest a poor fit on the helmet, and a competent ortho would have made

corrections to prevent and/or reduce these problems right away.

> if not gotten worse. Even if I could get to CT, I literally have $0

> to pay out of pocket.

Talk to your pediatrician and ask if there are any aid agencies or funds

in your area to help pay for things like these, or if he/she knows who

else might know. Can't hurt to ask. Failing that, a good ortho might

also be willing to set up some sort of payment plan for you that will at

least spread the hurt out over a longer time frame.

> I feel like the ortho office I'm working with

> isnt as professional as they should be as they even went as far as to

> email me through this board. I had never given them my email address.

That is, indeed, seriously unprofessional.

It sounds like you don't have a lot of options in your area, so I don't

really have any advice for you on that, but it seems to me that

parenting is hard enough without finding things to feel bad over (or

letting other people talk you into feeling bad over.) Babies have to be

put down sometimes, and for some babies this isn't a problem and some it

is. You're doing what you can to try to address it. That it's not

working isn't for any lack of effort or love on your part, and the fact

that you're here trying to figure out what to do next shows that you're

a *good* parent. Hang in there, don't let anyone give you crap, and just

keep pushing for what you and your son need. You'll get there.

-Suzanne

January 6, 2009

Dear Antonia,

I am so sorry to hear that things have just gone from bad to worse :-(

and that you don't have too many options. But 7 months is definitely NOT too

late to get great improvement. I wonder if there is any way to get your money

back from Hanger and use it for a doc band? Maybe your pediatrician could help

you to go through proper channels to do this since they obviously know what

lengths you went to in order to get your son in a band (since they treated the

boils, infections). Hanger should have to give you your money back, if not more

for malpractice if his head has gotten worse!! ( I know that this might take

time, but maybe you could explain the situation and pay a little at a time as

someone else suggested)

Please don't ever think you are a bad Mom, just one who wants so badly

for her to be happy later in life. But try to remember that this will pass and

just keep fighting for your son!!

Mom to McKenna

> > I have dealt with family telling me what an awful

> > mom I am for subjecting my son to the helmet. All the

> blisters,

> > sores, boils and staph infections.

>

> First off, tell them to get stuffed. Doing the right thing

> is often not

> the same as doing the easy thing and they should be

> supporting you, not

> tearing you down for trying to do right by your son.

>

> Second, I'm no expert, but I'd have to think that

> all those problems

> suggest a poor fit on the helmet, and a competent ortho

> would have made

> corrections to prevent and/or reduce these problems right

> away.

>

> > if not gotten worse. Even if I could get to CT, I

> literally have $0

> > to pay out of pocket.

>

> Talk to your pediatrician and ask if there are any aid

> agencies or funds

> in your area to help pay for things like these, or if

> he/she knows who

> else might know. Can't hurt to ask. Failing that, a

> good ortho might

> also be willing to set up some sort of payment plan for you

> that will at

> least spread the hurt out over a longer time frame.

>

> > I feel like the ortho office I'm working with

> > isnt as professional as they should be as they even

> went as far as to

> > email me through this board. I had never given them my

> email address.

>

> That is, indeed, seriously unprofessional.

>

> It sounds like you don't have a lot of options in your

> area, so I don't

> really have any advice for you on that, but it seems to me

> that

> parenting is hard enough without finding things to feel bad

> over (or

> letting other people talk you into feeling bad over.)

> Babies have to be

> put down sometimes, and for some babies this isn't a

> problem and some it

> is. You're doing what you can to try to address it.

> That it's not

> working isn't for any lack of effort or love on your

> part, and the fact

> that you're here trying to figure out what to do next

> shows that you're

> a *good* parent. Hang in there, don't let anyone give

> you crap, and just

> keep pushing for what you and your son need. You'll get

> there.

>

> -Suzanne

January 6, 2009

Antonia,I'm so very sorry you're feeling this way, but I agree with the others that you are doing the best thing for your son. Do not let anyone tell you differently!We have a somewhat similar situation, though ours is much less heartbreaking. We started out with a StarBand here in Atlanta when our son (the bottom twin) was a little over five months old. He has torticollis and severe plagiocephaly. After about three weeks of adjusting and tweaking we just never could get his helmet to fit properly. It would slide onto 's face and cause all sorts of bad red marks. Our ortho, who was great, said that sometimes you just get a helmet where the " magic " is lost. He offered to get us a new StarBand and start fresh. Well, during that three-week period of worrying that we were doing more harm than good, I was introduced to this site. I read posts like a fiend and studied all the different options. I decided the smaller, funny shape of the DocBand was what I wanted to do and declined the second StarBand. Please note that I don't think the StarBand is a bad product at all—it just wasn't working for our .

Anyway, I was so happy to learn about the DocBand. Unfortunately, there isn't a CT office anywhere near here. The closest is Charlotte, NC, which is about a 4-4.5 hour drive each way. We thought about it and decided to go for it regardless of the distance. got his DocBand yesterday, just shy of 7 months, and so far all is good. They are thinking between 10-13 weeks for him and I am counting down the days just like I did waiting for my boys to get here.

Since we are so far away and because our insurance is not paying for either the StarBand we are not using or the DocBand we just got, CT shared several options to help us out. CT has a payment program where you pay interest free for 18 months. I want to say it's like $119 or $178 each month. It still hurts, but not nearly as much. They also introduced us to a program called Angel Flight, a group of

volunteer pilots who will bring you great distances for medical care

for FREE. We haven't done this yet, but I'm glad to know such a program

is out there. If you are in Colorado, the closest clinics to you are in

Phoenix, Las Vegas and Dallas.I hope this email helps make you feel like you do have more options than just what happens to be local. It's a big commitment on so many levels—time, money, emotions. I actually had to go part time at work in order to be able to take my little guy. It's going to be a struggle for a while here, but I know in my heart of hearts that this is the right thing to do, not the easy thing, but the right thing.

I wish you the best of luck. Please keep us in the loop!On Mon, Jan 5, 2009 at 8:44 PM, Antonia <mommy2jaylina@...> wrote:

Well I could just cry. Or maybe throw something. I posted pics from