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| Ponseti Parent Testimonials - 2 - Return to Ponseti Parent Testimonials Page One |
I just want to say that I think it is awesome what you have
done to create this site. This is spectacular and exactly what
is needed for parents of clubfoot children, particularly when
they first find out about the clubfoot diagnosis.
I really admire you for taking the time to do this...as though
being a busy mom of three wasn't enough. All clubfoot
parents and the children themselves owe you a big "THANK
YOU" for spreading the word about the Ponseti method and
how to ensure their child is getting the best treatment.
Halley
mom to Mateya, Liam, Keira (RCF-Mitchell 12 hrs day, and
baby Jack.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
THANK YOU for enlightening me to Dr. Ponseti, had I not
listened to you , Lord only knows how her feet would be.
Many Blessings to you,
Sheila and Bailee
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Military and TriCare Insurance
We are military. My daughter's military orthos told us the
same things: surgery is the only option, etc. She went
through 6 months of incorrect casting through the military
orthos that ultimately may have made her feet worse off in
the long run.
Finally, we sought out second and third opinions (The third
finally being Dr. Ponseti himself) before we let the surgery
happen. We luckily found out that the surgery was not
necessary, and now two years later, she is doing great.
She is walking around, running and jumping, and no one
would ever know that she was born with bilateral clubfeet -
and all without surgery.
You will all just have to be diligent about your
granddaughter's care. They (the military hospital or TriCare)
will more than likely tell you that you can't be seen by anyone
other than the military orthos at the hospital. It's just not true.
Please check out the TriCare document in the files section of
the nosurgery4clubfoot group. There may be other ways
of going about things other than what is in that document,
however, that was written based on my experiences, and
questions/answers that we had along the way. If nothing
else, the document can hopefully serve as a starting point
for you and your family in deciding your other medical
options.
Jennifer (Lauren, bcf 2/1/05)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thank you, thank you, thank you for your website!!! My 8
week old son had his last cast removed, 8-30-07, during his
treatment for a left clubbed foot utilizing the Ponseti method.
It is the Sunday after the removal last Thursday and I have
wanted to throw the shoes and DB bar out of the window
because he continued to scooch out of them half way and
scream, or just kick out of them all together. I was terrified of
cutting off his circulation if we cinched them too tight.
Thanks to sitting down and doing some further research
before losing my cool again toward this leather and metal
contraption, I came upon your site. I never received the info
on just how to put these on until reading your site. Hopefully
we'll have better success tonight with them staying on.
Thank you for ALL of the very helpful information. We were
never given the choice of what shoe to use, so we have the
white open toe with the red bar. Is it really expensive to
switch to the Mitchell FAB at this point and did you find that
your kid's did better with it than the little open toed white
shoes? My son, Tanner has been really fussy with these.
Thanks again,
Kathy S.
(Yes Kathy, I do find the Mitchell FAB is better!)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I just wanted to take the time to say thank you for your
website. It looks like you took a lot of time to put it together
and you look like a wonderful mom! Our baby was born with
one clubfoot. Today has been extremely stressful because
we are trying to get her some of the shoes and bar like the
ones your children are wearing. She was in a regular Dennis
brown bar, but she has been getting blisters, not sleeping
well, and getting out of them quite often. I can't imagine how
hard it must be with two clubfeet. Your website is very
encouraging. I love the part about wearing them around in a
sling. They DO need that TLC. I've noticed that sometimes
my baby just needs to be cuddled and rocked and then
everything is okay in her world. Thanks again, I'm sure you
are an inspiration to many others.
Sincerely,
Sarah of Georgia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
........We too did the best with the information given to us at
the time and unfortunately did not get to Ponseti until
Annabel was 2. However, we were under the impression
that we were receiving the Ponseti Method. I feel your
pain, as others in our situation do. Not a day goes by when I
don't ponder "what if"?
.....it's hard not to look back and it has become huge
responsibility to share our experiences with others. I ask for
compassion daily and hope my words are not too harsh.
Annabel is in her last cast of the series, we're trying to shy
away from yet another surgery. Yes, it stings badly to
think that this could have been avoided (had we found
the Ponseti Method sooner)
Kellie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thank you! Thank you! Thank you!
I wish I had come across your site a lot sooner. I was
misguided by a local orthopedic specialist who claimed to
be using the Ponseti method. After several casts and a
tenotomy (for which our 3 month old son was put under
general anesthesia) my son's foot was still not corrected.
The specialist stated that he fell under the small percentage
for which the method doe snot work - after much research
online and in the library I just felt he was wrong. I thank God
my persistence paid off and my son was treated (as is
being treated) by Ponseti - he is now 2 and loves to
jump and run. It's a shame that not many doctors will adopt
this method or claim to have and are incorrectly applying it.
Dr Ponseti is truly an amazing talented man with a huge
heart who at 90+ years young continues to help our children.
Thanks again _ I will continue to visit your site.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hello Shawnee,
My son is having his last cast taken off today and the Mitchell
brace put on. I have been feeling increasingly saddened
and anxious as today approaches and really need to talk to
someone who has been in the same situation, repeatedly in
your case.
I really want to be strong for my son and husband but am
having a very hard time doing so...
You seem to have made lemonade with the lemons you were
given in having three sons with bcf (bilateral clubfoot) and I
guess I'm hoping you could offer some encouragement and
some of that great advice I've seen you offer to me and
others who post on the message boards.
I feel like I am in mourning for myself and my son that he will
not be able to kick his beautiful little legs in the same way as
he does now with the brace on (and so enjoys doing) and
that my smiling, happy baby may end up miserable in having
his feet (even the normal one) and legs restrained.
I am also sad that I won't be able to hold him, feed him, play
with him the same and see him develop in the "normal" ways
I've always imagined with my first baby. I don't want to be
melodramatic as I know it will get better as it did with the
casts and that there are worse things that could be wrong
with him but I am so down about it, I have actually been
concerned that I am heading into postpartum depression with
my worry over this...
Tell me - were you always as positive and strong as you are
now about having children with clubfeet - especially with
your first child? Did they have a difficult time adapting when
their braces were first put on or did they rebound quickly?
It was encouraging to me to see your website and all the
travels and camping that your family has still been able to do
as we are into the same types of activities and I had been
concerned that we may not be able to do those things while
my son is young and in the braces.
If you could offer any advice, feedback, encouragement, etc,
it e greatly appreciated...
Thanks
(Name Withheld)
Tue, 4 Sep 2007 12:50:55 -0500
I had to pour a cup of coffee before I sat down to this one...
Lord no, girl, I have always been upbeat and strong, and I
am not always upbeat and strong about it still. I definitely
have my moments!
It is not only normal to go through a grieving process,
but it is necessary, too. When Brian was born it crushed
me. For some reason Everett's cf didn't bother me, but
when Garrison came along, I bawled like a baby and was
pretty bummed out to say the least. I am only human, I
DID want just one "normal" baby, one chance to just not
deal with the cf crap.
But as I watch family and friends with their normal babies, I
see that mine are not abnormal at all. They just have a
brace on, that's all.
Even now I have periods of frustration and annoyance.
Crap, I'm tired and wish I could just put them to bed and
not the whole booting-up routine with them. Or crap, they
crawl with their brace on (instead of walking) and if my floor
isn't freshly mopped well there goes their pants getting
all dirty. And crap, he can't get up in his high chair himself
with the brace on so I gotta put down what ever I'm doing
and help him up, Everett needs help to stand at the toilet to
pee cuz the floor in there is slippery.... I could go on and on,
OK? Hell girl it ain't no cake walk. But like you said, things
could always be worse.
Your baby is going to adapt to his FAB in no time, and you'll
see with your own two eyes that yes, you can play
normally with him and he will do normal things. He is
going to amaze you, thrill you, tickle you, and leave you in
awe - just like a so-called normal baby will do. You'll see.
Let me tell you that you do not have to be "strong" for them
all the time. A baby will pick up on his mother's vibes, so if
you're totally anxious he's going to be anxious with you, but
you are only human yourself and you are entitled to a little
weakness now and then. Confide in your husband, he may
need to confide in you as well. Cry it out if you feel the
need. I mean allow yourself to grieve, because you have
suffered a loss, there is no shame to that. You can't heal
until you grieve yourself out. Visit Holland Often.
It sounds like you haven't quite finished with the grieving part
- everyone has their own schedule, there is no time limit, no
rules to any of that.
Then there is just a whole lot of simply accepting your fate.
Accepting, if you're a religious woman, that this was God's
plan for your family and that makes it just fine.
You'll find out though that you'll all adapt to your new normal
routine and the time is going to pass quicker than you
imagine.
Hang in there girly girl, we women can't be 100% perfect all
the time, just don't tell the men that! ha ha. Go start
planning yourself a grand Pity Party right now. Get yourself
a load of chocolate, a bottle of booze or whatever you like to
drown your sorrow in and just have a ball of it.
Feel sorry for yourself for a while, let it happen - and then
you'll start coming back up, I promise.
Sending love,
Shawnee
*****************************************************************************
Shawnee, Bailee had horrible treatment,which caused her
atypical clubfoot, which HAS been corrected by Dr.P, thanks
to you, you urged me to go, and our family will forever
remember you for it.
Blessings to all
Sheila and Bailee
(The best way to thank me is to continue to spread the word
Sheila! Consider becoming involved with the Parents for
Ponseti, or the Ponseti International Association, but I am
glad I could help!)
done to create this site. This is spectacular and exactly what
is needed for parents of clubfoot children, particularly when
they first find out about the clubfoot diagnosis.
I really admire you for taking the time to do this...as though
being a busy mom of three wasn't enough. All clubfoot
parents and the children themselves owe you a big "THANK
YOU" for spreading the word about the Ponseti method and
how to ensure their child is getting the best treatment.
Halley
mom to Mateya, Liam, Keira (RCF-Mitchell 12 hrs day, and
baby Jack.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
THANK YOU for enlightening me to Dr. Ponseti, had I not
listened to you , Lord only knows how her feet would be.
Many Blessings to you,
Sheila and Bailee
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Military and TriCare Insurance
We are military. My daughter's military orthos told us the
same things: surgery is the only option, etc. She went
through 6 months of incorrect casting through the military
orthos that ultimately may have made her feet worse off in
the long run.
Finally, we sought out second and third opinions (The third
finally being Dr. Ponseti himself) before we let the surgery
happen. We luckily found out that the surgery was not
necessary, and now two years later, she is doing great.
She is walking around, running and jumping, and no one
would ever know that she was born with bilateral clubfeet -
and all without surgery.
You will all just have to be diligent about your
granddaughter's care. They (the military hospital or TriCare)
will more than likely tell you that you can't be seen by anyone
other than the military orthos at the hospital. It's just not true.
Please check out the TriCare document in the files section of
the nosurgery4clubfoot group. There may be other ways
of going about things other than what is in that document,
however, that was written based on my experiences, and
questions/answers that we had along the way. If nothing
else, the document can hopefully serve as a starting point
for you and your family in deciding your other medical
options.
Jennifer (Lauren, bcf 2/1/05)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thank you, thank you, thank you for your website!!! My 8
week old son had his last cast removed, 8-30-07, during his
treatment for a left clubbed foot utilizing the Ponseti method.
It is the Sunday after the removal last Thursday and I have
wanted to throw the shoes and DB bar out of the window
because he continued to scooch out of them half way and
scream, or just kick out of them all together. I was terrified of
cutting off his circulation if we cinched them too tight.
Thanks to sitting down and doing some further research
before losing my cool again toward this leather and metal
contraption, I came upon your site. I never received the info
on just how to put these on until reading your site. Hopefully
we'll have better success tonight with them staying on.
Thank you for ALL of the very helpful information. We were
never given the choice of what shoe to use, so we have the
white open toe with the red bar. Is it really expensive to
switch to the Mitchell FAB at this point and did you find that
your kid's did better with it than the little open toed white
shoes? My son, Tanner has been really fussy with these.
Thanks again,
Kathy S.
(Yes Kathy, I do find the Mitchell FAB is better!)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I just wanted to take the time to say thank you for your
website. It looks like you took a lot of time to put it together
and you look like a wonderful mom! Our baby was born with
one clubfoot. Today has been extremely stressful because
we are trying to get her some of the shoes and bar like the
ones your children are wearing. She was in a regular Dennis
brown bar, but she has been getting blisters, not sleeping
well, and getting out of them quite often. I can't imagine how
hard it must be with two clubfeet. Your website is very
encouraging. I love the part about wearing them around in a
sling. They DO need that TLC. I've noticed that sometimes
my baby just needs to be cuddled and rocked and then
everything is okay in her world. Thanks again, I'm sure you
are an inspiration to many others.
Sincerely,
Sarah of Georgia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
........We too did the best with the information given to us at
the time and unfortunately did not get to Ponseti until
Annabel was 2. However, we were under the impression
that we were receiving the Ponseti Method. I feel your
pain, as others in our situation do. Not a day goes by when I
don't ponder "what if"?
.....it's hard not to look back and it has become huge
responsibility to share our experiences with others. I ask for
compassion daily and hope my words are not too harsh.
Annabel is in her last cast of the series, we're trying to shy
away from yet another surgery. Yes, it stings badly to
think that this could have been avoided (had we found
the Ponseti Method sooner)
Kellie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thank you! Thank you! Thank you!
I wish I had come across your site a lot sooner. I was
misguided by a local orthopedic specialist who claimed to
be using the Ponseti method. After several casts and a
tenotomy (for which our 3 month old son was put under
general anesthesia) my son's foot was still not corrected.
The specialist stated that he fell under the small percentage
for which the method doe snot work - after much research
online and in the library I just felt he was wrong. I thank God
my persistence paid off and my son was treated (as is
being treated) by Ponseti - he is now 2 and loves to
jump and run. It's a shame that not many doctors will adopt
this method or claim to have and are incorrectly applying it.
Dr Ponseti is truly an amazing talented man with a huge
heart who at 90+ years young continues to help our children.
Thanks again _ I will continue to visit your site.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hello Shawnee,
My son is having his last cast taken off today and the Mitchell
brace put on. I have been feeling increasingly saddened
and anxious as today approaches and really need to talk to
someone who has been in the same situation, repeatedly in
your case.
I really want to be strong for my son and husband but am
having a very hard time doing so...
You seem to have made lemonade with the lemons you were
given in having three sons with bcf (bilateral clubfoot) and I
guess I'm hoping you could offer some encouragement and
some of that great advice I've seen you offer to me and
others who post on the message boards.
I feel like I am in mourning for myself and my son that he will
not be able to kick his beautiful little legs in the same way as
he does now with the brace on (and so enjoys doing) and
that my smiling, happy baby may end up miserable in having
his feet (even the normal one) and legs restrained.
I am also sad that I won't be able to hold him, feed him, play
with him the same and see him develop in the "normal" ways
I've always imagined with my first baby. I don't want to be
melodramatic as I know it will get better as it did with the
casts and that there are worse things that could be wrong
with him but I am so down about it, I have actually been
concerned that I am heading into postpartum depression with
my worry over this...
Tell me - were you always as positive and strong as you are
now about having children with clubfeet - especially with
your first child? Did they have a difficult time adapting when
their braces were first put on or did they rebound quickly?
It was encouraging to me to see your website and all the
travels and camping that your family has still been able to do
as we are into the same types of activities and I had been
concerned that we may not be able to do those things while
my son is young and in the braces.
If you could offer any advice, feedback, encouragement, etc,
it e greatly appreciated...
Thanks
(Name Withheld)
Tue, 4 Sep 2007 12:50:55 -0500
I had to pour a cup of coffee before I sat down to this one...
Lord no, girl, I have always been upbeat and strong, and I
am not always upbeat and strong about it still. I definitely
have my moments!
It is not only normal to go through a grieving process,
but it is necessary, too. When Brian was born it crushed
me. For some reason Everett's cf didn't bother me, but
when Garrison came along, I bawled like a baby and was
pretty bummed out to say the least. I am only human, I
DID want just one "normal" baby, one chance to just not
deal with the cf crap.
But as I watch family and friends with their normal babies, I
see that mine are not abnormal at all. They just have a
brace on, that's all.
Even now I have periods of frustration and annoyance.
Crap, I'm tired and wish I could just put them to bed and
not the whole booting-up routine with them. Or crap, they
crawl with their brace on (instead of walking) and if my floor
isn't freshly mopped well there goes their pants getting
all dirty. And crap, he can't get up in his high chair himself
with the brace on so I gotta put down what ever I'm doing
and help him up, Everett needs help to stand at the toilet to
pee cuz the floor in there is slippery.... I could go on and on,
OK? Hell girl it ain't no cake walk. But like you said, things
could always be worse.
Your baby is going to adapt to his FAB in no time, and you'll
see with your own two eyes that yes, you can play
normally with him and he will do normal things. He is
going to amaze you, thrill you, tickle you, and leave you in
awe - just like a so-called normal baby will do. You'll see.
Let me tell you that you do not have to be "strong" for them
all the time. A baby will pick up on his mother's vibes, so if
you're totally anxious he's going to be anxious with you, but
you are only human yourself and you are entitled to a little
weakness now and then. Confide in your husband, he may
need to confide in you as well. Cry it out if you feel the
need. I mean allow yourself to grieve, because you have
suffered a loss, there is no shame to that. You can't heal
until you grieve yourself out. Visit Holland Often.
It sounds like you haven't quite finished with the grieving part
- everyone has their own schedule, there is no time limit, no
rules to any of that.
Then there is just a whole lot of simply accepting your fate.
Accepting, if you're a religious woman, that this was God's
plan for your family and that makes it just fine.
You'll find out though that you'll all adapt to your new normal
routine and the time is going to pass quicker than you
imagine.
Hang in there girly girl, we women can't be 100% perfect all
the time, just don't tell the men that! ha ha. Go start
planning yourself a grand Pity Party right now. Get yourself
a load of chocolate, a bottle of booze or whatever you like to
drown your sorrow in and just have a ball of it.
Feel sorry for yourself for a while, let it happen - and then
you'll start coming back up, I promise.
Sending love,
Shawnee
*****************************************************************************
Shawnee, Bailee had horrible treatment,which caused her
atypical clubfoot, which HAS been corrected by Dr.P, thanks
to you, you urged me to go, and our family will forever
remember you for it.
Blessings to all
Sheila and Bailee
(The best way to thank me is to continue to spread the word
Sheila! Consider becoming involved with the Parents for
Ponseti, or the Ponseti International Association, but I am
glad I could help!)