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In a message dated 6/8/02 10:39:00 PM Central Daylight Time,

ccrogers@... writes:

<< To those of you out there trying

to reposition, be persistent! Don't give up. It takes guts to go

move a sleeping baby that you really don't want to wake up. >>

Boy ain't that the truth!!!! I think you have really hit the nail on the head

there !!

I'm glad to hear that Katrina continues to improve and that the tort is

starting to correct. How encouraging that you see her sometimes with her head

turned to the right totally on her own! That is your hard work paying off!

It is great to hear repositioning success stories. It is such an

encouragement to our members who are struggling with the difficulties of

repositioning. I hope you will continue to keep us updated from time to time.

Marci (Mom to )

Oklahoma

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Hi all! We didn't fall off the earth... have just been incredibly

busy. (I'm a librarian and they're building us a new school. On top

of the normal end-of-the year stuff, I get to pack up an entire

library to move. That's not so bad--- it's the unpacking in August I

dread!!)

Katrina is doing great, making slow but steady progress. She had a

bladder infection a couple of weeks ago, when her ped was on vacation

(naturally!) The fill-in dr. talked to me (or more accurately,

listened to my concerns) about her tort. He happened to be lunching

with her PT the next day, so he got both sides of the story. Anyway,

he confirmed my gut feelings. She has made progress, she is doing

ok, and the therapy SHOULD have been more frequent at the beginning.

(PT started at once a month. Now at 9 mos we're up to weekly.

Unfortunately, those involved (including me) didn't know better 7

months ago.) I was told by so many people --pt's, dr's -- that

it " should resolve by 6 months " that I'm a little paranoid because it

didn't.

Katrina started crawling about 3 weeks ago and loves to walk holding

our hands. I've worked and worked and worked to get her to sleep on

her back with her face to the right (to help her tort & plagio). It

took about 3 weeks before she would stay in that position for even a

minute. Up to then she would just roll over to her tummy. Now

she'll stay for about 20 minutes. Occasionally, I'll catch her

laying that way by her own choice. To those of you out there trying

to reposition, be persistent! Don't give up. It takes guts to go

move a sleeping baby that you really don't want to wake up.

As for her plagio, it seems to be improving SLIGHTLY. The ridge on

top and the flat spot are diminishing. She still has a couple

of " bumps " . Her ped insists that everyone has those. I might not

believe him except her daddy has a couple of well-defined bumps on

his head, so they could be hereditary. From the front she looks

fine, and I doubt she'll ever want to shave her head. :-) It's

still a slow process though. I guess the good side of being so busy

lately is that I haven't scrutinized her on a daily basis so I've

actually seen some changes. I'm still concerned about her right eye

looking " squintier " than the left, but it mainly shows when she turns

to the left, not right. As the tort improves, I have faith it will

improve.

I'm sorry to go on and on. A couple of you asked me to keep you

posted, and I've been out of touch for a while.

I hope y'all are having a good summer and good luck with your

treatments.

& Katrina (9 1/2 mos)

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:)

Thanks so much for the update! We defintiely want to keep posted on

Katrina's repositioning as well as her tort.. I'm sure you're upset

that you weren't educated about this early on but the important this

is you're working very hard to resolve both the tort & plagio now.

It does sound like you're seeing progress with repositioning, that's

great! It is such a long, tiresome thing for parents to do, but

you're doing terrific at it, the benefits will be worth it.!

Thanks again for your update. Oh, the library move...YUK! That

really sounds aweful. Have fun ;)

Debbie Abby's mom DOCGrad

MI

> Hi all! We didn't fall off the earth... have just been incredibly

> busy. (I'm a librarian and they're building us a new school. On

top

> of the normal end-of-the year stuff, I get to pack up an entire

> library to move. That's not so bad--- it's the unpacking in August

I

> dread!!)

>

> Katrina is doing great, making slow but steady progress. She had a

> bladder infection a couple of weeks ago, when her ped was on

vacation

> (naturally!) The fill-in dr. talked to me (or more accurately,

> listened to my concerns) about her tort. He happened to be

lunching

> with her PT the next day, so he got both sides of the story.

Anyway,

> he confirmed my gut feelings. She has made progress, she is doing

> ok, and the therapy SHOULD have been more frequent at the

beginning.

> (PT started at once a month. Now at 9 mos we're up to weekly.

> Unfortunately, those involved (including me) didn't know better 7

> months ago.) I was told by so many people --pt's, dr's -- that

> it " should resolve by 6 months " that I'm a little paranoid because

it

> didn't.

>

> Katrina started crawling about 3 weeks ago and loves to walk

holding

> our hands. I've worked and worked and worked to get her to sleep

on

> her back with her face to the right (to help her tort & plagio).

It

> took about 3 weeks before she would stay in that position for even

a

> minute. Up to then she would just roll over to her tummy. Now

> she'll stay for about 20 minutes. Occasionally, I'll catch her

> laying that way by her own choice. To those of you out there

trying

> to reposition, be persistent! Don't give up. It takes guts to go

> move a sleeping baby that you really don't want to wake up.

>

> As for her plagio, it seems to be improving SLIGHTLY. The ridge on

> top and the flat spot are diminishing. She still has a couple

> of " bumps " . Her ped insists that everyone has those. I might not

> believe him except her daddy has a couple of well-defined bumps on

> his head, so they could be hereditary. From the front she looks

> fine, and I doubt she'll ever want to shave her head. :-) It's

> still a slow process though. I guess the good side of being so

busy

> lately is that I haven't scrutinized her on a daily basis so I've

> actually seen some changes. I'm still concerned about her right

eye

> looking " squintier " than the left, but it mainly shows when she

turns

> to the left, not right. As the tort improves, I have faith it will

> improve.

>

> I'm sorry to go on and on. A couple of you asked me to keep you

> posted, and I've been out of touch for a while.

>

> I hope y'all are having a good summer and good luck with your

> treatments.

>

> & Katrina (9 1/2 mos)

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,

Its so good to hear from you again. And moreso, its good to hear of

Katrina doing so well with the repositioning! I'm sure it was very

frustrating to learn that her PT should have been done more

frequently, but its better late than never to find out this info.

And way to go Katrina on crawling!!

Good luck on moving the library. I am taking my 6 year old to the

library in the afternoon to get him his very own card. He is so

excited about it too now that he has learned to read...he makes his

momma proud!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hi all! We didn't fall off the earth... have just been incredibly

> busy. (I'm a librarian and they're building us a new school. On

top

> of the normal end-of-the year stuff, I get to pack up an entire

> library to move. That's not so bad--- it's the unpacking in August

I

> dread!!)

>

> Katrina is doing great, making slow but steady progress. She had a

> bladder infection a couple of weeks ago, when her ped was on

vacation

> (naturally!) The fill-in dr. talked to me (or more accurately,

> listened to my concerns) about her tort. He happened to be

lunching

> with her PT the next day, so he got both sides of the story.

Anyway,

> he confirmed my gut feelings. She has made progress, she is doing

> ok, and the therapy SHOULD have been more frequent at the

beginning.

> (PT started at once a month. Now at 9 mos we're up to weekly.

> Unfortunately, those involved (including me) didn't know better 7

> months ago.) I was told by so many people --pt's, dr's -- that

> it " should resolve by 6 months " that I'm a little paranoid because

it

> didn't.

>

> Katrina started crawling about 3 weeks ago and loves to walk

holding

> our hands. I've worked and worked and worked to get her to sleep

on

> her back with her face to the right (to help her tort & plagio).

It

> took about 3 weeks before she would stay in that position for even

a

> minute. Up to then she would just roll over to her tummy. Now

> she'll stay for about 20 minutes. Occasionally, I'll catch her

> laying that way by her own choice. To those of you out there

trying

> to reposition, be persistent! Don't give up. It takes guts to go

> move a sleeping baby that you really don't want to wake up.

>

> As for her plagio, it seems to be improving SLIGHTLY. The ridge on

> top and the flat spot are diminishing. She still has a couple

> of " bumps " . Her ped insists that everyone has those. I might not

> believe him except her daddy has a couple of well-defined bumps on

> his head, so they could be hereditary. From the front she looks

> fine, and I doubt she'll ever want to shave her head. :-) It's

> still a slow process though. I guess the good side of being so

busy

> lately is that I haven't scrutinized her on a daily basis so I've

> actually seen some changes. I'm still concerned about her right

eye

> looking " squintier " than the left, but it mainly shows when she

turns

> to the left, not right. As the tort improves, I have faith it will

> improve.

>

> I'm sorry to go on and on. A couple of you asked me to keep you

> posted, and I've been out of touch for a while.

>

> I hope y'all are having a good summer and good luck with your

> treatments.

>

> & Katrina (9 1/2 mos)

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,

So glad to hear that Katrina is doing well!!! Hindsight is always 20/20, and

the fact that the therapy has been stepped up will surely help win the fight

over tort! The repositioning is soooooo hard- sounds like you've done a

great job with an active little one to contend with!! Don't be discouraged

that the tort has not resovled within the 6 months, each child is different,

and for us we were in therapy for about 6-7 months (weekly!!!) and it took

that long to say we " think " we're resolved now!! We still do passive

stretches while holding him to try to keep it at bay. was

considered severe, so keep the faith that with your continued hard work at

home as well as at pt- Katrina will do great! I feel that ' squinty

eye was also from the tort muscle pulling it down, so try light facial

massage in upward strokes to give the face muscles some much needed slack.

Good luck to you and please continue to update us on your cutie pie- when you

can- sounds like your going to be VERY busy!

' Mom

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