Re: Finally, an update on Annika--Long, but want you all to read....

September 17, 2002

Lori-

Thanks for taking the time to share your story and your words of

wisdom! I'm glad that there is improvement in Annika's foot without

doing surgery. I hope the other foot improves quickly too. How happy

she must be not to be in the DBB anymore!

and (lft clubfoot 3/22/02, DBB 16hrs a day)

> Hello to everyone, old and new!!

>

> I'm not around much these days, but to those of you who don't know

> us, I'm Lori and my daughter is Annika. Annika is now 3 1/2.

With

> Annika being one of the older children here, I hope this may give

you

> a glimpse into the future and just a general idea of how things

can

> turn out.

>

> She was born with severe bi-lateral club foot. She was treated

with

> 5 casts here in California before we flew to Iowa to have her

treated

> by Dr. Ponseti in 1999. She received 4 sets of casts there,

followed

> by a bilateral heel cord tenotomy and her last set of casts.

>

> She became cast free at 2 1/2 months of age. She wore the FAB for

3

> months full time. We then had her wearing the FAB only during

sleep,

> which amounted to about 11-13 hrs in the beginning; then later on

> about 10 hours.

>

> Last September, we were going to head to Iowa for a checkup, but

> plans changed. Annika had developed 'bumps' on the bottoms of her

> feet which was starting to resemble rocker bottom. We took her to

> see Dr. Colburn, a Ponsti method doctor, here in

California.

> He told us that the rockering was caused by the short

> ligaments/tendons made up of the gastrocnemous and soleus, which

> combine to make up the Achilles. The tendons were pulling up on

the

> back of the heel, causing the front of the heel bone to push the

> cuboid out of place....creating the bumps on the bottoms of her

> feet. At that time, we chose to try casting to see if we could

> stretch those ligaments some more. She wore 3 sets of casts for 2

> weeks each. We saw improvement right away as well as upon

completion

> of the castings. At this time, we also upped the time in her FAB

to

> 12 hours a day and he tweaked the dorsiflexion of the shoes a bit

to

> be at a sharper angle. The effects of the casting were short

lived,

> although, it didn't appear to Dr. Colburn that her feet were

getting

> worse yet.

>

> His recommendation was to do a gastrocnemous lengthening on one

leg,

> to see if it would produce the results he would like to see. In

this

> procedure, the gastrocnemous muscle would be cut completely,

before

> it joined up with the soleus (becoming the Achilles) and the

muscle

> would not be stitched back together. It would be left to adhere

to

> the tissue surrounding it. The hope being that it would produce

> enough additional length to stop it from pulling on the back of

the

> heel so much. This procedure would be chosen over doing a

Achilles

> lengthening, because an Achilles lengthening at this age, would

risk

> giving too much length and that would not be good either. With

the

> gastroc surgery, her calves would also become smaller than they

> currently are.

>

> We traveled to the Midwest in July and while there, made a trip to

> Iowa. Dr. Ponseti felt that the bumps on the bottoms of her feet

> were worse than most, but that it still was a 'side effect' (so to

> speak) of having clubfoot in the first place. He said that yes,

it

> may cause some limitations, but that having a child with club

foot,

> one should expect some limitations. He felt that the potential

> benefits of surgery would not be worth introducing scar tissue

into

> her muscles, as that will pose it's own issues. Of course this

all

> fit with what we suspected he would say. At this time, he also

> suggested that we could discontinue with the FAB. We have since

> stopped having her wear it. He told us that soon after the bar

was

> stopped, she would start to develop more of an arch in her foot as

> well.

>

> So, we decided to not do the surgery. At least at this point.

Dr.

> Colburn had said that he would prefer to do this surgery before 4

> years of age, as the older the child gets, the more calcified the

> foot becomes and is less likely to conform to any changes that may

> have otherwise helped in a less calcified foot. Make sense?

>

> I have also realized that since she is out of the shoes/bar, she

will

> be at risk for relapse for awhile. If she were to relapse, I

would

> hate for her to have to face yet, another surgery. So for now, we

> wait.

>

> A very interesting thing has happened though. The bump on the

bottom

> of her left foot (her least affected foot) is gone. I can barely

> even palpate the cuboid from the bottom! I was stunned to notice

> this the other day. Annika doesn't much care for me looking at

her

> feet anymore, but when I do get a second chance I want to inspect

her

> right foot further to see if I can distinguish any improvement on

> that side either.

>

> Annika is not a particularly active child. While she can run,

jump,

> etc. she is usually content to sit and play dolls, or draw, or

watch

> a video (or 2 or 3) If we take a walk, she prefers to ride in the

> stroller. I'm not sure yet if it is due to pain, her personality,

or

> not enough effort on my part to get her moving. She has taken

> swimming lessons, and does have trouble pointing her toes. She

will

> shortly be taking ice skating, so we'll see how that goes.

>

> It is an interesting point to have reached. To have the days of

> casts and clunking legs and sponge baths and regular doctor

visits,

> long gone. The initial helpless feeling of watching baby trying

to

> maneuver in the FAB. OH! how I wanted to help her, but I let her

> struggle a little and she figured it out. Worrying about the

shoes!

> Is her heel down? Is that just a red spot on her heel or

an " angry "

> red spot? Is that mold in her shoe???? Stinky feet! My own

bruised

> shins. Her red marks on her face from clunking the bar into her

> head. Then the wonderful transition to part time bar wear. YEA!

> Seeing them move without the shoes on....isn't that neat! Then

> learning to stand, crawl, walk etc....all overshadowed by the

looming

> possibility of relapse or complications. My advise to all of you:

>

> Don't obsess. If something is going to happen, it's going to

happen

> wether you worry about it or not. Stressing over potential

problems

> is really a waste of what little energy we have as new parents.

> Stick to worrying about the usual. (I know I can't stop you from

> doing that) Of course we need to be watchful, and attentive to

areas

> of potential concern, especially when doing casting and first in

the

> shoes. That is probably the most difficult time. But, as time

tends

> to do, those days will be gone quick as a wink and you'll be able

to

> look back at those " SHORT " months in comparison to your child's or

> your lifetime and you'll see that it is a 'blip' in time. Hard to

> remember when you're sleep deprived, irritable, worried etc....I

> know.

>

> So as not to make you think that I don't worry 'at all', I do. I

> worry about how her legs will look. I worry about wether she'll

be

> able to do certain physical activities. I worry about wether

she'll

> relapse. I do worry, from time to time. But I don't allow myself

to

> obsess. I did briefly obsess when we first realized how out of

line

> the bump was on the bottom of her foot. But, I knew that I just

> needed to gather facts and opinions and make a choice. I

currently

> am working on NOT obsessing about the choice to NOT have surgery,

> hoping it is the right choice. I realize though, that a choice

HAD

> to be made, and obsessing about it will not change the outcome.

>

> Blah, blah, blah.....sorry, that got so long winded. I know that

> there are a lot of new people here who don't know who we are. I

> wanted to let you all know where we are coming from, what our

> experience has been like and to wish you all the best. I'm SO

glad

> that you found support here.

>

> Lori and Annika (3/30/99)

September 17, 2002

Lori-

Thanks for taking the time to share your story and your words of

wisdom! I'm glad that there is improvement in Annika's foot without

doing surgery. I hope the other foot improves quickly too. How happy

she must be not to be in the DBB anymore!

and (lft clubfoot 3/22/02, DBB 16hrs a day)

> Hello to everyone, old and new!!

>

> I'm not around much these days, but to those of you who don't know

> us, I'm Lori and my daughter is Annika. Annika is now 3 1/2.

With

> Annika being one of the older children here, I hope this may give

you

> a glimpse into the future and just a general idea of how things

can

> turn out.

>

> She was born with severe bi-lateral club foot. She was treated

with

> 5 casts here in California before we flew to Iowa to have her

treated

> by Dr. Ponseti in 1999. She received 4 sets of casts there,

followed

> by a bilateral heel cord tenotomy and her last set of casts.

>

> She became cast free at 2 1/2 months of age. She wore the FAB for

3

> months full time. We then had her wearing the FAB only during

sleep,

> which amounted to about 11-13 hrs in the beginning; then later on

> about 10 hours.

>

> Last September, we were going to head to Iowa for a checkup, but

> plans changed. Annika had developed 'bumps' on the bottoms of her

> feet which was starting to resemble rocker bottom. We took her to

> see Dr. Colburn, a Ponsti method doctor, here in

California.

> He told us that the rockering was caused by the short

> ligaments/tendons made up of the gastrocnemous and soleus, which

> combine to make up the Achilles. The tendons were pulling up on

the

> back of the heel, causing the front of the heel bone to push the

> cuboid out of place....creating the bumps on the bottoms of her

> feet. At that time, we chose to try casting to see if we could

> stretch those ligaments some more. She wore 3 sets of casts for 2

> weeks each. We saw improvement right away as well as upon

completion

> of the castings. At this time, we also upped the time in her FAB

to

> 12 hours a day and he tweaked the dorsiflexion of the shoes a bit

to

> be at a sharper angle. The effects of the casting were short

lived,

> although, it didn't appear to Dr. Colburn that her feet were

getting

> worse yet.

>

> His recommendation was to do a gastrocnemous lengthening on one

leg,

> to see if it would produce the results he would like to see. In

this

> procedure, the gastrocnemous muscle would be cut completely,

before

> it joined up with the soleus (becoming the Achilles) and the

muscle

> would not be stitched back together. It would be left to adhere

to

> the tissue surrounding it. The hope being that it would produce

> enough additional length to stop it from pulling on the back of

the

> heel so much. This procedure would be chosen over doing a

Achilles

> lengthening, because an Achilles lengthening at this age, would

risk

> giving too much length and that would not be good either. With

the

> gastroc surgery, her calves would also become smaller than they

> currently are.

>

> We traveled to the Midwest in July and while there, made a trip to

> Iowa. Dr. Ponseti felt that the bumps on the bottoms of her feet

> were worse than most, but that it still was a 'side effect' (so to

> speak) of having clubfoot in the first place. He said that yes,

it

> may cause some limitations, but that having a child with club

foot,

> one should expect some limitations. He felt that the potential

> benefits of surgery would not be worth introducing scar tissue

into

> her muscles, as that will pose it's own issues. Of course this

all

> fit with what we suspected he would say. At this time, he also

> suggested that we could discontinue with the FAB. We have since

> stopped having her wear it. He told us that soon after the bar

was

> stopped, she would start to develop more of an arch in her foot as

> well.

>

> So, we decided to not do the surgery. At least at this point.

Dr.

> Colburn had said that he would prefer to do this surgery before 4

> years of age, as the older the child gets, the more calcified the

> foot becomes and is less likely to conform to any changes that may

> have otherwise helped in a less calcified foot. Make sense?

>

> I have also realized that since she is out of the shoes/bar, she

will

> be at risk for relapse for awhile. If she were to relapse, I

would

> hate for her to have to face yet, another surgery. So for now, we

> wait.

>

> A very interesting thing has happened though. The bump on the

bottom

> of her left foot (her least affected foot) is gone. I can barely

> even palpate the cuboid from the bottom! I was stunned to notice

> this the other day. Annika doesn't much care for me looking at

her

> feet anymore, but when I do get a second chance I want to inspect

her

> right foot further to see if I can distinguish any improvement on

> that side either.

>

> Annika is not a particularly active child. While she can run,

jump,

> etc. she is usually content to sit and play dolls, or draw, or

watch

> a video (or 2 or 3) If we take a walk, she prefers to ride in the

> stroller. I'm not sure yet if it is due to pain, her personality,

or

> not enough effort on my part to get her moving. She has taken

> swimming lessons, and does have trouble pointing her toes. She

will

> shortly be taking ice skating, so we'll see how that goes.

>

> It is an interesting point to have reached. To have the days of

> casts and clunking legs and sponge baths and regular doctor

visits,

> long gone. The initial helpless feeling of watching baby trying

to

> maneuver in the FAB. OH! how I wanted to help her, but I let her

> struggle a little and she figured it out. Worrying about the

shoes!

> Is her heel down? Is that just a red spot on her heel or

an " angry "

> red spot? Is that mold in her shoe???? Stinky feet! My own

bruised

> shins. Her red marks on her face from clunking the bar into her

> head. Then the wonderful transition to part time bar wear. YEA!

> Seeing them move without the shoes on....isn't that neat! Then

> learning to stand, crawl, walk etc....all overshadowed by the

looming

> possibility of relapse or complications. My advise to all of you:

>

> Don't obsess. If something is going to happen, it's going to

happen

> wether you worry about it or not. Stressing over potential

problems

> is really a waste of what little energy we have as new parents.

> Stick to worrying about the usual. (I know I can't stop you from

> doing that) Of course we need to be watchful, and attentive to

areas

> of potential concern, especially when doing casting and first in

the

> shoes. That is probably the most difficult time. But, as time

tends

> to do, those days will be gone quick as a wink and you'll be able

to

> look back at those " SHORT " months in comparison to your child's or

> your lifetime and you'll see that it is a 'blip' in time. Hard to

> remember when you're sleep deprived, irritable, worried etc....I

> know.

>

> So as not to make you think that I don't worry 'at all', I do. I

> worry about how her legs will look. I worry about wether she'll

be

> able to do certain physical activities. I worry about wether

she'll

> relapse. I do worry, from time to time. But I don't allow myself

to

> obsess. I did briefly obsess when we first realized how out of

line

> the bump was on the bottom of her foot. But, I knew that I just

> needed to gather facts and opinions and make a choice. I

currently

> am working on NOT obsessing about the choice to NOT have surgery,

> hoping it is the right choice. I realize though, that a choice

HAD

> to be made, and obsessing about it will not change the outcome.

>

> Blah, blah, blah.....sorry, that got so long winded. I know that

> there are a lot of new people here who don't know who we are. I

> wanted to let you all know where we are coming from, what our

> experience has been like and to wish you all the best. I'm SO

glad

> that you found support here.

>

> Lori and Annika (3/30/99)

September 17, 2002

Lori-

Thanks for taking the time to share your story and your words of

wisdom! I'm glad that there is improvement in Annika's foot without

doing surgery. I hope the other foot improves quickly too. How happy

she must be not to be in the DBB anymore!

and (lft clubfoot 3/22/02, DBB 16hrs a day)

> Hello to everyone, old and new!!

>

> I'm not around much these days, but to those of you who don't know

> us, I'm Lori and my daughter is Annika. Annika is now 3 1/2.

With

> Annika being one of the older children here, I hope this may give

you

> a glimpse into the future and just a general idea of how things

can

> turn out.

>

> She was born with severe bi-lateral club foot. She was treated

with

> 5 casts here in California before we flew to Iowa to have her

treated

> by Dr. Ponseti in 1999. She received 4 sets of casts there,

followed

> by a bilateral heel cord tenotomy and her last set of casts.

>

> She became cast free at 2 1/2 months of age. She wore the FAB for

3

> months full time. We then had her wearing the FAB only during

sleep,

> which amounted to about 11-13 hrs in the beginning; then later on

> about 10 hours.

>

> Last September, we were going to head to Iowa for a checkup, but

> plans changed. Annika had developed 'bumps' on the bottoms of her

> feet which was starting to resemble rocker bottom. We took her to

> see Dr. Colburn, a Ponsti method doctor, here in

California.

> He told us that the rockering was caused by the short

> ligaments/tendons made up of the gastrocnemous and soleus, which

> combine to make up the Achilles. The tendons were pulling up on

the

> back of the heel, causing the front of the heel bone to push the

> cuboid out of place....creating the bumps on the bottoms of her

> feet. At that time, we chose to try casting to see if we could

> stretch those ligaments some more. She wore 3 sets of casts for 2

> weeks each. We saw improvement right away as well as upon

completion

> of the castings. At this time, we also upped the time in her FAB

to

> 12 hours a day and he tweaked the dorsiflexion of the shoes a bit

to

> be at a sharper angle. The effects of the casting were short

lived,

> although, it didn't appear to Dr. Colburn that her feet were

getting

> worse yet.

>

> His recommendation was to do a gastrocnemous lengthening on one

leg,

> to see if it would produce the results he would like to see. In

this

> procedure, the gastrocnemous muscle would be cut completely,

before

> it joined up with the soleus (becoming the Achilles) and the

muscle

> would not be stitched back together. It would be left to adhere

to

> the tissue surrounding it. The hope being that it would produce

> enough additional length to stop it from pulling on the back of

the

> heel so much. This procedure would be chosen over doing a

Achilles

> lengthening, because an Achilles lengthening at this age, would

risk

> giving too much length and that would not be good either. With

the

> gastroc surgery, her calves would also become smaller than they

> currently are.

>

> We traveled to the Midwest in July and while there, made a trip to

> Iowa. Dr. Ponseti felt that the bumps on the bottoms of her feet

> were worse than most, but that it still was a 'side effect' (so to

> speak) of having clubfoot in the first place. He said that yes,

it

> may cause some limitations, but that having a child with club

foot,

> one should expect some limitations. He felt that the potential

> benefits of surgery would not be worth introducing scar tissue

into

> her muscles, as that will pose it's own issues. Of course this

all

> fit with what we suspected he would say. At this time, he also

> suggested that we could discontinue with the FAB. We have since

> stopped having her wear it. He told us that soon after the bar

was

> stopped, she would start to develop more of an arch in her foot as

> well.

>

> So, we decided to not do the surgery. At least at this point.

Dr.

> Colburn had said that he would prefer to do this surgery before 4

> years of age, as the older the child gets, the more calcified the

> foot becomes and is less likely to conform to any changes that may

> have otherwise helped in a less calcified foot. Make sense?

>

> I have also realized that since she is out of the shoes/bar, she

will

> be at risk for relapse for awhile. If she were to relapse, I

would

> hate for her to have to face yet, another surgery. So for now, we

> wait.

>

> A very interesting thing has happened though. The bump on the

bottom

> of her left foot (her least affected foot) is gone. I can barely

> even palpate the cuboid from the bottom! I was stunned to notice

> this the other day. Annika doesn't much care for me looking at

her

> feet anymore, but when I do get a second chance I want to inspect

her

> right foot further to see if I can distinguish any improvement on

> that side either.

>

> Annika is not a particularly active child. While she can run,

jump,

> etc. she is usually content to sit and play dolls, or draw, or

watch

> a video (or 2 or 3) If we take a walk, she prefers to ride in the

> stroller. I'm not sure yet if it is due to pain, her personality,

or

> not enough effort on my part to get her moving. She has taken

> swimming lessons, and does have trouble pointing her toes. She

will

> shortly be taking ice skating, so we'll see how that goes.

>

> It is an interesting point to have reached. To have the days of

> casts and clunking legs and sponge baths and regular doctor

visits,

> long gone. The initial helpless feeling of watching baby trying

to

> maneuver in the FAB. OH! how I wanted to help her, but I let her

> struggle a little and she figured it out. Worrying about the

shoes!

> Is her heel down? Is that just a red spot on her heel or

an " angry "

> red spot? Is that mold in her shoe???? Stinky feet! My own

bruised

> shins. Her red marks on her face from clunking the bar into her

> head. Then the wonderful transition to part time bar wear. YEA!

> Seeing them move without the shoes on....isn't that neat! Then

> learning to stand, crawl, walk etc....all overshadowed by the

looming

> possibility of relapse or complications. My advise to all of you:

>

> Don't obsess. If something is going to happen, it's going to

happen

> wether you worry about it or not. Stressing over potential

problems

> is really a waste of what little energy we have as new parents.

> Stick to worrying about the usual. (I know I can't stop you from

> doing that) Of course we need to be watchful, and attentive to

areas

> of potential concern, especially when doing casting and first in

the

> shoes. That is probably the most difficult time. But, as time

tends

> to do, those days will be gone quick as a wink and you'll be able

to

> look back at those " SHORT " months in comparison to your child's or

> your lifetime and you'll see that it is a 'blip' in time. Hard to

> remember when you're sleep deprived, irritable, worried etc....I

> know.

>

> So as not to make you think that I don't worry 'at all', I do. I

> worry about how her legs will look. I worry about wether she'll

be

> able to do certain physical activities. I worry about wether

she'll

> relapse. I do worry, from time to time. But I don't allow myself

to

> obsess. I did briefly obsess when we first realized how out of

line

> the bump was on the bottom of her foot. But, I knew that I just

> needed to gather facts and opinions and make a choice. I

currently

> am working on NOT obsessing about the choice to NOT have surgery,

> hoping it is the right choice. I realize though, that a choice

HAD

> to be made, and obsessing about it will not change the outcome.

>

> Blah, blah, blah.....sorry, that got so long winded. I know that

> there are a lot of new people here who don't know who we are. I

> wanted to let you all know where we are coming from, what our

> experience has been like and to wish you all the best. I'm SO

glad

> that you found support here.

>

> Lori and Annika (3/30/99)

September 17, 2002

Dear Lori, Annika, and Family;

We have been wondering how things are going, and are so glad to read what's

very good news! Thanks for your " diminishing bumps " update. We hoped to

see you a few weeks back when Dr. Ponseti was visiting Dr. Colburn, and were

disappointed when we didn't. But we were very happy to see Joanne and

!!!

Great to here there's improvement!

Eddie and Jordan

Finally, an update on Annika--Long, but want

you all to read....

Hello to everyone, old and new!!

I'm not around much these days, but to those of you who don't know

us, I'm Lori and my daughter is Annika. Annika is now 3 1/2. With

Annika being one of the older children here, I hope this may give you

a glimpse into the future and just a general idea of how things can

turn out.

She was born with severe bi-lateral club foot. She was treated with

5 casts here in California before we flew to Iowa to have her treated

by Dr. Ponseti in 1999. She received 4 sets of casts there, followed

by a bilateral heel cord tenotomy and her last set of casts.

She became cast free at 2 1/2 months of age. She wore the FAB for 3

months full time. We then had her wearing the FAB only during sleep,

which amounted to about 11-13 hrs in the beginning; then later on

about 10 hours.

Last September, we were going to head to Iowa for a checkup, but

plans changed. Annika had developed 'bumps' on the bottoms of her

feet which was starting to resemble rocker bottom. We took her to

see Dr. Colburn, a Ponsti method doctor, here in California.

He told us that the rockering was caused by the short

ligaments/tendons made up of the gastrocnemous and soleus, which

combine to make up the Achilles. The tendons were pulling up on the

back of the heel, causing the front of the heel bone to push the

cuboid out of place....creating the bumps on the bottoms of her

feet. At that time, we chose to try casting to see if we could

stretch those ligaments some more. She wore 3 sets of casts for 2

weeks each. We saw improvement right away as well as upon completion

of the castings. At this time, we also upped the time in her FAB to

12 hours a day and he tweaked the dorsiflexion of the shoes a bit to

be at a sharper angle. The effects of the casting were short lived,

although, it didn't appear to Dr. Colburn that her feet were getting

worse yet.

His recommendation was to do a gastrocnemous lengthening on one leg,

to see if it would produce the results he would like to see. In this

procedure, the gastrocnemous muscle would be cut completely, before

it joined up with the soleus (becoming the Achilles) and the muscle

would not be stitched back together. It would be left to adhere to

the tissue surrounding it. The hope being that it would produce

enough additional length to stop it from pulling on the back of the

heel so much. This procedure would be chosen over doing a Achilles

lengthening, because an Achilles lengthening at this age, would risk

giving too much length and that would not be good either. With the

gastroc surgery, her calves would also become smaller than they

currently are.

We traveled to the Midwest in July and while there, made a trip to

Iowa. Dr. Ponseti felt that the bumps on the bottoms of her feet

were worse than most, but that it still was a 'side effect' (so to

speak) of having clubfoot in the first place. He said that yes, it

may cause some limitations, but that having a child with club foot,

one should expect some limitations. He felt that the potential

benefits of surgery would not be worth introducing scar tissue into

her muscles, as that will pose it's own issues. Of course this all

fit with what we suspected he would say. At this time, he also

suggested that we could discontinue with the FAB. We have since

stopped having her wear it. He told us that soon after the bar was

stopped, she would start to develop more of an arch in her foot as

well.

So, we decided to not do the surgery. At least at this point. Dr.

Colburn had said that he would prefer to do this surgery before 4

years of age, as the older the child gets, the more calcified the

foot becomes and is less likely to conform to any changes that may

have otherwise helped in a less calcified foot. Make sense?

I have also realized that since she is out of the shoes/bar, she will

be at risk for relapse for awhile. If she were to relapse, I would

hate for her to have to face yet, another surgery. So for now, we

wait.

A very interesting thing has happened though. The bump on the bottom

of her left foot (her least affected foot) is gone. I can barely

even palpate the cuboid from the bottom! I was stunned to notice

this the other day. Annika doesn't much care for me looking at her

feet anymore, but when I do get a second chance I want to inspect her

right foot further to see if I can distinguish any improvement on

that side either.

Annika is not a particularly active child. While she can run, jump,

etc. she is usually content to sit and play dolls, or draw, or watch

a video (or 2 or 3) If we take a walk, she prefers to ride in the

stroller. I'm not sure yet if it is due to pain, her personality, or

not enough effort on my part to get her moving. She has taken

swimming lessons, and does have trouble pointing her toes. She will

shortly be taking ice skating, so we'll see how that goes.

It is an interesting point to have reached. To have the days of

casts and clunking legs and sponge baths and regular doctor visits,

long gone. The initial helpless feeling of watching baby trying to

maneuver in the FAB. OH! how I wanted to help her, but I let her

struggle a little and she figured it out. Worrying about the shoes!

Is her heel down? Is that just a red spot on her heel or an " angry "

red spot? Is that mold in her shoe???? Stinky feet! My own bruised

shins. Her red marks on her face from clunking the bar into her

head. Then the wonderful transition to part time bar wear. YEA!

Seeing them move without the shoes on....isn't that neat! Then

learning to stand, crawl, walk etc....all overshadowed by the looming

possibility of relapse or complications. My advise to all of you:

Don't obsess. If something is going to happen, it's going to happen

wether you worry about it or not. Stressing over potential problems

is really a waste of what little energy we have as new parents.

Stick to worrying about the usual. (I know I can't stop you from

doing that) Of course we need to be watchful, and attentive to areas

of potential concern, especially when doing casting and first in the

shoes. That is probably the most difficult time. But, as time tends

to do, those days will be gone quick as a wink and you'll be able to

look back at those " SHORT " months in comparison to your child's or

your lifetime and you'll see that it is a 'blip' in time. Hard to

remember when you're sleep deprived, irritable, worried etc....I

know.

So as not to make you think that I don't worry 'at all', I do. I

worry about how her legs will look. I worry about wether she'll be

able to do certain physical activities. I worry about wether she'll

relapse. I do worry, from time to time. But I don't allow myself to

obsess. I did briefly obsess when we first realized how out of line

the bump was on the bottom of her foot. But, I knew that I just

needed to gather facts and opinions and make a choice. I currently

am working on NOT obsessing about the choice to NOT have surgery,

hoping it is the right choice. I realize though, that a choice HAD

to be made, and obsessing about it will not change the outcome.

Blah, blah, blah.....sorry, that got so long winded. I know that

there are a lot of new people here who don't know who we are. I

wanted to let you all know where we are coming from, what our

experience has been like and to wish you all the best. I'm SO glad

that you found support here.

Lori and Annika (3/30/99)

September 17, 2002