Re: Update from the deliriously tired house

[Guest guest]

Oh girl! We're going thru the same ordeal right now! Nick used to

go to sleep fairly easily, cast and all. Now it's fussy and crying

at nighttime and he wakes A LOT more than he used to. We're not

getting any sleep here, either. Only my husbands' parents to help a

little, but no other family or friends. We live in NJ where I

relocated from Michigan, so my fam/friends are there. You're right,

this part is the hardest! I just keep saying " It will soon be

over " . And I hate to wish his little life away, but I need him to

be able to sleep again! We have a 3 1/2 yr old to care for, as

well. I know we will make it through - soon! Hang in there,

nothing is forever!

PS Nick wears the one piece jumpsuits (snaps from head to toe) from

s. They're on sale right now (fall line) for $5 each and I

think I must have gotten about 15 of them!

>

> Well, this is day 5.

>

> Once I changed the bar to the 8 setting, he has still be fussy,

but

> nothing like he was, DURING THE DAYTIME.

> Night has been horrible.

> He has woken up every 10-15 min no exaggeration for the past 4

> nights. I have only been getting 2 hr of sleep per night(after I

> take the brace off at 5am for 2 hr of his off time). I have 2

other

> young children to take care of, a house, a traveling husband, no

> family or close friends here. How I am suppose to function?

>

> What can I do to make him more comfortable?

> He doesn't fuss during the day like this, so I don't think it is a

> pain issue or improper correction or fit(even though we have

checked

> many times). He used to fall asleep on his side, legs curled up,

> holding his toes(that was his comfort thing-he won't take pacy,

> blankie, thumb, etc). I have tried pillows, laying him on my

chest,

> across my lap, nothing is working.

>

> This totally sucks.

>

> And I jsut realized last night that I am never going to see my

baby,

> my youngest toddle around in footed sleepers. I realized when I

> went to get him some pjs from his drawer, and ALL of them are

> footed. *crying* I know that is silly, but it makes me so sad.

>

[Guest guest]

,

This is EXCATLY what happened with my daughter, and what led me to

find this group...Once out of the casts, days were fine, but nights

were awful! She screamed like crazy, and it broke my heart.

Eventually, she would pass out out of exhaustion, and would sleep

for (literlly) a few minutes, but as soon as she would move or

something, she was up screaming again. This lasted for two months.

She had the same shoes as Isaac (it sounds like), the Markells

without the heel cut out. She was in the reverse last tarsos. Is

this what you have (they look like they are on the wrong feet), or

the straight last (toes aren't pointed in a specific direction)?

Anyway, her doctor just told me to 'Suck it up. All mothers complain

of this. You two ( and I) just have to get used to it.' I

remember crying in the office, because I was so exhausted (My

husband is gone a lot for work, so it was just me dealing with it.).

I got a pat on the back and a " Hang in there. " When I posted for

help, I got a lot of responses. Some people thought that maybe it

wasn't the shoes at all, since she was okay during the day. I knew

that it was the shoes (just my maternal instincts) and even tried

taking them off of her one night. She (finally) slept soundly for a

whole night. (Meanwhile, I felt so guilty about not having the shoes

on.)

I took the pictures of the Markells with the heels cut out to my

doc, who said that he would order them, but in the meantime, she was

ready for her second size of shoes, and I had to take what they had,

again the reverse last tarsos (no heel cut out). I cut the heels out

at home, and it was just like always, days were fine, nights were

awful. On the fourth day (with her second set of shoes), I had

finally had a breakthrough (I

thought). She hadn't kicked her shoes off all day. When bathtime

came, I didn't want to mess up my 'perfect placement' of the shoes,

so I skipped her bath (bad Mommy), and dressed her in her pjs with

out taking off the shoes. That night, her screaming seemed worse

than usual (Didn't think it was possible to get worse). The next

day, she had this horrible pressure sore on the top of both of her

feet. (If I had taken those stupid shoes off of her for her bath, I

would have caught it sooner.)

My GENIUS doc said that we should give her a break from the shoes

for awhile, and not even put healing casts on her. I asked about the

s, and they said that they don't deal with those. Got

transferred to another ortho within the same hospital (I think the

first doc was tired of my constant questions), who suggested at our

first visit with her that the only way to make my daughter

comfortable was to schedule her for major surgery (bilateral

achilles tenetomy with posterior ankle capsulotomy) I came home and

emailed Dr. Ponseti. He looked at pics of 's feet (He wants

pics from specific angles). Dr. Ponseti said that has

atypical clubfeet, and that the Markells were only acting as torture

devices for her poor feet (even the two months before the pressure

sore). Is it possible that Isaac's foot is atypical? The atypical

thing is probably something that you have heard before, but I really

thought that I was going crazy when she was fine in her shoes by

day, but completely different at night. It is hard to get anyone to

take you seriously, because they are obviously fine with the shoes

if they tolerate them during the day, right?!

We eventually drove up to Iowa from Florida to see Dr. Ponseti. He

again confirmed that her feet are atypical, and prescribed the

s for her. Are these an option for you? I know you are

exhausted. I am so sorry. It is possible that this is not even what

is going on with Isaac, and that he really is still within his

needed adjustment time, but boy, does this sound like what I went

through! If it doesn't get better, email me directly, if you want. I

am usually up too late, emailing back and forth with my dh in the

Navy. Even if you just need to vent, I don't mind! =-)

( 2/1/05 bcf)

>

> Well, this is day 5.

>

> Once I changed the bar to the 8 setting, he has still be fussy,

but

> nothing like he was, DURING THE DAYTIME.

> Night has been horrible.

> He has woken up every 10-15 min no exaggeration for the past 4

> nights. I have only been getting 2 hr of sleep per night(after I

> take the brace off at 5am for 2 hr of his off time). I have 2

other

> young children to take care of, a house, a traveling husband, no

> family or close friends here. How I am suppose to function?

>

> What can I do to make him more comfortable?

> He doesn't fuss during the day like this, so I don't think it is a

> pain issue or improper correction or fit(even though we have

checked

> many times). He used to fall asleep on his side, legs curled up,

> holding his toes(that was his comfort thing-he won't take pacy,

> blankie, thumb, etc). I have tried pillows, laying him on my

chest,

> across my lap, nothing is working.

>

> This totally sucks.

>

> And I jsut realized last night that I am never going to see my

baby,

> my youngest toddle around in footed sleepers. I realized when I

> went to get him some pjs from his drawer, and ALL of them are

> footed. *crying* I know that is silly, but it makes me so sad.

>

[Guest guest]

Glad he's doing better during the day, that is a start. Can you cut the toes out

of his socks so he can get to them, even in the brace? I swear my dd was putting

her bar up to her forehead before she went into the hip spica so he will get

used to it and be able to grab those little toes again. Any red spots or sores?

Wish I could watch your kiddos for you so you could get some rest! About the

pj's, well, they have adorable long john style ones They are faves here

anyway, so I have that to look forward to when dd is out of her spica

cast...maybe that would work for your little guy too? They are very cute

Marcia

Update from the deliriously tired house

Well, this is day 5.

Once I changed the bar to the 8 setting, he has still be fussy, but

nothing like he was, DURING THE DAYTIME.

Night has been horrible.

He has woken up every 10-15 min no exaggeration for the past 4

nights. I have only been getting 2 hr of sleep per night(after I

take the brace off at 5am for 2 hr of his off time). I have 2 other

young children to take care of, a house, a traveling husband, no

family or close friends here. How I am suppose to function?

What can I do to make him more comfortable?

He doesn't fuss during the day like this, so I don't think it is a

pain issue or improper correction or fit(even though we have checked

many times). He used to fall asleep on his side, legs curled up,

holding his toes(that was his comfort thing-he won't take pacy,

blankie, thumb, etc). I have tried pillows, laying him on my chest,

across my lap, nothing is working.

This totally sucks.

And I jsut realized last night that I am never going to see my baby,

my youngest toddle around in footed sleepers. I realized when I

went to get him some pjs from his drawer, and ALL of them are

footed. *crying* I know that is silly, but it makes me so sad.

[Guest guest]

is very restless in her new FAB at night, too, although she doesn't cry,

just wakes up much more frequently. Since she is in bed with me, she wakes me

up, sometimes 30-40 times a night. She won't settle in her bassinet so

co-sleeping is actually our best option. We are on day 4 in it. I have three

other kids, ages 3, 5, and 10 so I empathize. I get no daytime naps, either and

get very little outside help. I am just hanging in there until she adjusts and

sleeps better because I know there is no other option.

Your sharing your sadness about the footed sleepers made me cry, too. Sometimes

I get carried away by sadness at all that I have missed because of this birth

defect and the treatment for it. Yes, I am grateful it isn't a worse defect and

is correctable but that doesn't replace the loss of cuddling my baby and having

her melt into me (not possible because of casts and shoes with a bar), getting

her some pretty shoes as an infant, not having to explain to every stranger on

the street why she is in casts or wearing these shoes, bathing her in the early

weeks (not possible because of casts), just enjoying her without looking at her

feet constantly and hoping they will look normal someday, the money put on

credit cards for treatment and shoes, the clothes she can't wear because of

these contraptions on her feet...I could go on and on. Like you, I don't want

to sound morose or ungrateful. is a blessing however she came to us and

I thank God for her, even for her two tiny clubbed feet. He made her fearfully

and wonderfully, as it says in the Psalms. But my heart as her mother still

breaks in places I didn't even know I had...for her, for me, for the rest of our

family and what this has cost us...If you have not ever read the poem " Welcome

to Holland " which was written by a mom with a Down Syndrome child, you should.

It rings a true note in me and in many parents with a child who was " different

from what they had expected " or " different from the norm " . I know that someday

it will be a memory as I watch my daughter run like the wind down a soccer field

or dance ballet...but it is a hard experience before it becomes a memory. Don't

feel silly for your feelings. These losses are REAL, not imagined. Hugs to

you,

Carol and , bcf, 10-27-05, FAB 23/7

Re: Update from the deliriously tired house

Oh girl! We're going thru the same ordeal right now! Nick used to

go to sleep fairly easily, cast and all. Now it's fussy and crying

at nighttime and he wakes A LOT more than he used to. We're not

getting any sleep here, either. Only my husbands' parents to help a

little, but no other family or friends. We live in NJ where I

relocated from Michigan, so my fam/friends are there. You're right,

this part is the hardest! I just keep saying " It will soon be

over " . And I hate to wish his little life away, but I need him to

be able to sleep again! We have a 3 1/2 yr old to care for, as

well. I know we will make it through - soon! Hang in there,

nothing is forever!

PS Nick wears the one piece jumpsuits (snaps from head to toe) from

s. They're on sale right now (fall line) for $5 each and I

think I must have gotten about 15 of them!

>

> Well, this is day 5.

>

> Once I changed the bar to the 8 setting, he has still be fussy,

but

> nothing like he was, DURING THE DAYTIME.

> Night has been horrible.

> He has woken up every 10-15 min no exaggeration for the past 4

> nights. I have only been getting 2 hr of sleep per night(after I

> take the brace off at 5am for 2 hr of his off time). I have 2

other

> young children to take care of, a house, a traveling husband, no

> family or close friends here. How I am suppose to function?

>

> What can I do to make him more comfortable?

> He doesn't fuss during the day like this, so I don't think it is a

> pain issue or improper correction or fit(even though we have

checked

> many times). He used to fall asleep on his side, legs curled up,

> holding his toes(that was his comfort thing-he won't take pacy,

> blankie, thumb, etc). I have tried pillows, laying him on my

chest,

> across my lap, nothing is working.

>

> This totally sucks.

>

> And I jsut realized last night that I am never going to see my

baby,

> my youngest toddle around in footed sleepers. I realized when I

> went to get him some pjs from his drawer, and ALL of them are

> footed. *crying* I know that is silly, but it makes me so sad.

>

[Guest guest]

Thank you both for voicing what I have felt too guilty to say

myself!! I have also felt sorry for us not being able to enjoy some

of those simple things in life with , but haven't wanted to

voice it because there are so many people suffering with things MUCH

worse than us. I absolutely LOVE the poem you mentioned! I remember

reading it and sobbing because it's soooooo right on with it's message!

I think I may have a copy of the poem if anyone wants it... I will

double check and maybe I can post it somewhere.

Thanks again!

Stacee and 9/24/05 rcf, P/M 20/7

> is very restless in her new FAB at night, too, although she

> doesn't cry, just wakes up much more frequently. Since she is in

> bed with me, she wakes me up, sometimes 30-40 times a night. She

> won't settle in her bassinet so co-sleeping is actually our best

> option. We are on day 4 in it. I have three other kids, ages 3,

> 5, and 10 so I empathize. I get no daytime naps, either and get

> very little outside help. I am just hanging in there until she

> adjusts and sleeps better because I know there is no other option.

>

> Your sharing your sadness about the footed sleepers made me cry,

> too. Sometimes I get carried away by sadness at all that I have

> missed because of this birth defect and the treatment for it. Yes,

> I am grateful it isn't a worse defect and is correctable but that

> doesn't replace the loss of cuddling my baby and having her melt

> into me (not possible because of casts and shoes with a bar),

> getting her some pretty shoes as an infant, not having to explain

> to every stranger on the street why she is in casts or wearing

> these shoes, bathing her in the early weeks (not possible because

> of casts), just enjoying her without looking at her feet constantly

> and hoping they will look normal someday, the money put on credit

> cards for treatment and shoes, the clothes she can't wear because

> of these contraptions on her feet...I could go on and on. Like

> you, I don't want to sound morose or ungrateful. is a

> blessing however she came to us and I thank God for her, even for

> her two tiny clubbed feet. He made her fearfully and wonderfully,

> as it says in the Psalms. But my heart as her mother still breaks

> in places I didn't even know I had...for her, for me, for the rest

> of our family and what this has cost us...If you have not ever read

> the poem " Welcome to Holland " which was written by a mom with a

> Down Syndrome child, you should. It rings a true note in me and in

> many parents with a child who was " different from what they had

> expected " or " different from the norm " . I know that someday it

> will be a memory as I watch my daughter run like the wind down a

> soccer field or dance ballet...but it is a hard experience before

> it becomes a memory. Don't feel silly for your feelings. These

> losses are REAL, not imagined. Hugs to you,

>

> Carol and , bcf, 10-27-05, FAB 23/7

> Re: Update from the deliriously

> tired house

>

>

> Oh girl! We're going thru the same ordeal right now! Nick used to

> go to sleep fairly easily, cast and all. Now it's fussy and crying

> at nighttime and he wakes A LOT more than he used to. We're not

> getting any sleep here, either. Only my husbands' parents to help a

> little, but no other family or friends. We live in NJ where I

> relocated from Michigan, so my fam/friends are there. You're right,

> this part is the hardest! I just keep saying " It will soon be

> over " . And I hate to wish his little life away, but I need him to

> be able to sleep again! We have a 3 1/2 yr old to care for, as

> well. I know we will make it through - soon! Hang in there,

> nothing is forever!

>

> PS Nick wears the one piece jumpsuits (snaps from head to toe) from

> s. They're on sale right now (fall line) for $5 each and I

> think I must have gotten about 15 of them!

>

>

>

>

>

> >

> > Well, this is day 5.

> >

> > Once I changed the bar to the 8 setting, he has still be fussy,

> but

> > nothing like he was, DURING THE DAYTIME.

> > Night has been horrible.

> > He has woken up every 10-15 min no exaggeration for the past 4

> > nights. I have only been getting 2 hr of sleep per night(after I

> > take the brace off at 5am for 2 hr of his off time). I have 2

> other

> > young children to take care of, a house, a traveling husband, no

> > family or close friends here. How I am suppose to function?

> >

> > What can I do to make him more comfortable?

> > He doesn't fuss during the day like this, so I don't think it is a

> > pain issue or improper correction or fit(even though we have

> checked

> > many times). He used to fall asleep on his side, legs curled up,

> > holding his toes(that was his comfort thing-he won't take pacy,

> > blankie, thumb, etc). I have tried pillows, laying him on my

> chest,

> > across my lap, nothing is working.

> >

> > This totally sucks.

> >

> > And I jsut realized last night that I am never going to see my

> baby,

> > my youngest toddle around in footed sleepers. I realized when I

> > went to get him some pjs from his drawer, and ALL of them are

> > footed. *crying* I know that is silly, but it makes me so sad.

> >

>

>

>

>

>

>

>

>

[Guest guest]

LOL! Love the " lucky fin " reference. We may have to borrow that!

Lily's older sister Tessa definitely went through a Nemo phase a

couple of years ago. It was the only thing she watched for a month

or two (she called it " momo, " very cute). Thanks for the laugh.

Kim

Lily, 3/28/05, lcf, P/M FAB, 16/7

Tessa, 7/17/02

Seth Katz wrote:

We just HATE not being able to use the PJs with the feet - we all love

them so much - even our 7-1/2 yr old even asks us to buy him some - but we

can't find any that big. But it's a small price to pay to fix his foot.

BTW, we (mom & dad, that is) haven't slept well lately - but we'll

survive. If the little guy gets a late nap he can be up till 1 or 2am,

and I have to stay up to put on his shoes. He tolerates the shoes fairly

well, but I have to wait till he falls asleep before I can put them on.

Then, fortunately, he usually sleeps through the night with them on. No

more kicking them off since we got the right-size bar and use the

all-important tips & tricks document.

One more thing. I often refer to his clubfoot as his " lucky fin " . For

those of you (is that possible!) who don't get the reference, go right now

to buy Finding Nemo and watch with your kids. (I say buy because by the

time you've rented it 3 or 4 or 200 times you should have bought it

anyway).

- Seth

(meir, lcf, 1/29/04)

[Guest guest]

,

My first instinct is still bar length. Can you move one shoe over one

more hole to give him one more inch? Would moving both shoes over one

more hole be too far off from what you see when you hold the bar up to

his shoulders? My son always likes his bar long - and his first

signal that it is getting too short is night waking. He is fine

during the day, but he will start waking up at night, wakes up every

1/2 hour crying his head off. Oh, does he sleep okay with it on

during nap? Or is he napping?

If lengthening his bar one more hole doesn't work I'm inclined to

wonder if it is still just adjustment period. From what you have

described I feel like his feet are corrected, and his feet are staying

in the shoes now right? No blisters or sores? Have you tried

different types of music to help him sleep? Classical music, nature

sounds, ocean noises?? Have you tried putting a rolled up blanket

under his legs?

The sleeping on the tummy thing may be a good option. My son started

doing this at about 8 months. He was having fits trying to get

comfortable at night. I would rock him to sleep, he would be out like

a light but as soon as I laid him down he would wake up. Then I tried

rocking him to sleep and then laying him down on his tummy and it just

worked.

You just keep trying stuff and we'll keep trying to help! Now, how do

you get through this? #1: The house can wait. No house cleaning is

worth it when you are going through this. Do the bare minimum of

laundry, let the dishes sit one day, make frozen pizza for dinner.

How old are your other kids? Are there things they could do to help

you? My daughter is 4 and she gets a big kick out of putting

groceries away, putting (non-fragile) dishes away, picking up her own

dirty clothes, especially with a quarter or dime for her piggy bank as

incentive. If there are things that need to suffer so that you can

get some sleep, let them suffer. Give the kids baths every couple

days instead of everyday - it's winter, they're playing inside mostly,

how dirty can they get?

Also, if you want to, join CFPics

http://health.groups.yahoo.com/group/CFPics/ and send us some pics of

Issac's tootsies (and his sweet face!). We can take a look and see if

there's something we are missing here. I still think the bar length

could be the culprit if he is fine during the day, but sometimes

seeing a pic of the feet is worth a thousand words. If you join

CFPics you'll get an email with a short survey that has to be

completed, complete the survey and send it back and I can approve you

right away.

Hope some of this helps!

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 14hrs/day)

>

> Well, this is day 5.

>

> Once I changed the bar to the 8 setting, he has still be fussy, but

> nothing like he was, DURING THE DAYTIME.

> Night has been horrible.

> He has woken up every 10-15 min no exaggeration for the past 4

> nights. I have only been getting 2 hr of sleep per night(after I

> take the brace off at 5am for 2 hr of his off time). I have 2 other

> young children to take care of, a house, a traveling husband, no

> family or close friends here. How I am suppose to function?

>

> What can I do to make him more comfortable?

> He doesn't fuss during the day like this, so I don't think it is a

> pain issue or improper correction or fit(even though we have checked

> many times). He used to fall asleep on his side, legs curled up,

> holding his toes(that was his comfort thing-he won't take pacy,

> blankie, thumb, etc). I have tried pillows, laying him on my chest,

> across my lap, nothing is working.

>

> This totally sucks.

>

> And I jsut realized last night that I am never going to see my baby,

> my youngest toddle around in footed sleepers. I realized when I

> went to get him some pjs from his drawer, and ALL of them are

> footed. *crying* I know that is silly, but it makes me so sad.

>

[Guest guest]

I agree with here, our daughter was at 10 " at 2 months old. I

would think that an 8 " bar at his age would still be way too small.

Try putting him at 10 " for sure! And posting a good pic of him in his

brace so that we can see his brace in proportion to his shoulders

would be helpful too. We would love to help you get this figured out,

it's so hard when you're goin on no sleep!

& Grace 18 mos

urcf FAB 13hrs

> >

> > Well, this is day 5.

> >

> > Once I changed the bar to the 8 setting, he has still be fussy,

but

> > nothing like he was, DURING THE DAYTIME.

> > Night has been horrible.

> > He has woken up every 10-15 min no exaggeration for the past 4

> > nights. I have only been getting 2 hr of sleep per night(after I

> > take the brace off at 5am for 2 hr of his off time). I have 2

other

> > young children to take care of, a house, a traveling husband, no

> > family or close friends here. How I am suppose to function?

> >

> > What can I do to make him more comfortable?

> > He doesn't fuss during the day like this, so I don't think it is

a

> > pain issue or improper correction or fit(even though we have

checked

> > many times). He used to fall asleep on his side, legs curled up,

> > holding his toes(that was his comfort thing-he won't take pacy,

> > blankie, thumb, etc). I have tried pillows, laying him on my

chest,

> > across my lap, nothing is working.

> >

> > This totally sucks.

> >

> > And I jsut realized last night that I am never going to see my

baby,

> > my youngest toddle around in footed sleepers. I realized when I

> > went to get him some pjs from his drawer, and ALL of them are

> > footed. *crying* I know that is silly, but it makes me so sad.

> >

>

[Guest guest]

Thank u for posting the link to the Pics Group. I don't have a lot

of time to surf through and find things here. I signed up to join.

I will try to take & post some pics tonight after my dh gets home.

The only pic I have is the one where he was in the 6 slot(which is

8 " ). He is now in the 8 slot(10 " ) across from center of hole to

center of hole. His back/shoulder to shoulder measurement is 8 "

across, and his heel to heel is 6.5 " with him in the 8 slot.

He is doing good during the day, learned how to roll over both ways

the first day, is trying to sit up, will sit unassisted really good

(I think the bar balances out his big noggin, lol).

His naps on day 1-3 were sporadic and short, but the past two days,

he has slept in the swing, in my lap, in my husband's lap, and on

our bed(with me watching, of course). He is sleeping from 30 to 1.25

hr. So just a tad shorter than his normal of 45 min to 2 hr.

He has no blisters, red spots, purple spots, etc.

My other children are 2.5 yr and 5.5 yr(in kindergarden).

He has only slipped out of the shoes once yesterday. I tightened

the strap one more hole while holding the foot flat, and he hasn't

come back out.

I am going to try moving one of the feet over one hole this

afternoon. Thanks for all the suggestions.

> > >

> > > Well, this is day 5.

> > >

> > > Once I changed the bar to the 8 setting, he has still be

fussy,

> but

> > > nothing like he was, DURING THE DAYTIME.

> > > Night has been horrible.

> > > He has woken up every 10-15 min no exaggeration for the past 4

> > > nights. I have only been getting 2 hr of sleep per night

(after I

> > > take the brace off at 5am for 2 hr of his off time). I have 2

> other

> > > young children to take care of, a house, a traveling husband,

no

> > > family or close friends here. How I am suppose to function?

> > >

> > > What can I do to make him more comfortable?

> > > He doesn't fuss during the day like this, so I don't think it

is

> a

> > > pain issue or improper correction or fit(even though we have

> checked

> > > many times). He used to fall asleep on his side, legs curled

up,

> > > holding his toes(that was his comfort thing-he won't take

pacy,

> > > blankie, thumb, etc). I have tried pillows, laying him on my

> chest,

> > > across my lap, nothing is working.

> > >

> > > This totally sucks.

> > >

> > > And I jsut realized last night that I am never going to see my

> baby,

> > > my youngest toddle around in footed sleepers. I realized when

I

> > > went to get him some pjs from his drawer, and ALL of them are

> > > footed. *crying* I know that is silly, but it makes me so

sad.

> > >

> >

>

[Guest guest]

Seth,

I just thought I would mention that you can get footed blanket

sleepers in kids sizes all the way to size 16 from Land's End. Not

cheap but very good quality.

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 14hrs/day)

>

> We just HATE not being able to use the PJs with the feet - we all love

> them so much - even our 7-1/2 yr old even asks us to buy him some -

but we

> can't find any that big. But it's a small price to pay to fix his foot.

>

> BTW, we (mom & dad, that is) haven't slept well lately - but we'll

> survive. If the little guy gets a late nap he can be up till 1 or 2am,

> and I have to stay up to put on his shoes. He tolerates the shoes

fairly

> well, but I have to wait till he falls asleep before I can put them on.

> Then, fortunately, he usually sleeps through the night with them on. No

> more kicking them off since we got the right-size bar and use the

> all-important tips & tricks document.

>

> One more thing. I often refer to his clubfoot as his " lucky fin " . For

> those of you (is that possible!) who don't get the reference, go

right now

> to buy Finding Nemo and watch with your kids. (I say buy because by the

> time you've rented it 3 or 4 or 200 times you should have bought it

> anyway).

>

> - Seth

> (meir, lcf, 1/29/04)

>

[Guest guest]

Okay, so I had a reply all typed up and my three year old turned off the

computer because he wanted to play " Green Eggs and Ham " and I wasn't done when

he wanted. So while I went to get the baby out of the garbage again, he turned

off the computer. So I told him no " Green Eggs and Ham " and he got mad and went

to his bed and fell asleep. Then the monkeys I babysit came and it was feeding

time at the zoo. Now, the all the babies are in bed and the one not asleep is

wandering around waiting for my three year old to wake up and play. So, what

did I say in the first message?

Another thought to throw into the mix. Could Isaac be mad because now he

doesn't have is " comfort " thingy. All of mine have had something that is just

their comfort and taking it away is not a fun time. It doesn't even take a

stubborn baby to have issues over loosing it. Just a thought. The toeless sock

idea might work if that is the case.

You ask how are you supposed to function? You are not supposed to function.

You are supposed to exist. When you function you accomplish work and are

productive. When you exist you make sure everyone is fairly safe and fed,

period. This is hard. That is okay. We can all think of many " things " that

are worse than clubfeet and braces and all. So, since things could be worse we

shouldn't have a hard time with this right? Wrong. It is hard, that is okay.

It doesn't make you a terrible mother, wife, housekeeper, individual, anything

just because you are struggling. The key is to not give up. Sometimes you

exist from minute to minute, but you don't give up. It is okay to cry over

little things like footed jammies. It is okay to cry over no sleep. It is not

okay to beat yourself with a limp noodle over a house that is not spotless or

even close. It is not okay to beat yourself up because your other kids get less

attention right now. (this is a reminder to the queen of the limp noodle, me).

If you feel like you are going insane, let's rent a bus and go together. I can

be tour guide since I have made the trip so many times. You do what you can do,

not what you should do if you were perfect. Some days your best is to put all

the kids into a fairly safe room and sleep in front of the door so they have to

climb over you to get out. Some nights your best is to hold a baby and cry all

night long. Beauty sleep really is overrated, even though it is welcome.

There is a time to be the domestic engineer of the year, but more often you just

get to be mommy (which is better anyway).

This is more a reminder to me than anything else, so don't feel like I think you

aren't handling this well. You are doing amazing.

It does get better. Others told me the same thing when we went through our

rough time. It was hard to believe at the time, but it is true. One day you

will wake up (that means you will get to go to sleep) and realize that clubfeet

and the shoes aren't so bad anymore. You will beam when others tell you how

well your son gets around. As sweet as footed jammies are, those first steps

are sweeter. You will want to scream, " Look he's walking " . You will laugh when

the first phrase he obeys is, " Come here, it is time to take your shoes off. "

You will laugh (the first time) he runs when you bring his shoes out to put on

him. And you will be thankful the first million times you pull him off of the

table, for Dr. Ponseti and others like him that make such perfect little feet.

I promise, it will happen. When it does you will also realize that you are a

stronger, better person because of your struggles. You will think of all the

people you have met throughout the clubfoot journey and be thankful you know

them. You will realize how much better you life is all because of a little

monkey feet. And it will be worth it.

Just keep on keepen on.

Mom to Tenny 7/15/04 rt. cf. FAB 14/7

And the others

Update from the deliriously tired house

Well, this is day 5.

Once I changed the bar to the 8 setting, he has still be fussy, but

nothing like he was, DURING THE DAYTIME.

Night has been horrible.

He has woken up every 10-15 min no exaggeration for the past 4

nights. I have only been getting 2 hr of sleep per night(after I

take the brace off at 5am for 2 hr of his off time). I have 2 other

young children to take care of, a house, a traveling husband, no

family or close friends here. How I am suppose to function?

What can I do to make him more comfortable?

He doesn't fuss during the day like this, so I don't think it is a

pain issue or improper correction or fit(even though we have checked

many times). He used to fall asleep on his side, legs curled up,

holding his toes(that was his comfort thing-he won't take pacy,

blankie, thumb, etc). I have tried pillows, laying him on my chest,

across my lap, nothing is working.

This totally sucks.

And I jsut realized last night that I am never going to see my baby,

my youngest toddle around in footed sleepers. I realized when I

went to get him some pjs from his drawer, and ALL of them are

footed. *crying* I know that is silly, but it makes me so sad.

[Guest guest]

Well here's another perspective on the whole thing. I've never held one of my

babies minus all the contraptions except those first 3 days with prior to

his 4th day casting - and the two weeks prior to casting on Everett. It's

neither here nor there, it's just reality and the grass really isn't any greener

on any other side.

I wonder why you would stay up till 1 or 2 in the morning rather than adjust

your child to putting his shoes on at bed time (and thus, building a positive

habit rather than draining yourself of sleep and building a negative habit).

You might figure it this way: If he throws a fit putting them on at the

scheduled hour, is he going to throw a fit past 2 in the morning or be worn out

and asleep by 2 a few nights in a row? After the initial adjustment period of a

few days he'd be wearing his shoes on a reasonable schedule and you'd be getting

the sleep you need. These shoes are going to be part of your life (his life)

for a few years to come - unless you plan on staying up half the night until he

graduates from them I'd be working towards setting some ground rules pretty

soon. Again, it's just reality here talking; the world can't stop turning for

a kid in a FAB for very long until the world just self destructs on itself from

the pressure.

s.

Re: Re: Update from the deliriously tired house

We just HATE not being able to use the PJs with the feet - we all love

them so much - even our 7-1/2 yr old even asks us to buy him some - but we

can't find any that big. But it's a small price to pay to fix his foot.

BTW, we (mom & dad, that is) haven't slept well lately - but we'll

survive. If the little guy gets a late nap he can be up till 1 or 2am,

and I have to stay up to put on his shoes. He tolerates the shoes fairly

well, but I have to wait till he falls asleep before I can put them on.

Then, fortunately, he usually sleeps through the night with them on. No

more kicking them off since we got the right-size bar and use the

all-important tips & tricks document.

One more thing. I often refer to his clubfoot as his " lucky fin " . For

those of you (is that possible!) who don't get the reference, go right now

to buy Finding Nemo and watch with your kids. (I say buy because by the

time you've rented it 3 or 4 or 200 times you should have bought it

anyway).

- Seth

(meir, lcf, 1/29/04)

[Guest guest]

Great post =)

& Grace

>

> Okay, so I had a reply all typed up and my three year old turned

off the computer because he wanted to play " Green Eggs and Ham " and I

wasn't done when he wanted. So while I went to get the baby out of

the garbage again, he turned off the computer. So I told him

no " Green Eggs and Ham " and he got mad and went to his bed and fell

asleep. Then the monkeys I babysit came and it was feeding time at

the zoo. Now, the all the babies are in bed and the one not asleep

is wandering around waiting for my three year old to wake up and

play. So, what did I say in the first message?

>

> Another thought to throw into the mix. Could Isaac be mad because

now he doesn't have is " comfort " thingy. All of mine have had

something that is just their comfort and taking it away is not a fun

time. It doesn't even take a stubborn baby to have issues over

loosing it. Just a thought. The toeless sock idea might work if

that is the case.

>

> You ask how are you supposed to function? You are not supposed to

function. You are supposed to exist. When you function you

accomplish work and are productive. When you exist you make sure

everyone is fairly safe and fed, period. This is hard. That is

okay. We can all think of many " things " that are worse than clubfeet

and braces and all. So, since things could be worse we shouldn't

have a hard time with this right? Wrong. It is hard, that is okay.

It doesn't make you a terrible mother, wife, housekeeper, individual,

anything just because you are struggling. The key is to not give

up. Sometimes you exist from minute to minute, but you don't give

up. It is okay to cry over little things like footed jammies. It is

okay to cry over no sleep. It is not okay to beat yourself with a

limp noodle over a house that is not spotless or even close. It is

not okay to beat yourself up because your other kids get less

attention right now. (this is a reminder to the queen of the limp

noodle, me). If you feel like you are going insane, let's rent a bus

and go together. I can be tour guide since I have made the trip so

many times. You do what you can do, not what you should do if you

were perfect. Some days your best is to put all the kids into a

fairly safe room and sleep in front of the door so they have to climb

over you to get out. Some nights your best is to hold a baby and cry

all night long. Beauty sleep really is overrated, even though it is

welcome.

> There is a time to be the domestic engineer of the year, but more

often you just get to be mommy (which is better anyway).

> This is more a reminder to me than anything else, so don't feel

like I think you aren't handling this well. You are doing amazing.

> It does get better. Others told me the same thing when we went

through our rough time. It was hard to believe at the time, but it

is true. One day you will wake up (that means you will get to go to

sleep) and realize that clubfeet and the shoes aren't so bad

anymore. You will beam when others tell you how well your son gets

around. As sweet as footed jammies are, those first steps are

sweeter. You will want to scream, " Look he's walking " . You will

laugh when the first phrase he obeys is, " Come here, it is time to

take your shoes off. " You will laugh (the first time) he runs when

you bring his shoes out to put on him. And you will be thankful the

first million times you pull him off of the table, for Dr. Ponseti

and others like him that make such perfect little feet. I promise,

it will happen. When it does you will also realize that you are a

stronger, better person because of your struggles. You will think of

all the people you have met throughout the clubfoot journey and be

thankful you know them. You will realize how much better you life is

all because of a little monkey feet. And it will be worth it.

>

> Just keep on keepen on.

>

>

> Mom to Tenny 7/15/04 rt. cf. FAB 14/7

> And the others

[Guest guest]

natalie-

what a beautiful post! and so needed!

kathleen

mom to david(a monkey that is walking finally) fab 12/7 8/28/04

>

> Okay, so I had a reply all typed up and my three year old turned

off the computer because he wanted to play " Green Eggs and Ham " and

I wasn't done when he wanted. So while I went to get the baby out

of the garbage again, he turned off the computer. So I told him

no " Green Eggs and Ham " and he got mad and went to his bed and fell

asleep. Then the monkeys I babysit came and it was feeding time at

the zoo. Now, the all the babies are in bed and the one not asleep

is wandering around waiting for my three year old to wake up and

play. So, what did I say in the first message?

>

> Another thought to throw into the mix. Could Isaac be mad because

now he doesn't have is " comfort " thingy. All of mine have had

something that is just their comfort and taking it away is not a fun

time. It doesn't even take a stubborn baby to have issues over

loosing it. Just a thought. The toeless sock idea might work if

that is the case.

>

> You ask how are you supposed to function? You are not supposed to

function. You are supposed to exist. When you function you

accomplish work and are productive. When you exist you make sure

everyone is fairly safe and fed, period. This is hard. That is

okay. We can all think of many " things " that are worse than

clubfeet and braces and all. So, since things could be worse we

shouldn't have a hard time with this right? Wrong. It is hard,

that is okay. It doesn't make you a terrible mother, wife,

housekeeper, individual, anything just because you are struggling.

The key is to not give up. Sometimes you exist from minute to

minute, but you don't give up. It is okay to cry over little things

like footed jammies. It is okay to cry over no sleep. It is not

okay to beat yourself with a limp noodle over a house that is not

spotless or even close. It is not okay to beat yourself up because

your other kids get less attention right now. (this is a reminder

to the queen of the limp noodle, me). If you feel like you are

going insane, let's rent a bus and go together. I can be tour guide

since I have made the trip so many times. You do what you can do,

not what you should do if you were perfect. Some days your best is

to put all the kids into a fairly safe room and sleep in front of

the door so they have to climb over you to get out. Some nights your

best is to hold a baby and cry all night long. Beauty sleep really

is overrated, even though it is welcome.

> There is a time to be the domestic engineer of the year, but more

often you just get to be mommy (which is better anyway).

> This is more a reminder to me than anything else, so don't feel

like I think you aren't handling this well. You are doing amazing.

> It does get better. Others told me the same thing when we went

through our rough time. It was hard to believe at the time, but it

is true. One day you will wake up (that means you will get to go to

sleep) and realize that clubfeet and the shoes aren't so bad

anymore. You will beam when others tell you how well your son gets

around. As sweet as footed jammies are, those first steps are

sweeter. You will want to scream, " Look he's walking " . You will

laugh when the first phrase he obeys is, " Come here, it is time to

take your shoes off. " You will laugh (the first time) he runs when

you bring his shoes out to put on him. And you will be thankful the

first million times you pull him off of the table, for Dr. Ponseti

and others like him that make such perfect little feet. I promise,

it will happen. When it does you will also realize that you are a

stronger, better person because of your struggles. You will think

of all the people you have met throughout the clubfoot journey and

be thankful you know them. You will realize how much better you

life is all because of a little monkey feet. And it will be worth

it.

>

> Just keep on keepen on.

>

>

> Mom to Tenny 7/15/04 rt. cf. FAB 14/7

> And the others

>

>

> Update from the deliriously tired

house

>

>

> Well, this is day 5.

>

> Once I changed the bar to the 8 setting, he has still be fussy,

but

> nothing like he was, DURING THE DAYTIME.

> Night has been horrible.

> He has woken up every 10-15 min no exaggeration for the past 4

> nights. I have only been getting 2 hr of sleep per night(after

I

> take the brace off at 5am for 2 hr of his off time). I have 2

other

> young children to take care of, a house, a traveling husband, no

> family or close friends here. How I am suppose to function?

>

> What can I do to make him more comfortable?

> He doesn't fuss during the day like this, so I don't think it is

a

> pain issue or improper correction or fit(even though we have

checked

> many times). He used to fall asleep on his side, legs curled

up,

> holding his toes(that was his comfort thing-he won't take pacy,

> blankie, thumb, etc). I have tried pillows, laying him on my

chest,

> across my lap, nothing is working.

>

> This totally sucks.

>

> And I jsut realized last night that I am never going to see my

baby,

> my youngest toddle around in footed sleepers. I realized when I

> went to get him some pjs from his drawer, and ALL of them are

> footed. *crying* I know that is silly, but it makes me so sad.

>

>

>

>

>

>

>

[Guest guest]

OK, I really am the old bat today, I apologize, but I think a bit of a slap

across the face (figuratively) is in order here regarding getting all sad and

depressed over the style of pajamas a kid can wear.

Like are we missing the forest for the trees here? If you kid CAN toddle that

is a blessing, should we really waste our energy on being upset he can't toddle

in the type of pajamas you think he ought to toddle in? Holy cow. Go save

starving children in the gutters of Chicago if you have that much energy to blow

on such non-essential issues.

s.

Re: Update from the deliriously tired house

Ohh...I know it's sad once we start thinking about certain things our clubfoot

kids miss out on (or we miss out on) . Sleep deprivation certainly adds to the

whole drama of this outlook. My first son used to dig his little toes in my

belly when he was sleeping with us and the crazy thing is that I actually felt

comforted when he did this. It made me aware of him being next to me. I realized

my little guy won't be able to do this since he will be in a brace at night for

his entire young life (well, til 4 anyway). And the crazy thing is, there's no

saying he would have even done this even without the brace, but in my mind I see

it as a loss because of the brace. We do the best we can under the

circumstances. I am so sorry for what you're going through. I wish I could help.

Hang in there as best as you can. Sleep during the day as often as you get a

chance. Don't forget that you can always come on here and vent.

lotsolove4my2babes wrote: Well, this is day 5.

Once I changed the bar to the 8 setting, he has still be fussy, but

nothing like he was, DURING THE DAYTIME.

Night has been horrible.

He has woken up every 10-15 min no exaggeration for the past 4

nights. I have only been getting 2 hr of sleep per night(after I

take the brace off at 5am for 2 hr of his off time). I have 2 other

young children to take care of, a house, a traveling husband, no

family or close friends here. How I am suppose to function?

What can I do to make him more comfortable?

He doesn't fuss during the day like this, so I don't think it is a

pain issue or improper correction or fit(even though we have checked

many times). He used to fall asleep on his side, legs curled up,

holding his toes(that was his comfort thing-he won't take pacy,

blankie, thumb, etc). I have tried pillows, laying him on my chest,

across my lap, nothing is working.

This totally sucks.

And I jsut realized last night that I am never going to see my baby,

my youngest toddle around in footed sleepers. I realized when I

went to get him some pjs from his drawer, and ALL of them are

footed. *crying* I know that is silly, but it makes me so sad.

[Guest guest]

Thanks. I do buy from Lands' End, but never thought to look for sleepers

there.

> Seth,

> I just thought I would mention that you can get footed blanket

> sleepers in kids sizes all the way to size 16 from Land's End. Not

> cheap but very good quality.

>

>

> Mom to Jenna (4/7/01) & amp; Sammy (9/25/04, RCF, Dobbs' brace, 14hrs/day)

>

>

>

> >

> > We just HATE not being able to use the PJs with the feet - we all love

> > them so much - even our 7-1/2 yr old even asks us to buy him some -

> but we

> > can't find any that big. But it's a small price to pay to fix his

> foot.

> >

> > BTW, we (mom & amp; dad, that is) haven't slept well lately - but we'll

> > survive. If the little guy gets a late nap he can be up till 1 or 2am,

> > and I have to stay up to put on his shoes. He tolerates the shoes

> fairly

> > well, but I have to wait till he falls asleep before I can put them on.

> > Then, fortunately, he usually sleeps through the night with them on.

> No

> > more kicking them off since we got the right-size bar and use the

> > all-important tips & amp; tricks document.

> >

> > One more thing. I often refer to his clubfoot as his & quot;lucky

> fin & quot;. For

> > those of you (is that possible!) who don't get the reference, go

> right now

> > to buy Finding Nemo and watch with your kids. (I say buy because by

> the

> > time you've rented it 3 or 4 or 200 times you should have bought it

> > anyway).

> >

> > - Seth

> > (meir, lcf, 1/29/04)

> >

>

>

>

>

>

>

>

>

[Guest guest]

Love ya ! You are awesome!!

>

> Okay, so I had a reply all typed up and my three year old turned off

the computer because he wanted to play " Green Eggs and Ham " and I

wasn't done when he wanted. So while I went to get the baby out of

the garbage again, he turned off the computer. So I told him no

" Green Eggs and Ham " and he got mad and went to his bed and fell

asleep. Then the monkeys I babysit came and it was feeding time at

the zoo. Now, the all the babies are in bed and the one not asleep is

wandering around waiting for my three year old to wake up and play.

So, what did I say in the first message?

>

> Another thought to throw into the mix. Could Isaac be mad because

now he doesn't have is " comfort " thingy. All of mine have had

something that is just their comfort and taking it away is not a fun

time. It doesn't even take a stubborn baby to have issues over

loosing it. Just a thought. The toeless sock idea might work if that

is the case.

>

> You ask how are you supposed to function? You are not supposed to

function. You are supposed to exist. When you function you

accomplish work and are productive. When you exist you make sure

everyone is fairly safe and fed, period. This is hard. That is okay.

We can all think of many " things " that are worse than clubfeet and

braces and all. So, since things could be worse we shouldn't have a

hard time with this right? Wrong. It is hard, that is okay. It

doesn't make you a terrible mother, wife, housekeeper, individual,

anything just because you are struggling. The key is to not give up.

Sometimes you exist from minute to minute, but you don't give up. It

is okay to cry over little things like footed jammies. It is okay to

cry over no sleep. It is not okay to beat yourself with a limp noodle

over a house that is not spotless or even close. It is not okay to

beat yourself up because your other kids get less attention right now.

(this is a reminder to the queen of the limp noodle, me). If you

feel like you are going insane, let's rent a bus and go together. I

can be tour guide since I have made the trip so many times. You do

what you can do, not what you should do if you were perfect. Some

days your best is to put all the kids into a fairly safe room and

sleep in front of the door so they have to climb over you to get out.

Some nights your best is to hold a baby and cry all night long.

Beauty sleep really is overrated, even though it is welcome.

> There is a time to be the domestic engineer of the year, but more

often you just get to be mommy (which is better anyway).

> This is more a reminder to me than anything else, so don't feel like

I think you aren't handling this well. You are doing amazing.

> It does get better. Others told me the same thing when we went

through our rough time. It was hard to believe at the time, but it is

true. One day you will wake up (that means you will get to go to

sleep) and realize that clubfeet and the shoes aren't so bad anymore.

You will beam when others tell you how well your son gets around. As

sweet as footed jammies are, those first steps are sweeter. You will

want to scream, " Look he's walking " . You will laugh when the first

phrase he obeys is, " Come here, it is time to take your shoes off. "

You will laugh (the first time) he runs when you bring his shoes out

to put on him. And you will be thankful the first million times you

pull him off of the table, for Dr. Ponseti and others like him that

make such perfect little feet. I promise, it will happen. When it

does you will also realize that you are a stronger, better person

because of your struggles. You will think of all the people you have

met throughout the clubfoot journey and be thankful you know them.

You will realize how much better you life is all because of a little

monkey feet. And it will be worth it.

>

> Just keep on keepen on.

>

>

> Mom to Tenny 7/15/04 rt. cf. FAB 14/7

> And the others

>

>

> Update from the deliriously tired house

>

>

> Well, this is day 5.

>

> Once I changed the bar to the 8 setting, he has still be fussy, but

> nothing like he was, DURING THE DAYTIME.

> Night has been horrible.

> He has woken up every 10-15 min no exaggeration for the past 4

> nights. I have only been getting 2 hr of sleep per night(after I

> take the brace off at 5am for 2 hr of his off time). I have 2 other

> young children to take care of, a house, a traveling husband, no

> family or close friends here. How I am suppose to function?

>

> What can I do to make him more comfortable?

> He doesn't fuss during the day like this, so I don't think it is a

> pain issue or improper correction or fit(even though we have checked

> many times). He used to fall asleep on his side, legs curled up,

> holding his toes(that was his comfort thing-he won't take pacy,

> blankie, thumb, etc). I have tried pillows, laying him on my chest,

> across my lap, nothing is working.

>

> This totally sucks.

>

> And I jsut realized last night that I am never going to see my baby,

> my youngest toddle around in footed sleepers. I realized when I

> went to get him some pjs from his drawer, and ALL of them are

> footed. *crying* I know that is silly, but it makes me so sad.

>

>

>

>

>

>

>

[Guest guest]

Well said, !!

leenernd wrote: natalie-

what a beautiful post! and so needed!

kathleen

mom to david(a monkey that is walking finally) fab 12/7 8/28/04

>

> Okay, so I had a reply all typed up and my three year old turned

off the computer because he wanted to play " Green Eggs and Ham " and

I wasn't done when he wanted. So while I went to get the baby out

of the garbage again, he turned off the computer. So I told him

no " Green Eggs and Ham " and he got mad and went to his bed and fell

asleep. Then the monkeys I babysit came and it was feeding time at

the zoo. Now, the all the babies are in bed and the one not asleep

is wandering around waiting for my three year old to wake up and

play. So, what did I say in the first message?

>

> Another thought to throw into the mix. Could Isaac be mad because

now he doesn't have is " comfort " thingy. All of mine have had

something that is just their comfort and taking it away is not a fun

time. It doesn't even take a stubborn baby to have issues over

loosing it. Just a thought. The toeless sock idea might work if

that is the case.

>

> You ask how are you supposed to function? You are not supposed to

function. You are supposed to exist. When you function you

accomplish work and are productive. When you exist you make sure

everyone is fairly safe and fed, period. This is hard. That is

okay. We can all think of many " things " that are worse than

clubfeet and braces and all. So, since things could be worse we

shouldn't have a hard time with this right? Wrong. It is hard,

that is okay. It doesn't make you a terrible mother, wife,

housekeeper, individual, anything just because you are struggling.

The key is to not give up. Sometimes you exist from minute to

minute, but you don't give up. It is okay to cry over little things

like footed jammies. It is okay to cry over no sleep. It is not

okay to beat yourself with a limp noodle over a house that is not

spotless or even close. It is not okay to beat yourself up because

your other kids get less attention right now. (this is a reminder

to the queen of the limp noodle, me). If you feel like you are

going insane, let's rent a bus and go together. I can be tour guide

since I have made the trip so many times. You do what you can do,

not what you should do if you were perfect. Some days your best is

to put all the kids into a fairly safe room and sleep in front of

the door so they have to climb over you to get out. Some nights your

best is to hold a baby and cry all night long. Beauty sleep really

is overrated, even though it is welcome.

> There is a time to be the domestic engineer of the year, but more

often you just get to be mommy (which is better anyway).

> This is more a reminder to me than anything else, so don't feel

like I think you aren't handling this well. You are doing amazing.

> It does get better. Others told me the same thing when we went

through our rough time. It was hard to believe at the time, but it

is true. One day you will wake up (that means you will get to go to

sleep) and realize that clubfeet and the shoes aren't so bad

anymore. You will beam when others tell you how well your son gets

around. As sweet as footed jammies are, those first steps are

sweeter. You will want to scream, " Look he's walking " . You will

laugh when the first phrase he obeys is, " Come here, it is time to

take your shoes off. " You will laugh (the first time) he runs when

you bring his shoes out to put on him. And you will be thankful the

first million times you pull him off of the table, for Dr. Ponseti

and others like him that make such perfect little feet. I promise,

it will happen. When it does you will also realize that you are a

stronger, better person because of your struggles. You will think

of all the people you have met throughout the clubfoot journey and

be thankful you know them. You will realize how much better you

life is all because of a little monkey feet. And it will be worth

it.

>

> Just keep on keepen on.

>

>

> Mom to Tenny 7/15/04 rt. cf. FAB 14/7

> And the others

>

>

> Update from the deliriously tired

house

>

>

> Well, this is day 5.

>

> Once I changed the bar to the 8 setting, he has still be fussy,

but

> nothing like he was, DURING THE DAYTIME.

> Night has been horrible.

> He has woken up every 10-15 min no exaggeration for the past 4

> nights. I have only been getting 2 hr of sleep per night(after

I

> take the brace off at 5am for 2 hr of his off time). I have 2

other

> young children to take care of, a house, a traveling husband, no

> family or close friends here. How I am suppose to function?

>

> What can I do to make him more comfortable?

> He doesn't fuss during the day like this, so I don't think it is

a

> pain issue or improper correction or fit(even though we have

checked

> many times). He used to fall asleep on his side, legs curled

up,

> holding his toes(that was his comfort thing-he won't take pacy,

> blankie, thumb, etc). I have tried pillows, laying him on my

chest,

> across my lap, nothing is working.

>

> This totally sucks.

>

> And I jsut realized last night that I am never going to see my

baby,

> my youngest toddle around in footed sleepers. I realized when I

> went to get him some pjs from his drawer, and ALL of them are

> footed. *crying* I know that is silly, but it makes me so sad.

>

>

>

>

>

>

>

[Guest guest]

,

I see your membership pending there. Just fill out and return the

survey - it should have come to whatever email addy you used to join

the group.

thanks,

> > > >

> > > > Well, this is day 5.

> > > >

> > > > Once I changed the bar to the 8 setting, he has still be

> fussy,

> > but

> > > > nothing like he was, DURING THE DAYTIME.

> > > > Night has been horrible.

> > > > He has woken up every 10-15 min no exaggeration for the past 4

> > > > nights. I have only been getting 2 hr of sleep per night

> (after I

> > > > take the brace off at 5am for 2 hr of his off time). I have 2

> > other

> > > > young children to take care of, a house, a traveling husband,

> no

> > > > family or close friends here. How I am suppose to function?

> > > >

> > > > What can I do to make him more comfortable?

> > > > He doesn't fuss during the day like this, so I don't think it

> is

> > a

> > > > pain issue or improper correction or fit(even though we have

> > checked

> > > > many times). He used to fall asleep on his side, legs curled

> up,

> > > > holding his toes(that was his comfort thing-he won't take

> pacy,

> > > > blankie, thumb, etc). I have tried pillows, laying him on my

> > chest,

> > > > across my lap, nothing is working.

> > > >

> > > > This totally sucks.

> > > >

> > > > And I jsut realized last night that I am never going to see my

> > baby,

> > > > my youngest toddle around in footed sleepers. I realized when

> I

> > > > went to get him some pjs from his drawer, and ALL of them are

> > > > footed. *crying* I know that is silly, but it makes me so

> sad.

> > > >

> > >

> >

>

[Guest guest]

So sorry that I posted my sad thought. I didn't realize that it

would invoke such strong reactions. Of course, I am extremely happy

that he will be able to toddle one day, but I didn't realize that

meant I could not regret not having some experiences with him that I

have had with my other two. If I was obsessing over it, that would

be different, but I know I am not alone in feeling some sadness, yet

enjoying many other things.

Notice that out of all my posts, that one sentence or two has gotten

this much notice.

I am disappointed that this " support " board is turning out to be

this way. Thanks to all the people that have actually tried to help

me with my concerns.

Well, this is day 5.

>

> Once I changed the bar to the 8 setting, he has still be fussy,

but

> nothing like he was, DURING THE DAYTIME.

> Night has been horrible.

> He has woken up every 10-15 min no exaggeration for the past 4

> nights. I have only been getting 2 hr of sleep per night(after

I

> take the brace off at 5am for 2 hr of his off time). I have 2

other

> young children to take care of, a house, a traveling husband, no

> family or close friends here. How I am suppose to function?

>

> What can I do to make him more comfortable?

> He doesn't fuss during the day like this, so I don't think it is

a

> pain issue or improper correction or fit(even though we have

checked

> many times). He used to fall asleep on his side, legs curled

up,

> holding his toes(that was his comfort thing-he won't take pacy,

> blankie, thumb, etc). I have tried pillows, laying him on my

chest,

> across my lap, nothing is working.

>

> This totally sucks.

>

> And I jsut realized last night that I am never going to see my

baby,

> my youngest toddle around in footed sleepers. I realized when I

> went to get him some pjs from his drawer, and ALL of them are

> footed. *crying* I know that is silly, but it makes me so sad.

>

>

>

>

>

>

>

[Guest guest]

I've got two issues. One is the extreme fighting that goes on if I try to

put the shoes on while he's awake, and I hate physically fighting to do it

- it takes a lot longer and is quite aggravating at the time. The other

side is the hour or two of screaming the first 3 days. I could handle it

better than my wife (though I'm not thrilled with it), and I have to

convince her to let it happen.

I know I'm setting up for bedtime problems - with the other kids we went

through the " regular " crying it out to go to sleep deal and it only took a

few nights to get that straight. But adding the physical struggle of

getting the shoes on is frightening.

In other words, I know what I should do, but I also know what I've been

doing that at least gets him to wear the shoes.

When I get up the courage to " do the right thing " I'll let y'all know.

For now I'm trying to get him to nap before 2pm so we don't have a

problem.

- Seth

(meir, lcf, 1/29/04)

> Well here's another perspective on the whole thing. I've never held

> one of my babies minus all the contraptions except those first 3 days

> with prior to his 4th day casting - and the two weeks prior to

> casting on Everett. It's neither here nor there, it's just reality

> and the grass really isn't any greener on any other side.

>

> I wonder why you would stay up till 1 or 2 in the morning rather than

> adjust your child to putting his shoes on at bed time (and thus, building

> a positive habit rather than draining yourself of sleep and building a

> negative habit).

>

> You might figure it this way: If he throws a fit putting them on at the

> scheduled hour, is he going to throw a fit past 2 in the morning or be

> worn out and asleep by 2 a few nights in a row? After the initial

> adjustment period of a few days he'd be wearing his shoes on a reasonable

> schedule and you'd be getting the sleep you need. These shoes are going

> to be part of your life (his life) for a few years to come - unless you

> plan on staying up half the night until he graduates from them I'd be

> working towards setting some ground rules pretty soon. Again, it's just

> reality here talking; the world can't stop turning for a kid in a FAB for

> very long until the world just self destructs on itself from the

> pressure.

>

> s.

>

>

> Re: Re: Update from the deliriously tired

> house

>

>

> We just HATE not being able to use the PJs with the feet - we all love

> them so much - even our 7-1/2 yr old even asks us to buy him some - but

> we

> can't find any that big. But it's a small price to pay to fix his

> foot.

>

> BTW, we (mom & amp; dad, that is) haven't slept well lately - but we'll

> survive. If the little guy gets a late nap he can be up till 1 or 2am,

> and I have to stay up to put on his shoes. He tolerates the shoes

> fairly

> well, but I have to wait till he falls asleep before I can put them on.

> Then, fortunately, he usually sleeps through the night with them on.

> No

> more kicking them off since we got the right-size bar and use the

> all-important tips & amp; tricks document.

>

> One more thing. I often refer to his clubfoot as his & quot;lucky

> fin & quot;. For

> those of you (is that possible!) who don't get the reference, go right

> now

> to buy Finding Nemo and watch with your kids. (I say buy because by

> the

> time you've rented it 3 or 4 or 200 times you should have bought it

> anyway).

>

> - Seth

> (meir, lcf, 1/29/04)

>

>

>

[Guest guest]

,

Don't mind ee, she's just cranky because she's 8 months pregnant. And

Stressed.

P.S. We love you ee!

lotsolove4my2babes wrote: So sorry that I posted

my sad thought. I didn't realize that it

would invoke such strong reactions. Of course, I am extremely happy

that he will be able to toddle one day, but I didn't realize that

meant I could not regret not having some experiences with him that I

have had with my other two. If I was obsessing over it, that would

be different, but I know I am not alone in feeling some sadness, yet

enjoying many other things.

Notice that out of all my posts, that one sentence or two has gotten

this much notice.

I am disappointed that this " support " board is turning out to be

this way. Thanks to all the people that have actually tried to help

me with my concerns.

Well, this is day 5.

>

> Once I changed the bar to the 8 setting, he has still be fussy,

but

> nothing like he was, DURING THE DAYTIME.

> Night has been horrible.

> He has woken up every 10-15 min no exaggeration for the past 4

> nights. I have only been getting 2 hr of sleep per night(after

I

> take the brace off at 5am for 2 hr of his off time). I have 2

other

> young children to take care of, a house, a traveling husband, no

> family or close friends here. How I am suppose to function?

>

> What can I do to make him more comfortable?

> He doesn't fuss during the day like this, so I don't think it is

a

> pain issue or improper correction or fit(even though we have

checked

> many times). He used to fall asleep on his side, legs curled

up,

> holding his toes(that was his comfort thing-he won't take pacy,

> blankie, thumb, etc). I have tried pillows, laying him on my

chest,

> across my lap, nothing is working.

>

> This totally sucks.

>

> And I jsut realized last night that I am never going to see my

baby,

> my youngest toddle around in footed sleepers. I realized when I

> went to get him some pjs from his drawer, and ALL of them are

> footed. *crying* I know that is silly, but it makes me so sad.

>

>

>

>

>

>

>

[Guest guest]

I don't know if you have already tried or this has already been said, but maybe

you could try to put the shoes on when he is asleep. We had the same problem and

for us this solved it al.

Good luck,

Corina

Re: Re: Update from the deliriously tired house

I've got two issues. One is the extreme fighting that goes on if I try to

put the shoes on while he's awake, and I hate physically fighting to do it

- it takes a lot longer and is quite aggravating at the time. The other

side is the hour or two of screaming the first 3 days. I could handle it

better than my wife (though I'm not thrilled with it), and I have to

convince her to let it happen.

I know I'm setting up for bedtime problems - with the other kids we went

through the " regular " crying it out to go to sleep deal and it only took a

few nights to get that straight. But adding the physical struggle of

getting the shoes on is frightening.

In other words, I know what I should do, but I also know what I've been

doing that at least gets him to wear the shoes.

When I get up the courage to " do the right thing " I'll let y'all know.

For now I'm trying to get him to nap before 2pm so we don't have a

problem.

- Seth

(meir, lcf, 1/29/04)

> Well here's another perspective on the whole thing. I've never held

> one of my babies minus all the contraptions except those first 3 days

> with prior to his 4th day casting - and the two weeks prior to

> casting on Everett. It's neither here nor there, it's just reality

> and the grass really isn't any greener on any other side.

>

> I wonder why you would stay up till 1 or 2 in the morning rather than

> adjust your child to putting his shoes on at bed time (and thus, building

> a positive habit rather than draining yourself of sleep and building a

> negative habit).

>

> You might figure it this way: If he throws a fit putting them on at the

> scheduled hour, is he going to throw a fit past 2 in the morning or be

> worn out and asleep by 2 a few nights in a row? After the initial

> adjustment period of a few days he'd be wearing his shoes on a reasonable

> schedule and you'd be getting the sleep you need. These shoes are going

> to be part of your life (his life) for a few years to come - unless you

> plan on staying up half the night until he graduates from them I'd be

> working towards setting some ground rules pretty soon. Again, it's just

> reality here talking; the world can't stop turning for a kid in a FAB for

> very long until the world just self destructs on itself from the

> pressure.

>

> s.

>

>

> Re: Re: Update from the deliriously tired

> house

>

>

> We just HATE not being able to use the PJs with the feet - we all love

> them so much - even our 7-1/2 yr old even asks us to buy him some - but

> we

> can't find any that big. But it's a small price to pay to fix his

> foot.

>

> BTW, we (mom & amp; dad, that is) haven't slept well lately - but we'll

> survive. If the little guy gets a late nap he can be up till 1 or 2am,

> and I have to stay up to put on his shoes. He tolerates the shoes

> fairly

> well, but I have to wait till he falls asleep before I can put them on.

> Then, fortunately, he usually sleeps through the night with them on.

> No

> more kicking them off since we got the right-size bar and use the

> all-important tips & amp; tricks document.

>

> One more thing. I often refer to his clubfoot as his & quot;lucky

> fin & quot;. For

> those of you (is that possible!) who don't get the reference, go right

> now

> to buy Finding Nemo and watch with your kids. (I say buy because by

> the

> time you've rented it 3 or 4 or 200 times you should have bought it

> anyway).

>

> - Seth

> (meir, lcf, 1/29/04)

>

>

>

[Guest guest]

That's exactly what I do. And usually he sleeps through the night without

complaining. It's just that when he has a late nap (not when I'm home to

put on the shoes then, of course), his nighttime bedtime gets out of wack,

which means if I want him to wear the shoes I have to be awake when he

falls asleep to put them on and toss (oops, I mean ever so gently place)

him in the crib.

I (and apparrently you too) in theory would be better off if it were part

of " pre-bedtime " routine - putting them on before he fell asleep. But

this is the way it is for now.

- Seth

> I don't know if you have already tried or this has already been said,

> but maybe you could try to put the shoes on when he is asleep. We had

> the same problem and for us this solved it al.

> Good luck,

> Corina

>

> Re: Re: Update from the deliriously

> tired house

>

>

> I've got two issues. One is the extreme fighting that goes on if I

> try to

> put the shoes on while he's awake, and I hate physically fighting

> to do it

> - it takes a lot longer and is quite aggravating at the time. The

> other

> side is the hour or two of screaming the first 3 days. I could

> handle it

> better than my wife (though I'm not thrilled with it), and I have

> to

> convince her to let it happen.

>

> I know I'm setting up for bedtime problems - with the other kids we

> went

> through the & quot;regular & quot; crying it out to go to sleep deal

> and it only took a

> few nights to get that straight. But adding the physical struggle

> of

> getting the shoes on is frightening.

>

> In other words, I know what I should do, but I also know what I've

> been

> doing that at least gets him to wear the shoes.

>

> When I get up the courage to & quot;do the right thing & quot; I'll

> let y'all know.

> For now I'm trying to get him to nap before 2pm so we don't have a

> problem.

>

> - Seth

> (meir, lcf, 1/29/04)

>

> > Well here's another perspective on the whole thing. I've

> never held

> > one of my babies minus all the contraptions except those first 3

> days

> > with prior to his 4th day casting - and the two weeks prior

> to

> > casting on Everett. It's neither here nor there, it's just

> reality

> > and the grass really isn't any greener on any other side.

> >

> > I wonder why you would stay up till 1 or 2 in the morning rather

> than

> > adjust your child to putting his shoes on at bed time (and thus,

> building

> > a positive habit rather than draining yourself of sleep and

> building a

> > negative habit).

> >

> > You might figure it this way: If he throws a fit putting them

> on at the

> > scheduled hour, is he going to throw a fit past 2 in the morning

> or be

> > worn out and asleep by 2 a few nights in a row? After the

> initial

> > adjustment period of a few days he'd be wearing his shoes on a

> reasonable

> > schedule and you'd be getting the sleep you need. These shoes

> are going

> > to be part of your life (his life) for a few years to come -

> unless you

> > plan on staying up half the night until he graduates from them

> I'd be

> > working towards setting some ground rules pretty soon. Again,

> it's just

> > reality here talking; the world can't stop turning for a kid in a

> FAB for

> > very long until the world just self destructs on itself from the

> > pressure.

> >

> > s.

> >

> >

> > Re: Re: Update from the

> deliriously tired

> > house

> >

> >

> > We just HATE not being able to use the PJs with the feet - we

> all love

> > them so much - even our 7-1/2 yr old even asks us to buy him

> some - but

> > we

> > can't find any that big. But it's a small price to pay to fix

> his

> > foot.

> >

> > BTW, we (mom & amp;amp; dad, that is) haven't slept well lately

> - but we'll

> > survive. If the little guy gets a late nap he can be up till

> 1 or 2am,

> > and I have to stay up to put on his shoes. He tolerates the

> shoes

> > fairly

> > well, but I have to wait till he falls asleep before I can put

> them on.

> > Then, fortunately, he usually sleeps through the night with

> them on.

> > No

> > more kicking them off since we got the right-size bar and use

> the

> > all-important tips & amp;amp; tricks document.

> >

> > One more thing. I often refer to his clubfoot as his

> & amp;quot;lucky

> > fin & amp;quot;. For

> > those of you (is that possible!) who don't get the reference,

> go right

> > now

> > to buy Finding Nemo and watch with your kids. (I say buy

> because by

> > the

> > time you've rented it 3 or 4 or 200 times you should have

> bought it

> > anyway).

> >

> > - Seth

> > (meir, lcf, 1/29/04)

> >

> >

> >

[Guest guest]

Hello,

I completely agree that there are certain experiences that we miss out on

because of the clubfeet. Of course, like all of you, I am grateful that it

isn't something worse yet it's understandable to be wistful when you think

of all of the things that you mentioned below. Of course we would all rather

not deal with this, that's just normal.

I too always think of that Psalm where it says that the Lord knit her

together in my womb. It's hard not to wonder why it happened or wish it were

otherwise, especially in those first few hormonal, sleep-deprived weeks. I

guess, as a woman of faith, I just have to trust that everything will work

itself out for good. I know that all of our little ones are true blessings!

We have a friend whose son was born missing half of his foot on one side. He

has a prosthetic foot. I didn't even know this until a few months ago as he

runs, jumps, and plays as any other child. His father says that he goes to

the War Amps camps every year and that they are the most amazing group of

kids with incredible attitudes and spirits. He feels that because they have

had some challenges that most kids don't face, they become strong,

accepting, positive and capable children. I know that having a clubfoot that

is totally corrected and looks great is different than having a prosthetic

but it was still very uplifting to hear how highly he speaks of this

experience he's had with his son and how inspirational all of those children

are.

Anyway, thanks Carol for your post. It really is nice to know that I'm not

alone in my feelings. Your post was very authentic and encouraging!

I hope will adjust soon to the FAB so that you can get some more

rest. It really is challenging when you don't get any daytime sleep and not

much outside help. You certainly have a great attitude though!

Take care,

Halley

Re: Re: Update from the deliriously tired

house

is very restless in her new FAB at night, too, although she doesn't

cry, just wakes up much more frequently. Since she is in bed with me, she

wakes me up, sometimes 30-40 times a night. She won't settle in her

bassinet so co-sleeping is actually our best option. We are on day 4 in it.

I have three other kids, ages 3, 5, and 10 so I empathize. I get no daytime

naps, either and get very little outside help. I am just hanging in there

until she adjusts and sleeps better because I know there is no other option.

Your sharing your sadness about the footed sleepers made me cry, too.

Sometimes I get carried away by sadness at all that I have missed because of

this birth defect and the treatment for it. Yes, I am grateful it isn't a

worse defect and is correctable but that doesn't replace the loss of

cuddling my baby and having her melt into me (not possible because of casts

and shoes with a bar), getting her some pretty shoes as an infant, not

having to explain to every stranger on the street why she is in casts or

wearing these shoes, bathing her in the early weeks (not possible because of

casts), just enjoying her without looking at her feet constantly and hoping

they will look normal someday, the money put on credit cards for treatment

and shoes, the clothes she can't wear because of these contraptions on her

feet...I could go on and on. Like you, I don't want to sound morose or

ungrateful. is a blessing however she came to us and I thank God for

her, even for her two tiny clubbed

feet. He made her fearfully and wonderfully, as it says in the Psalms.

But my heart as her mother still breaks in places I didn't even know I

had...for her, for me, for the rest of our family and what this has cost

us...If you have not ever read the poem " Welcome to Holland " which was

written by a mom with a Down Syndrome child, you should. It rings a true

note in me and in many parents with a child who was " different from what

they had expected " or " different from the norm " . I know that someday it

will be a memory as I watch my daughter run like the wind down a soccer

field or dance ballet...but it is a hard experience before it becomes a

memory. Don't feel silly for your feelings. These losses are REAL, not

imagined. Hugs to you,

Carol and , bcf, 10-27-05, FAB 23/7

Re: Update from the deliriously tired house

Oh girl! We're going thru the same ordeal right now! Nick used to

go to sleep fairly easily, cast and all. Now it's fussy and crying

at nighttime and he wakes A LOT more than he used to. We're not

getting any sleep here, either. Only my husbands' parents to help a

little, but no other family or friends. We live in NJ where I

relocated from Michigan, so my fam/friends are there. You're right,

this part is the hardest! I just keep saying " It will soon be

over " . And I hate to wish his little life away, but I need him to

be able to sleep again! We have a 3 1/2 yr old to care for, as

well. I know we will make it through - soon! Hang in there,

nothing is forever!

PS Nick wears the one piece jumpsuits (snaps from head to toe) from

s. They're on sale right now (fall line) for $5 each and I

think I must have gotten about 15 of them!

>

> Well, this is day 5.

>

> Once I changed the bar to the 8 setting, he has still be fussy,

but

> nothing like he was, DURING THE DAYTIME.

> Night has been horrible.

> He has woken up every 10-15 min no exaggeration for the past 4

> nights. I have only been getting 2 hr of sleep per night(after I

> take the brace off at 5am for 2 hr of his off time). I have 2

other

> young children to take care of, a house, a traveling husband, no

> family or close friends here. How I am suppose to function?

>

> What can I do to make him more comfortable?

> He doesn't fuss during the day like this, so I don't think it is a

> pain issue or improper correction or fit(even though we have

checked

> many times). He used to fall asleep on his side, legs curled up,

> holding his toes(that was his comfort thing-he won't take pacy,

> blankie, thumb, etc). I have tried pillows, laying him on my

chest,

> across my lap, nothing is working.

>

> This totally sucks.

>

> And I jsut realized last night that I am never going to see my

baby,

> my youngest toddle around in footed sleepers. I realized when I

> went to get him some pjs from his drawer, and ALL of them are

> footed. *crying* I know that is silly, but it makes me so sad.

>