Isabella

[Guest guest]

In a message dated 11/14/2005 6:23:07 PM Pacific Standard Time,

leenernd@... writes:

> david has his checkup with his foot doctor tomorrow!

Let us know how it goes !

DeeDee

California

[Guest guest]

DeeDee-

I was just going to post to you to see how the appointment went. I

can only imagine what Isabella and better yet all cf babies go

through when the first casts go on. They are probably thinking-what

happened to my legs?!? why are they so heavy now?!? LOL-I really

wish that babies could talk-you know what I mean. i really liked

watching those " look who's talking " movies cause I think the writers

really hit the nail on the head. Good luck-just give her lots of

loving!! and check with her ped to see if baby tylenol is

appropriate-I know we didn't give it to david until he was 8 weeks.

To help her be comfortable-a rolled up blanket under her legs will

help take the weight off her hips until she gets used to her

new " weapons " .

take care! david has his checkup with his foot doctor tomorrow!

kathleen

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

>

>

> >

> > She got her first set of casts on today. She was NOT happy about

it. My son &

> > dil did better with it then I thought they would. I think they

really

> > prepared themself well. Isabella fussed most of the way home,

they told us to

> > prepare for a fussy few days.

> >

>

> DeeDee

> California

>

>

>

[Guest guest]

Hi DeeDee-

Glad to hear your son and dil did great. I think you have to have a strong

demeanor about this whole process because the baby can sense it. I have seen

many mothers get emotional in the cast room. I mean you must grieve because it

is normal, but you can't change what has happened to your child--you just have

to move on in the process for the better of their treatment. I had a hard time

in the beginning with being a mom and having a child with clubfoot, but then I

realized I need to be strong for her. I developed a routine with at

each casting and we made fun trip out of her appointments at Shriners-we made

friends with the nurses, casting techs, doctors, students who observe, etc. and

the cool result is--people remember her and always ask about her process. I

can't say enough about our experience there--no matter what happens, I know she

will be fine.

So who is Isabella's doctor? I think both Dr. Lerman and Dr. Boakes were in

today. We usually go in on Wednesdays, but I was amazed at how busy they were

today. Everyone worked through their lunches...I felt like I was there forever.

Our appt was at 11:30 and we did not get out until close to 3:00.

FYI--Isabella will be cranky, but eventually she will get used to it. She is

also a newborn, so she is still getting used to her surroundings too, tell your

son and dil to hang in there. Also, if you have any questions about the

process, let me know. If I could give you any advice for the future

castings--feed Isabella during the time they take the casts of and on. I don't

know if Isabella is just nursing and won't take a bottle, but that is what I did

with . She was used to the bottle in the beginning, so it wasn't a

problem. I hope this helps. Keep us udated.

Krishna

BTW-everyone-- had casts off after the three week tenetomy casts and her

feet look great. However, dr. Lerman said we need to keep an eye on the left

foot, apparently her stint with the Markell shoes (because they kept slipping)--

made her foot rigid--I forget the exact lingo he used. 'Worse case scenario is

to get another tenetomy if all does not go well--even with the

brace-which we will receive in a couple of weeks. Have any of your babies gone

through another tenetomy to get full correction?

BTW-how long does it take to get the brace after you do the impressions? Just

curious for those parents/families who did the impressions at home.

dee15mom@... wrote:

>

> She got her first set of casts on today. She was NOT happy about it. My son &

> dil did better with it then I thought they would. I think they really

> prepared themself well. Isabella fussed most of the way home, they told us to

> prepare for a fussy few days.

>

DeeDee

California

[Guest guest]

In a message dated 11/14/2005 7:45:02 PM Pacific Standard Time,

kcmsge@... writes:

> who is Isabella's doctor

She seen Dr Lerman. He was great with her. She takes the breast & bottle,

and we did feed her during the casting of the first foot, but she was not having

it the second one. OUr appt was 8:15 and we got out of there about 11:30. I

take my 12 yr old aughter there, so I know that the clinics can run over. We

were prepared, so no big deal. We were just happy to get those little casts on

her. Last night she was really fussy, and I told my dil I would come over

today to watch the kids while she napped.

I was most worried about how my dil would be yesterday. My son grew up with

my younger son, who is now 21, he has spina bidida & is in a wheelchair. He has

had MANY surgeries & hospital stays over the years, so I think that has

really helped my son , with Isabella. I know he was feeling much better

having me there, knowning I knew the folks at Shriner's. My dil on the other

hand

has never been around any special needs children until she joined our family.

But she is a great mom, so I know she will do just fine. She has a lot of

support from all of us, and I know that helps her a lot. I plan to go to our the

clinic appts with her. My son will attend some from here on, but not everyone.

His boss has been great so far, but he really needs to be working to take care

of his family.

DeeDee

California

[Guest guest]

How long does it usually take the babies to get use to the casts ?

DeeDee

California

[Guest guest]

In a message dated 11/14/2005 7:45:02 PM Pacific Standard Time,

kcmsge@... writes:

> had casts off after the three week tenetomy casts and her feet look

> great

That is great !

DeeDee

California

[Guest guest]

In a message dated 11/15/2005 8:10:38 AM Pacific Standard Time,

mlnelson76@... writes:

>

> It always took Janna a day or so.

Ok, thanks !

DeeDee

California

[Guest guest]

In a message dated 11/15/2005 9:11:29 AM Pacific Standard Time,

novemberfable@... writes:

>

>

> Oh, the poor little cutie. Now I know what to look forward to on

> Thursday.

Yes, it is so hard on the baby.

DeeDee

California

[Guest guest]

It always took Janna a day or so.

Marcia

Re: Isabella

How long does it usually take the babies to get use to the casts ?

DeeDee

California

[Guest guest]

Oh, the poor little cutie. Now I know what to look forward to on

Thursday.

>

>

> >

> > She got her first set of casts on today. She was NOT happy about

it. My son &

> > dil did better with it then I thought they would. I think they

really

> > prepared themself well. Isabella fussed most of the way home,

they told us to

> > prepare for a fussy few days.

> >

>

> DeeDee

> California

>

>

>

[Guest guest]

Please know that you have our prayers.

- Michele

5/18/02 and Maddie 9/6/05 bcf

dee15mom@... wrote:

Gets her 3rd casting tomorrow. I can't wait to see her feet ! I will let you

know how it all goes.

My 21 yr old son who has spina bifida is at UCD med center and is very sick.

He had surgery yesterday and will have another on Thursday. We could really

use some prayers.

DeeDee

California

[Guest guest]

My prayers are with you and your son DeeDee. I hope all goes well.

Keep us posted.

>

> Gets her 3rd casting tomorrow. I can't wait to see her feet ! I

will let you

> know how it all goes.

>

> My 21 yr old son who has spina bifida is at UCD med center and is

very sick.

> He had surgery yesterday and will have another on Thursday. We

could really

> use some prayers.

>

> DeeDee

> California

>

>

>

[Guest guest]

Glad to hear Isabella is moving right along, the process happens so fast!

And I will keep your son in our prayers...

dee15mom@... wrote:

Gets her 3rd casting tomorrow. I can't wait to see her feet ! I will let you

know how it all goes.

My 21 yr old son who has spina bifida is at UCD med center and is very sick.

He had surgery yesterday and will have another on Thursday. We could really

use some prayers.

DeeDee

California

[Guest guest]

--- dee15mom@... wrote:

> Gets her 3rd casting tomorrow. I can't wait to see her feet ! I will let you

> know how it all goes.

Sounds like it went well!

> My 21 yr old son who has spina bifida is at UCD med center and is very sick.

> He had surgery yesterday and will have another on Thursday. We could really

> use some prayers.

I'm sorry, DeeDee, I hope all goes well. May I ask what surgeries he's having?

My thoughts and prayers are with you and your son.

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

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[Guest guest]

In a message dated 11/30/2005 8:52:42 PM Pacific Standard Time,

kcmsge@... writes:

>

> Glad to hear Isabella is moving right along, the process happens so fast!

> And I will keep your son in our prayers...

Thank you

DeeDee

California

[Guest guest]

In a message dated 11/30/2005 9:04:55 PM Pacific Standard Time,

joybelle15@... writes:

> May I ask what surgeries he's having?

> My thoughts and prayers are with you and your son.

Thank you for your prayers.

Today he is having a colostomy done. He is paraylzed from the waist down, and

over the long term of being in the chair, and constapation, he developed an

infection in his rectom. It was bad before we even knew it was there, so it has

caused tissue & musle to die. He got very sick on Thanksgiving, and on Sunday

was admitted. They said had he been able to feel it, we probably would have

caught it sooner, but since he has no feeling there, he didn't know. Once the

infection got bad, was when we knew something was wrong. IN all he has been

through in his 21 years, this one has really caught us off guard. He will

probably be in the hospital for awhile, they said he won't be able to get into

his

chair for some time also.

DeeDee

California

[Guest guest]

We're going to continue to pray for your son and your whole family.

>

> In a message dated 11/30/2005 9:04:55 PM Pacific Standard Time,

> joybelle15@y... writes:

> > May I ask what surgeries he's having?

> > My thoughts and prayers are with you and your son.

> Thank you for your prayers.

>

> Today he is having a colostomy done. He is paraylzed from the

waist down, and

> over the long term of being in the chair, and constapation, he

developed an

> infection in his rectom. It was bad before we even knew it was

there, so it has

> caused tissue & musle to die. He got very sick on Thanksgiving,

and on Sunday

> was admitted. They said had he been able to feel it, we probably

would have

> caught it sooner, but since he has no feeling there, he didn't

know. Once the

> infection got bad, was when we knew something was wrong. IN all he

has been

> through in his 21 years, this one has really caught us off guard.

He will

> probably be in the hospital for awhile, they said he won't be

able to get into his

> chair for some time also.

>

>

> DeeDee

> California

>

>

>

[Guest guest]

--- dee15mom@... wrote:

> In a message dated 11/30/2005 9:04:55 PM Pacific Standard Time,

> joybelle15@... writes:

> > May I ask what surgeries he's having?

> > My thoughts and prayers are with you and your son.

> Thank you for your prayers.

>

> Today he is having a colostomy done.

DeeDee,

I really hope the surgery went well. It's interesting, he's been getting

double prayers from me. On the spina bifida list a mom (Traci) posted what

he's going through, so I didn't connect the two until I went back and saw your

name at the very end.

>Once the

> infection got bad, was when we knew something was wrong. IN all he has been

> through in his 21 years, this one has really caught us off guard. He will

> probably be in the hospital for awhile, they said he won't be able to get

> into his

> chair for some time also.

I'm so sorry. These are the things about spina bifida that trouble me. It

can seem like all is well and then something so serious happens. Much hugs

sent your way!!

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

__________________________________

Start your day with Yahoo! - Make it your home page!

http://www.yahoo.com/r/hs

[Guest guest]

In a message dated 12/7/2005 7:24:12 PM Pacific Standard Time,

shelikesembigboytoys@... writes:

>

>

> I am sorry to hear about your son and our prayers are with you all.

Thank you

DeeDee

California

[Guest guest]

I am sorry to hear about your son and our prayers are with you all.

Bri

novemberfable wrote:

We're going to continue to pray for your son and your whole family.

>

> In a message dated 11/30/2005 9:04:55 PM Pacific Standard Time,

> joybelle15@y... writes:

> > May I ask what surgeries he's having?

> > My thoughts and prayers are with you and your son.

> Thank you for your prayers.

>

> Today he is having a colostomy done. He is paraylzed from the

waist down, and

> over the long term of being in the chair, and constapation, he

developed an

> infection in his rectom. It was bad before we even knew it was

there, so it has

> caused tissue & musle to die. He got very sick on Thanksgiving,

and on Sunday

> was admitted. They said had he been able to feel it, we probably

would have

> caught it sooner, but since he has no feeling there, he didn't

know. Once the

> infection got bad, was when we knew something was wrong. IN all he

has been

> through in his 21 years, this one has really caught us off guard.

He will

> probably be in the hospital for awhile, they said he won't be

able to get into his

> chair for some time also.

>

>

> DeeDee

> California

>

>

>

[Guest guest]

In a message dated 1/13/2006 8:50:15 PM Pacific Standard Time,

mj_remington@... writes:

> you are a GREAT

> grandma =)

Thank you ! You are so sweet !

DeeDee

California

[Guest guest]

In a message dated 1/13/2006 8:55:36 PM Pacific Standard Time,

mj_remington@... writes:

>

> worry, she will be right as rain soon

Thank you, we are sure hoping !

DeeDee

California

[Guest guest]

Hi Dee Dee,

I know that you have probably heard about most of the tricks -

helping her to learn to move her feet together, pillow under the legs

etc from being on the board for a while. When Grace went into the

brace, I did give her some infant tylenol that first night or 2 to

help her calm down and sleep. It will take Isabella a bit of time to

adjust but her feet look great so at least you don't have to worry

that her feet aren't corrected properly and can just be there for her

while she makes this adjustment.

It took Grace a couple of days and then she was fine. I just held her

a ton and slept with her actually for a couple of months, just worked

better for us so I could just nurse her down throught the night.

Good luck and we will take a look at the pics on the cfpics list to

make sure that the brace set up looks right...btw, you are a GREAT

grandma =)

& Grace

>

> She got her casts off today, and her new brace ! She is NOT liking

it much.

> She has cried most of the day since. I will send pictures in a

minute to the

> other list.

>

> DeeDee

> California

>

>

>

[Guest guest]

The spacing of her feet looks good, sometimes the bar may be too

small or on an adjustable bar, the feet too close together. Don't

worry, she will be right as rain soon

& Grace

> >

> > She got her casts off today, and her new brace ! She is NOT

liking

> it much.

> > She has cried most of the day since. I will send pictures in a

> minute to the

> > other list.

> >

> > DeeDee

> > California

> >

> >

> >

[Guest guest]

Oh, I'm so sorry to hear that. But I'm sure she'll get used to them

soon. They get used to moving their legs independently while in the

casts and then it takes them a while to get the hang of moving their

legs together while in the brace.

>

> She got her casts off today, and her new brace ! She is NOT liking

it much.

> She has cried most of the day since. I will send pictures in a

minute to the

> other list.

>

> DeeDee

> California

>

>

>