Re: mixed feelings

[Guest guest]

I just wanted to say I understand. We still have a week until we

pick up the band and with each day I feel a little more depressed

about it. I am worried first and foremost that somehow this is going

to make things worse (mold her head wrong or give her scars or

something), and second that cuddling just won't be the same once we

get the band. I love nuzzling her head so I can really feel your

pain, although you must be feeling even worse because you've been

through a band and didn't get results (what a waste!) and now you

have to do it again.

Let's pray for really quick results for our babies.

> we are getting the doc band tomorrow and i am both really excited

and

> really depressed. my son was in the starband w/o success and so we

> made the transition to the doc. now that he's had nothing on his

head

> for two weeks, i have really enjoyed the cuddle time. especially at

> night when he buries his head under my chin before going to bed. i

> know that he wont be able to do that after tomorrow-again. i was

> really hoping for a blizzard (in Jersey) so we would have 2 change

the

> appt on tues. i really have mixed feelings for tomorrow but i know

i'm

> doing the right thing. i would just like to be able to " fix it

faster "

> and easier. i wish i could go back to when he was just a little

thing

> and have the info i have now. we would never be posting. sorry i am

> sounding so down but this really seems so unfair sometimes.

[Guest guest]

:

You know I understand completely what you are now going through and

what you have already been through. While Abby was without the band

for 3 wks., I was able to put pretty bows in her hair, cuddle with

her, etc., having that break like you & I have had makes it so much

harder......I felt the same exact way you feel right now. I remember

telling my husband I didn't want to start from scratch all over

again, it wasn't fair. Please hang in there - as soon as he gets the

band back on his head you'll pay no attention to it - neither will

he. You're both already used to it & it'll be no big deal tomorrow.

Abby has had improvement in just 2 1/2 wks., I'm not kidding, I'm not

imagining it - it's very noticeable already! When you see it really

is working, that's when you know it's all been worth it - and after

what we've been through before with no improvement, it's very

discouraging.........hang in there - I so hope it works for your son

like the DOC has for Abby already!

Debbie Abby's mom 3/1/00, STAR 11/4/00, DOC 2/16/01

[Guest guest]

thanx 4 writing everyone-i am feeling a bit better now. although our

appt was moved to thurs due to the weather after all, i really do know

that im doing the best thing. i just put aitan to bed and sang him

this song we do in music class. it talks about ... " what a miracle " ...

he is...etc. anyway-every time i sing it, i think about how lucky we

really are. he is a miracle to me and i just have to keep reminding

myself that this will all pass. ok...enough hallmark...thanx.

> :

> You know I understand completely what you are now going through and

> what you have already been through. While Abby was without the band

> for 3 wks., I was able to put pretty bows in her hair, cuddle with

> her, etc., having that break like you & I have had makes it so much

> harder......I felt the same exact way you feel right now. I remember

> telling my husband I didn't want to start from scratch all over

> again, it wasn't fair. Please hang in there - as soon as he gets the

> band back on his head you'll pay no attention to it - neither will

> he. You're both already used to it & it'll be no big deal tomorrow.

> Abby has had improvement in just 2 1/2 wks., I'm not kidding, I'm

not

> imagining it - it's very noticeable already! When you see it really

> is working, that's when you know it's all been worth it - and after

> what we've been through before with no improvement, it's very

> discouraging.........hang in there - I so hope it works for your son

> like the DOC has for Abby already!

> Debbie Abby's mom 3/1/00, STAR 11/4/00, DOC 2/16/01

[Guest guest]

Miracles aren't always perfect. Even with God, we have to do some

work for the miracles. Sometimes it is merely to say 'ok,' and

sometimes it is incredible suffering, but it is still our

participation in the miracle.

Babies are incredible miracles. I can't help but believe in God just

by looking at my son. Yes, I love the snuggle time without the Band,

but I still get it while he is wearing the Band. Sure, his neck

muscles are still not completely controlled and I get head-butted

every once in a while, but I'll accept that to snuggle with Matt.

I highly doubt there would have been any major (non-cosmetic)

complications had we not considered therapy. There would have been

big time problems cosmetically (and we've all been through our teens,

so we know the pressures imperfections can open the door for),

though.

I know that we are doing the best thing for him. Does he like it?

Not really. Does he understand the reasoning? No. Will he ever?

Maybe. Am I doing this hoping he never has to worry about it? Most

definitely, yes. You are doing the same for yours. Don't forget,

the cheeks are still within kissing reach!

(Matt's Dad)

[Guest guest]

hi mia,

i too had mixed feelings. i was so worried kathryn would change as

far as temperment, but thank goodness she hasn't. she is still a very

happy baby. i am not sure how old foster is(kathryn is 8 months)but i

can honestly say i underestimated how adaptable babies are. the first

time the therapist put the band on kathryn just sat there, she

wiggled for a few minutes, rubbed her hands over it, especially the

velcro strap, and then left it completely alone!!. she slept just

fine the first night, and hasn't had any problems sleeping since (not

band related anyways). the only real problem we had the first week

was a small heat rash,I thought it was pressure, but the therapist

said if it was a pressure point it would be smaller and would go away

within an hour..once the pressure was gone. kathryn is hot natured so

it took her body a little longer to adjust. we live in texas so it

is already nice and hot!! the therapist said to make sure we took the

band off every 3 to 4 hours just long enough to wipe her head off and

to towel dry her helmet, (we do this when we do her PT). she also

said to keep her barefoot for a while because babies sweat thru their

heads and feet. we made bath time extra fun and now kathryn LOVES to

have her head rubbed during her hour of " free time " . for all my

worrying and belive me i worried a lot!!, she has adjusted just fine.

she actually gets more upset when i take the band off for her PT then

when i am putting the band on. i also want to give you words of

encouragement. kathryn has only been in her band for 3 weeks and the

back of her head is already symetrical and the front will probably

only need one more adjustment, now we are just " filling " in the back,

so i can testify that it is all worth the worrying!! good luck and i

hope this info helps.

kelly(mom to kathryn,plagio/tort,banded 5/03, texas)

> Morning Ladies!

>

> I haven't posted in a couple weeks; work, ear infections, tummy flu

> (the kiddo's, not me), hubby out of town, etc., have kept me busy.

> Anyway, 's going in for his DOC band fitting on Thursday. I'm

> having mixed feelings. On one hand I'm excited, I can't wait to

begin

[Guest guest]

Thank you Valeria! Luckily, he gets his band on Thursday, I'm

telecommuting on Friday, and then we have a 3 day weekend. So I plan

on dedicating that entire time to making him feel better if

necessary. I wish I could go through the whole thing for him! Thanks

for your honesty and for responding. It's a HUGE help!

> > Morning Ladies!

> >

> > I haven't posted in a couple weeks; work, ear infections, tummy

> flu

> > (the kiddo's, not me), hubby out of town, etc., have kept me

busy.

> > Anyway, 's going in for his DOC band fitting on Thursday.

> I'm

> > having mixed feelings. On one hand I'm excited, I can't wait to

> begin

> > the process of rounding out his head. On the other, I'm very

> nervous

> > and sorry for him. I don't think I would be too comfy with a

> helmet

> > on 23 hours a day. Anyway, just to prepare myself (yes, I'm

> extreme

> > type A, forgive me ), would anyone be willing to share their

> first

> > days/nights experiences? I know there are some posts on here

> already

> > but I'm having a hard time sifting through them. I just would

like

> to

> > know what to expect. I know every kid's different but it would be

> > nice to hear some honest recounts of how it went for you. Thanks

> so

> > much in advance!

> >

> > Mia

[Guest guest]

Mia - I know just how you feel - we got our band on May 10 so the

feelings are very fresh. I too was strangely excited to get

started, but on the day we were to receive the band, it hit me like

a ton of bricks!! This thing, which may or may not work (Sydney is 9

1/2 months - and it is already working)will be a constant fixture in

our lives for the next who knows how many months. People are going

to look at us funny, kids won't come up to her, her personality will

change, how will she sleep, how will I cuddle her, how will I kiss

her little head?? I was so worked up, I was alomost sick. I am SO

happy to say that when they put the band on for the first time - she

barely noticed. They had to take it on and off a few times for

adjustments and she got fussy, but nothig like I prepared myself

for. When we left, I felt like a giant weight was off my

shoulders!! I was so scared to take her out in public for the first

time, so my husband and I decided to go straight to Toys R Us and

buy her something to keep her mind off it and get the first public

outing over with. It went fine - no one was rude, people even

smiled more than usual. We also went to a large mall by our house

that night and out to dinner - Some people asked questions (kindly)

and I was so relieved. I will say that kids still come up to

her,her personality didn't change a bit, she sleeps fine (maybe

better), and she's just as cuddly and kissable as ever. We have

also already seen progress. She seems surprisingly comfortable -

the sweating was bad for the first week and then I guess her body

adjusted - even outside she still seems comfortable. Decorating the

helmet helped a lot too - I don't know why, it just looks less

medical. I understand your fears, but I found the anticipation is

the worst part. I wish you the best of luck and please let us know

how it goes. Check out her pics in the photos section under Sydney

L. - there are some of her first day in her band - you can see she

was fine.

-St. Louis

Sydney - 9 1/2 months (PPO helmet 5-10-04)

> Morning Ladies!

>

> I haven't posted in a couple weeks; work, ear infections, tummy

flu

> (the kiddo's, not me), hubby out of town, etc., have kept me busy.

> Anyway, 's going in for his DOC band fitting on Thursday.

I'm

> having mixed feelings. On one hand I'm excited, I can't wait to

begin

> the process of rounding out his head. On the other, I'm very

nervous

> and sorry for him. I don't think I would be too comfy with a

helmet

> on 23 hours a day. Anyway, just to prepare myself (yes, I'm

extreme

> type A, forgive me ), would anyone be willing to share their

first

> days/nights experiences? I know there are some posts on here

already

> but I'm having a hard time sifting through them. I just would like

to

> know what to expect. I know every kid's different but it would be

> nice to hear some honest recounts of how it went for you. Thanks

so

> much in advance!

>

> Mia

[Guest guest]

Hi Mia,

You probably won't believe this but my son's DOC never bothered him

once! The first time we put it on he reached for it and I put a toy

in his hand and that was it! I couldn't believe it! I think because

they are custom made and so light that they are almost " comfy " . He

would rip hats off his head prior to being banded and now that he has

graduated he loves wearing hats. Good luck!

Natasha

> Morning Ladies!

>

> I haven't posted in a couple weeks; work, ear infections, tummy flu

> (the kiddo's, not me), hubby out of town, etc., have kept me busy.

> Anyway, 's going in for his DOC band fitting on Thursday. I'm

> having mixed feelings. On one hand I'm excited, I can't wait to

begin

> the process of rounding out his head. On the other, I'm very

nervous

> and sorry for him. I don't think I would be too comfy with a helmet

> on 23 hours a day. Anyway, just to prepare myself (yes, I'm extreme

> type A, forgive me ), would anyone be willing to share their

first

> days/nights experiences? I know there are some posts on here

already

> but I'm having a hard time sifting through them. I just would like

to

> know what to expect. I know every kid's different but it would be

> nice to hear some honest recounts of how it went for you. Thanks so

> much in advance!

>

> Mia