Update on Lexie
MomtoLJ
Hi everyone
I just wanted to send an update on Lexie. If you forwarded the other
notes regarding Lexie, please please forward this one as well, I have a
large number of private notes from people and I will attempt to answer
them tomorrow... I'm sorry if this note is somewhat repetitive...
We are home. Lexie is wide awake in the living room on her very own
(ok, for a while) hospital bed watching TV, as she took a good nap this
afternoon. She has a trapeze thingie to pull herself up, and we have a
slid board and a wheel chair, but I doubt if the wheel chair will work,
as it is too narrow. Her cast is such that he knees are pointing
outward slightly and bent, so she doesn't fit in a car set...we took an
ambulance home! Lexie was thrilled, and her pain meds kept the old
bouncing vehicle from hurting too much. She already has lots of
signatures on her cast, but it's pretty big and there is still room for
more... I need to sign before all the good space is taken.
I'm not sure what was said, so I'll repeat this too. Lexie fell rather
hard on tile and broke her femur at the neck. This is, sadly, a very
bad break, and her break in particular was one of the worst the
pediatric trauma orthopedic surgeon (specializing in fractures) had ever
seen. We did get her into surgery within the 6 hour time frame crucial
to help ensure healing, but because of the position of the break and the
severity of it, there is a 60% chance of the femur head dying which
would lead to long term issues, likely more surgery, arthritis, growth
problems, etc. (Lexie is unaware of these issues). As it is we are
looking at long term recovery, with about 4-6 weeks immobility in a body
cast, and long term PT. The surgeon put in 3 pins and is hopeful that
Lexie will recover. He was very impressed with her spirit and
intelligence and her assertiveness with the care providers at the
hospital, and we all commented on how her positive spirit and attitude
will help with her healing. She had been expected to stay in the
hospital until Thursday or Friday, but we came home today, so that was a
good sign of at least her recovery from the surgery and trauma of the
situation.
Janene is very upset, this has been very difficult for her. Janene
stayed the last two nights at friend's houses (thank you Keri and
Lyla!), and is now in bed in front of me (and I'll be joining her to
cuddle with her in a few moments). My parents are trying to arrange to
come out, as I don't have any sick days left (after this week) and will
need to return to work. I am also looking into respite care for
children, our insurance doesn't cover that but I am going to see if
there is another organization that will cover that sort of thing.
Two other friends came out today to meet the delivery truck and while
they waited, they took down 98% of my christmas decorations including
the tree, and finished cleaning up after a very rowdy girl scout New
Year's Slumber Party we hosted for my girl scout troop. I came home and
broke down in tears at this gift, it was overwhelming. Everyone has
been so supportive and I'm so thankful, and I know that I'm going to
need more help in the next month or so... :-/.
We had dinner delivered (along with Janene, thanks Lyla!) and my sister
brought my dog, so we are all here...
The surgeon did come out before putting the body cast on and ask me if I
thought Lexie was a child who would be still and 100% compliant with
staying still and off her leg... after a discussion we decided a body
cast was best, it will be a hard few months but ultimately this gives
her the best chance of a full recovery. We won't know for 2-3 months if
Lexie won the lottery on this (ie, bone did not die) or if she didn't
beat the odds. Keep up the good thoughts, please.
Well, Lexie is ready for more meds, and then sleep...
Thank you everyone for your support. Good night
Joylyn
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Checked by AVG Anti-Virus.
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[Non-text portions of this message have been removed]
I just wanted to send an update on Lexie. If you forwarded the other
notes regarding Lexie, please please forward this one as well, I have a
large number of private notes from people and I will attempt to answer
them tomorrow... I'm sorry if this note is somewhat repetitive...
We are home. Lexie is wide awake in the living room on her very own
(ok, for a while) hospital bed watching TV, as she took a good nap this
afternoon. She has a trapeze thingie to pull herself up, and we have a
slid board and a wheel chair, but I doubt if the wheel chair will work,
as it is too narrow. Her cast is such that he knees are pointing
outward slightly and bent, so she doesn't fit in a car set...we took an
ambulance home! Lexie was thrilled, and her pain meds kept the old
bouncing vehicle from hurting too much. She already has lots of
signatures on her cast, but it's pretty big and there is still room for
more... I need to sign before all the good space is taken.
I'm not sure what was said, so I'll repeat this too. Lexie fell rather
hard on tile and broke her femur at the neck. This is, sadly, a very
bad break, and her break in particular was one of the worst the
pediatric trauma orthopedic surgeon (specializing in fractures) had ever
seen. We did get her into surgery within the 6 hour time frame crucial
to help ensure healing, but because of the position of the break and the
severity of it, there is a 60% chance of the femur head dying which
would lead to long term issues, likely more surgery, arthritis, growth
problems, etc. (Lexie is unaware of these issues). As it is we are
looking at long term recovery, with about 4-6 weeks immobility in a body
cast, and long term PT. The surgeon put in 3 pins and is hopeful that
Lexie will recover. He was very impressed with her spirit and
intelligence and her assertiveness with the care providers at the
hospital, and we all commented on how her positive spirit and attitude
will help with her healing. She had been expected to stay in the
hospital until Thursday or Friday, but we came home today, so that was a
good sign of at least her recovery from the surgery and trauma of the
situation.
Janene is very upset, this has been very difficult for her. Janene
stayed the last two nights at friend's houses (thank you Keri and
Lyla!), and is now in bed in front of me (and I'll be joining her to
cuddle with her in a few moments). My parents are trying to arrange to
come out, as I don't have any sick days left (after this week) and will
need to return to work. I am also looking into respite care for
children, our insurance doesn't cover that but I am going to see if
there is another organization that will cover that sort of thing.
Two other friends came out today to meet the delivery truck and while
they waited, they took down 98% of my christmas decorations including
the tree, and finished cleaning up after a very rowdy girl scout New
Year's Slumber Party we hosted for my girl scout troop. I came home and
broke down in tears at this gift, it was overwhelming. Everyone has
been so supportive and I'm so thankful, and I know that I'm going to
need more help in the next month or so... :-/.
We had dinner delivered (along with Janene, thanks Lyla!) and my sister
brought my dog, so we are all here...
The surgeon did come out before putting the body cast on and ask me if I
thought Lexie was a child who would be still and 100% compliant with
staying still and off her leg... after a discussion we decided a body
cast was best, it will be a hard few months but ultimately this gives
her the best chance of a full recovery. We won't know for 2-3 months if
Lexie won the lottery on this (ie, bone did not die) or if she didn't
beat the odds. Keep up the good thoughts, please.
Well, Lexie is ready for more meds, and then sleep...
Thank you everyone for your support. Good night
Joylyn
>----------
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[Non-text portions of this message have been removed]
MomtoLJ
Hi everyone
Sorry for the mass email, but many people have asked for an update, so I
am going to send one.
Lexie is doing very well. She is doing well medically, and
emotionally. She has good spirits, is learning to really control what
she can control. She has a bedside table now and that's helping. She
has learned to use the trapeze, to pull herself up and to move around
and exercise a bit. We now have the proper size wheel chair, which will
help. I plan to help her into it tomorrow and maybe get her to the
porch, if it's not raining. She has enjoyed the visitors, she is
definitely an extrovert and needs the social contact.
I am just stunned with the help we've received. People are bringing
meals (Ticia, LOVED the rice and potstickers, is that how you spell it?
yummy! The African mac and cheese type dish was great too!), things I
need from the store, and helping a lot with other things. Lexie was
cold the first night and an electrical blanket helped with that. I am
just so fortunate to have such great friends. I can't even begin to
make a list of the help that I've had, and that has been promised for
the next weeks. The meals are just incredible, I will never again NOT
make a meal for a family in need, I never before realized how such a
simple thing could be so big. Just to not have to think about what I'm
going to eat, but to have someone bring me food, to feed to all of us.
The CT scan didn't show any abnormalities, so we really don't know why
this happened. There was no evidence of brittle bone disease or a cyst
or tumor or any other explanation. At this point we are thinking it was
just an accident. We are trying to remain positive about the outcome of
all of this. I did find out her surgeon is one of the top four in the
country, with this specialty (pediatric orthopedic trauma). I love, so
far, all of the people in his office. They are just friendly and nice
and wonderful. Even though her surgeon is in Orange County and we are
now in LA county and farther away, we will figure out how to get to him,
for continuity of care as well as just simply because he is a nice man
that treats my daughter with dignity and respect.
Janene is doing OK but it's pretty hard one her. She just told me she
wants to get chickenpox so she can be sick and have everyone wait on her
and treat her like a queen.
One issue we are working on is how to get her to her doctor
appointment. We really need a wheelchair assessable van. Anyone have
any ideas on that?
Well, Lexie is calling and Janene needs a story...
Thank you everyone for your thoughts and prayers. They are much
appreciated. Again, if you have sent this to other lists I am no
longer on, please feel free to forward. And, again, sorry for the mass
email. I have a bunch of emails that I have not answered and I'm going
to try to do so soon...
Thanks again
Joylyn
MomtoLJ wrote:
Sorry for the mass email, but many people have asked for an update, so I
am going to send one.
Lexie is doing very well. She is doing well medically, and
emotionally. She has good spirits, is learning to really control what
she can control. She has a bedside table now and that's helping. She
has learned to use the trapeze, to pull herself up and to move around
and exercise a bit. We now have the proper size wheel chair, which will
help. I plan to help her into it tomorrow and maybe get her to the
porch, if it's not raining. She has enjoyed the visitors, she is
definitely an extrovert and needs the social contact.
I am just stunned with the help we've received. People are bringing
meals (Ticia, LOVED the rice and potstickers, is that how you spell it?
yummy! The African mac and cheese type dish was great too!), things I
need from the store, and helping a lot with other things. Lexie was
cold the first night and an electrical blanket helped with that. I am
just so fortunate to have such great friends. I can't even begin to
make a list of the help that I've had, and that has been promised for
the next weeks. The meals are just incredible, I will never again NOT
make a meal for a family in need, I never before realized how such a
simple thing could be so big. Just to not have to think about what I'm
going to eat, but to have someone bring me food, to feed to all of us.
The CT scan didn't show any abnormalities, so we really don't know why
this happened. There was no evidence of brittle bone disease or a cyst
or tumor or any other explanation. At this point we are thinking it was
just an accident. We are trying to remain positive about the outcome of
all of this. I did find out her surgeon is one of the top four in the
country, with this specialty (pediatric orthopedic trauma). I love, so
far, all of the people in his office. They are just friendly and nice
and wonderful. Even though her surgeon is in Orange County and we are
now in LA county and farther away, we will figure out how to get to him,
for continuity of care as well as just simply because he is a nice man
that treats my daughter with dignity and respect.
Janene is doing OK but it's pretty hard one her. She just told me she
wants to get chickenpox so she can be sick and have everyone wait on her
and treat her like a queen.
One issue we are working on is how to get her to her doctor
appointment. We really need a wheelchair assessable van. Anyone have
any ideas on that?
Well, Lexie is calling and Janene needs a story...
Thank you everyone for your thoughts and prayers. They are much
appreciated. Again, if you have sent this to other lists I am no
longer on, please feel free to forward. And, again, sorry for the mass
email. I have a bunch of emails that I have not answered and I'm going
to try to do so soon...
Thanks again
Joylyn
MomtoLJ wrote:
> Hi everyone[Non-text portions of this message have been removed]
>
> I just wanted to send an update on Lexie. If you forwarded the other
> notes regarding Lexie, please please forward this one as well, I have
> a large number of private notes from people and I will attempt to
> answer them tomorrow... I'm sorry if this note is somewhat repetitive...
>
> We are home. Lexie is wide awake in the living room on her very own
> (ok, for a while) hospital bed watching TV, as she took a good nap
> this afternoon. She has a trapeze thingie to pull herself up, and we
> have a slid board and a wheel chair, but I doubt if the wheel chair
> will work, as it is too narrow. Her cast is such that he knees are
> pointing outward slightly and bent, so she doesn't fit in a car
> set...we took an ambulance home! Lexie was thrilled, and her pain
> meds kept the old bouncing vehicle from hurting too much. She already
> has lots of signatures on her cast, but it's pretty big and there is
> still room for more... I need to sign before all the good space is taken.
>
> I'm not sure what was said, so I'll repeat this too. Lexie fell rather
> hard on tile and broke her femur at the neck. This is, sadly, a very
> bad break, and her break in particular was one of the worst the
> pediatric trauma orthopedic surgeon (specializing in fractures) had
> ever seen. We did get her into surgery within the 6 hour time frame
> crucial to help ensure healing, but because of the position of the
> break and the severity of it, there is a 60% chance of the femur head
> dying which would lead to long term issues, likely more surgery,
> arthritis, growth problems, etc. (Lexie is unaware of these issues).
> As it is we are looking at long term recovery, with about 4-6 weeks
> immobility in a body cast, and long term PT. The surgeon put in 3
> pins and is hopeful that Lexie will recover. He was very impressed
> with her spirit and intelligence and her assertiveness with the care
> providers at the hospital, and we all commented on how her positive
> spirit and attitude will help with her healing. She had been expected
> to stay in the hospital until Thursday or Friday, but we came home
> today, so that was a good sign of at least her recovery from the
> surgery and trauma of the situation.
>
> Janene is very upset, this has been very difficult for her. Janene
> stayed the last two nights at friend's houses (thank you Keri and
> Lyla!), and is now in bed in front of me (and I'll be joining her to
> cuddle with her in a few moments). My parents are trying to arrange
> to come out, as I don't have any sick days left (after this week) and
> will need to return to work. I am also looking into respite care for
> children, our insurance doesn't cover that but I am going to see if
> there is another organization that will cover that sort of thing.
>
> Two other friends came out today to meet the delivery truck and while
> they waited, they took down 98% of my christmas decorations including
> the tree, and finished cleaning up after a very rowdy girl scout New
> Year's Slumber Party we hosted for my girl scout troop. I came home
> and broke down in tears at this gift, it was overwhelming. Everyone
> has been so supportive and I'm so thankful, and I know that I'm going
> to need more help in the next month or so... :-/.
>
> We had dinner delivered (along with Janene, thanks Lyla!) and my
> sister brought my dog, so we are all here...
>
> The surgeon did come out before putting the body cast on and ask me if
> I thought Lexie was a child who would be still and 100% compliant with
> staying still and off her leg... after a discussion we decided a body
> cast was best, it will be a hard few months but ultimately this gives
> her the best chance of a full recovery. We won't know for 2-3 months
> if Lexie won the lottery on this (ie, bone did not die) or if she
> didn't beat the odds. Keep up the good thoughts, please.
>
> Well, Lexie is ready for more meds, and then sleep...
>
> Thank you everyone for your support. Good night
>
> Joylyn
>
>>
[email protected]
In a message dated 1/8/2005 1:13:35 A.M. Mountain Standard Time,
joylyn1@... writes:
One issue we are working on is how to get her to her doctor
appointment. We really need a wheelchair assessable van. Anyone have
any ideas on that?
=================
Maye there's something there like Suntran (the city bus line) has in
Albuquerque, a van you can make an appointment to have pick you up. People use it
for that, I know--getting to the doctor when they can't get to the bus stop
or get into the bus. Because it'sin another county that might be a problem,
but there might be something there like that, or a charity that provides such
services.
Sandra
[Non-text portions of this message have been removed]
joylyn1@... writes:
One issue we are working on is how to get her to her doctor
appointment. We really need a wheelchair assessable van. Anyone have
any ideas on that?
=================
Maye there's something there like Suntran (the city bus line) has in
Albuquerque, a van you can make an appointment to have pick you up. People use it
for that, I know--getting to the doctor when they can't get to the bus stop
or get into the bus. Because it'sin another county that might be a problem,
but there might be something there like that, or a charity that provides such
services.
Sandra
[Non-text portions of this message have been removed]
MomtoLJ
SandraDodd@... wrote:
but yes, because of the county thing... here is what I wrote to another
list.
They do... here's the scoop. Lexie's doc is in Orange County, we are
just over the county line in another county, the services are a real
pain if you cross county l ines, you have to go to the hub and be taken
off the one van/bus and then put on another, when they get there. I was
told this can take hours. Also, there is a 3 week processing time which
includes them coming out to assess the patient, and another visit that
takes the patient to their offices for another assessment. So, by the
time we did this, we wouldn't need the service...
Joylyn
>I will check into a charity, but the bus situation is similar to suntran
> Maye there's something there like Suntran (the city bus line) has in
> Albuquerque, a van you can make an appointment to have pick you up.
> People use it
> for that, I know--getting to the doctor when they can't get to the
> bus stop
> or get into the bus. Because it'sin another county that might be a
> problem,
> but there might be something there like that, or a charity that
> provides such
> services.
but yes, because of the county thing... here is what I wrote to another
list.
They do... here's the scoop. Lexie's doc is in Orange County, we are
just over the county line in another county, the services are a real
pain if you cross county l ines, you have to go to the hub and be taken
off the one van/bus and then put on another, when they get there. I was
told this can take hours. Also, there is a 3 week processing time which
includes them coming out to assess the patient, and another visit that
takes the patient to their offices for another assessment. So, by the
time we did this, we wouldn't need the service...
Joylyn
>[Non-text portions of this message have been removed]
> Sandra
>
>
> [Non-text portions of this message have been removed]
>
>
>
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MomtoLJ
I think today is the 16th...
Lexie is outside in her wheelchair, in clothing. This is a big deal.
No clothes fit over her cast, and a friend made her some wrap around
shorts that cover her as needed and are darn cute too! She has that and
her DI tshirt on, and is not in her hospital bed with a sheet over
her--what this must be doing to her mentality, just to be out of bed
outside with her friend playing.
She has good spirits, loves to talk on the phone with folks that call,
and loves visitors, is eating better, especially at night, although we
are having issues with getting her vitamins down, she just doesn't like
the flavor so we will try smooshing them again today and mixing them
with maybe yogurt or pudding. She is pretty much pain free, except at
night a bit, and is getting really good at moving herself around,
getting to things on her table, and handling her personal needs (with
assistance, of course). Lexie is going to get through this because she
is so strong and brave.
I told her that in the hospital and she forbid me to say it again. She
said "when you tell me I'm strong and brave I think this is some huge
and horrible situation I have to deal with and that it will be hard, but
if you just tell me you love me then I know it's just a normal situation
I can handle." Wisdom from my 9 year old. So I will just tell you all
that she's strong and brave and I will just tell her I love her. I did
find a way to crawl into bed with her to cuddle, something we have
missed dreadfully, and that has helped us both.
I have a cold as does Janene, but I'm not surprised, between being
exposed to hospital germs and lack of sleep... I am catching up this
weekend.
The things to over come still seem to be transportation and help with
home health care. My mom isn't going to be able to do this for another
four weeks, or longer (I will talk to the doctor on Monday about what
the situation is when her cast is removed, will she be able to sit up
and be in a regular car seat? I'm pretty sure she'll need to be pretty
much immobile for a while longer... If it's just a wheel chair and she's
sitting up then we may be able to return to our previous child care
situation before the injury...) I am calling agency after agency, each
of whom just tells me to call another agency... Most of those calls are
stopped for the long weekend, but I will resume on Tuesday. Kaiser is
open on Monday and I put a call in Friday night demanding that they help
with at least the transportation to the doctor and back as that is
medical necessary. I told them that if I put her unsafely in my car
after THEY told me it was unsafe, and there was an accident, I'm sure
that my car insurance would be quite interested in how a medical team
could allow a child to be transported unsafely... They tried to say the
trip home from the hospital (2nd hospital stay, I think some of you
don't know she had to go in again last week, Sunday-Tuesday--she got a
new hot pink cast out of it!) wasn't covered and I told them that about
my insurance and within an hour they had agreed to transport her home by
ambulance --the precedence has been set.
Well, I need to go out to help her go on a walk... the wheel chair is
off center a bit because of her size, but it's the only one that will
fit her cast, so her friend can't take her without me there to help in
case there is a problem. Thanks again for all your healing thoughts and
prayers and help with meals (the meals are an incredible help, I never
understood that before, but I do now!) and all the other help people are
giving.
Joylyn
No virus found in this outgoing message.
Checked by AVG Anti-Virus.
Version: 7.0.300 / Virus Database: 265.6.13 - Release Date: 1/16/2005
[Non-text portions of this message have been removed]
Lexie is outside in her wheelchair, in clothing. This is a big deal.
No clothes fit over her cast, and a friend made her some wrap around
shorts that cover her as needed and are darn cute too! She has that and
her DI tshirt on, and is not in her hospital bed with a sheet over
her--what this must be doing to her mentality, just to be out of bed
outside with her friend playing.
She has good spirits, loves to talk on the phone with folks that call,
and loves visitors, is eating better, especially at night, although we
are having issues with getting her vitamins down, she just doesn't like
the flavor so we will try smooshing them again today and mixing them
with maybe yogurt or pudding. She is pretty much pain free, except at
night a bit, and is getting really good at moving herself around,
getting to things on her table, and handling her personal needs (with
assistance, of course). Lexie is going to get through this because she
is so strong and brave.
I told her that in the hospital and she forbid me to say it again. She
said "when you tell me I'm strong and brave I think this is some huge
and horrible situation I have to deal with and that it will be hard, but
if you just tell me you love me then I know it's just a normal situation
I can handle." Wisdom from my 9 year old. So I will just tell you all
that she's strong and brave and I will just tell her I love her. I did
find a way to crawl into bed with her to cuddle, something we have
missed dreadfully, and that has helped us both.
I have a cold as does Janene, but I'm not surprised, between being
exposed to hospital germs and lack of sleep... I am catching up this
weekend.
The things to over come still seem to be transportation and help with
home health care. My mom isn't going to be able to do this for another
four weeks, or longer (I will talk to the doctor on Monday about what
the situation is when her cast is removed, will she be able to sit up
and be in a regular car seat? I'm pretty sure she'll need to be pretty
much immobile for a while longer... If it's just a wheel chair and she's
sitting up then we may be able to return to our previous child care
situation before the injury...) I am calling agency after agency, each
of whom just tells me to call another agency... Most of those calls are
stopped for the long weekend, but I will resume on Tuesday. Kaiser is
open on Monday and I put a call in Friday night demanding that they help
with at least the transportation to the doctor and back as that is
medical necessary. I told them that if I put her unsafely in my car
after THEY told me it was unsafe, and there was an accident, I'm sure
that my car insurance would be quite interested in how a medical team
could allow a child to be transported unsafely... They tried to say the
trip home from the hospital (2nd hospital stay, I think some of you
don't know she had to go in again last week, Sunday-Tuesday--she got a
new hot pink cast out of it!) wasn't covered and I told them that about
my insurance and within an hour they had agreed to transport her home by
ambulance --the precedence has been set.
Well, I need to go out to help her go on a walk... the wheel chair is
off center a bit because of her size, but it's the only one that will
fit her cast, so her friend can't take her without me there to help in
case there is a problem. Thanks again for all your healing thoughts and
prayers and help with meals (the meals are an incredible help, I never
understood that before, but I do now!) and all the other help people are
giving.
Joylyn
>----------
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Checked by AVG Anti-Virus.
Version: 7.0.300 / Virus Database: 265.6.13 - Release Date: 1/16/2005
[Non-text portions of this message have been removed]
nellebelle
>>>>I told her that in the hospital and she forbid me to say it again. She said "when you tell me I'm strong and brave I think this is some huge and horrible situation I have to deal with and that it will be hard, but if you just tell me you love me then I know it's just a normal situation I can handle.">>>>>>That's interesting. I wonder if some people would like hearing that they are strong and brave?
I'm glad to hear that Lexie is coming along and that you have lots of support. It can be a gift to let our friends help us, I think.
I mentioned awhile back that I would be having chemotherapy for breast cancer, but I've decided not to do the chemotherapy at this time. ** (note below in case anyone wonders about that. I gave little thought to breast cancer until it happened to me.)
One of my friends has told me several times that I'm so brave. While it didn't highly annoy me, I didn't find it very helpful either. I mean, this thing has happened and I have to deal with it. Is that bravery? A few times I've found myself comforting other people who act so upset by my diagnosis. Weird. OTH, it is difficult to know what to say to people when bad things happen.
Mary Ellen
**note about breast cancer follows. Delete now if not interested.
My husband found the lump. I've since heard that a majority of breast cancers are found by the person's partner. Mine was a "typical" cancer, being ER+ (Estrogen receptor positive).
Definition of a small breast tumor is debatable. It used to be 2 cm, but some docs think over 1. Over 2 centimeters (usually chemo) and under 1 centimeter (chemo rarely recommended) are easier to recommend treatment. Mine was 1.3 cm. I saw two oncologists who both said it is a tough call whether to choose chemotherapy. It is believed that half of the women who receive chemo for breast cancer do not need it, but there are no definitive tests YET available to accurately predict which ones should. Chemotherapy treatment is much lower risk than it used to be, but certainly not something anybody would choose without good reason.
I had a sentinel lymph node biopsy done. That was negative (no cancer detected in lymph nodes.) That test is about 97% reliable. I had a blood test called CA28/29. It tests for a protein in the blood that is secreted by tumors. Normal is 0-40 and mine was 4. The test has limited use though. If it were reliable and useful for detecting cancer, it would probably be on the list of standard screening tests. It does give the doctor some info and maybe its use now will result in better info down the road. I had a chest x-ray that appeared normal. When breast cancer spreads, it most often spreads first to bones and/or lungs. I had quite a lesson on why they can't just do a complete bone scan to look for spread. Apparently most middle-aged or older people have all kinds of scars or other oddities in their skeletons and doctors see a lot of things that look strange, but most of them aren't cancer. So then it begs the question of what they do when they see something odd. More surgery? When most of what they find is benign? Surgery carries plenty of risks that rule out using it without good cause.
There are new results on a test that checks the DNA of the tumor. Early results show it highly reliable at predicting which cancers will metastasize, but the test is not available for general use yet.
I will be having radiation to the breast area. This would be recommended even if I had chemo. For some unknown reason, chemo doesn't prevent local recurrence. Studies have found that lumpectomy (removing the lump) followed by radiation has the same long-term outcome as mastectomy (removing the entire breast) When the radiation is done in early March, I am scheduled to take tamoxifen, a hormone receptor blocker. That has potential risks too, but has been found to make a large difference in recurrence rates.
[Non-text portions of this message have been removed]
MomtoLJ
Hi everyone!
Another week gone. Lexie has been in the cast for three weeks, and has
three more weeks to go. I spoke with her doctor today and she's
scheduled to go in on the 14th to have the cast removed. They will do it
in the office, and he reminded me to bring her clothing. I'm pretty
glad he reminded me, because I may have forgotten... she will have gone
6 weeks without wearing undies, clean or otherwise... Gotta find the
humor. Lexie has her day planned out. She wants a bath, (a real one,
these sponge baths just don't cut it!), and to go out to eat. The
situation has made her appreciate the small things in life and that can
only be good. She's happy that the appt will be on valentine's day, and
I'm happy too, as it's President's day or some such thing, which means
I'll have the day off. Our appt is for 10:00 am!
She will still be wheelchair bound, or on crutches, for six more weeks.
The wheel chair will be switched out, so she'll have a normal sized
child's wheel chair or small adults, instead of this giant chair we have
now! I am thinking the hospital bed will still be wise, just because
the waterbed will likely not be a good idea, and the other bed is on the
floor, without a frame.
Lexie continues to be mostly in good spirits. I am amazed at her
positive attitude, and willingness to do whatever it takes! She can get
herself out of her wheel chair alone, with the help of her trapieze
bar. She does many things alone, including taking care of a lot of her
personal needs (as she can, she still needs some help.) She loves
visitors, and they give her energy (she's my extrovert!) so keep the
visits coming! She loves to go for walks and is competent with the
wheel chair for a short time period, and confident enough that I have
let her go for walks down the street with a friend. Girl Scouts and DI
are coming to her, so that's helpful.
She is selling girl scout cookies and we are thinking she might have a
good year (another bit of humor). She went out last night to neighbors
and she and Janene sold about 50 boxes.
The hamster issue seems to have been solved too, as Catherine took them
to a fund raising sale, and sold all of them...to be picked up Friday or
Sunday! Did you all know that hamsters still nurse when they are three
weeks old, this is in excess of their gestational time. It's amazing
what we are learning about hamsters. I actually have a waiting list if
someone renigs on a hamster.
The dinners are still so appreciated, as are the visits. Today I was
just so tired, when I came home. Lexie had a few boxes from friends to
open (knitting stuff from Wendy, thanks! love the needles, arts and
crafts and other things from Fran, and the whopper, a laptop computer
from a bunch of wonderful friends from around the country and as far
away as Australia! The computer is just amazing, and I'm still crying
over this tremendous gift!) and I couldn't even think of eating when
Lyla shows up with salad, just what I was craving, and protein filled
chili casserole. The list of things to do are endless, so that was a
big one (feeding my children, what could be bigger) crossed off--I could
concentrate on the rest, and sit down and relax for a few moments. I
have vowed strongly that I will make meals and take them to anyone in
need always, forever. And even if I don't cook, I will bring meals
because even the "bought" meals have come in handy (I ate Pollo Loco at
work!). I don't know what happens to the evening, but it's already
10:30 and I've accomplished half of what I wanted/needed to do, and yet
I know I haven't sat down or relaxed at all except for the 20 minute
bath I took an hour ago. So the meals are so helpful. If they could
continue, at least every other day, I would very much appreciate it.
The transportation issue has been solved, as well as possible, with
furniture ties and my van. Basically two seats have been removed, and
Lexie goes in the van, and the ties serve as extra seatbelts, attached
to the bars where the extra seats go. She also wears the regular
seatbelt. It's better than nothing and with this she will be able to
participate in the DI instant challenge day on Saturday, and go to park
day, etc. It's very difficult to get her UP into the van (down is
easier, I just push her out ;-)) it takes two strong bodies (my parents
cannot help with this) but I figure everything will work out....
The care issue is still an issue. I am still continuing to look for
people/organizations who can help with this need. Three more weeks....
In a few months we'll look back on this and wonder why we were worried.
As most of you know, I'm not hugely religious, but I am feeling as
though it will all work out as it needs to work out, trusting that
things will happen as they need to happen. So far that has happened. I
work it on my end, calling and thinking and trying to find a solution
and it will happen, the solution will come and all will be fine.
My parents are doing a wonderful job, but it's tiring for them, and
difficult. I'm not sure how much longer they can stay, but I
appreciative of every minute, every day.
I continue to be overwhelmed with the friends we have who have supported
us through this time. We are indeed very rich people, in the best
meaning of that word. Thank you everyone. I can never repay or say
thank you enough, so I will simply vow to pass it on.
Joylyn
MomtoLJ wrote:
Another week gone. Lexie has been in the cast for three weeks, and has
three more weeks to go. I spoke with her doctor today and she's
scheduled to go in on the 14th to have the cast removed. They will do it
in the office, and he reminded me to bring her clothing. I'm pretty
glad he reminded me, because I may have forgotten... she will have gone
6 weeks without wearing undies, clean or otherwise... Gotta find the
humor. Lexie has her day planned out. She wants a bath, (a real one,
these sponge baths just don't cut it!), and to go out to eat. The
situation has made her appreciate the small things in life and that can
only be good. She's happy that the appt will be on valentine's day, and
I'm happy too, as it's President's day or some such thing, which means
I'll have the day off. Our appt is for 10:00 am!
She will still be wheelchair bound, or on crutches, for six more weeks.
The wheel chair will be switched out, so she'll have a normal sized
child's wheel chair or small adults, instead of this giant chair we have
now! I am thinking the hospital bed will still be wise, just because
the waterbed will likely not be a good idea, and the other bed is on the
floor, without a frame.
Lexie continues to be mostly in good spirits. I am amazed at her
positive attitude, and willingness to do whatever it takes! She can get
herself out of her wheel chair alone, with the help of her trapieze
bar. She does many things alone, including taking care of a lot of her
personal needs (as she can, she still needs some help.) She loves
visitors, and they give her energy (she's my extrovert!) so keep the
visits coming! She loves to go for walks and is competent with the
wheel chair for a short time period, and confident enough that I have
let her go for walks down the street with a friend. Girl Scouts and DI
are coming to her, so that's helpful.
She is selling girl scout cookies and we are thinking she might have a
good year (another bit of humor). She went out last night to neighbors
and she and Janene sold about 50 boxes.
The hamster issue seems to have been solved too, as Catherine took them
to a fund raising sale, and sold all of them...to be picked up Friday or
Sunday! Did you all know that hamsters still nurse when they are three
weeks old, this is in excess of their gestational time. It's amazing
what we are learning about hamsters. I actually have a waiting list if
someone renigs on a hamster.
The dinners are still so appreciated, as are the visits. Today I was
just so tired, when I came home. Lexie had a few boxes from friends to
open (knitting stuff from Wendy, thanks! love the needles, arts and
crafts and other things from Fran, and the whopper, a laptop computer
from a bunch of wonderful friends from around the country and as far
away as Australia! The computer is just amazing, and I'm still crying
over this tremendous gift!) and I couldn't even think of eating when
Lyla shows up with salad, just what I was craving, and protein filled
chili casserole. The list of things to do are endless, so that was a
big one (feeding my children, what could be bigger) crossed off--I could
concentrate on the rest, and sit down and relax for a few moments. I
have vowed strongly that I will make meals and take them to anyone in
need always, forever. And even if I don't cook, I will bring meals
because even the "bought" meals have come in handy (I ate Pollo Loco at
work!). I don't know what happens to the evening, but it's already
10:30 and I've accomplished half of what I wanted/needed to do, and yet
I know I haven't sat down or relaxed at all except for the 20 minute
bath I took an hour ago. So the meals are so helpful. If they could
continue, at least every other day, I would very much appreciate it.
The transportation issue has been solved, as well as possible, with
furniture ties and my van. Basically two seats have been removed, and
Lexie goes in the van, and the ties serve as extra seatbelts, attached
to the bars where the extra seats go. She also wears the regular
seatbelt. It's better than nothing and with this she will be able to
participate in the DI instant challenge day on Saturday, and go to park
day, etc. It's very difficult to get her UP into the van (down is
easier, I just push her out ;-)) it takes two strong bodies (my parents
cannot help with this) but I figure everything will work out....
The care issue is still an issue. I am still continuing to look for
people/organizations who can help with this need. Three more weeks....
In a few months we'll look back on this and wonder why we were worried.
As most of you know, I'm not hugely religious, but I am feeling as
though it will all work out as it needs to work out, trusting that
things will happen as they need to happen. So far that has happened. I
work it on my end, calling and thinking and trying to find a solution
and it will happen, the solution will come and all will be fine.
My parents are doing a wonderful job, but it's tiring for them, and
difficult. I'm not sure how much longer they can stay, but I
appreciative of every minute, every day.
I continue to be overwhelmed with the friends we have who have supported
us through this time. We are indeed very rich people, in the best
meaning of that word. Thank you everyone. I can never repay or say
thank you enough, so I will simply vow to pass it on.
Joylyn
MomtoLJ wrote:
> I think today is the 16th...[Non-text portions of this message have been removed]
>
> Lexie is outside in her wheelchair, in clothing. This is a big deal.
> No clothes fit over her cast, and a friend made her some wrap around
> shorts that cover her as needed and are darn cute too! She has that and
> her DI tshirt on, and is not in her hospital bed with a sheet over
> her--what this must be doing to her mentality, just to be out of bed
> outside with her friend playing.
>
> She has good spirits, loves to talk on the phone with folks that call,
> and loves visitors, is eating better, especially at night, although we
> are having issues with getting her vitamins down, she just doesn't like
> the flavor so we will try smooshing them again today and mixing them
> with maybe yogurt or pudding. She is pretty much pain free, except at
> night a bit, and is getting really good at moving herself around,
> getting to things on her table, and handling her personal needs (with
> assistance, of course). Lexie is going to get through this because she
> is so strong and brave.
>
> I told her that in the hospital and she forbid me to say it again. She
> said "when you tell me I'm strong and brave I think this is some huge
> and horrible situation I have to deal with and that it will be hard, but
> if you just tell me you love me then I know it's just a normal situation
> I can handle." Wisdom from my 9 year old. So I will just tell you all
> that she's strong and brave and I will just tell her I love her. I did
> find a way to crawl into bed with her to cuddle, something we have
> missed dreadfully, and that has helped us both.
>
> I have a cold as does Janene, but I'm not surprised, between being
> exposed to hospital germs and lack of sleep... I am catching up this
> weekend.
>
> The things to over come still seem to be transportation and help with
> home health care. My mom isn't going to be able to do this for another
> four weeks, or longer (I will talk to the doctor on Monday about what
> the situation is when her cast is removed, will she be able to sit up
> and be in a regular car seat? I'm pretty sure she'll need to be pretty
> much immobile for a while longer... If it's just a wheel chair and she's
> sitting up then we may be able to return to our previous child care
> situation before the injury...) I am calling agency after agency, each
> of whom just tells me to call another agency... Most of those calls are
> stopped for the long weekend, but I will resume on Tuesday. Kaiser is
> open on Monday and I put a call in Friday night demanding that they help
> with at least the transportation to the doctor and back as that is
> medical necessary. I told them that if I put her unsafely in my car
> after THEY told me it was unsafe, and there was an accident, I'm sure
> that my car insurance would be quite interested in how a medical team
> could allow a child to be transported unsafely... They tried to say the
> trip home from the hospital (2nd hospital stay, I think some of you
> don't know she had to go in again last week, Sunday-Tuesday--she got a
> new hot pink cast out of it!) wasn't covered and I told them that about
> my insurance and within an hour they had agreed to transport her home by
> ambulance --the precedence has been set.
>
> Well, I need to go out to help her go on a walk... the wheel chair is
> off center a bit because of her size, but it's the only one that will
> fit her cast, so her friend can't take her without me there to help in
> case there is a problem. Thanks again for all your healing thoughts and
> prayers and help with meals (the meals are an incredible help, I never
> understood that before, but I do now!) and all the other help people are
> giving.
>
> Joylyn
>
> >
>
> ----------
>
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> Version: 7.0.300 / Virus Database: 265.6.13 - Release Date: 1/16/2005
>
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
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[email protected]
In a message dated 1/25/05 9:25:20 AM, joylyn1@... writes:
<< Did you all know that hamsters still nurse when they are three
weeks old, this is in excess of their gestational time. >>
===
Humans nurse in excess of gestational time.
Dogs do, don't they?
I wonder if elephants do!!
<< Did you all know that hamsters still nurse when they are three
weeks old, this is in excess of their gestational time. >>
===
Humans nurse in excess of gestational time.
Dogs do, don't they?
I wonder if elephants do!!
MomtoLJ
I think according to Kathy D's research, larger mammals nurse at least 2
1/2 times the length of gestation while smaller mammals nurse less... It
just is funny to see these HUGE hamster babies nursing, and so many of them!
Joylyn
SandraDodd@... wrote:
1/2 times the length of gestation while smaller mammals nurse less... It
just is funny to see these HUGE hamster babies nursing, and so many of them!
Joylyn
SandraDodd@... wrote:
>[Non-text portions of this message have been removed]
> In a message dated 1/25/05 9:25:20 AM, joylyn1@... writes:
>
> << Did you all know that hamsters still nurse when they are three
> weeks old, this is in excess of their gestational time. >>
>
> ===
>
> Humans nurse in excess of gestational time.
> Dogs do, don't they?
>
> I wonder if elephants do!!
>
>
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>
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MomtoLJ
Hey everyone
Lexie now has email. Well, she had it before but it is now working on
her laptop! We have a long ethernet cable temporarily, we'll figure out
the wireless thing later. So, send Lexie an email, I 'm sure she'll
email you back! She has NO address on her laptop, so she'll need help
buffing up her address book. :-)
Lexie <flowerpowergirl@...>
Joylyn
MomtoLJ wrote:
No virus found in this outgoing message.
Checked by AVG Anti-Virus.
Version: 7.0.300 / Virus Database: 265.7.2 - Release Date: 1/21/2005
Lexie now has email. Well, she had it before but it is now working on
her laptop! We have a long ethernet cable temporarily, we'll figure out
the wireless thing later. So, send Lexie an email, I 'm sure she'll
email you back! She has NO address on her laptop, so she'll need help
buffing up her address book. :-)
Lexie <flowerpowergirl@...>
Joylyn
MomtoLJ wrote:
> Hi everyone!--
>
> Another week gone. Lexie has been in the cast for three weeks, and
> has three more weeks to go. I spoke with her doctor today and she's
> scheduled to go in on the 14th to have the cast removed. They will do
> it in the office, and he reminded me to bring her clothing. I'm
> pretty glad he reminded me, because I may have forgotten... she will
> have gone 6 weeks without wearing undies, clean or otherwise... Gotta
> find the humor. Lexie has her day planned out. She wants a bath, (a
> real one, these sponge baths just don't cut it!), and to go out to
> eat. The situation has made her appreciate the small things in life
> and that can only be good. She's happy that the appt will be on
> valentine's day, and I'm happy too, as it's President's day or some
> such thing, which means I'll have the day off. Our appt is for 10:00 am!
> She will still be wheelchair bound, or on crutches, for six more
> weeks. The wheel chair will be switched out, so she'll have a normal
> sized child's wheel chair or small adults, instead of this giant chair
> we have now! I am thinking the hospital bed will still be wise, just
> because the waterbed will likely not be a good idea, and the other bed
> is on the floor, without a frame.
> Lexie continues to be mostly in good spirits. I am amazed at her
> positive attitude, and willingness to do whatever it takes! She can
> get herself out of her wheel chair alone, with the help of her
> trapieze bar. She does many things alone, including taking care of a
> lot of her personal needs (as she can, she still needs some help.)
> She loves visitors, and they give her energy (she's my extrovert!) so
> keep the visits coming! She loves to go for walks and is competent
> with the wheel chair for a short time period, and confident enough
> that I have let her go for walks down the street with a friend. Girl
> Scouts and DI are coming to her, so that's helpful.
> She is selling girl scout cookies and we are thinking she might have a
> good year (another bit of humor). She went out last night to
> neighbors and she and Janene sold about 50 boxes.
> The hamster issue seems to have been solved too, as Catherine took
> them to a fund raising sale, and sold all of them...to be picked up
> Friday or Sunday! Did you all know that hamsters still nurse when
> they are three weeks old, this is in excess of their gestational
> time. It's amazing what we are learning about hamsters. I actually
> have a waiting list if someone renigs on a hamster.
> The dinners are still so appreciated, as are the visits. Today I was
> just so tired, when I came home. Lexie had a few boxes from friends
> to open (knitting stuff from Wendy, thanks! love the needles, arts and
> crafts and other things from Fran, and the whopper, a laptop computer
> from a bunch of wonderful friends from around the country and as far
> away as Australia! The computer is just amazing, and I'm still crying
> over this tremendous gift!) and I couldn't even think of eating when
> Lyla shows up with salad, just what I was craving, and protein filled
> chili casserole. The list of things to do are endless, so that was a
> big one (feeding my children, what could be bigger) crossed off--I
> could concentrate on the rest, and sit down and relax for a few
> moments. I have vowed strongly that I will make meals and take them
> to anyone in need always, forever. And even if I don't cook, I will
> bring meals because even the "bought" meals have come in handy (I ate
> Pollo Loco at work!). I don't know what happens to the evening, but
> it's already 10:30 and I've accomplished half of what I wanted/needed
> to do, and yet I know I haven't sat down or relaxed at all except for
> the 20 minute bath I took an hour ago. So the meals are so helpful.
> If they could continue, at least every other day, I would very much
> appreciate it.
> The transportation issue has been solved, as well as possible, with
> furniture ties and my van. Basically two seats have been removed, and
> Lexie goes in the van, and the ties serve as extra seatbelts, attached
> to the bars where the extra seats go. She also wears the regular
> seatbelt. It's better than nothing and with this she will be able to
> participate in the DI instant challenge day on Saturday, and go to
> park day, etc. It's very difficult to get her UP into the van (down
> is easier, I just push her out ;-)) it takes two strong bodies (my
> parents cannot help with this) but I figure everything will work out....
>
> The care issue is still an issue. I am still continuing to look for
> people/organizations who can help with this need. Three more
> weeks.... In a few months we'll look back on this and wonder why we
> were worried. As most of you know, I'm not hugely religious, but I am
> feeling as though it will all work out as it needs to work out,
> trusting that things will happen as they need to happen. So far that
> has happened. I work it on my end, calling and thinking and trying to
> find a solution and it will happen, the solution will come and all
> will be fine.
> My parents are doing a wonderful job, but it's tiring for them, and
> difficult. I'm not sure how much longer they can stay, but I
> appreciative of every minute, every day.
> I continue to be overwhelmed with the friends we have who have
> supported us through this time. We are indeed very rich people, in
> the best meaning of that word. Thank you everyone. I can never repay
> or say thank you enough, so I will simply vow to pass it on.
>
> Joylyn
>
> MomtoLJ wrote:
>
>> I think today is the 16th...
>>
>> Lexie is outside in her wheelchair, in clothing. This is a big deal.
>> No clothes fit over her cast, and a friend made her some wrap around
>> shorts that cover her as needed and are darn cute too! She has that and
>> her DI tshirt on, and is not in her hospital bed with a sheet over
>> her--what this must be doing to her mentality, just to be out of bed
>> outside with her friend playing.
>>
>> She has good spirits, loves to talk on the phone with folks that call,
>> and loves visitors, is eating better, especially at night, although we
>> are having issues with getting her vitamins down, she just doesn't like
>> the flavor so we will try smooshing them again today and mixing them
>> with maybe yogurt or pudding. She is pretty much pain free, except at
>> night a bit, and is getting really good at moving herself around,
>> getting to things on her table, and handling her personal needs (with
>> assistance, of course). Lexie is going to get through this because she
>> is so strong and brave.
>>
>> I told her that in the hospital and she forbid me to say it again. She
>> said "when you tell me I'm strong and brave I think this is some huge
>> and horrible situation I have to deal with and that it will be hard, but
>> if you just tell me you love me then I know it's just a normal situation
>> I can handle." Wisdom from my 9 year old. So I will just tell you all
>> that she's strong and brave and I will just tell her I love her. I did
>> find a way to crawl into bed with her to cuddle, something we have
>> missed dreadfully, and that has helped us both.
>>
>> I have a cold as does Janene, but I'm not surprised, between being
>> exposed to hospital germs and lack of sleep... I am catching up this
>> weekend.
>>
>> The things to over come still seem to be transportation and help with
>> home health care. My mom isn't going to be able to do this for another
>> four weeks, or longer (I will talk to the doctor on Monday about what
>> the situation is when her cast is removed, will she be able to sit up
>> and be in a regular car seat? I'm pretty sure she'll need to be pretty
>> much immobile for a while longer... If it's just a wheel chair and she's
>> sitting up then we may be able to return to our previous child care
>> situation before the injury...) I am calling agency after agency, each
>> of whom just tells me to call another agency... Most of those calls are
>> stopped for the long weekend, but I will resume on Tuesday. Kaiser is
>> open on Monday and I put a call in Friday night demanding that they help
>> with at least the transportation to the doctor and back as that is
>> medical necessary. I told them that if I put her unsafely in my car
>> after THEY told me it was unsafe, and there was an accident, I'm sure
>> that my car insurance would be quite interested in how a medical team
>> could allow a child to be transported unsafely... They tried to say the
>> trip home from the hospital (2nd hospital stay, I think some of you
>> don't know she had to go in again last week, Sunday-Tuesday--she got a
>> new hot pink cast out of it!) wasn't covered and I told them that about
>> my insurance and within an hour they had agreed to transport her home by
>> ambulance --the precedence has been set.
>>
>> Well, I need to go out to help her go on a walk... the wheel chair is
>> off center a bit because of her size, but it's the only one that will
>> fit her cast, so her friend can't take her without me there to help in
>> case there is a problem. Thanks again for all your healing thoughts and
>> prayers and help with meals (the meals are an incredible help, I never
>> understood that before, but I do now!) and all the other help people are
>> giving.
>>
>> Joylyn
>>
>> >
>>
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MomtoLJ
Hey everyone
A few people have asked me to post a general update, so...
Lexie got her cast off today. I have been warning her that she would
not go from a cast to playing soccer, and she understood that at some
level but I don't think she really did understand it. (I don't think I
did either.) She was scared and moving the hip for the first time
hurt. Using crutches was hard, but by this afternoon, when she took her
bath, it was easier. I think within a week she'll be more confident.
Her right knee is actually more painful at this point, because it's been
in one position as well. I can massage that, and that will help. Her
skin is terribly dry.
The doctor said no weight on that one leg (right) for a month and then
maybe, depending upon xrays at that point, we'll let her start walking
with a walker. She is getting a different wheel chair, her size, not
the adult wide one she has now, which was necessary to fit her cast.
She can sit up straight, and I can get her into the van without help, so
transportation will be easier. She can now use the crutches to get into
the bathroom and take a bath (she soaked for at least 20 minutes today
and would have stayed longer except she was extremely tired) and use the
bathroom. She should also be getting a walker, which the doctor says
she might find easier than crutches, especially for helping her get up
and sit down. I took the shower doors off the bathtub and that helped
get her out (I took them off while she was IN the tub, not something I
recommend but we didn't think about the need to take them off until we
saw her get in, and realized how much easier it would be for her to get
in and out if they were off).
The good news, at least tentatively, is that the bone in her hip doesn't
appear to be dying. We will still need to wait another six weeks, to
make sure this is the case, but the preliminary report looks good. The
bone is also obviously healing.
After getting her cast off, we went out to eat and then Lexie went to
barnes and noble to spend a gift card. She was able to buy four items
with the card, including a book on chocolate!
Thank you everyone for your prayers and healing light. We are getting
through this, thanks to friends and family like all of you.
Joylyn
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Checked by AVG Anti-Virus.
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A few people have asked me to post a general update, so...
Lexie got her cast off today. I have been warning her that she would
not go from a cast to playing soccer, and she understood that at some
level but I don't think she really did understand it. (I don't think I
did either.) She was scared and moving the hip for the first time
hurt. Using crutches was hard, but by this afternoon, when she took her
bath, it was easier. I think within a week she'll be more confident.
Her right knee is actually more painful at this point, because it's been
in one position as well. I can massage that, and that will help. Her
skin is terribly dry.
The doctor said no weight on that one leg (right) for a month and then
maybe, depending upon xrays at that point, we'll let her start walking
with a walker. She is getting a different wheel chair, her size, not
the adult wide one she has now, which was necessary to fit her cast.
She can sit up straight, and I can get her into the van without help, so
transportation will be easier. She can now use the crutches to get into
the bathroom and take a bath (she soaked for at least 20 minutes today
and would have stayed longer except she was extremely tired) and use the
bathroom. She should also be getting a walker, which the doctor says
she might find easier than crutches, especially for helping her get up
and sit down. I took the shower doors off the bathtub and that helped
get her out (I took them off while she was IN the tub, not something I
recommend but we didn't think about the need to take them off until we
saw her get in, and realized how much easier it would be for her to get
in and out if they were off).
The good news, at least tentatively, is that the bone in her hip doesn't
appear to be dying. We will still need to wait another six weeks, to
make sure this is the case, but the preliminary report looks good. The
bone is also obviously healing.
After getting her cast off, we went out to eat and then Lexie went to
barnes and noble to spend a gift card. She was able to buy four items
with the card, including a book on chocolate!
Thank you everyone for your prayers and healing light. We are getting
through this, thanks to friends and family like all of you.
Joylyn
>--
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cslkll
I just wanted to say that I can relate to what you
are going through. My 7yo dd was in a full body cast
from age 4mth to 7mth after having hip surgery. Your
posts brought back a flood of memories, including being
worried about necrosis! Hope your daughter continues to
heal well.krista
--- In [email protected], MomtoLJ <joylyn1@c...>
wrote:
are going through. My 7yo dd was in a full body cast
from age 4mth to 7mth after having hip surgery. Your
posts brought back a flood of memories, including being
worried about necrosis! Hope your daughter continues to
heal well.krista
--- In [email protected], MomtoLJ <joylyn1@c...>
wrote:
> Hey everyonedoesn't
> >
> The good news, at least tentatively, is that the bone in her hip
> appear to be dying. We will still need to wait another six weeks,to
> make sure this is the case, but the preliminary report looksgood. The
> bone is also obviously healing.getting
>
>
> Thank you everyone for your prayers and healing light. We are
> through this, thanks to friends and family like all of you.2/14/2005
> Joylyn
>
> >
>
>
> --
> No virus found in this outgoing message.
> Checked by AVG Anti-Virus.
> Version: 7.0.300 / Virus Database: 265.8.8 - Release Date:
Amy and Cory Nelson
Joylynn,
That's great news that the hip bone seems to be healing well! My son broke
his leg last year and was in a cast for about a month, but his healing
process wasn't as long as your daughter's. I remember, though, after his
cast was off and how wary we both were about using the leg again and
worrying about injuring it again. It made me a little nervous when he
continued walking around as if he had a cast on, but he did adjust quickly
to being cast-less.
Hopefully everything continues to go well! It sounds as if you've been quite
creative in helping her continue to adjust.
--
Amy
Mama to Accalia (6/14/99) and Cole (9/03/02)
"What we must decide is perhaps how we are valuable rather than how valuable
we are." --Edgar Z. Friedenberg
http://thissideofsomewhere.com/
That's great news that the hip bone seems to be healing well! My son broke
his leg last year and was in a cast for about a month, but his healing
process wasn't as long as your daughter's. I remember, though, after his
cast was off and how wary we both were about using the leg again and
worrying about injuring it again. It made me a little nervous when he
continued walking around as if he had a cast on, but he did adjust quickly
to being cast-less.
Hopefully everything continues to go well! It sounds as if you've been quite
creative in helping her continue to adjust.
--
Amy
Mama to Accalia (6/14/99) and Cole (9/03/02)
"What we must decide is perhaps how we are valuable rather than how valuable
we are." --Edgar Z. Friedenberg
http://thissideofsomewhere.com/
MomtoLJ
Why did your daughter have hip surgery? How is she now?
Joylyn
cslkll wrote:
Joylyn
cslkll wrote:
>[Non-text portions of this message have been removed]
> I just wanted to say that I can relate to what you
> are going through. My 7yo dd was in a full body cast
> from age 4mth to 7mth after having hip surgery. Your
> posts brought back a flood of memories, including being
> worried about necrosis! Hope your daughter continues to
> heal well.krista
>
> --- In [email protected], MomtoLJ <joylyn1@c...>
> wrote:
> > Hey everyone
> > >
> > The good news, at least tentatively, is that the bone in her hip
> doesn't
> > appear to be dying. We will still need to wait another six weeks,
> to
> > make sure this is the case, but the preliminary report looks
> good. The
> > bone is also obviously healing.
> >
>
> >
> > Thank you everyone for your prayers and healing light. We are
> getting
> > through this, thanks to friends and family like all of you.
> > Joylyn
> >
> > >
> >
> >
> > --
> > No virus found in this outgoing message.
> > Checked by AVG Anti-Virus.
> > Version: 7.0.300 / Virus Database: 265.8.8 - Release Date:
> 2/14/2005
>
>
>
>
>
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cslkll
She was born with a dislocated hip that was not discovered
until she was 3mths old. We went through infant traction
and a whole lotta other stuff. She is fine now, can run
and play without a problem. Your post hit me with memories
though, even of my dd having a look of fear for a while when
I went to hold her close. I just wanted you to know that someone
else has been there, and for us when we saw in the xrays that
the bones were starting to calcify instead of die...we were able
to breathe a little easier. Bodies are amazing healing machines,
and it was cool to see a malformed bone grow into something "normal".
healing thoughts to your daughter and you, krista
--- In [email protected], MomtoLJ <joylyn1@c...>
wrote:
until she was 3mths old. We went through infant traction
and a whole lotta other stuff. She is fine now, can run
and play without a problem. Your post hit me with memories
though, even of my dd having a look of fear for a while when
I went to hold her close. I just wanted you to know that someone
else has been there, and for us when we saw in the xrays that
the bones were starting to calcify instead of die...we were able
to breathe a little easier. Bodies are amazing healing machines,
and it was cool to see a malformed bone grow into something "normal".
healing thoughts to your daughter and you, krista
--- In [email protected], MomtoLJ <joylyn1@c...>
wrote:
><joylyn1@c...>
> Why did your daughter have hip surgery? How is she now?
>
> Joylyn
>
> cslkll wrote:
>
> >
> > I just wanted to say that I can relate to what you
> > are going through. My 7yo dd was in a full body cast
> > from age 4mth to 7mth after having hip surgery. Your
> > posts brought back a flood of memories, including being
> > worried about necrosis! Hope your daughter continues to
> > heal well.krista
> >
> > --- In [email protected], MomtoLJ
> > wrote:hip
> > > Hey everyone
> > > >
> > > The good news, at least tentatively, is that the bone in her
> > doesn'tweeks,
> > > appear to be dying. We will still need to wait another six
> > to
> > > make sure this is the case, but the preliminary report looks
> > good. The
> > > bone is also obviously healing.
> > >
> >
> > >
> > > Thank you everyone for your prayers and healing light. We are
> > getting
> > > through this, thanks to friends and family like all of you.
> > > Joylyn
>
MomtoLJ
wow... I'm so glad to hear she is fine now.
Thanks for sharing, I'll share this with Lexie. We found out today
about another child who stepped off a truck back and broke BOTH hips,
same location as Lexie. She is 20something now and is doing grand! She
had some issues with mobility but she never let it bother her. It's
good to hear these stories.
Joylyn
cslkll wrote:
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Checked by AVG Anti-Virus.
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[Non-text portions of this message have been removed]
Thanks for sharing, I'll share this with Lexie. We found out today
about another child who stepped off a truck back and broke BOTH hips,
same location as Lexie. She is 20something now and is doing grand! She
had some issues with mobility but she never let it bother her. It's
good to hear these stories.
Joylyn
cslkll wrote:
>----------
> She was born with a dislocated hip that was not discovered
> until she was 3mths old. We went through infant traction
> and a whole lotta other stuff. She is fine now, can run
> and play without a problem. Your post hit me with memories
> though, even of my dd having a look of fear for a while when
> I went to hold her close. I just wanted you to know that someone
> else has been there, and for us when we saw in the xrays that
> the bones were starting to calcify instead of die...we were able
> to breathe a little easier. Bodies are amazing healing machines,
> and it was cool to see a malformed bone grow into something "normal".
> healing thoughts to your daughter and you, krista
>
> --- In [email protected], MomtoLJ <joylyn1@c...>
> wrote:
> >
> > Why did your daughter have hip surgery? How is she now?
> >
> > Joylyn
> >
> > cslkll wrote:
> >
> > >
> > > I just wanted to say that I can relate to what you
> > > are going through. My 7yo dd was in a full body cast
> > > from age 4mth to 7mth after having hip surgery. Your
> > > posts brought back a flood of memories, including being
> > > worried about necrosis! Hope your daughter continues to
> > > heal well.krista
> > >
> > > --- In [email protected], MomtoLJ
> <joylyn1@c...>
> > > wrote:
> > > > Hey everyone
> > > > >
> > > > The good news, at least tentatively, is that the bone in her
> hip
> > > doesn't
> > > > appear to be dying. We will still need to wait another six
> weeks,
> > > to
> > > > make sure this is the case, but the preliminary report looks
> > > good. The
> > > > bone is also obviously healing.
> > > >
> > >
> > > >
> > > > Thank you everyone for your prayers and healing light. We are
> > > getting
> > > > through this, thanks to friends and family like all of you.
> > > > Joylyn
> >
>
>
>
>
>
> "List Posting Policies" are provided in the files area of this group.
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[Non-text portions of this message have been removed]
MomtoLJ
A couple people have asked me for an update, so here is one...
Lexie is doing fairly well. Her cast has been off for over three weeks,
and she's getting around pretty good on one leg. She will not use the
crutches at all, will only use the walker and wheel chair. However,
she's pretty good at those things. She is back in charge of her own
personal bodily needs, which is a big deal to all of us. She is eating
better, as she is moving around more. She is very good at doing her
exercises for PT, and her range of motion is really improving. She can
get up and down steps, her PT person said it was a bit unorthodox and
sorta weird, but very safe and if the method made Lexie comfortable then
it was OK. She basically sits down and goes down the steps until she is
near the bottom then stands up and uses her walker. I liked the
unorthodox and weird comment, because basically that is Lexie in a
nutshell--weird and unorthodox. She is back to doing chores, which she
enjoyed the first day or two but then didn't like it. She can make her
own pancakes, do the dishes, and help clean up a bit. She complains
that sometimes that I treat her too much like she can walk and run, but
I like that complaint better than the one that I treat her like she can
do nothing. The other day she made me pancakes and using the wheel
chair delivered me another one (I was lying in her bed so she delivered
me breakfast in bed) on the spatula. I thought it was pretty good that
she could steer the wheel chair with a pancake on a spatula through the
kitchen into the livingroom. :-)
Next week we will get another xray, and will know more about the bone.
We will also know if she can put weight on the leg. At first it will be
only a small amount of weight, but the PT person feels she'll be running
around playing soccer in September.
I think one of the most amazing things about this whole thing is the
education that has come as a result of it all, not just for us, for
Lexie, Janene and myself, but for everyone who has come in contact with
Lexie. The other night she had a sleep over with three friends, and I
came out to find one girl in bed with Lexie (better to see the
computer), the other one standing over them from behind the bed, and the
third in the wheelchair next to the bed looking on. I've watched her
friends help her get in and out of bed, use the restroom, get up and
down the stairs. Her neighborhood friend was very worried at first, but
now is an old pro with Lexie. Lexie goes over to Dana's house with Dana
helping, carrying the walker. Dana can help get Lexie into her own
house as well as Lexie's house. Lexie has cared for babies in her wheel
chair and in her hospital bed. It's been an amazing thing to witness,
and I know I'm not giving the situation justice with my words.
Well, that's it for tonight, I must get ready for school tomorrow.
Thank you again, everyone, for all you do.
Joylyn
Lexie is doing fairly well. Her cast has been off for over three weeks,
and she's getting around pretty good on one leg. She will not use the
crutches at all, will only use the walker and wheel chair. However,
she's pretty good at those things. She is back in charge of her own
personal bodily needs, which is a big deal to all of us. She is eating
better, as she is moving around more. She is very good at doing her
exercises for PT, and her range of motion is really improving. She can
get up and down steps, her PT person said it was a bit unorthodox and
sorta weird, but very safe and if the method made Lexie comfortable then
it was OK. She basically sits down and goes down the steps until she is
near the bottom then stands up and uses her walker. I liked the
unorthodox and weird comment, because basically that is Lexie in a
nutshell--weird and unorthodox. She is back to doing chores, which she
enjoyed the first day or two but then didn't like it. She can make her
own pancakes, do the dishes, and help clean up a bit. She complains
that sometimes that I treat her too much like she can walk and run, but
I like that complaint better than the one that I treat her like she can
do nothing. The other day she made me pancakes and using the wheel
chair delivered me another one (I was lying in her bed so she delivered
me breakfast in bed) on the spatula. I thought it was pretty good that
she could steer the wheel chair with a pancake on a spatula through the
kitchen into the livingroom. :-)
Next week we will get another xray, and will know more about the bone.
We will also know if she can put weight on the leg. At first it will be
only a small amount of weight, but the PT person feels she'll be running
around playing soccer in September.
I think one of the most amazing things about this whole thing is the
education that has come as a result of it all, not just for us, for
Lexie, Janene and myself, but for everyone who has come in contact with
Lexie. The other night she had a sleep over with three friends, and I
came out to find one girl in bed with Lexie (better to see the
computer), the other one standing over them from behind the bed, and the
third in the wheelchair next to the bed looking on. I've watched her
friends help her get in and out of bed, use the restroom, get up and
down the stairs. Her neighborhood friend was very worried at first, but
now is an old pro with Lexie. Lexie goes over to Dana's house with Dana
helping, carrying the walker. Dana can help get Lexie into her own
house as well as Lexie's house. Lexie has cared for babies in her wheel
chair and in her hospital bed. It's been an amazing thing to witness,
and I know I'm not giving the situation justice with my words.
Well, that's it for tonight, I must get ready for school tomorrow.
Thank you again, everyone, for all you do.
Joylyn
MomtoLJ
Hello everyone
Lexie went to the doctor today and had an xray. The good news is... the
bone continues to heal well. There seems to be no problem with the
bone, it does not appear to be dying. There is still a chance this
might happen, but with each week it doesn't happen, the chance gets
slimmer and slimmer. The fact there is still good obvious blood flow to
the bone and that there is no white on the xray (indicating calcium
build up) and that the bone definition is solid (ie, it's a clear curve
around the top, and around where the break occured) gives us great
hope. The doctor said that he couldn't even find the break line, it has
healed so well. Two xrays were taken and we both looked, but couldn't
find the line, which indicates that the bone is healing very well. The
pins are HUGE , though. They will come out in about a year. Lexie has
permission to begin putting a bit of weight on the leg. We had
discussed weeks ago they'd begin really slowly, but it seems that she
has healed so well, we are moving a bit faster. She can put about 50%
of her weight on her leg for about two weeks, using the walker. After
that, she can move to walking slowly, without the walker. She is not
allowed to run, jump, skip, or move any faster than a slow walk without
the walker until he sees her in a month and does another xray. We have
an order for water therapy, but now we have to find a place and get
Kaiser to pay for it.
Ten years ago today I was in labor with Lexie. In retrospect, I handled
her birth wrong, and after two and a half days of labor, Lexie was born
by c-section. I don't think I will ever have the chance to have a
vaginal birth, or another child, and I do and will always miss not being
able to give birth vaginally, but now, ten years later, I don't care. I
have a beautiful and wonderful child who is growing into a wonderful
young lady. She stuck with DI throughout the last ten weeks, when she
very well could have quit and no one would have thought badly of that
choice. But she never even considered quitting. She participated in a
DI creativity day while she was in a body cast, and then returned four
weeks later to participate in the tournament in a wheel chair, unable to
even put that foot on the floor. Her team was just as wonderful, no one
suggested they go on without Lexie, but instead they personified what
Destination Imagination stands for and remained a team through what was
not an easy time for any of of them. Even though they did not win an
award, they are all winners, and I am trying to figure out how to
recognize them as such. They not only accepted Lexie in a wheel chair
but they used the wheel chair as a side trip to their challenge! Lexie
is very lucky to be a part of a true team, The Tiny Tigers.
Lexie has also done so well in her recovery. Yes, there has been low
moments, and low days. She has cried, and become angry with her
situation. But for the most part she has been a remarkable young lady
who has taken a difficult time and done the best with it. She has
always done her excersizes to the best of her ability, and the result is
good healing and now the ability to begin walking again. She has
followed the rules of no weight on one leg to the point of almost
obsessiveness, knowing that following those rules was the best way to
get an optomal outcome. Now she is stepping carefully into the next
part of her recovery, with both feet and both legs. I have never been
prouder of my daughter.
I know this is about Lexie but I have to take a minute and talk about
Janene. She has also been pretty amazing. She has helped her sister,
almost always when asked just once, as well as she could. This six year
old even learned to help Lexie use the bathroom using a bedpan, so that
I could stay in the bath a few minutes longer (this was without my
knowledge, I only figured it out when Janene came into the bathroom to
empty the bedpan!) She has been encouraging and only once or twice
hijacked her sister's walker or wheelchair or hospital bed for her own
use. She has brought Lexie water and liquid, books, computer, played
games with her sister, and handled the last few months, when our family
has been in so much stress, amazingly well. I am proud and lucky she is
my daughter.
We have also learned how "handicapped accessable" means pretty much
nothing in many cases. I will never look at a handicap stall in the
same way again, nor will I do any small thing, from shopping to using
the restroom in a public place, without looking upon a person in a
wheelchair with new respect.
As a family of three, without Mark, we have formed a bond with each
other, and have learned how strong we can be. I am very sorry that we
have had to go through all of this, from Lexie's accident, to Mark's
leaving, to Addy (our dog's) tragic and horrible death, but we have come
through stronger in so many ways.
One of the most important ways is the confirmation of our friends and
family. It was an amazing process to see just how many friends we have.
Thank you all for all of your help. This journey toward Lexie's
complete recovery is not over yet, but the worst is over, and it is
thanks to all of you that we made it through that worst. I don't think
I could have made it without your support and help. I wish I could
write individual, personalized notes to each and every one of you, and
maybe one day I will be able to do that, but for now please know I thank
you in my heart each night. Every bit of the support was appreciated,
from the physical support of meals and help with errands and help with
Janene, to the emotional support of private conversations and public
emails, to the private support of precious prayers and healing and
calming thoughts and candles lit in our names. All of it has been
noticed and appreciated. Thank you.
And I do know now that Lexie will completely recover. That is a
certainty in my head as much as I am certain the sun will rise tomorrow
and that my little girl will be ten on Wednesday at 12:25 pm. Ten years
old, two numbers, an entire decade. Amazing, I look at her and am
amazed that I created this life inside my body and now I have such
little control over it, as she grows to womanhood, that is as it should
be. Lexie will be an amazing woman--look out world, here she comes!
I am crying now, and so I will say thank you again. I'll send another
update next month, when we hope to get further good news, and maybe the
posibility of a bit more activity.
Thank you
Joylyn
Lexie went to the doctor today and had an xray. The good news is... the
bone continues to heal well. There seems to be no problem with the
bone, it does not appear to be dying. There is still a chance this
might happen, but with each week it doesn't happen, the chance gets
slimmer and slimmer. The fact there is still good obvious blood flow to
the bone and that there is no white on the xray (indicating calcium
build up) and that the bone definition is solid (ie, it's a clear curve
around the top, and around where the break occured) gives us great
hope. The doctor said that he couldn't even find the break line, it has
healed so well. Two xrays were taken and we both looked, but couldn't
find the line, which indicates that the bone is healing very well. The
pins are HUGE , though. They will come out in about a year. Lexie has
permission to begin putting a bit of weight on the leg. We had
discussed weeks ago they'd begin really slowly, but it seems that she
has healed so well, we are moving a bit faster. She can put about 50%
of her weight on her leg for about two weeks, using the walker. After
that, she can move to walking slowly, without the walker. She is not
allowed to run, jump, skip, or move any faster than a slow walk without
the walker until he sees her in a month and does another xray. We have
an order for water therapy, but now we have to find a place and get
Kaiser to pay for it.
Ten years ago today I was in labor with Lexie. In retrospect, I handled
her birth wrong, and after two and a half days of labor, Lexie was born
by c-section. I don't think I will ever have the chance to have a
vaginal birth, or another child, and I do and will always miss not being
able to give birth vaginally, but now, ten years later, I don't care. I
have a beautiful and wonderful child who is growing into a wonderful
young lady. She stuck with DI throughout the last ten weeks, when she
very well could have quit and no one would have thought badly of that
choice. But she never even considered quitting. She participated in a
DI creativity day while she was in a body cast, and then returned four
weeks later to participate in the tournament in a wheel chair, unable to
even put that foot on the floor. Her team was just as wonderful, no one
suggested they go on without Lexie, but instead they personified what
Destination Imagination stands for and remained a team through what was
not an easy time for any of of them. Even though they did not win an
award, they are all winners, and I am trying to figure out how to
recognize them as such. They not only accepted Lexie in a wheel chair
but they used the wheel chair as a side trip to their challenge! Lexie
is very lucky to be a part of a true team, The Tiny Tigers.
Lexie has also done so well in her recovery. Yes, there has been low
moments, and low days. She has cried, and become angry with her
situation. But for the most part she has been a remarkable young lady
who has taken a difficult time and done the best with it. She has
always done her excersizes to the best of her ability, and the result is
good healing and now the ability to begin walking again. She has
followed the rules of no weight on one leg to the point of almost
obsessiveness, knowing that following those rules was the best way to
get an optomal outcome. Now she is stepping carefully into the next
part of her recovery, with both feet and both legs. I have never been
prouder of my daughter.
I know this is about Lexie but I have to take a minute and talk about
Janene. She has also been pretty amazing. She has helped her sister,
almost always when asked just once, as well as she could. This six year
old even learned to help Lexie use the bathroom using a bedpan, so that
I could stay in the bath a few minutes longer (this was without my
knowledge, I only figured it out when Janene came into the bathroom to
empty the bedpan!) She has been encouraging and only once or twice
hijacked her sister's walker or wheelchair or hospital bed for her own
use. She has brought Lexie water and liquid, books, computer, played
games with her sister, and handled the last few months, when our family
has been in so much stress, amazingly well. I am proud and lucky she is
my daughter.
We have also learned how "handicapped accessable" means pretty much
nothing in many cases. I will never look at a handicap stall in the
same way again, nor will I do any small thing, from shopping to using
the restroom in a public place, without looking upon a person in a
wheelchair with new respect.
As a family of three, without Mark, we have formed a bond with each
other, and have learned how strong we can be. I am very sorry that we
have had to go through all of this, from Lexie's accident, to Mark's
leaving, to Addy (our dog's) tragic and horrible death, but we have come
through stronger in so many ways.
One of the most important ways is the confirmation of our friends and
family. It was an amazing process to see just how many friends we have.
Thank you all for all of your help. This journey toward Lexie's
complete recovery is not over yet, but the worst is over, and it is
thanks to all of you that we made it through that worst. I don't think
I could have made it without your support and help. I wish I could
write individual, personalized notes to each and every one of you, and
maybe one day I will be able to do that, but for now please know I thank
you in my heart each night. Every bit of the support was appreciated,
from the physical support of meals and help with errands and help with
Janene, to the emotional support of private conversations and public
emails, to the private support of precious prayers and healing and
calming thoughts and candles lit in our names. All of it has been
noticed and appreciated. Thank you.
And I do know now that Lexie will completely recover. That is a
certainty in my head as much as I am certain the sun will rise tomorrow
and that my little girl will be ten on Wednesday at 12:25 pm. Ten years
old, two numbers, an entire decade. Amazing, I look at her and am
amazed that I created this life inside my body and now I have such
little control over it, as she grows to womanhood, that is as it should
be. Lexie will be an amazing woman--look out world, here she comes!
I am crying now, and so I will say thank you again. I'll send another
update next month, when we hope to get further good news, and maybe the
posibility of a bit more activity.
Thank you
Joylyn
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