Hello everyone!

[Guest guest]

I really do think about all of you every day!! I spent so much time

getting support (and hopefully giving a little back) from all of you.

I do miss everyone but as I said, it is good to be busy.

I'm so happy to hear about your iris! It really is my sign of hope

and renewal. A photo of my iris is my background on my computer

screen so I look at it everyday.

You are in my prayers too. I can't begin to express my gratitude to

all of you who have given me so much support.

I hope you are hanging in there Dede... You are an inspiration.

>

> ~

> So glad to hear from you ! ! I have been thinking

> of you lots. Remember the Iris I got from my Dad's

> yard, back in Oct/Nov, well, I put it in a pot and

> in my dining area by a sliding glass door, well, girl....

> That precious Iris has already bloomed once! !

> about 2 weeks ago. I was amazed ! ! It was a very

> faint purple one, and it was so delicate and beautiful.

> It sounds so good to hear you are moving in a positive

> direction. Patients and dilligence are huge with BI

> illness. Keep in touch, and you are in my prayers girl !

> Love Dede

>

>

>

> **************The year's hottest artists on the red carpet at the

Grammy

> Awards. Go to AOL Music.

> (http://music.aol.com/grammys?NCID=aolcmp00300000002565)

>

[Guest guest]

, thank you for letting us know that you are getting better. We really seem to be bonded to each other, because I think about all of the ladies too. This is nice, because knowing that someone cares helps us to heal.

Sending love always........Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

Hello Everyone!

Yes.... I'm still alive and kicking...Life got very busy for me after Christmas and it has continued to doso but it is a good busy. I think about all of you everyday... I really do.I'm still seeing the rheumy...still have a dx of lupus, sjogren's andautoimmune thyroid disease. My TSH was slightly higher last time Iwent to the endo (remember it was 0.05) so I'm going to wait now tosee him again until May.I think my dry mouth from Sjogren's is better. I still have somegland and ear problems but I'm encouraged.I started seeing a Chiropractor who is also very into naturopathy. Hewants me to begin taking a supplement to support my adrenals. He isalso looking at other natural supplements and therapies to help me getbetter. I feel so fortunate to have found him.Still taking all my supplements. I get a massage once a week whichreally helps.Life feels good right now. I'm not "well" yet but I'm heading in theright direction.As my husband and I often say..."At least my implants are gone... Icouldn't be even this far if I still had them".I'll check in when I can. You are all so wonderful.

[Guest guest]

Welcome! I hope Tyler's transition to his new " hat " is an easy one!

Jake-20m (tort resolved/rt plagio/DOCBand)

Jordan-4

>

> My wife (katie.hudak) and I joined the group today after our son,

> Tyler, was fitted with his Hanger Cranial Band today. He's currently

> seeing Doug Reber in the Hanger office in Wall, New Jersey. Tyler is

> diagnosed with plagio and torticollis. We were very apprehensive

> about the whole process and had mixed emotions going into today.

> Thankfully we were able to find this group of parents going

> through the same things we are!

>

> We look forward to reading and sharing experiences with everyone.

>

[Guest guest]

Thanks! Day 1 is down and it went smoothly. He definitely sweat a lot though.

Sent from my Verizon Wireless BlackBerry

Re: Hello Everyone!

Welcome! I hope Tyler's transition to his new " hat " is an easy one!

Jake-20m (tort resolved/rt plagio/DOCBand)

Jordan-4

>

> My wife (katie.hudak) and I joined the group today after our son,

> Tyler, was fitted with his Hanger Cranial Band today. He's currently

> seeing Doug Reber in the Hanger office in Wall, New Jersey. Tyler is

> diagnosed with plagio and torticollis. We were very apprehensive

> about the whole process and had mixed emotions going into today.

> Thankfully we were able to find this group of parents going

> through the same things we are!

>

> We look forward to reading and sharing experiences with everyone.

>

[Guest guest]

Hi Rich and . I am glad day one went ok. Your son will adjust

to the change in body temp with the band in the next few days and he

won't continue to sweat so much.

Good luck and keep in touch.

Becky, repo moderator

, repo grad

>

> My wife (katie.hudak) and I joined the group today after our son,

> Tyler, was fitted with his Hanger Cranial Band today. He's

currently

> seeing Doug Reber in the Hanger office in Wall, New Jersey. Tyler

is

> diagnosed with plagio and torticollis. We were very apprehensive

> about the whole process and had mixed emotions going into today.

> Thankfully we were able to find this group of parents going

> through the same things we are!

>

> We look forward to reading and sharing experiences with everyone.

>

[Guest guest]

We just got our DOC band today also!

Welcome from " Northern NJ " , we're in Flemington area.

What we're doing, is a fantastic thing, my daughter is 5 months old and

scaphy.

Good luck to Tyler and I hope your night is better than ours has been;)

[Guest guest]

My baby was sweating for the first 2 days, but now he is doing great!! Good Luck and I am sure you won't regret it.richhudak@... wrote: Thanks! Day 1 is down and it went smoothly. He definitely sweat a lot though. Sent from my Verizon Wireless BlackBerry Re: Hello Everyone!Welcome! I hope Tyler's transition to his new "hat" is an easy one!Jake-20m (tort resolved/rt plagio/DOCBand)Jordan-4>> My wife (katie.hudak) and I joined the group today after our son,> Tyler, was fitted with his Hanger

Cranial Band today. He's currently> seeing Doug Reber in the Hanger office in Wall, New Jersey. Tyler is> diagnosed with plagio and torticollis. We were very apprehensive> about the whole process and had mixed emotions going into today. > Thankfully we were able to find this group of parents going> through the same things we are!> > We look forward to reading and sharing experiences with everyone.>------------------------------------For more plagio info

[Guest guest]

Hi Lou Ann,

welcome to the group. I haven't heard of AOI before, do they make

their own helmet? I see that it has a chin strap - that usually means

the band is passive band. Do you know if this is the case? A passive

band is a symmetric shell to grow into, whereas an active band puts

gentle pressure on the prominent areas of the skull to grow into. If

that is the case you probably want to be extra diligent about trying

to keep it on him for 23 hours. I don't know what the neck issue was

you were explaining but it sounds like it fits better now. For the

heat rash you can use hydrocortizone cream. Let it dry and put the

helmet back on. Check on it, but if it is just heat rash it should

get better even with the band on. Just keep it clean and dry and keep

him as cool as possible. Obviously if it isn't improving don't keep

the helmet on. My daughter spent most of the time in her band wearing

only a diaper and a onsie because otherwise she was too warm.

I can understand about not being able to do the 6 hour drive, so

hopefully this helmet will work well. If you're seeing improvement

already that is a good sign.

Keep us posted on Zachary's progress.

-christine

sydney 2.5 yrs starband grad

>

> Hi,

>

> My name is Lou Ann. My son Zachary is 6.5 months old and has Trisomy

> 21. He has had his helmet for approximately 3 weeks. He honestly has

> worn it about a week of that time. Even though he's not been wearing

> it 23 hours a day yet I've already seen improvement.

>

> I've put up some pictures and included in these his results from Star

> cranial in Dallas Texas. We decided to not go with Star just because

> of the distance we had to travel to get to them. At that time we

> were living in Odessa Texas and it was a 6 hour drive each way. This

> was not practical, especially since neither myself or my husband have

> any family in Texas and my husband's boss would not let him off work

> to drive with me. So my son and I came back to my home town of Selma

> IN and are currently having his band/helmet done at Advanced Orthopro

> Inc in Indianapolis IN.

>

> As you can see in his pics Zachary has torticollis along with his

> plagiocephaly. We are currently working on getting him a PT to help

> resolve this.

>

> Issues Zack has had with the helmet include having to go back 5 days

> in a row for adjustments for the red marks on his head. Two

> different ortho's at AOI told me that we could not alter the neck of

> his helmet because he needed the support. I kept going back till I

> got ortho number three that cut it up about 2 inches on visit number

> six. My son could not wear the helmet for extended periods because

> it hurt his neck so badly. Now he can move his head freely and is

> more comfy and will start wearing it for extended periods. (After his

> current heat rash fades)

>

> It has helped me greatly to read your posts and see what other

> parent's think. I'll be adding my thoughts and experiences, hoping

> to help someone else.

>

> Thank you

> Lou Ann

>

[Guest guest]

Hello,

My 10.5 month old daughter has been in a helmet from AOI in

Indianapolis for 4 months. Yes, they do make their own helmets, but

as far as being active or passive, there is so much mis-use of those

terms that one person's definition is always different than someone

else's. I would say it is active - the helmet holds on the prominent

points and the foam is shaved out to allow for growth in the flat

areas. We had a week or so where I had to take her 3 times in one

week for adjustments because she was really growing - since then her

growth has slowed down so I don't have to take her as often. Lou

Ann - is the " helmet guy " there, so you might try to see him

when you can, although I think everyone else I've seen has been good

as well. Even though they don't do helmets all day like DOC Band,

they have been at this a long time and we've seen really great

results, so I've been pleased with my experience with them. Our

neurosurgeon said we could " graduate " next week, although my daughter

still has room in the helmet so we might leave it on a bit longer to

see if we can eek out a bit more correction.

> >

> > Hi,

> >

> > My name is Lou Ann. My son Zachary is 6.5 months old and has

Trisomy

> > 21. He has had his helmet for approximately 3 weeks. He honestly

has

> > worn it about a week of that time. Even though he's not been

wearing

> > it 23 hours a day yet I've already seen improvement.

> >

> > I've put up some pictures and included in these his results from

Star

> > cranial in Dallas Texas. We decided to not go with Star just

because

> > of the distance we had to travel to get to them. At that time we

> > were living in Odessa Texas and it was a 6 hour drive each way.

This

> > was not practical, especially since neither myself or my husband

have

> > any family in Texas and my husband's boss would not let him off

work

> > to drive with me. So my son and I came back to my home town of

Selma

> > IN and are currently having his band/helmet done at Advanced

Orthopro

> > Inc in Indianapolis IN.

> >

> > As you can see in his pics Zachary has torticollis along with his

> > plagiocephaly. We are currently working on getting him a PT to

help

> > resolve this.

> >

> > Issues Zack has had with the helmet include having to go back 5

days

> > in a row for adjustments for the red marks on his head. Two

> > different ortho's at AOI told me that we could not alter the neck

of

> > his helmet because he needed the support. I kept going back till

I

> > got ortho number three that cut it up about 2 inches on visit

number

> > six. My son could not wear the helmet for extended periods

because

> > it hurt his neck so badly. Now he can move his head freely and

is

> > more comfy and will start wearing it for extended periods. (After

his

> > current heat rash fades)

> >

> > It has helped me greatly to read your posts and see what other

> > parent's think. I'll be adding my thoughts and experiences,

hoping

> > to help someone else.

> >

> > Thank you

> > Lou Ann

> >

>

[Guest guest]

AOI does make their own helmet. So far my experience with them would not get them a glowing recommendation but neither would it get them a bad one. The band is an active band. I'm not quite sure why they gave it an extra chin strap. It really doesn't need it to stay in place. But that pic was our first day in it and at that time I didn't know that. lawoman1729@...Lou Ann Fugate

[Guest guest]

Hello Lou Ann,

My son has torticollis too and we are currently receiving PT once per week and

family

training twice per month. My suggestion for you, if you are still working on

getting your

son a PT, is to contact the Early Intervention Program. I did it and it took us

only a couple

of weeks to start the PT (Its over a month since then and I am seeing some

improvement

in neck).

We will see a Pediatric Neurosurgeon next week, I hope we can start soon working

on

problem. You can see his pictures, they are posted at the end of the

list.

Good luck!

Paola

, 3 months old

> > >

> > > Hi,

> > >

> > > My name is Lou Ann. My son Zachary is 6.5 months old and has

> Trisomy

> > > 21. He has had his helmet for approximately 3 weeks. He honestly

> has

> > > worn it about a week of that time. Even though he's not been

> wearing

> > > it 23 hours a day yet I've already seen improvement.

> > >

> > > I've put up some pictures and included in these his results from

> Star

> > > cranial in Dallas Texas. We decided to not go with Star just

> because

> > > of the distance we had to travel to get to them. At that time we

> > > were living in Odessa Texas and it was a 6 hour drive each way.

> This

> > > was not practical, especially since neither myself or my husband

> have

> > > any family in Texas and my husband's boss would not let him off

> work

> > > to drive with me. So my son and I came back to my home town of

> Selma

> > > IN and are currently having his band/helmet done at Advanced

> Orthopro

> > > Inc in Indianapolis IN.

> > >

> > > As you can see in his pics Zachary has torticollis along with his

> > > plagiocephaly. We are currently working on getting him a PT to

> help

> > > resolve this.

> > >

> > > Issues Zack has had with the helmet include having to go back 5

> days

> > > in a row for adjustments for the red marks on his head. Two

> > > different ortho's at AOI told me that we could not alter the neck

> of

> > > his helmet because he needed the support. I kept going back till

> I

> > > got ortho number three that cut it up about 2 inches on visit

> number

> > > six. My son could not wear the helmet for extended periods

> because

> > > it hurt his neck so badly. Now he can move his head freely and

> is

> > > more comfy and will start wearing it for extended periods. (After

> his

> > > current heat rash fades)

> > >

> > > It has helped me greatly to read your posts and see what other

> > > parent's think. I'll be adding my thoughts and experiences,

> hoping

> > > to help someone else.

> > >

> > > Thank you

> > > Lou Ann

> > >

> >

>

[Guest guest]

We are having a horrible time getting a good fit for Zack. My

problem is with the neck of the helmet. His little neck is flat also

and the helmet is curved, thus putting a lot of pressure on his

neck. First the helmet was too long at the neck area and restricted

his movement, now it's just creating a pressure point that after 2

hours Wednesday bruised his neck.

When I went into AOI Thursday to show them and have them adjust it,

the ortho Mike got pretty pissy with me. He however did the

adjustment because I wasn't leaving without one. I'm getting ready

to put the helmet back on Zack.

That was adjustment number 10 on Thursday. I've been telling the

ortho's that Zack has low muscle tone and spends 90% of his day

laying or supported and that the helmet is digging into his neck.

They tell me that of course if he's putting pressure on it that it

will cause red spots and even bruising. MY POINT EXACTLY! Fix it so

it doesn't is what I keep telling them but they aren't doing it.

I've tried propping him with soft blankets and all sorts of different

foam things. Any ides on what else we can try or how I can get

across to ortho's that aren't listening that they are hurting my

son? At this rate he will never " get used " to it as they keep

telling me he will.

Thanks in advance

Lou Ann

> > >

> > >

> > >

> > >

> > > >

> > > > Hi,

> > > >

> > > > My name is Lou Ann. My son Zachary is 6.5 months old and has

> > Trisomy

> > > > 21. He has had his helmet for approximately 3 weeks. He

honestly

> > has

> > > > worn it about a week of that time. Even though he's not been

> > wearing

> > > > it 23 hours a day yet I've already seen improvement.

> > > >

> > > > I've put up some pictures and included in these his results

from

> > Star

> > > > cranial in Dallas Texas. We decided to not go with Star just

> > because

> > > > of the distance we had to travel to get to them. At that

time we

> > > > were living in Odessa Texas and it was a 6 hour drive each

way.

> > This

> > > > was not practical, especially since neither myself or my

husband

> > have

> > > > any family in Texas and my husband's boss would not let him

off

> > work

> > > > to drive with me. So my son and I came back to my home town

of

> > Selma

> > > > IN and are currently having his band/helmet done at Advanced

> > Orthopro

> > > > Inc in Indianapolis IN.

> > > >

> > > > As you can see in his pics Zachary has torticollis along with

his

> > > > plagiocephaly. We are currently working on getting him a PT

to

> > help

> > > > resolve this.

> > > >

> > > > Issues Zack has had with the helmet include having to go back

5

> > days

> > > > in a row for adjustments for the red marks on his head. Two

> > > > different ortho's at AOI told me that we could not alter the

neck

> > of

> > > > his helmet because he needed the support. I kept going back

till

> > I

> > > > got ortho number three that cut it up about 2 inches on visit

> > number

> > > > six. My son could not wear the helmet for extended periods

> > because

> > > > it hurt his neck so badly. Now he can move his head freely

and

> > is

> > > > more comfy and will start wearing it for extended periods.

(After

> > his

> > > > current heat rash fades)

> > > >

> > > > It has helped me greatly to read your posts and see what

other

> > > > parent's think. I'll be adding my thoughts and experiences,

> > hoping

> > > > to help someone else.

> > > >

> > > > Thank you

> > > > Lou Ann

> > > >

> > >

> >

>

[Guest guest]

If you are still looking for a PT try to find ECI in your area. They are wonderful with my daughter and work on a sliding scale basis so it makes if extremely affordable. They are located all over the US making it even better so if you are still needing PT when you move back to Texas they are there. Another thing that is really good about them is they come to you!

From: Lou Ann <lawoman1729@...>Subject: Re: Hello everyone!Plagiocephaly Date: Saturday, June 21, 2008, 3:52 AM

We are having a horrible time getting a good fit for Zack. My problem is with the neck of the helmet. His little neck is flat also and the helmet is curved, thus putting a lot of pressure on his neck. First the helmet was too long at the neck area and restricted his movement, now it's just creating a pressure point that after 2 hours Wednesday bruised his neck. When I went into AOI Thursday to show them and have them adjust it, the ortho Mike got pretty pissy with me. He however did the adjustment because I wasn't leaving without one. I'm getting ready to put the helmet back on Zack. That was adjustment number 10 on Thursday. I've been telling the ortho's that Zack has low muscle tone and spends 90% of his day laying or supported and that the helmet is digging into his neck. They tell me that of course if he's putting pressure on it that it will cause red spots and even bruising. MY POINT

EXACTLY! Fix it so it doesn't is what I keep telling them but they aren't doing it.I've tried propping him with soft blankets and all sorts of different foam things. Any ides on what else we can try or how I can get across to ortho's that aren't listening that they are hurting my son? At this rate he will never "get used" to it as they keep telling me he will.Thanks in advanceLou Ann > > > > > > > > > > > > > > > >> > > > Hi,> > > > > > > > My name is Lou Ann. My son Zachary is 6.5 months old and has > > Trisomy > > > > 21. He has had his helmet for approximately 3 weeks. He honestly > > has

> > > > worn it about a week of that time. Even though he's not been > > wearing > > > > it 23 hours a day yet I've already seen improvement. > > > > > > > > I've put up some pictures and included in these his results from > > Star > > > > cranial in Dallas Texas. We decided to not go with Star just > > because > > > > of the distance we had to travel to get to them. At that time we > > > > were living in Odessa Texas and it was a 6 hour drive each way. > > This > > > > was not practical, especially since neither myself or my husband > > have > > > > any family in Texas and my husband's boss would not let him off > > work > > > > to drive with me. So my son and I came back to my home town of > > Selma

> > > > IN and are currently having his band/helmet done at Advanced > > Orthopro > > > > Inc in Indianapolis IN.> > > > > > > > As you can see in his pics Zachary has torticollis along with his > > > > plagiocephaly. We are currently working on getting him a PT to > > help > > > > resolve this.> > > > > > > > Issues Zack has had with the helmet include having to go back 5 > > days > > > > in a row for adjustments for the red marks on his head. Two > > > > different ortho's at AOI told me that we could not alter the neck > > of > > > > his helmet because he needed the support. I kept going back till > > I > > > > got ortho number three that cut it up about 2 inches on visit > > number

> > > > six. My son could not wear the helmet for extended periods > > because > > > > it hurt his neck so badly. Now he can move his head freely and > > is > > > > more comfy and will start wearing it for extended periods. (After > > his > > > > current heat rash fades)> > > > > > > > It has helped me greatly to read your posts and see what other > > > > parent's think. I'll be adding my thoughts and experiences, > > hoping > > > > to help someone else.> > > > > > > > Thank you> > > > Lou Ann> > > >> > >> >>

[Guest guest]

Hi Lou Ann-

I'm so sorry to hear about your struggles with the fit. I'm having a

hard time picturing the exact problem though. Is it possible to post

a photo of the back of his neck where it's digging? Is the helmet

Hanger or Star, or is it made directly by AOI? My son has a DOCBand

and it kind of curves outward just a little at the base of his neck.

So it doesn't dig, and it curves with his neck when he tilts his

head back. When he's laying on it, I imagine that it presses into

his skin, but because the edge is curved outward, it's not digging,

he's just resting on the curved part so it doesn't bother him.

I think you mentioned in an earlier post that they had to shorten

the back of the helmet. Was there ever a curved lip on it and if so

is that what they cut off? Maybe they cut too much off and that's

what is making it dig? I'm just not sure. If you can post a picture,

maybe we can get a better of idea of the problem.

Again, I'm sorry, I can tell you're very frustrated and I would be

too. I really hope you can get something figured out.

Jake-21m (tort resolved/rt plagio/DOCBand #2 2 weeks)

Jordan-4

> > > > >

> > > > > Hi,

> > > > >

> > > > > My name is Lou Ann. My son Zachary is 6.5 months old and

has

> > > Trisomy

> > > > > 21. He has had his helmet for approximately 3 weeks. He

> honestly

> > > has

> > > > > worn it about a week of that time. Even though he's not

been

> > > wearing

> > > > > it 23 hours a day yet I've already seen improvement.

> > > > >

> > > > > I've put up some pictures and included in these his

results

> from

> > > Star

> > > > > cranial in Dallas Texas. We decided to not go with Star

just

> > > because

> > > > > of the distance we had to travel to get to them. At that

> time we

> > > > > were living in Odessa Texas and it was a 6 hour drive each

> way.

> > > This

> > > > > was not practical, especially since neither myself or my

> husband

> > > have

> > > > > any family in Texas and my husband's boss would not let

him

> off

> > > work

> > > > > to drive with me. So my son and I came back to my home

town

> of

> > > Selma

> > > > > IN and are currently having his band/helmet done at

Advanced

> > > Orthopro

> > > > > Inc in Indianapolis IN.

> > > > >

> > > > > As you can see in his pics Zachary has torticollis along

with

> his

> > > > > plagiocephaly. We are currently working on getting him a

PT

> to

> > > help

> > > > > resolve this.

> > > > >

> > > > > Issues Zack has had with the helmet include having to go

back

> 5

> > > days

> > > > > in a row for adjustments for the red marks on his head.

Two

> > > > > different ortho's at AOI told me that we could not alter

the

> neck

> > > of

> > > > > his helmet because he needed the support. I kept going

back

> till

> > > I

> > > > > got ortho number three that cut it up about 2 inches on

visit

> > > number

> > > > > six. My son could not wear the helmet for extended

periods

> > > because

> > > > > it hurt his neck so badly. Now he can move his head

freely

> and

> > > is

> > > > > more comfy and will start wearing it for extended periods.

> (After

> > > his

> > > > > current heat rash fades)

> > > > >

> > > > > It has helped me greatly to read your posts and see what

> other

> > > > > parent's think. I'll be adding my thoughts and

experiences,

> > > hoping

> > > > > to help someone else.

> > > > >

> > > > > Thank you

> > > > > Lou Ann

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I called them today on this and the fact that he can't sit in his car

seat with the helmet on. I told them I'm giving them one more chance

to fix it. Our appointment is Monday. I told them if they don't get

it fixed for Zachary then they can fight with the insurance company

over how the refund will be processed because I'll throw the helmet

in the trash and go somewhere else. I'll let you know how that goes.

> > > > >

> > > > > Hi,

> > > > >

> > > > > My name is Lou Ann. My son Zachary is 6.5 months old and

has

> > > Trisomy

> > > > > 21. He has had his helmet for approximately 3 weeks. He

> honestly

> > > has

> > > > > worn it about a week of that time. Even though he's not

been

> > > wearing

> > > > > it 23 hours a day yet I've already seen improvement.

> > > > >

> > > > > I've put up some pictures and included in these his results

> from

> > > Star

> > > > > cranial in Dallas Texas. We decided to not go with Star

just

> > > because

> > > > > of the distance we had to travel to get to them. At that

> time we

> > > > > were living in Odessa Texas and it was a 6 hour drive each

> way.

> > > This

> > > > > was not practical, especially since neither myself or my

> husband

> > > have

> > > > > any family in Texas and my husband's boss would not let him

> off

> > > work

> > > > > to drive with me. So my son and I came back to my home

town

> of

> > > Selma

> > > > > IN and are currently having his band/helmet done at

Advanced

> > > Orthopro

> > > > > Inc in Indianapolis IN.

> > > > >

> > > > > As you can see in his pics Zachary has torticollis along

with

> his

> > > > > plagiocephaly. We are currently working on getting him a

PT

> to

> > > help

> > > > > resolve this.

> > > > >

> > > > > Issues Zack has had with the helmet include having to go

back

> 5

> > > days

> > > > > in a row for adjustments for the red marks on his head.

Two

> > > > > different ortho's at AOI told me that we could not alter

the

> neck

> > > of

> > > > > his helmet because he needed the support. I kept going

back

> till

> > > I

> > > > > got ortho number three that cut it up about 2 inches on

visit

> > > number

> > > > > six. My son could not wear the helmet for extended periods

> > > because

> > > > > it hurt his neck so badly. Now he can move his head freely

> and

> > > is

> > > > > more comfy and will start wearing it for extended periods.

> (After

> > > his

> > > > > current heat rash fades)

> > > > >

> > > > > It has helped me greatly to read your posts and see what

> other

> > > > > parent's think. I'll be adding my thoughts and

experiences,

> > > hoping

> > > > > to help someone else.

> > > > >

> > > > > Thank you

> > > > > Lou Ann

> > > > >

> > > >

> > >

> >

>

[Guest guest]

The curved part is still there. I added a couple of pics showing where the red marks are. Those are two hours after I took the helmet off. Five hours after the marks were still visible but faded. Thanks for your help Lou Annlawoman1729@...Lou Ann Fugate

[Guest guest]

Lou Ann:How old is Zack? I've a couple of questions, but you can email me off list if you want to answer them -- I'll leave it up to you.tnt@... mom to Quinn, born 11/99, DOCband grad 10/00 for long and narrow (scaphocephalic/dolichocephalic head shape)>------- Original Message ------->From : Lou Ann[mailto:lawoman1729@...]>Sent : 6/21/2008 2:20:57 PM>To : Plagiocephaly >Cc : >Subject : RE: Re: Hello everyone!>>I called them today on this and the fact that he can't sit in his car seat with the helmet on. I told them I'm giving them one more chance to fix it. Our appointment is Monday. I told them if they don't get it fixed for Zachary then they can fight with the insurance compan

y over how the refund will be processed because I'll throw the helmet in the trash and go somewhere else. I'll let you know how that goes.> > > > >> > > > > Hi,> > > > > > > > > > My name is Lou Ann. My son Zachary is 6.5 months old and has > > > Trisomy > > > > > 21. He has had his helmet for approximately 3 weeks. He > honestly > > > has > > > > > worn it about a week of that time. Even though he's not been > > > wearing > > > > > it 23 hours a day yet I've already seen improvement. > > > > > > > > > > I've put up some pictures and included in these his results > from > > > Star > > > > > cranial in Dallas Texas. We decided to not go with Star just > > > because > > > > > of the distance we had to travel to get to them. At that > time we > > > > > were living in Odessa Texas and i

t was a 6 hour drive each > way. > > > This > > > > > was not practical, especially since neither myself or my > husband > > > have > > > > > any family in Texas and my husband's boss would not let him > off > > > work > > > > > to drive with me. So my son and I came back to my home town > of > > > Selma > > > > > IN and are currently having his band/helmet done at Advanced > > > Orthopro > > > > > Inc in Indianapolis IN.> > > > > > > > > > As you can see in his pics Zachary has torticollis along with > his > > > > > plagiocephaly. We are currently working on getting him a PT > to > > > help > > > > > resolve this.> > > > > > > > > > Is

sues Zack has had with the helmet include having to go back > 5 > > > days > > > > > in a row for adjustments for the red marks on his head. Two > > > > > different ortho's at AOI told me that we could not alter the > neck > > > of > > > > > his helmet because he needed the support. I kept going back > till > > > I > > > > > got ortho number three that cut it up about 2 inches on visit > > > number > > > > > six. My son could not wear the helmet for extended periods > > > because > > > > > it hurt his neck so badly. Now he can move his head freely > and > > > is > > > > > more comfy and will start wearing it for extended periods. > (After > > > his > > > > > current heat rash fades)

> > > > > > > > > > It has helped me greatly to read your posts and see what > other > > > > > parent's think. I'll be adding my thoughts and experiences, > > > hoping > > > > > to help someone else.> > > > > > > > > > Thank you> > > > > Lou Ann> > > > >> > > >> > >> >>------------------------------------For more plagio info

[Guest guest]

The plastic part in back is beveled. It isn't touching his neck even when he moves around. It is the interior foam that is putting the pressure. It is very thick measuring 3/4 of an inch. I don't have any pics. I was so fed up yesterday that I took it off him without taking any. Thanks everyone for the carseat advice. He is very close to switching to a different car seat because of growth anyway. I'll look into the one's you suggested. Lou Annlawoman1729@...Lou Ann Fugate

[Guest guest]

Hi Barbara!!!

OMG, welcome home!!!! I had no idea you were in the hospital!! and for

that long to boot! I'm glad things are in control for you and you " sound " in

good spirits. At least we are having nice weather! Best wishes for a safe

return home and that things remain in control for you and that you heal

quickly!!!

Heidi in Mass.

In a message dated 10/9/2008 8:49:17 P.M. Eastern Daylight Time,

bcreedon@... writes:

I am finally out of the hosp. after 7 weeks!!!! I am at my

daughter 's house, and will fly home to Fla. Sat.

I still have my broken shoulder in a sling, and the cast on my

left foot. I am doing good walking, and will use my cane always from

now on.

My RA is good now and under control, the flare is gone, thank God.

I was only here in Mass. 2 days when my RA flared so bad. My feet were

so bad, and that is why I fell. The Rheum. in the hosp. increased my

MTX and the other RA meds to the max. Also taking Pred.10 mg. a day.

I am enjoying these 2 days with the babies, 2 1/2 and 1 1/2, then off

for home.

I have thought of all of you often, and have missed chatting here

with everyone. I hope everyone is feeling a little better.

I am off to bed early as I am beat. God Bless all of you.

Hugs to all,

Barbara

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out!

(http://local.mapquest.com/?ncid=emlcntnew00000001)

[Guest guest]

I am finally out of the hosp. after 7 weeks!!!! I am at my

daughter 's house, and will fly home to Fla. Sat.

I still have my broken shoulder in a sling, and the cast on my

left foot. I am doing good walking, and will use my cane always from

now on.

My RA is good now and under control, the flare is gone, thank God.

I was only here in Mass. 2 days when my RA flared so bad. My feet were

so bad, and that is why I fell. The Rheum. in the hosp. increased my

MTX and the other RA meds to the max. Also taking Pred.10 mg. a day.

I am enjoying these 2 days with the babies, 2 1/2 and 1 1/2, then off

for home.

I have thought of all of you often, and have missed chatting here

with everyone. I hope everyone is feeling a little better.

I am off to bed early as I am beat. God Bless all of you.

Hugs to all,

Barbara

[Guest guest]

Barbara,

It is so good to hear from you. Thank your daughter for letting us

know. You have truly been missed.

I am glad the RA is better. Enjoy those babies all that you can in

your short time left there.

Have a SAFE trip home!

God bless you,

Shirley

>

> I am finally out of the hosp. after 7 weeks!!!! I am at my

> daughter 's house, and will fly home to Fla. Sat.

> I still have my broken shoulder in a sling, and the cast on

my

> left foot. I am doing good walking, and will use my cane always

from

> now on.

> My RA is good now and under control, the flare is gone, thank

God.

> I was only here in Mass. 2 days when my RA flared so bad. My feet

were

> so bad, and that is why I fell. The Rheum. in the hosp. increased

my

> MTX and the other RA meds to the max. Also taking Pred.10 mg. a

day.

> I am enjoying these 2 days with the babies, 2 1/2 and 1 1/2, then

off

> for home.

> I have thought of all of you often, and have missed chatting

here

> with everyone. I hope everyone is feeling a little better.

> I am off to bed early as I am beat. God Bless all of you.

> Hugs to all,

> Barbara

>

[Guest guest]

Hi Heidi:

So good to hear from you tonight. Great weather indeed! I love

the Fall!! How are you, and how are things going for you?

I have missed talking with you. Sure hope you are feeling better.

Hugs,

Barbara

>

> Hi Barbara!!!

>

> OMG, welcome home!!!! I had no idea you were in the hospital!! and for

> that long to boot! I'm glad things are in control for you and you

" sound " in

> good spirits. At least we are having nice weather! Best wishes for a

safe

> return home and that things remain in control for you and that you

heal

> quickly!!!

>

> Heidi in Mass.

>

>

> In a message dated 10/9/2008 8:49:17 P.M. Eastern Daylight Time,

> bcreedon@... writes:

>

>

>

>

> I am finally out of the hosp. after 7 weeks!!!! I am at my

> daughter 's house, and will fly home to Fla. Sat.

> I still have my broken shoulder in a sling, and the cast on my

> left foot. I am doing good walking, and will use my cane always from

> now on.

> My RA is good now and under control, the flare is gone, thank God.

> I was only here in Mass. 2 days when my RA flared so bad. My feet were

> so bad, and that is why I fell. The Rheum. in the hosp. increased my

> MTX and the other RA meds to the max. Also taking Pred.10 mg. a day.

> I am enjoying these 2 days with the babies, 2 1/2 and 1 1/2, then off

> for home.

> I have thought of all of you often, and have missed chatting here

> with everyone. I hope everyone is feeling a little better.

> I am off to bed early as I am beat. God Bless all of you.

> Hugs to all,

> Barbara

>

>

>

>

>

>

>

> **************New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out!

> (http://local.mapquest.com/?ncid=emlcntnew00000001)

>

>

>

[Guest guest]

Hi Shirley:

Thanks for your e-mail, and I will enjoy each minute here! It will

be hard to leave for home Sat.!!!!

Hope you are feeling good. Talk soon.

Hugs,

Barbara

> >

> > I am finally out of the hosp. after 7 weeks!!!! I am at my

> > daughter 's house, and will fly home to Fla. Sat.

> > I still have my broken shoulder in a sling, and the cast on

> my

> > left foot. I am doing good walking, and will use my cane always

> from

> > now on.

> > My RA is good now and under control, the flare is gone, thank

> God.

> > I was only here in Mass. 2 days when my RA flared so bad. My feet

> were

> > so bad, and that is why I fell. The Rheum. in the hosp. increased

> my

> > MTX and the other RA meds to the max. Also taking Pred.10 mg. a

> day.

> > I am enjoying these 2 days with the babies, 2 1/2 and 1 1/2, then

> off

> > for home.

> > I have thought of all of you often, and have missed chatting

> here

> > with everyone. I hope everyone is feeling a little better.

> > I am off to bed early as I am beat. God Bless all of you.

> > Hugs to all,

> > Barbara

> >

>

[Guest guest]

So glad to see that you are finally back, Barbara!

I'm very sorry you had to spend so much time in the hospital, but it's

good to hear that your RA is under control.

Not an MD

On Thu, Oct 9, 2008 at 7:48 PM, Barbara <bcreedon@...> wrote:

> I am finally out of the hosp. after 7 weeks!!!! I am at my

> daughter 's house, and will fly home to Fla. Sat.

> I still have my broken shoulder in a sling, and the cast on my

> left foot. I am doing good walking, and will use my cane always from

> now on.

> My RA is good now and under control, the flare is gone, thank God.

> I was only here in Mass. 2 days when my RA flared so bad. My feet were

> so bad, and that is why I fell. The Rheum. in the hosp. increased my

> MTX and the other RA meds to the max. Also taking Pred.10 mg. a day.

> I am enjoying these 2 days with the babies, 2 1/2 and 1 1/2, then off

> for home.

> I have thought of all of you often, and have missed chatting here

> with everyone. I hope everyone is feeling a little better.

> I am off to bed early as I am beat. God Bless all of you.

> Hugs to all,

> Barbara

[Guest guest]

{{{{{BARBARA}}}}} It is so good to hear from you! You certainly have

been through the wringer! 7 weeks is a l-o-n-g time. I'm sure it'll

feel good to finally get home - at least hurricane season is almost

over. Enjoy the grandbabies. They're the best! Be careful and take

care..........Doreen

>

> I am finally out of the hosp. after 7 weeks!!!! I am at my

> daughter 's house, and will fly home to Fla. Sat.

> I still have my broken shoulder in a sling, and the cast on my

> left foot. I am doing good walking, and will use my cane always

> from now on.

> My RA is good now and under control, the flare is gone, thank

> God. I was only here in Mass. 2 days when my RA flared so bad. My

> feet were so bad, and that is why I fell. The Rheum. in the hosp.

> increased my MTX and the other RA meds to the max. Also taking

> Pred.10 mg. a day. I am enjoying these 2 days with the babies, 2

> 1/2 and 1 1/2, then off for home.

> I have thought of all of you often, and have missed chatting

> here with everyone. I hope everyone is feeling a little better.

> I am off to bed early as I am beat. God Bless all of you.

> Hugs to all,

> Barbara

>