Re: Raphael update/DBB questions

[Guest guest]

-

Congratulations on reaching this step in the process. It sounds like

Raphael is doing well and his feet are looking good. With regards to

the car seat-we used and still do a convertible carseat-starts rear

facing, becomes forward facing, and finally a booster. Our brand is

Eddie Bauer. It's been wonderful-although we didnt have any problems

with his carrier either(also an eddie bauer).

My son loves his sleep sack-he was a swaddler or should i call a

david burrito but by 8weeks we had kicked the swaddle part and

substituted with long sleeves. He now uses the long sleeve as a sort

of blanket-he pulls on his right arm sleeve with his left hand while

sucking his left thumb-its precious. He can't sleep without sleeves

though which was tough during the summer!

Tummy time-we would let him play with his bar/shoes on. To help him-

we sometimes propped him up/over a boppy pillow or a rolled blanket.

By 12 weeks he was a pro and holding his head up on his own. The

free time typically fell into bath period/get ready for bedtime so

that his shoes going on triggered his nightime routine. He now knows

that shoes on means its bedtime!!

Keep an eye on the angle of the shoes-one night won't hurt but

multiple nights would!!

Congrats again!

kathleen

mom to david 8/28/04 bcf fab 12/7

>

> Hi everyone,

>

> First, thanks for the advice on socks. I got 8 pairs of Baby Gap

0-6 month

> size, and the orthotist said they were perfect (well, he only said

that of the

> one pair we brought, but YKWIM).

>

> Raphael's post-tenotomy appointment was yesterday, and when I took

> his cast off in the morning, he did not like it! I guess it felt

funny to him.

> In addition to being fussy, he'd kick and then startle, like it

didn't do what

> he expected. But that fussiness was mild compared to his initial

reaction

> to the brace!

>

> Dr. Mosca says the correction looks fine, good flexibility, etc.

I was a little

> surprised since his corrected foot doesn't look like his normal

foot. His

> normal foot has a little bit of an arch, which I guess is unusual

in babies,

> and the cf is corrected to be completely flat. The skin on his

left leg where

> the cast was is also a bit lighter than on his right side, and his

thigh fat

> is bunched up over where the cast used to be. I hope that'll even

out in

> time!

>

> They warned us that he would be pretty upset about the brace for

> 24-48 hours. Dr. Mosca said these two days will test your love ---

meaning

> you gotta stick it out because without the brace he will relapse.

> He cited a study showing a 10% relapse rate when the brace is worn

> according to instructions and an 80% relapse rate when it isn't.

> I asked him about tapering down to 12/7 instead of going abruptly

> from 23/7 to 12/7. His reaction was that it wasn't necessary, but

that

> it couldn't hurt --- and he was glad to hear we were willing to do

more

> hours in the brace than he perscribed.

>

> Okay, questions:

>

> 1. Car seat: We have a Graco travel system (which we got for our

> older child 3.5 years ago). With the brace on (10 " bar), Rafe's

feet are

> almost at the end of the seat, and if they weren't, there'd be

problems

> because before the end his feet wouldn't fit between the sides. He

> already weighs about 16 lbs, and this seat is only rated to 20, so

> I think we'll be out of it pretty soon, but I'm wondering if

anyone's

> had any trouble with rear-facing carseats for kids in the DBB? It

seems

> that since it keeps him from tucking his legs together, he's going

to

> run into the back of the backseat sooner. Our next carseat for

him is

> a Britax roundabout, but I'd be interested in suggestions for

seats that

> work well from others who have BTDT.

>

> 2. Angle: This morning, about an hour after I took the brace off to

> check and stretch his feet (per instructions) and then put it back

on,

> I noticed that I'd gotten the angle wrong: about 40/85 instead of

> 45/75. I fixed it as soon as I noticed, and then worried that I

might have

> done the same thing over night last night. I know to double check

now,

> but I worry how bad it was to do that once. Any ideas?

Experiences?

>

> 3. Tummy time: I haven't tried tummy time in the brace yet, but

> how does that usually go? Raphael is 8 weeks old. Do you usually

do

> tummy time while the brace is off or on?

>

> 4. Swaddling: We used to swadle Raphael for nighttime sleeping

(but

> not naps), but we can't figure out how to do it with the brace on.

> Wrapping him the way we wrapped him before causes his knees to

> go together, and that can't be good. We have sleepsacks for him

> (and in fact were swaddling him over them). Our main goal is to

keep

> his arms snuggled up so he doesn't startle and wake himself up.

> Any ideas on how to achieve that same effect? Or is 8 weeks old

enough

> that we should just tough it out for a few nights and he'll get

more

> comfortable unswaddled?

>

> Thanks!

>

>

[Guest guest]

Thanks for the replies, Kathleen. I'll keep the Eddie Bauer in mind if we

have trouble with the Britax. My boys are both big, so that's probably

a factor (and we tend to put our height in our legs in this family, too).

From your answer, it sounds like you had the free time all in one lump,

towards the end of the day. That's what I was expecting to do, but the

orthotist said we should take his shoes off for a brief bit several times a day

to check on things. At first it sounded like that was just while we were

getting used to them, but when I pressed him, he said we should always

do it 3-4x/day. Did you get conflicting advice?

Thanks again,

[Guest guest]

-

After the adjustment period(and we had a blister to heal), we did

the 1 hour in the evening prior to bedtime. It was just easier to

take the shoes off/on only once a day. We weren't advised how to do

it-this just worked for us. When we were reduced to the 20 hours-we

did the 4 hours of freedom in the afternoon-again leading right up

to bedtime. is long-not heavy-so the EB carseat worked nicely.

glad i could help!

kathleen

>

> Thanks for the replies, Kathleen. I'll keep the Eddie Bauer in

mind if we

> have trouble with the Britax. My boys are both big, so that's

probably

> a factor (and we tend to put our height in our legs in this

family, too).

>

> From your answer, it sounds like you had the free time all in one

lump,

> towards the end of the day. That's what I was expecting to do,

but the

> orthotist said we should take his shoes off for a brief bit

several times a day

> to check on things. At first it sounded like that was just while

we were

> getting used to them, but when I pressed him, he said we should

always

> do it 3-4x/day. Did you get conflicting advice?

>

> Thanks again,

>

>

[Guest guest]

--- wrote:

> Hi everyone,

>

> First, thanks for the advice on socks. I got 8 pairs of Baby Gap 0-6 month

> size, and the orthotist said they were perfect (well, he only said that of

> the

> one pair we brought, but YKWIM).

>

> Raphael's post-tenotomy appointment was yesterday, and when I took

> his cast off in the morning, he did not like it! I guess it felt funny to

> him.

> In addition to being fussy, he'd kick and then startle, like it didn't do

> what

> he expected. But that fussiness was mild compared to his initial reaction

> to the brace!

Hi, !

The transition from cast to brace sure can be tough! His skin is probably

sensitive, and I imagine it does feel different for Raphael. I have the cutest

visual, though, of him kicking that little leg and startling.

> Dr. Mosca says the correction looks fine, good flexibility, etc. I was a

> little

> surprised since his corrected foot doesn't look like his normal foot. His

> normal foot has a little bit of an arch, which I guess is unusual in babies,

> and the cf is corrected to be completely flat. The skin on his left leg

> where

> the cast was is also a bit lighter than on his right side, and his thigh fat

> is bunched up over where the cast used to be. I hope that'll even out in

> time!

Y'know, I think the appearance of Rose's foot wasn't as encouraging as I

thought it would be the day it went into the brace. She also had a bit of an

arch in her non-clubfoot, so they did look different. Her feet still aren't

quite a " matched " set, but I think the appearance is only cosmetic.

The skin and thigh fat will all plump out and look much more normal once he's

out of the casts for a bit.

> They warned us that he would be pretty upset about the brace for

> 24-48 hours. Dr. Mosca said these two days will test your love --- meaning

> you gotta stick it out because without the brace he will relapse.

> He cited a study showing a 10% relapse rate when the brace is worn

> according to instructions and an 80% relapse rate when it isn't.

> I asked him about tapering down to 12/7 instead of going abruptly

> from 23/7 to 12/7. His reaction was that it wasn't necessary, but that

> it couldn't hurt --- and he was glad to hear we were willing to do more

> hours in the brace than he perscribed.

I remember receiving the advice to think of the brace as a cast for the first

several days. It just can't come off.

> Okay, questions:

>

> 1. Car seat: We have a Graco travel system (which we got for our

> older child 3.5 years ago). With the brace on (10 " bar), Rafe's feet are

> almost at the end of the seat, and if they weren't, there'd be problems

> because before the end his feet wouldn't fit between the sides. He

> already weighs about 16 lbs, and this seat is only rated to 20, so

> I think we'll be out of it pretty soon, but I'm wondering if anyone's

> had any trouble with rear-facing carseats for kids in the DBB? It seems

> that since it keeps him from tucking his legs together, he's going to

> run into the back of the backseat sooner. Our next carseat for him is

> a Britax roundabout, but I'd be interested in suggestions for seats that

> work well from others who have BTDT.

I don't have much to contribute here. Rose was pretty short, and we didn't

have carseat issues.

> 2. Angle: This morning, about an hour after I took the brace off to

> check and stretch his feet (per instructions) and then put it back on,

> I noticed that I'd gotten the angle wrong: about 40/85 instead of

> 45/75. I fixed it as soon as I noticed, and then worried that I might have

> done the same thing over night last night. I know to double check now,

> but I worry how bad it was to do that once. Any ideas? Experiences?

Rose's bar was set and didn't change, so I can't help you here much, either. i

think, though, that it wouldn't be a problem if it was set at 40/85 for a short

time.

> 3. Tummy time: I haven't tried tummy time in the brace yet, but

> how does that usually go? Raphael is 8 weeks old. Do you usually do

> tummy time while the brace is off or on?

I think you can do it with the brace on or off.

> 4. Swaddling: We used to swadle Raphael for nighttime sleeping (but

> not naps), but we can't figure out how to do it with the brace on.

> Wrapping him the way we wrapped him before causes his knees to

> go together, and that can't be good. We have sleepsacks for him

> (and in fact were swaddling him over them). Our main goal is to keep

> his arms snuggled up so he doesn't startle and wake himself up.

> Any ideas on how to achieve that same effect? Or is 8 weeks old enough

> that we should just tough it out for a few nights and he'll get more

> comfortable unswaddled?

Oh, dear, this might be a tough one! I'm not sure what to do here. I hope you

receive some helpful advice.

I'm so glad to see an update regarding Raphael. I imagine he's growing so

fast. I can't believe he's already in the brace.

Joy

Rose (1-99) http://www.geocities.com/joybelle15/rosesclubfootpage.html

Iris (2-01)

Spencer (3-03)

Grant (9-05) http://www.caringbridge.org/visit/grantphilip

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

Good to hear from you Joy, and thanks for the reply. I hope

all is well with Grant!

As for the brace being non-negotiable, I've been fantasizing

about explaining it all to Rafe when he's old enough to

understand, but will of course have forgotten about the whole

ordeal.