Re: what would you do differently?

November 29, 2000

Riley is our second child. Connor was 26 months when she was born

and had terrible ear problems. He finally got tubes when he was 10

months old. When I was pregnant with Riley, all I could think about

was how nervous I was to have to go through all the same " problems "

again like I did with Connor. Then came Riley. Not a single ear

infection, but she has Plagio. I did nothing different the second

time around, but this one had her own things going on.

My point is that each child is different. In your situation, I would

pay more attention to rotating the baby while sleeping and making

sure the muscles in his/her neck can stretch both ways equally. This

time you'll know exactly what to look for right from the get go.

--- In Plagiocephalyegroups, " Kirsten " <johnson_kirsten@h...>

wrote:

> I havent posted here is a while, but my hubby and I are trying to

get

> pregnant again and I have a question. How would those of you

dealing

> w/ positional plagio do it differently? Or wouldnt you?

>

> No matter what anyone tells me, Im convinced that my son ended up

w/

> flattening because I had him sleeping in his car seat carrier for

the

> first 3 months of life (was the only place he would sleep and Dr.

> said was fine). We opted to let him go untreated after many

> specialists opinions, because his case was mild. Now at 14 mos.,

only

> the immediate family notices any flattening. But I do believe his

> head shape will never be perfect. And as you all know, this ordeal

> was very traumatic for us.

>

> Anyway, Im wondering how this should effect a second child.

Obivously

> I wont use the car seat for sleeping, but have any of considered

that

> stomach sleeping might just be worth the risk?? I would appreciate

> some feedback.

>

> Kirsten

November 29, 2000

Kirsten,

Kendra is right about the front carriers, they can be tough to get

the baby out of. But I have a front carrier that is totally

awesome! I found it in Toys R Us, and I will check who makes it.

Basically it is a 2 piece system. There is a hareness that straps

onto you and then there is another piece that comes off and goes onto

the baby like a diaper. Once the baby is in that piece you hook it

to the harness that you are wearing and off you go. It is the most

awesome carrier I have ever seen, or owned!! I was wearing i

very early because I needed 2 hands free to deal with my 3 year old.

But the usual carriers were to big and I had a hard time getting her

out. That is why this one which goes on like a diaper was perfect.

I will check the brand and get back to you.

I also wanted to add, that if a flateness is found on the head after

birth, have it documented by the Ped. We realize now that i was

born with the large flat spot on the back of her head. It is evident

in pictures that were taken at her birth as well as video. That flat

spot never left, but we are going to have to fight with the insurance

company to prove that it was present at birth because it was never

documented. I talked to the Ped that examined i at birth, and he

said it is not normal procedure to document head shape after birth,

only to take the head circumfrence because the majortiy of misshaped

heads correct themselves and it is not unusual to have a weird shaped

head, especially after a vaginal birth.........now he is thinking it

might be a good idea to make note of any flat spots in case something

like this happens again. So basically, just have things documented

so that you don't have to try to rewrite history.

And I agree with Kendra, I would not abandon the back to sleep

campaign, but I would definately make head rotation a part of the

routine as well as tummy time during play. Try to avoid prolonged

periods of being on the back, but if it can't be avoided make sure

that the head does not stay locked in one direction.

Best of Luck to you!!

Jaya Dong

>

> > I havent posted here is a while, but my hubby and I are trying to

get

> > pregnant again and I have a question. How would those of you

dealing

> > w/ positional plagio do it differently? Or wouldnt you?

> >

> > No matter what anyone tells me, Im convinced that my son ended up

w/

> > flattening because I had him sleeping in his car seat carrier for

the

> > first 3 months of life (was the only place he would sleep and Dr.

> > said was fine). We opted to let him go untreated after many

> > specialists opinions, because his case was mild. Now at 14 mos.,

only

> > the immediate family notices any flattening. But I do believe his

> > head shape will never be perfect. And as you all know, this

ordeal

> > was very traumatic for us.

> >

> > Anyway, Im wondering how this should effect a second child.

Obivously

> > I wont use the car seat for sleeping, but have any of considered

that

> > stomach sleeping might just be worth the risk?? I would appreciate

> > some feedback.

> >

> > Kirsten

> >

> > eGroups Sponsor

> [click here]

> >

November 29, 2000

I'd add to avoid bouncy seats, swings, and carseats as much as

possible. Easier said than done, though! Also, try to get more of

the activity quilts/soft books/anything like that to help with tummy-

time. I know a lot of parents use the boppy to help with tummy time;

I think one of those pregnancy comfort wedges would be a great idea

as well. I'd avoid those activity things that have the baby on the

back and kicking/hitting for response - it only adds to the time

babies spend on their backs!

And while we're on the subject of infant toys, have you noticed how

many infant toys there are keeping babies on their backs? Where are

those for tummy-time? I've seen a few in the baby catalogs, but your

avarage parent doesn't get the catalogs. They could make some

electronic interactive blankets (removable electronics for washing)

to help with tummy-time, and when older, the electronic thing can go

into something more age-appropriate. I guess I've just been seeing

way too many commercials this Christmas season.

It would be great if the bouncy seats and swings had warning labels

about spending too much time in them for babies who back sleep. But

then they might lose business......

That's my 2cents. (We're not planning more children, either. I'm 34

and is 39. If we were younger, I'd sure like another!)

Tami

>

> > I havent posted here is a while, but my hubby and I are trying to

get

> > pregnant again and I have a question. How would those of you

dealing

> > w/ positional plagio do it differently? Or wouldnt you?

> >

> > No matter what anyone tells me, Im convinced that my son ended up

w/

> > flattening because I had him sleeping in his car seat carrier for

the

> > first 3 months of life (was the only place he would sleep and Dr.

> > said was fine). We opted to let him go untreated after many

> > specialists opinions, because his case was mild. Now at 14 mos.,

only

> > the immediate family notices any flattening. But I do believe his

> > head shape will never be perfect. And as you all know, this

ordeal

> > was very traumatic for us.

> >

> > Anyway, Im wondering how this should effect a second child.

Obivously

> > I wont use the car seat for sleeping, but have any of considered

that

> > stomach sleeping might just be worth the risk?? I would appreciate

> > some feedback.

> >

> > Kirsten

> >

> > eGroups Sponsor

> [click here]

> >

November 29, 2000

Hi Sue, Kirsten, Jaya, Kendra & everyone,

is our first child and I've thought the same thing about having

another child... what will I do differently?

I agree with Jaya & Kendra that the Back to Sleep effort statistics

speak volumes. I'll put the child to sleep on his/her back and opt

to 1. reposition frequently, 2. insist that the daycare provider do

the same while alternating the side the child is fed on (I nursed

which forced me to alternate sides but he was bottle-fed at

daycare and was predominantly held on the same side during feedings),

and 3. encourage tummy-time much more.

I think just being aware of the possibility puts everyone at a *huge*

advantage!

Sue's point about each child being different & having their own set

of unique challenges is also *so* true! Did anyone see the TV

show " Giddeon's Crossing " a couple of weeks ago where the young girl

was battling breast cancer? Toward the end, Giddeon told the girl

that she brought out the father-figure in him because no matter her

problems, she was perfect to him.

Boy, isn't that the truth! As parents, no matter what challenges our

children face (and *all* children have some challenge whether it be

plagio, ear infections, learning disabilities, or whatever the case

may be) they are truly *perfect* in the eyes & hearts of their

parents. That is our job... providing unconditional love to our

children no matter their challenges... then to diligently do what we

can to assist them with overcoming or improving on the challenge.

Each of our crooked-headed kids are perfect! (Never mind whose

staring at their helmet.)

Just my two cents,

e

November 29, 2000

Congratulations! Just thought I would stick my 2 cents in. I have 4

kids. My youngest, Maggie with plagio. age 7 was a side and

tummy sleeper. No plagio. Mikala age 5 was a tummy sleeper because

she vomited regularly and would absolutely have died from choking on

vomit if not placed on her tummy.(Sorry to be so graphic) The back

to sleep campaign was in effect then too.) Gunnnar age 3 slept in a

car seat for 3-4 months due to asthma (which he outgrew) and needed

to be upright. I never thought to look at the shape of his head back

then although I probably should have. His head looks fine to me. I

wonder if it rounded out on its own. Maggie was a back sleeper and

the only one with plagio and also the only one with tort. My hunch

is that she developed the tort from laying on her back and just got

comfortable looking one way. I don't know if that is true. I spoke

with my pediatrician and you may want to talk to yours too about the

tummy sleeping. Placing babies on their backs is recommended for at

risk SIDs kids - for instance, babies whose parents smoke. My ped

said that it is not necessary for all babies to be placed on their

backs.

I am not having anymore kids (4 is enough) but if I did, I would do

what I did with my first - place her on her side with a wedge and

rotate her at each sleep time. Best of luck to you. Kaycee

- In Plagiocephalyegroups, " Kirsten " <johnson_kirsten@h...>

wrote:

> I havent posted here is a while, but my hubby and I are trying to

get

> pregnant again and I have a question. How would those of you

dealing

> w/ positional plagio do it differently? Or wouldnt you?

>

> No matter what anyone tells me, Im convinced that my son ended up

w/

> flattening because I had him sleeping in his car seat carrier for

the

> first 3 months of life (was the only place he would sleep and Dr.

> said was fine). We opted to let him go untreated after many

> specialists opinions, because his case was mild. Now at 14 mos.,

only

> the immediate family notices any flattening. But I do believe his

> head shape will never be perfect. And as you all know, this ordeal

> was very traumatic for us.

>

> Anyway, Im wondering how this should effect a second child.

Obivously

> I wont use the car seat for sleeping, but have any of considered

that

> stomach sleeping might just be worth the risk?? I would appreciate

> some feedback.

>

> Kirsten

November 29, 2000

Kendra,

Yeah! I know! Both my kids loved the sounds & lights thing by Fisher-

Price. It wasn't so bad for because she was a side-sleeper.

Now that I think of it, a guy at my old church back in WI was a

freelance toy designer (had 5 kid-testers of his own) moved to Ohio

and designs for Step 2 now. I will try to get his email address or

at worst, I'll write him. I bet he'll come up with a few great

ideas! I bet the toy designers are just as ignorant as the medical

community about plagio and its causes.

I know we are not really that old! If it wasn't for 's gray

hair coming in, you'd think he was 29 or under. He's in great

shape...a tennis pro....and, well, up to the time I had at 31 I

was always a size 5/6 or less. Not the case anymore, but I want to

be there by that 35th birthday. You'd think with all the chasing

these kids it would be easier! Yikes!

Tami

> > >

> > > > I havent posted here is a while, but my hubby and I are

trying to

> > get

> > > > pregnant again and I have a question. How would those of you

> > dealing

> > > > w/ positional plagio do it differently? Or wouldnt you?

> > > >

> > > > No matter what anyone tells me, Im convinced that my son

ended up

> > w/

> > > > flattening because I had him sleeping in his car seat carrier

for

> > the

> > > > first 3 months of life (was the only place he would sleep and

Dr.

> > > > said was fine). We opted to let him go untreated after many

> > > > specialists opinions, because his case was mild. Now at 14

mos.,

> > only

> > > > the immediate family notices any flattening. But I do believe

his

> > > > head shape will never be perfect. And as you all know, this

> > ordeal

> > > > was very traumatic for us.

> > > >

> > > > Anyway, Im wondering how this should effect a second child.

> > Obivously

> > > > I wont use the car seat for sleeping, but have any of

considered

> > that

> > > > stomach sleeping might just be worth the risk?? I would

appreciate

> >

> > > > some feedback.

> > > >

> > > > Kirsten

> > > >

> > > > eGroups Sponsor

> > > [click here]

> > > >

March 23, 2010

We are moving out of illinois so my family can live our life without the educ

system collapsing as well as all other adult systems to foster indep. I start my

new job mid april and am finally feeling like the brick is being lifted from my

chest. I will stay close to the list and wish all families better days ahead. We

have advocated for 17 yrs here and it is time for us to go

Sent from my Verizon Wireless BlackBerry

Re: What would you do differently?

I would definitely have left Illinois,the black hole of education and services

for those with special needs and those who love them.

The second one I'm not sure of: as much as I love so much about the United

States, our country is like a third world nation when it comes to healthcare and

services for those with special needs. I've often wondered if we should have

moved to Canada, England or another country that values people with special

needs and makes sure they are cared for. Healthcare and services there are not

perfect, but despite what the fearmongers say about too much government

involvement with healthcare, people with special needs and their parents don't

find themselves suddenly aging out of their systems with no place to go (as

happens all too often in the US).

If we weren't in the process of spending $3,000,000,000,000 on the incredible

immoral mistake that is the Iraq War, might we have a little bit of money to

help those who need help? If our tax laws didn't favor the obscenely rich,

maybe there would be a few more programs for those over age 22.

>

> I had coffee the other day with a mom whose son is 12 and she asked me this

question -- If I could go back in time to when was 12, knowing what I know

now, what would I have done differently in planning for her future as an adult

person with a developmental disability?

>

> What would YOU do differently?

>

> I'll tell you my answer if you tell me yours!

>

> Laurie

>

March 23, 2010