Re: Brand New to Site: Anyone have advice on getting baby comfortable at night w/DBB

[Guest guest]

- The doctor who said that they all hate it was speaking from his

experience with his own son and the Markells...Talked to another

lady who stopped us in the mall when she saw dd's DBB tonight. Her 5

year old is now out of it, but she said that her son had to sleep on

hers or her husband's chest for the entire time that he was in them.

She said that he never got used to it.

- Both myself and my daughter are tongue-tied, but because this is a

night-time only issue (the screaming), I don't think that is a

problem. She eats fine, and has adapted to the way her tongue is, as

did I. Never did find a dentist or doctor that was willing to clip

mine, so haven't even thought to ask about hers.

- I have tried the tips and tricks, and after a couple of months,

everything except the knots in the laces and cutting the tongue slit

higher were things that we have tried, to no avail.

- A lot of things that I have read (including some on this site)

have suggested that the bars do not work as well. Maybe

that is why they are more comfortable? I don't know. I considered

asking her ortho doc for them for a while, but it seems that the

long-term benefits of the Markell outweigh the .

- I am not ABSOLUTELY sure that her feet were ready for the bar

before she went into the DBB. I can only go by what several doctors

(ortho studied under Dr. P, family practioner has a son going

through this) have said. By looking at her feet, I don't know that I

would have known if they were ready. She didn't get the bar until

she was 8 months. That was 32 weeks of weekly serial casts. The high-

pitched screaming as they were cutting the casts off weekly, and the

screams as they rotated her feet as the plaster was drying, the gut

wrenching looks of " Help me " in her eyes as she looked at my husband

and me while they were taking off and applying the casts for 8

months. All of that, and add the fact that they first 6 months of

casts were with a quack military ortho in Italy that didn't care

about whether she improved. He just checked on his tech's work

(literally) 3 times during the 6 months of weekly casts (only to her

knee). Casts that did her absolutely no good. (Yes, we complained,

but does no good when you are talking about military docs. No one

listened.)So of course, after 2 additional months of Ponsetti casts

here in the states, her feet looked wonderful to us. Like a miracle.

Were they ready? I just don't know. I just remember crying thinking

that they finally looked " normal " the week or two before she got

them off completely.

-In my last email I typed (incorrectly) that I take them off once a

night. I was getting ahead of myself, thinking of something else

that I was to write. I was trying to say that when I am totally

sleep-deprived, I take them off once a week (if that) at about 3:00

in the morning. It's not something that she is used to, and BELIEVE

ME, much to the contrary of my better judgement, I have, at times,

resorted to letting her " cry it out " thinking that she is merely

crying as a way of reeling me in - to take off the bar, or paly with

her, or anything. I don't think that she has learned that if she

cries hard enough I will take it off, because it just doesn't

happen. I just sit in my room and cry my head off as she is

screaming.

I have mentioned this to my doctor at nauseum, but I get the

same, " Yeah, all the moms complain of this. " answer from the ortho.

I guess that I was reaching out, trying to find others in my

situation that had kids that had trouble adjusting, and things (if

any) they found to lessen the struggle. She is number one, not my

sleep deprivation. I DO realize that this is the hand that she was

dealt, and she has a congenital condition that needs to be dealt

with. We are not taking it lightly, nor are we depriving her of the

correct number of hours with the bar. BELIEVE ME, I understand this

completely. We may not have years of experience of this under our

belts yet, but we have hours and weeks and months of rocking her,

and trying to comfort her with this bar, with no change beyond, the

day or week of misery.

> >

> > Maybe the bar is too short, causing discomfort when she lays

> down. I'd check on that first.

> >

> > If the bar is OK then I'd move on towards looking at her

sleeping

> arrangment. Maybe her feet get stuck between the slats of teh

crib

> and wake her up, or it's happened before and now she is

frightened

> of that happening again.

> >

> > Maybe just the noise of the fab hitting the slats has come to

> frighten her.

> >

> > In either of those I would try putting her to sleep in a play-

pen

> with net siding instead of crib with wood/metal slats.

> >

> > If not that, have you tried giving her a sleep-sack instead of

> blankets? Blankets get tangled on the bar and around the baby

> causing frustration, etc.

> >

> > It may not be FAB related at all, ya know? Is she congested

and

> can't breath well laying down?

> >

> > Could it be bad dreams or night terrors have invaded? Are

shadows

> on the wall freaking her out? Do the stuffed toys come to life

in

> the dark?

> >

> > Um, acid reflux creeping in when she lays down?

> >

> > Is it related to your living conditions changing, new house,

new

> bedroom, your husband going on tour, etc?

> >

> > At her age it could be a lot of things. It's easy to assume

it's

> the FAB cuz it's so obvious but try to dig deeper if you find no

> problems with the FAB.

> >

> > Does she have a really set bedtime routine? If not aim to

have

> one for her, something she can count on every night to happen in

ABC

> order start to finish so she winds down and settles in to

sleep.

> BAbies need that.

> >

> > Is she even tired at bed time? Could be too much napy time

during

> the day ruining her desire to go to bed when you send her.

> >

> > WEll, hope some of that might help you figure it out. Good

luck!

> > s.

> > Brand New to Site: Anyone have

> advice on getting baby comfortable at night w/DBB

> >

> >

> > Hi. I am new to this group, and am joining, because I feel

like

> I am

> > the only one going through this in my town...My 10 month old

was

> in

> > casts for 8 months (6 mos of poor casting- only to knee in

> military

> > hospital overseas), and then 2 mos with Ponceti method at a

> > children's hospital here in FL. She has had the Dennis Brown

Bar

> for

> > almost 2 months, and although she seems fine with it during

the

> day,

> > she screams almost all night long. I think that as soon as

she

> gets

> > herself close to sleep, she turns to get comfortable, and

> realizes

> > that she can't move her feet independently, then starts

> screaming.

> > Once she is finally calm, the process starts all over again

in a

> > matter of minutes. I am frazzled. My husband is now gone for

6

> > months with the Navy and I feel like the doctors just kind

of

> shrug

> > their shoulders when I ask about this as if to say, " She's

going

> to

> > have to tough it out. " She is such a happy baby during the

day,

> and

> > it is killing me that she is so frustrated and sad at night.

I

> have

> > tried holding her, rubbing her, and even tried not going to

her

> at

> > all (which was the worst- I hated that she needed me or help

and

> I

> > wouldn't go to her). I know that the DBB is necessary for

her

> > development, but does anyone have any advice about how to

make

> this

> > easier on her? What has worked for everyone else for this

to be

> > long term?

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Have you considered getting another opinion about your daughter's

feet? Many people here send photos to Dr. Ponseti himself. I can't

remember what particular angles he wants to see, but I'm sure someone

else can chime in and say what you should send to him, as well as his

e-mail address.

It doesn't seem like your daughter should be screaming like that

because of the shoes. My son did that at first, and it turns out the

shoes weren't fitting him properly, or I was putting them on wrong.

In any case, he ended up back in casts for a few weeks to heal the

pressure sores that he started to get (they formed in a matter of a

day!), and after that we've had no real major problems getting the

shoes on. Sure, some nights he's a little stinker and kicks at me

and cries, but I figure he'd do that for some other reason if it

weren't for the shoes. We all have cranky days afterall.

In any case, if you can send digital photos to Dr. P, he'll get back

to you quickly and let you know. Otherwise, perhaps the 's

would be a better option. I haven't heard anything about them not

working as well, and in fact, I'd think they'd be better. Dr. P

himself suggests them for the more difficult cases and I can't

imagine he'd do that if they didn't work as well.

> > >

> > > Maybe the bar is too short, causing discomfort when she lays

> > down. I'd check on that first.

> > >

> > > If the bar is OK then I'd move on towards looking at her

> sleeping

> > arrangment. Maybe her feet get stuck between the slats of teh

> crib

> > and wake her up, or it's happened before and now she is

> frightened

> > of that happening again.

> > >

> > > Maybe just the noise of the fab hitting the slats has come to

> > frighten her.

> > >

> > > In either of those I would try putting her to sleep in a play-

> pen

> > with net siding instead of crib with wood/metal slats.

> > >

> > > If not that, have you tried giving her a sleep-sack instead

of

> > blankets? Blankets get tangled on the bar and around the baby

> > causing frustration, etc.

> > >

> > > It may not be FAB related at all, ya know? Is she congested

> and

> > can't breath well laying down?

> > >

> > > Could it be bad dreams or night terrors have invaded? Are

> shadows

> > on the wall freaking her out? Do the stuffed toys come to life

> in

> > the dark?

> > >

> > > Um, acid reflux creeping in when she lays down?

> > >

> > > Is it related to your living conditions changing, new house,

> new

> > bedroom, your husband going on tour, etc?

> > >

> > > At her age it could be a lot of things. It's easy to assume

> it's

> > the FAB cuz it's so obvious but try to dig deeper if you find

no

> > problems with the FAB.

> > >

> > > Does she have a really set bedtime routine? If not aim to

> have

> > one for her, something she can count on every night to happen

in

> ABC

> > order start to finish so she winds down and settles in to

> sleep.

> > BAbies need that.

> > >

> > > Is she even tired at bed time? Could be too much napy time

> during

> > the day ruining her desire to go to bed when you send her.

> > >

> > > WEll, hope some of that might help you figure it out. Good

> luck!

> > > s.

> > > Brand New to Site: Anyone

have

> > advice on getting baby comfortable at night w/DBB

> > >

> > >

> > > Hi. I am new to this group, and am joining, because I feel

> like

> > I am

> > > the only one going through this in my town...My 10 month

old

> was

> > in

> > > casts for 8 months (6 mos of poor casting- only to knee in

> > military

> > > hospital overseas), and then 2 mos with Ponceti method at a

> > > children's hospital here in FL. She has had the Dennis

Brown

> Bar

> > for

> > > almost 2 months, and although she seems fine with it during

> the

> > day,

> > > she screams almost all night long. I think that as soon as

> she

> > gets

> > > herself close to sleep, she turns to get comfortable, and

> > realizes

> > > that she can't move her feet independently, then starts

> > screaming.

> > > Once she is finally calm, the process starts all over again

> in a

> > > matter of minutes. I am frazzled. My husband is now gone

for

> 6

> > > months with the Navy and I feel like the doctors just kind

> of

> > shrug

> > > their shoulders when I ask about this as if to say, " She's

> going

> > to

> > > have to tough it out. " She is such a happy baby during the

> day,

> > and

> > > it is killing me that she is so frustrated and sad at

night.

> I

> > have

> > > tried holding her, rubbing her, and even tried not going to

> her

> > at

> > > all (which was the worst- I hated that she needed me or

help

> and

> > I

> > > wouldn't go to her). I know that the DBB is necessary for

> her

> > > development, but does anyone have any advice about how to

> make

> > this

> > > easier on her? What has worked for everyone else for this

> to be

> > > long term?

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hugs to you! We are certainly here to support you and to listen to

you. My niece was diagnosed with acid reflux at the tender age of 1

week. Until they got her medication figured out(at 10 months) and

her formula situated-she was up all night-her only happy sleepy

moment was when her parents would hold her and she would lay on her

warm belly. I know your ped and ortho believe that the sleeplessness

is the cause of the bar-but is there any chance something else could

be going on-maybe even acid reflux?!? Just a wacky thought. Is she

ok in the day with the bar on-with naps, does she sleep ok. What

about sleeping in an infant carrier-this would take the weight off

of her feet/hips?!? I am racking my brain to help you. The mitchells

may be the way to go as they can be more comfortable for the child

(our son is on his 4th pair of markells). What about teething?!? I

look forward to the day when 's teeth are all in-he has been

cutting teeth nonstop since 4 months-luckily he has only 4 more to

go-he's an over achiever-likes to get 4 or more at one time.

Hugs again to you, I know we will figure this out!!

kathleen

mom to david bcf fab 12/7

> > >

> > > Maybe the bar is too short, causing discomfort when she lays

> > down. I'd check on that first.

> > >

> > > If the bar is OK then I'd move on towards looking at her

> sleeping

> > arrangment. Maybe her feet get stuck between the slats of teh

> crib

> > and wake her up, or it's happened before and now she is

> frightened

> > of that happening again.

> > >

> > > Maybe just the noise of the fab hitting the slats has come

to

> > frighten her.

> > >

> > > In either of those I would try putting her to sleep in a

play-

> pen

> > with net siding instead of crib with wood/metal slats.

> > >

> > > If not that, have you tried giving her a sleep-sack instead

of

> > blankets? Blankets get tangled on the bar and around the baby

> > causing frustration, etc.

> > >

> > > It may not be FAB related at all, ya know? Is she congested

> and

> > can't breath well laying down?

> > >

> > > Could it be bad dreams or night terrors have invaded? Are

> shadows

> > on the wall freaking her out? Do the stuffed toys come to life

> in

> > the dark?

> > >

> > > Um, acid reflux creeping in when she lays down?

> > >

> > > Is it related to your living conditions changing, new house,

> new

> > bedroom, your husband going on tour, etc?

> > >

> > > At her age it could be a lot of things. It's easy to assume

> it's

> > the FAB cuz it's so obvious but try to dig deeper if you find

no

> > problems with the FAB.

> > >

> > > Does she have a really set bedtime routine? If not aim to

> have

> > one for her, something she can count on every night to happen

in

> ABC

> > order start to finish so she winds down and settles in to

> sleep.

> > BAbies need that.

> > >

> > > Is she even tired at bed time? Could be too much napy time

> during

> > the day ruining her desire to go to bed when you send her.

> > >

> > > WEll, hope some of that might help you figure it out. Good

> luck!

> > > s.

> > > Brand New to Site: Anyone

have

> > advice on getting baby comfortable at night w/DBB

> > >

> > >

> > > Hi. I am new to this group, and am joining, because I feel

> like

> > I am

> > > the only one going through this in my town...My 10 month

old

> was

> > in

> > > casts for 8 months (6 mos of poor casting- only to knee in

> > military

> > > hospital overseas), and then 2 mos with Ponceti method at

a

> > > children's hospital here in FL. She has had the Dennis

Brown

> Bar

> > for

> > > almost 2 months, and although she seems fine with it

during

> the

> > day,

> > > she screams almost all night long. I think that as soon as

> she

> > gets

> > > herself close to sleep, she turns to get comfortable, and

> > realizes

> > > that she can't move her feet independently, then starts

> > screaming.

> > > Once she is finally calm, the process starts all over

again

> in a

> > > matter of minutes. I am frazzled. My husband is now gone

for

> 6

> > > months with the Navy and I feel like the doctors just kind

> of

> > shrug

> > > their shoulders when I ask about this as if to say, " She's

> going

> > to

> > > have to tough it out. " She is such a happy baby during the

> day,

> > and

> > > it is killing me that she is so frustrated and sad at

night.

> I

> > have

> > > tried holding her, rubbing her, and even tried not going

to

> her

> > at

> > > all (which was the worst- I hated that she needed me or

help

> and

> > I

> > > wouldn't go to her). I know that the DBB is necessary for

> her

> > > development, but does anyone have any advice about how to

> make

> > this

> > > easier on her? What has worked for everyone else for this

> to be

> > > long term?

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

It cracks me up you'd say I crack you up! LOL!

Brand New to Site: Anyone have

> advice on getting baby comfortable at night w/DBB

> >

> >

> > Hi. I am new to this group, and am joining, because I feel

like

> I am

> > the only one going through this in my town...My 10 month old

was

> in

> > casts for 8 months (6 mos of poor casting- only to knee in

> military

> > hospital overseas), and then 2 mos with Ponceti method at a

> > children's hospital here in FL. She has had the Dennis Brown

Bar

> for

> > almost 2 months, and although she seems fine with it during

the

> day,

> > she screams almost all night long. I think that as soon as

she

> gets

> > herself close to sleep, she turns to get comfortable, and

> realizes

> > that she can't move her feet independently, then starts

> screaming.

> > Once she is finally calm, the process starts all over again

in a

> > matter of minutes. I am frazzled. My husband is now gone for

6

> > months with the Navy and I feel like the doctors just kind

of

> shrug

> > their shoulders when I ask about this as if to say, " She's

going

> to

> > have to tough it out. " She is such a happy baby during the

day,

> and

> > it is killing me that she is so frustrated and sad at night.

I

> have

> > tried holding her, rubbing her, and even tried not going to

her

> at

> > all (which was the worst- I hated that she needed me or help

and

> I

> > wouldn't go to her). I know that the DBB is necessary for

her

> > development, but does anyone have any advice about how to

make

> this

> > easier on her? What has worked for everyone else for this

to be

> > long term?

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

OK, I checked and I don't see you in the waiting for approval section

or members. Either it's been too long since you subbed, or you

haven't yet, or your yahoo ID you subbed under is different than the

one you use for this group. So I'll need you to re-submit your

request for membership and then send me the survey. I'll check

frequently today for the file and we also have other moderators who

may see you and get you approved before I do. Looking forward to

hearing from you soon!

Kori

At 08:37 AM 12/16/2005, you wrote:

>,

>

>I have recently formatted my hd so I don't have the notification

>emails on this puter anymore (emails saved, just not in this version

>of email program) but I did not see a survey come through from you

>yet. That is what we need to approve your membership to CFPics. Did

>you notice the file sent to you when you subscribed? If not, look

>back and find the file, read it, and fill out the survey there so we

>can approve you. Then you will be able to send pics to the list. I

>am going to go look at yahoo right now to see if you're still waiting

>for approval and get you approved if so... but we will still need

>your survey. When you finish, send it to me and I will fwd to the

>list to introduce you.

>

>OK, sorry for the delay on this. I will do some checking. If you

>have already sent it to me I apologize for not seeing it. Can't wait

>to see those tootsies, and don't forget to send some of her face too!

>

>Kori

>CFPics Owner

>

>At 08:18 AM 12/16/2005, you wrote:

> > and ,

> >

> >I will try to post some pics tonight, maybe on Snapfish? I will try

> >both that and CFPics yahoo group, but I've tried that for a few days

> >and for some reason I keep getting msgs. saying unable to post. I'm

> >probably just tired. I'll try again and see which I have the most

> >success with. She got a new pair of shoes last week, and those made

> >pressure sores on the tops of her feet, so that explains this week's

> >discomfort (but not the last two months =-O). Went to the doc Monday

> >when I discovered them, and he saw her again Wed. I asked about the

> >new Markells (1645 - right now she is in 1934), and the doctor was

> >not sure about them and asked that I bring in a picture. I happened

> >to have brought one in, and they are going to order them for .

> >I also asked him about the adjustable bar, but he said because it is

> >already at shoulder length, bolt to bolt, that it is a good length.

> >Anyway, she does not nap well with DBB, but during her waking day,

> >she is fine with it on. She seems happy, and crawls around just

> >fine. Only since the DBB has she started to sleep on her tummy, or

> >more like in a fetal postition on the side of her face. We have

> >tried rolling blankets under her knees in the beginning, but she

> >didn't care too much for that. In the beginning especially, she

> >tried to roll over onto her side, which then, of course led to one

> >leg being stuck straight in the air. I know that would wake anyone

> >up! The doctor has us out of the shoes for this week while her

> >bruises heal. It's a miracle, but she is sleeping 10 hours a night

> >without even stirring! I, on the other hand still feel like I need

> >to sleep with one eye open. I'm almost afraid that she is sleeping

> >too soundly - I know that sounds silly, but after all, we have never

> >had this! I'm sure that by tongiht, my exhaustion will kick in, and

> >I will sleep too. We are going to see yet a third ortho on the 19th.

> >New ortho doc at the children's hospital just moved to the area, and

> >has a particular interest in clubfoot. We'll see if she offers any

> >different opinion...

> >

> >Anyway, thanks for the follow up. Hadn't posted them yet since she

> >had those new pressure sores from the new shoes. I figured everyone

> >would say, " Well, of course! That's the problem!. " But really, this

> >is new with the new shoes, I think that they are so stiff, I am

> >having trouble getting her heel down all of the way, and they are

> >bigger, so she is slipping out more easily. The old shoes were so

> >well broken in and supple that this was never a problem (though she

> >cried all night with them on too).

> >

> >Thanks again,

> >

> >

> >

> >

> >

> >

> > >

> > > ,

> > > Can you share pictures with us of her bare feet, and pictures of

> >her

> > > in the brace also? (either through a website like yahoo pics,

> > > photobucket etc. or through the CFPics yahoo group) Maybe there is

> > > something that we'll see in the pictures that will help generate

> >ideas

> > > as to how to fix the issue.

> > > Does she nap okay in the brace? I can't remember if you said she

> >was

> > > in it fulltime still? She's got no issues during the day, just at

> > > night, right?

> > > Does she like to sleep in a particular position (tummy, side etc.)

> >and

> > > can't get comfortable?

> > > I would suggest that you have your orthotist order the adjustable

> > > length red bar now, and when that comes in, you might have better

> >luck

> > > in adjusting the length to find a more comfortable distance for

> >her.

> > > Hang in there.....

> > >

> > > & (3-16-00, lcf)

> > >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Is your daughter in healing casts while out of the shoes?

> >

> > ,

> > Can you share pictures with us of her bare feet, and pictures of

> her

> > in the brace also? (either through a website like yahoo pics,

> > photobucket etc. or through the CFPics yahoo group) Maybe there

is

> > something that we'll see in the pictures that will help generate

> ideas

> > as to how to fix the issue.

> > Does she nap okay in the brace? I can't remember if you said she

> was

> > in it fulltime still? She's got no issues during the day, just at

> > night, right?

> > Does she like to sleep in a particular position (tummy, side

etc.)

> and

> > can't get comfortable?

> > I would suggest that you have your orthotist order the adjustable

> > length red bar now, and when that comes in, you might have better

> luck

> > in adjusting the length to find a more comfortable distance for

> her.

> > Hang in there.....

> >

> > & (3-16-00, lcf)

> >

>

[Guest guest]

No, I asked, but the doctor said no...

> > >

> > > ,

> > > Can you share pictures with us of her bare feet, and pictures

of

> > her

> > > in the brace also? (either through a website like yahoo pics,

> > > photobucket etc. or through the CFPics yahoo group) Maybe

there

> is

> > > something that we'll see in the pictures that will help

generate

> > ideas

> > > as to how to fix the issue.

> > > Does she nap okay in the brace? I can't remember if you said

she

> > was

> > > in it fulltime still? She's got no issues during the day, just

at

> > > night, right?

> > > Does she like to sleep in a particular position (tummy, side

> etc.)

> > and

> > > can't get comfortable?

> > > I would suggest that you have your orthotist order the

adjustable

> > > length red bar now, and when that comes in, you might have

better

> > luck

> > > in adjusting the length to find a more comfortable distance

for

> > her.

> > > Hang in there.....

> > >

> > > & (3-16-00, lcf)

> > >

> >

>

[Guest guest]

I have no idea what file or survey that you are referring to... I

only applied a week ago. Is it in my files section?!

> > > >

> > > > ,

> > > > Can you share pictures with us of her bare feet, and

pictures of

> > >her

> > > > in the brace also? (either through a website like yahoo pics,

> > > > photobucket etc. or through the CFPics yahoo group) Maybe

there is

> > > > something that we'll see in the pictures that will help

generate

> > >ideas

> > > > as to how to fix the issue.

> > > > Does she nap okay in the brace? I can't remember if you

said she

> > >was

> > > > in it fulltime still? She's got no issues during the day,

just at

> > > > night, right?

> > > > Does she like to sleep in a particular position (tummy, side

etc.)

> > >and

> > > > can't get comfortable?

> > > > I would suggest that you have your orthotist order the

adjustable

> > > > length red bar now, and when that comes in, you might have

better

> > >luck

> > > > in adjusting the length to find a more comfortable distance

for

> > >her.

> > > > Hang in there.....

> > > >

> > > > & (3-16-00, lcf)

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Okay, I found it and will send it in ASAP...

> > > > >

> > > > > ,

> > > > > Can you share pictures with us of her bare feet, and

> pictures of

> > > >her

> > > > > in the brace also? (either through a website like yahoo

pics,

> > > > > photobucket etc. or through the CFPics yahoo group) Maybe

> there is

> > > > > something that we'll see in the pictures that will help

> generate

> > > >ideas

> > > > > as to how to fix the issue.

> > > > > Does she nap okay in the brace? I can't remember if you

> said she

> > > >was

> > > > > in it fulltime still? She's got no issues during the day,

> just at

> > > > > night, right?

> > > > > Does she like to sleep in a particular position (tummy,

side

> etc.)

> > > >and

> > > > > can't get comfortable?

> > > > > I would suggest that you have your orthotist order the

> adjustable

> > > > > length red bar now, and when that comes in, you might have

> better

> > > >luck

> > > > > in adjusting the length to find a more comfortable

distance

> for

> > > >her.

> > > > > Hang in there.....

> > > > >

> > > > > & (3-16-00, lcf)

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

That doesn't seem right....

My son had pressure sores as well during his first go at the shoes.

At first, they didn't want to put him in the healing casts either,

but I insisted. He was in them for a few weeks until the pressure

sores healed. After that, he went back into the shoes (which we

worked with during the time he was in the casts to losen them up),

and he hasn't really had problems since.

There is a very high chance your daughter will lose correction while

free of the casts and shoes. Then when you try the shoes again,

you'll end up with the same, if not more, problems and ultimately in

casts again.

How long were they planning on leaving her out of the shoes? I got

mad when they left Aleksander out for 2 days (it was the weekend when

he developed the sores so we didn't have much of a choice). I'm sure

it will take longer than that to get the new shoes...

> > > >

> > > > ,

> > > > Can you share pictures with us of her bare feet, and pictures

> of

> > > her

> > > > in the brace also? (either through a website like yahoo pics,

> > > > photobucket etc. or through the CFPics yahoo group) Maybe

> there

> > is

> > > > something that we'll see in the pictures that will help

> generate

> > > ideas

> > > > as to how to fix the issue.

> > > > Does she nap okay in the brace? I can't remember if you said

> she

> > > was

> > > > in it fulltime still? She's got no issues during the day,

just

> at

> > > > night, right?

> > > > Does she like to sleep in a particular position (tummy, side

> > etc.)

> > > and

> > > > can't get comfortable?

> > > > I would suggest that you have your orthotist order the

> adjustable

> > > > length red bar now, and when that comes in, you might have

> better

> > > luck

> > > > in adjusting the length to find a more comfortable distance

> for

> > > her.

> > > > Hang in there.....

> > > >

> > > > & (3-16-00, lcf)

> > > >

> > >

> >

>

[Guest guest]

the doctor is wrong

She absolutely should not be without a healing cast. hands

down... asking for relapse if you don't cast. Grrr.... docs...

Kori

At 09:00 AM 12/16/2005, you wrote:

>No, I asked, but the doctor said no...

>

>

> > > >

> > > > ,

> > > > Can you share pictures with us of her bare feet, and pictures

>of

> > > her

> > > > in the brace also? (either through a website like yahoo pics,

> > > > photobucket etc. or through the CFPics yahoo group) Maybe

>there

> > is

> > > > something that we'll see in the pictures that will help

>generate

> > > ideas

> > > > as to how to fix the issue.

> > > > Does she nap okay in the brace? I can't remember if you said

>she

> > > was

> > > > in it fulltime still? She's got no issues during the day, just

>at

> > > > night, right?

> > > > Does she like to sleep in a particular position (tummy, side

> > etc.)

> > > and

> > > > can't get comfortable?

> > > > I would suggest that you have your orthotist order the

>adjustable

> > > > length red bar now, and when that comes in, you might have

>better

> > > luck

> > > > in adjusting the length to find a more comfortable distance

>for

> > > her.

> > > > Hang in there.....

> > > >

> > > > & (3-16-00, lcf)

> > > >

> > >

> >

>

>

>

>

>

>

>

>

[Guest guest]

I approved you, send me the file and I'll send it onto the list. You

should have no problem posting pics now. Just email, and attach the

files. Make sure they're small, yahoo doesn't accept attachments

over 1mb plus big pics are difficult for us to see. If you need

software to resize your pics easily, try www.irfanview.com It's

freeware, and good, good, good software. Easy to use. Make files

640x480'ish for best viewing within this group.

Welcome!!

kori

At 09:05 AM 12/16/2005, you wrote:

>Okay, I found it and will send it in ASAP...

>

> > > > > >

> > > > > > ,

> > > > > > Can you share pictures with us of her bare feet, and

> > pictures of

> > > > >her

> > > > > > in the brace also? (either through a website like yahoo

>pics,

> > > > > > photobucket etc. or through the CFPics yahoo group) Maybe

> > there is

> > > > > > something that we'll see in the pictures that will help

> > generate

> > > > >ideas

> > > > > > as to how to fix the issue.

> > > > > > Does she nap okay in the brace? I can't remember if you

> > said she

> > > > >was

> > > > > > in it fulltime still? She's got no issues during the day,

> > just at

> > > > > > night, right?

> > > > > > Does she like to sleep in a particular position (tummy,

>side

> > etc.)

> > > > >and

> > > > > > can't get comfortable?

> > > > > > I would suggest that you have your orthotist order the

> > adjustable

> > > > > > length red bar now, and when that comes in, you might have

> > better

> > > > >luck

> > > > > > in adjusting the length to find a more comfortable

>distance

> > for

> > > > >her.

> > > > > > Hang in there.....

> > > > > >

> > > > > > & (3-16-00, lcf)

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

ee,

Although I appreciate it, please don't feel the need to apologize.

Like I said, it was soooo late, and she was screaming again, and I

was not going to her. Like every night, it was killing me. When I

read: " if she is learning you'll take it off if she

> > > > screams loud enough, it could all be psychological to her,

not

> > > > physical anymore. " when she had spent nights (including

that night)of crying it out - which I hate, it was tough to take,

but afterall, you couldn't have known that I had been doing that for

awhile. I didn't really make that clear during my late-night typing

sessions. Anyway, no worries. Without this group, and the info that

I have found from you and others, I wouldn't know some of the things

that I now know to ask the doctor, like getting the new Markells,

for a start. I am hoping that since the new ones aren't the reverse

ones, that might be a big help. We'll see. Okay, I'm going to go try

to get a few minutes of sleep. Thanks again!

> > > > > >

> > > > > > Maybe the bar is too short, causing discomfort when

she

> lays

> > > > > down. I'd check on that first.

> > > > > >

> > > > > > If the bar is OK then I'd move on towards looking at

her

> > > > sleeping

> > > > > arrangment. Maybe her feet get stuck between the

slats of

> teh

> > > > crib

> > > > > and wake her up, or it's happened before and now she is

> > > > frightened

> > > > > of that happening again.

> > > > > >

> > > > > > Maybe just the noise of the fab hitting the slats

has

> come to

> > > > > frighten her.

> > > > > >

> > > > > > In either of those I would try putting her to sleep

in a

> play-

> > > > pen

> > > > > with net siding instead of crib with wood/metal slats.

> > > > > >

> > > > > > If not that, have you tried giving her a sleep-sack

> instead

> > > of

> > > > > blankets? Blankets get tangled on the bar and around

the

> baby

> > > > > causing frustration, etc.

> > > > > >

> > > > > > It may not be FAB related at all, ya know? Is she

> congested

> > > > and

> > > > > can't breath well laying down?

> > > > > >

> > > > > > Could it be bad dreams or night terrors have

invaded?

> Are

> > > > shadows

> > > > > on the wall freaking her out? Do the stuffed toys come

to

> life

> > > > in

> > > > > the dark?

> > > > > >

> > > > > > Um, acid reflux creeping in when she lays down?

> > > > > >

> > > > > > Is it related to your living conditions changing,

new

> house,

> > > > new

> > > > > bedroom, your husband going on tour, etc?

> > > > > >

> > > > > > At her age it could be a lot of things. It's easy

to

> assume

> > > > it's

> > > > > the FAB cuz it's so obvious but try to dig deeper if

you

> find

> > > no

> > > > > problems with the FAB.

> > > > > >

> > > > > > Does she have a really set bedtime routine? If not

aim

> to

> > > > have

> > > > > one for her, something she can count on every night to

> happen

> > > in

> > > > ABC

> > > > > order start to finish so she winds down and settles in

to

> > > > sleep.

> > > > > BAbies need that.

> > > > > >

> > > > > > Is she even tired at bed time? Could be too much

napy

> time

> > > > during

> > > > > the day ruining her desire to go to bed when you send

her.

> > > > > >

> > > > > > WEll, hope some of that might help you figure it

out.

> Good

> > > > luck!

> > > > > > s.

> > > > > > Brand New to Site:

Anyone

> > > have

> > > > > advice on getting baby comfortable at night w/DBB

> > > > > >

> > > > > >

> > > > > > Hi. I am new to this group, and am joining,

because I

> feel

> > > > like

> > > > > I am

> > > > > > the only one going through this in my town...My 10

> month

> > > old

> > > > was

> > > > > in

> > > > > > casts for 8 months (6 mos of poor casting- only to

> knee in

> > > > > military

> > > > > > hospital overseas), and then 2 mos with Ponceti

method

> at a

> > > > > > children's hospital here in FL. She has had the

Dennis

> > > Brown

> > > > Bar

> > > > > for

> > > > > > almost 2 months, and although she seems fine with

it

> during

> > > > the

> > > > > day,

> > > > > > she screams almost all night long. I think that as

> soon as

> > > > she

> > > > > gets

> > > > > > herself close to sleep, she turns to get

comfortable,

> and

> > > > > realizes

> > > > > > that she can't move her feet independently, then

starts

> > > > > screaming.

> > > > > > Once she is finally calm, the process starts all

over

> again

> > > > in a

> > > > > > matter of minutes. I am frazzled. My husband is

now

> gone

> > > for

> > > > 6

> > > > > > months with the Navy and I feel like the doctors

just

> kind

> > > > of

> > > > > shrug

> > > > > > their shoulders when I ask about this as if to

> say, " She's

> > > > going

> > > > > to

> > > > > > have to tough it out. " She is such a happy baby

during

> the

> > > > day,

> > > > > and

> > > > > > it is killing me that she is so frustrated and sad

at

> > > night.

> > > > I

> > > > > have

> > > > > > tried holding her, rubbing her, and even tried not

> going to

> > > > her

> > > > > at

> > > > > > all (which was the worst- I hated that she needed

me or

> > > help

> > > > and

> > > > > I

> > > > > > wouldn't go to her). I know that the DBB is

necessary

> for

> > > > her

> > > > > > development, but does anyone have any advice about

how

> to

> > > > make

> > > > > this

> > > > > > easier on her? What has worked for everyone else

for

> this

> > > > to be

> > > > > > long term?

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

I hope you did get some rest !

s.

Brand New to Site:

Anyone

> > > have

> > > > > advice on getting baby comfortable at night w/DBB

> > > > > >

> > > > > >

> > > > > > Hi. I am new to this group, and am joining,

because I

> feel

> > > > like

> > > > > I am

> > > > > > the only one going through this in my town...My 10

> month

> > > old

> > > > was

> > > > > in

> > > > > > casts for 8 months (6 mos of poor casting- only to

> knee in

> > > > > military

> > > > > > hospital overseas), and then 2 mos with Ponceti

method

> at a

> > > > > > children's hospital here in FL. She has had the

Dennis

> > > Brown

> > > > Bar

> > > > > for

> > > > > > almost 2 months, and although she seems fine with

it

> during

> > > > the

> > > > > day,

> > > > > > she screams almost all night long. I think that as

> soon as

> > > > she

> > > > > gets

> > > > > > herself close to sleep, she turns to get

comfortable,

> and

> > > > > realizes

> > > > > > that she can't move her feet independently, then

starts

> > > > > screaming.

> > > > > > Once she is finally calm, the process starts all

over

> again

> > > > in a

> > > > > > matter of minutes. I am frazzled. My husband is

now

> gone

> > > for

> > > > 6

> > > > > > months with the Navy and I feel like the doctors

just

> kind

> > > > of

> > > > > shrug

> > > > > > their shoulders when I ask about this as if to

> say, " She's

> > > > going

> > > > > to

> > > > > > have to tough it out. " She is such a happy baby

during

> the

> > > > day,

> > > > > and

> > > > > > it is killing me that she is so frustrated and sad

at

> > > night.

> > > > I

> > > > > have

> > > > > > tried holding her, rubbing her, and even tried not

> going to

> > > > her

> > > > > at

> > > > > > all (which was the worst- I hated that she needed

me or

> > > help

> > > > and

> > > > > I

> > > > > > wouldn't go to her). I know that the DBB is

necessary

> for

> > > > her

> > > > > > development, but does anyone have any advice about

how

> to

> > > > make

> > > > > this

> > > > > > easier on her? What has worked for everyone else

for

> this

> > > > to be

> > > > > > long term?

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >