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Hi my name is Donna. I want to start the diet today but as of yet have not

been able to find the book. A friend has one but forgot to bring it to me

last night..... so today I will travel to look in book stores. I am anxious

to get started!

susan birney wrote:

>

>

> Reny have you gottn a pocket size Dr A carb counter you can pick them

> up at borders for around 5 dollars or on www.amazon.com. :)Sue

>

> --- Reny Wall wrote:

> >

> >

> > HI! My name is Reny. I began Atkins on June 1.

> > Altho I gave it my best shot without a carb

> > book, my first week was filled with errors and I

> > went in and out of ketosis. The second and third

> > weeks I lost 17 lbs total. At the end of my third

> > week, I marinated some chicken breasts, and took

> > them to work for lunch. I was suddenly out of

> > ketosis for 4 days, and realized it was, of all

> > things, the chicken! (because of the marinade.)

> > Well, mistakes are for learning. I am back in

> > ketosis tonight.

> > I am really excited to have so much support and

> > encouragement available on-line! Thanks!

> >

> > ---------------------------

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Reny have you gottn a pocket size Dr A carb counter you can pick them

up at borders for around 5 dollars or on www.amazon.com. :)Sue

--- Reny Wall wrote:

>

>

> HI! My name is Reny. I began Atkins on June 1.

> Altho I gave it my best shot without a carb

> book, my first week was filled with errors and I

> went in and out of ketosis. The second and third

> weeks I lost 17 lbs total. At the end of my third

> week, I marinated some chicken breasts, and took

> them to work for lunch. I was suddenly out of

> ketosis for 4 days, and realized it was, of all

> things, the chicken! (because of the marinade.)

> Well, mistakes are for learning. I am back in

> ketosis tonight.

> I am really excited to have so much support and

> encouragement available on-line! Thanks!

>

> ---------------------------

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I would really appreciate that! Thanks

susan birney wrote:

>

>

> Donna I can send you the first two weeks worth of things you can eat

> with the rules of Induction as it is called if you want it,so you dont

> have to rush out.:)Sue

> --- Donka wrote:

> >

> >

> > Hi my name is Donna. I want to start the diet today

> > but as of yet have not

> > been able to find the book. A friend has one but

> > forgot to bring it to me

> > last night..... so today I will travel to look in

> > book stores. I am anxious

> > to get started!

> >

> > susan birney wrote:

> >

> > >

> > >

> > > Reny have you gottn a pocket size Dr A carb

> > counter you can pick them

> > > up at borders for around 5 dollars or on

> > www.amazon.com. :)Sue

> > >

> > > --- Reny Wall wrote:

> > > >

> > > >

> > > > HI! My name is Reny. I began Atkins on June

> > 1.

> > > > Altho I gave it my best shot without a carb

> > > > book, my first week was filled with errors and I

> > > > went in and out of ketosis. The second and third

> > > > weeks I lost 17 lbs total. At the end of my

> > third

> > > > week, I marinated some chicken breasts, and took

> > > > them to work for lunch. I was suddenly out of

> > > > ketosis for 4 days, and realized it was, of all

> > > > things, the chicken! (because of the marinade.)

> > > > Well, mistakes are for learning. I am back in

> > > > ketosis tonight.

> > > > I am really excited to have so much support

> > and

> > > > encouragement available on-line! Thanks!

> > > >

> > > > ---------------------------

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Donna I can send you the first two weeks worth of things you can eat

with the rules of Induction as it is called if you want it,so you dont

have to rush out.:)Sue

--- Donka wrote:

>

>

> Hi my name is Donna. I want to start the diet today

> but as of yet have not

> been able to find the book. A friend has one but

> forgot to bring it to me

> last night..... so today I will travel to look in

> book stores. I am anxious

> to get started!

>

> susan birney wrote:

>

> >

> >

> > Reny have you gottn a pocket size Dr A carb

> counter you can pick them

> > up at borders for around 5 dollars or on

> www.amazon.com. :)Sue

> >

> > --- Reny Wall wrote:

> > >

> > >

> > > HI! My name is Reny. I began Atkins on June

> 1.

> > > Altho I gave it my best shot without a carb

> > > book, my first week was filled with errors and I

> > > went in and out of ketosis. The second and third

> > > weeks I lost 17 lbs total. At the end of my

> third

> > > week, I marinated some chicken breasts, and took

> > > them to work for lunch. I was suddenly out of

> > > ketosis for 4 days, and realized it was, of all

> > > things, the chicken! (because of the marinade.)

> > > Well, mistakes are for learning. I am back in

> > > ketosis tonight.

> > > I am really excited to have so much support

> and

> > > encouragement available on-line! Thanks!

> > >

> > > ---------------------------

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Guest guest

I have a few questions

what can I put in my tea? sugar substitute? cream?

can I use salad dressings?

vegetables are limited?

susan birney wrote:

>

>

> Donna I can send you the first two weeks worth of things you can eat

> with the rules of Induction as it is called if you want it,so you dont

> have to rush out.:)Sue

> --- Donka wrote:

> >

> >

> > Hi my name is Donna. I want to start the diet today

> > but as of yet have not

> > been able to find the book. A friend has one but

> > forgot to bring it to me

> > last night..... so today I will travel to look in

> > book stores. I am anxious

> > to get started!

> >

> > susan birney wrote:

> >

> > >

> > >

> > > Reny have you gottn a pocket size Dr A carb

> > counter you can pick them

> > > up at borders for around 5 dollars or on

> > www.amazon.com. :)Sue

> > >

> > > --- Reny Wall wrote:

> > > >

> > > >

> > > > HI! My name is Reny. I began Atkins on June

> > 1.

> > > > Altho I gave it my best shot without a carb

> > > > book, my first week was filled with errors and I

> > > > went in and out of ketosis. The second and third

> > > > weeks I lost 17 lbs total. At the end of my

> > third

> > > > week, I marinated some chicken breasts, and took

> > > > them to work for lunch. I was suddenly out of

> > > > ketosis for 4 days, and realized it was, of all

> > > > things, the chicken! (because of the marinade.)

> > > > Well, mistakes are for learning. I am back in

> > > > ketosis tonight.

> > > > I am really excited to have so much support

> > and

> > > > encouragement available on-line! Thanks!

> > > >

> > > > ---------------------------

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Guest guest

Hi ,

Welcome to our group! I think you should definitely get the genetic testing

for CF and should test your kids also. To me its much worse not knowing, so

if they DID have CF you'd know and they could get proper treatment.

I am assuming you have no digestive problems? My daughter w/CF is 15

and while shes had a little mild lung involvement and asthma her problems

are also mostly sinus related. She is going to have her 11th sinus surgery

this summer. She does also need pancreatic enzymes but her digestive

problems aren't too severe and shes a normal weight and height.

I also have had sinus problems and I was tested for CF about 10 years ago

even though I am no where near underweight! (I wish!). As I expected the

sweat test was negative. We are considering having the genetic test on all

of us, but we are waiting on that as my daughter's genetic test showed only

1 copy of a known CF mutation. I also have a son, Nick, who is 17 without

CF.

Anyway, great to have you with us! BTW guys, I will be 39 also on Sunday

(yes I know, that is July 4th!!).

love,

>From: tswadkins@...

>

>Hello! I'm a new member of this group and learning slowing about CF. I

have a strange history and wanted some info about what I need to ask/do

first when I see the pulm. next week.

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Dear ,

First welcome to the list. I hope it is helpful to you.

Second, regarding your questions about further testing of yourself and

your children. The genetic test is a simple thing; just a quick blood

draw. No biggie. I would defintely do it. If you carry a known

mutation you can be certain that you have cf very easily, and the number

of mutations they can identify increases all of the time.

If you do have cf, then you will be better able to care for yourself.

Ane good care is important in maintaining long term good health. The

sinuses you mentioned are a perfect example.

Chronic sinus problems, and the polyps you experienced, are quite common

with cf. (You've probably heard that by now.) But, if your ENT knew

you had cf he/she would be very agressive in treating it, wanting to

ensure that the infection did not spread to other parts of your

respiratory system. The doctor would not take a " wait and see attitude "

regarding such infections, because of the potential risk to your health.

You may also find that there are other areas of your health history

which suddenly will be explained by such a diagnosis. My own daughter

was not diagnosed until age 6, which while not as long as your case, was

still a long time. But the diagnosis made so many odd things come

together for us. Also, she had sinus surgery about six months after

diagnosis, where she had been experiencing chronically plugged sinuses

for a very long time before that. The diagnosis put an urgency into the

situation that the cf specialist doctors felt must be handled

immediately. Prior to the diagnosis her regular pediatrician just

ignored her sinus problems, saying it was a cold and/or allergies, and

would go away.

Good luck to you and let us know how you are doing.

(mother of , 10 wcf, and , 2 nocf)

swadkins@... wrote:

>

> From: tswadkins@...

>

> Hello! I'm a new member of this group and learning slowing about CF. I have

a strange history and wanted some info about what I need to ask/do first when I

see the pulm. next week.

>

>

>

> I've read a lot about the genetic testing. Should I also request this? Also,

should I request testing of my children for CF and also to see if they are

carriers? Currently they are healthy (8 year old dtr, 3 year old son).

>

> I'd love to hear from anyone to know what next step I need to take. Thanks

for reading this long post and all the support I receive from the list!

>

>

> tswadkins@...

>

> ---------------------------

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<< Second, regarding your questions about further testing of yourself and

your children. The genetic test is a simple thing; just a quick blood

draw. No biggie. I would defintely do it. If you carry a known

mutation you can be certain that you have cf very easily, and the number

of mutations they can identify increases all of the time. >>

Hi everyone,

I would also add that the Genzyme 70 allele test can be done by buccal cell

(just a swipe of cheek cells) which is really no biggie..... Also, someone

on cystic-l recently said that you can order a home kit (kind of like a home

pregnancy kit, only easier....no pee involved, lol) for the 70 allele test

directly from genzyme and then mail the buccal cells into them. I do not

know if this really is true, but that was in a post about a month ago. Do be

sure that you get the 70 allele test, though, no matter what else you do, as

many local hospitals only test for a few common mutations such as deltaf508.

One would suspect that you likely have at least one copy of one of the milder

and rarer mutations because of your absence of many symptome commmon to CF;

therefore, the 70 allele test sounds like your best bet.

Take care and sorry, I have no time to write, baby waiting to be fed at this

3:37 a.m.....

Jennie, mom of too many to list right now....

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side effects are normal when going into ketosis they pass.

--- dnottingham@... wrote:

> From: dnottingham@...

>

> Hi, I am thinking about trying a low-carb diet. have

> actually almost cut carbs out the last two days and

> am experiencing stomach cramps and dizziness. Is

> this normal? I am not on any particular plan, just

> trying it out. I would like to lose 15 pounds.

> -Diane

>

> ---------------------------

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RENEE,

Hi, Welcome to the list!!! There are a great bunch of people here, and

you'll find lots of support, and answers to lots of questions you might have

:-) My daughter wcf is four years old (Meagan), and she was just diagnosed

a few months ago. She's doing great :-) Meagan's pancreatic sufficient so

she doesn't take enzymes, and so far we've mostly been dealing with her

asthma. All that changed when we found out she had CF was that we do the

TheraPEP valve when she's sick now, and we do sputum cultures twice a year,

and chest X-rays once a year. She was already using the nebulizer, inhaled

steriods, and lots of other meds for asthma, so that's not any different

now. We live in WI, and Meagan has a 6-year-old sister who doesn't have cf

(just a carrier).

Again, welcome!!!

, mom of Meagan 4 (cf, asthma), Kailin 6 (asthma)

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  • 3 weeks later...
Guest guest

In a message dated 7/30/99 11:08:39 AM Central Daylight Time,

jiffy@... writes:

<< Jen- I know exactly what you mean about the chest thing! I keep hoping

I'm going to lose there- I'm at 166 and wear a 38DDD!!! I Hate it! I

wear a size 12 pant so it's not real proportional. I really dont know

what kind of weight goal to being going for because theres so much

weight in my chest that its hard to figure it out. I told someone once

that I weighed 175 and they did not believe me! They werent just saying

this to be nice, she really didnt believe me. I think my chest add's

about 12 pound on! REALLY! Anyway- hopefully i'm losing there! So you

may have the same situation as me. WE CAN DO IT! I KNOW IT!!!

Mol >>

I am not that big but might as well be I am only one D less than you. Gosh, I

hope no weirdos are reading this!!!!!!!!!!!!!!!!!!

Beware!!!!!!!!!!!!!!!!!!!!!!!!!!! I never loose it there. Some people think

its great, but sometimes it's a curse because like other people who have hard

time finding things that fit, it's a real pain when you try to find shirts

that fit too!!!

Jen

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Ok.. all you men out there... close your eyes.. ha ha

Jen- I know exactly what you mean about the chest thing! I keep hoping

I'm going to lose there- I'm at 166 and wear a 38DDD!!! I Hate it! I

wear a size 12 pant so it's not real proportional. I really dont know

what kind of weight goal to being going for because theres so much

weight in my chest that its hard to figure it out. I told someone once

that I weighed 175 and they did not believe me! They werent just saying

this to be nice, she really didnt believe me. I think my chest add's

about 12 pound on! REALLY! Anyway- hopefully i'm losing there! So you

may have the same situation as me. WE CAN DO IT! I KNOW IT!!!

Mol

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Jen-

I hope there arent any weirdos either!!!!!!!!!!!! ha ha

I know exactly what you mean. There are so many cool shirts and not to

mention bathing suits that are impossible for me to wear because of it.

I have to tell you- searching for bathing suits is always a nightmare -

but this summer I stopped into Kmart (after shopping all the major dept.

stores and trying on $80 suits) and found 2 adorable suits from the

Kathy Ireland collection... who would of thought!!!! They even fit in

the chest!!!!!!!! I'm bummed I didnt buy 2 of each so I have them next

year - just in case I dont end up losing much more!

Mol

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BTW, I never loose my bust (I

wish I did though) but I loose the big shoulders and arms though!

Jen

I have lost inches every where but my big upper arms. My arms are what

makes it so hard for me to buy clothes that fit. I really have a hard time

finding a dress or shirt that isn't too tight in the arms. I am working

out with weights hoping one day I will lose some inches on my upper arms

and I will have some muscle to show.

Lyndia

Alabama

Atkins Way of Life since 6/14/99

" Only cat lovers know the luxury of fur coated, musical hot water bottles

that never go cold "

meet my family at http://www.geocities.com/Heartland/Park/8396/

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I wish I could soo the digits starting with 1 I am so stuck and yes I

too have cheated. and i am stuck near 268 cant break that 2 lb lost

gain

--- Talon28@... wrote:

> From: Talon28@...

>

> In a message dated 7/30/99 7:58:30 AM Central

> Daylight Time,

> jiffy@... writes:

>

> << Way to Go!!!!!!! I'm at 166 right now.. I keep

> tetering back and forth

> from 163 to 166 - I cant get it to stay down!!! I

> think alot of it is

> water retention.. maybe I'm drinking too much!! ha

> ha

> Anyway- Keep up the good work, and give yourself a

> big pat on the back! >>

> Good job ladies!! I have not weighed myself so

> instead I have been looking

> at myself and was able to wear a short summer

> sweater for the first time and

> didn't feel like my shoulders and chest were too big

> to wear it, plus hips

> sticking out. I am very happy so I know I am making

> progress without

> weighing in. I also noticed that Istart out in

> moderate ketosis but by the

> time I go to bed it is trace or small. Must be the

> liquids I am consuming or

> something. Doesn't matter, I am HAPPY!!!!! BTW, I

> never loose my bust (I

> wish I did though) but I loose the big shoulders and

> arms though!

> Jen

>

> ---------------------------

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  • 2 months later...
  • 1 month later...

Michele, Just wanted to welcome you to cfparents. This group is probably

just what you need. It's fun, and loving, and sarcastic, and caring. It's

like a big family. When our daughter-who is 6 now was diagnosed at 18 mo.

we had never even heard of CF before, and NO ONE we knew, or know now, has

it, so this list is like a life support for my family:) Hope you enjoy it

as much as we have.

Again, welcome,

----------

>

> To: cfparentsonelist

> Subject: New member

> Date: Monday, November 15, 1999 10:24 AM

>

>

>

> Hello everyone, I am a mother of three children. A 4

> yr old 3 yr old and 1yr old. The one year old has CF.

> We recently moved to Cincinnati Ohio to bring our

> son(the one with CF )to the children's hospital here.

> We are looking for other parents to get to know who

> are dealing with CF and related family issues. We do

> not have family in the area, so we are hoping to meet

> people here in Ohio. I am excited to reach a support

> network. It has been a long first year for us, and we

> have a lot to learn!!! I'm interested in getting

> involved! Michele

>

>

> =====

>

> > This is a secular list.

>

> The opinions and information exchanged on this list should in no way be

construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING

ANY MEDICATIONS OR TREATMENTS.

>

> ----------------------------------------

>

> If you know someone who would find cfparents useful, have them follow

this link: http://www.onelist.com/subscribe/cfparents

>

> ----------------------------------------

>

> Come chat at our webpage! http://members.tripod.com/cfparents/

>

> ----------------------------------------

>

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  • 2 months later...

Welcome and Jasper

You've come to the right place for friendship and support. How old is

Jasper now? We found out was RSS at around 5 mos. Lots don't find

out till much later. doesn't have the eating problems so often

associated with RSS he just isn't growing. Low muscle tone, small size,

small chin, low set ears, hypospadias, crooked fifth finger and lapping

toes, those cute little dimples at his shoulders and the sweetest boy in the

world in my motherly opinion.

Danna mom to Carol 12, 10, and 3 3/4 RSS

new member

> From: hamiwers@...

>

> Hi everyone.

> I've just joined the list and spent some time scanning through the recent

> archives. The info has been useful but I find the experiences of other

RSS

> parents to be the most enlightening. My 11mo son Jasper was just diagnosed

with

> RSS a week ago and until the week before xmas when we saw a pdendo, I had

never

> heard of RSS. He was born full term at 18.5 " and 4lbs 10oz. He grew very

well

> until about 5.5mos at which point he seemed to stall at 15.5lb and 25.5 " .

> He is now 16.5lb and 27 " . I nursed exclusively until 6mos and this is

still

> his strongly preferred source of nourishment though he recently has

started to eat more jar food and cheerios. We will probably go to a second

geneticist (is

> there a list of relevant abbreviations somewhere so I don't have to spell

> everything out?) to confirm the diagnosis and since we are in the NY area,

we

> might consider seeing Dr. Harbison. In addition to IUGR, Jasper has cafe

au

> lait spots and size asymmetry in his legs. The only other obvious RSS

> characteristic is a small chin. He is an extremely active and happy baby

which

> might have made it easier to stall investigating why his growth slowed

down so

> abruptly. Is this common in RSS children? I would appreciate any advice

on how

> we should proceed with " treating " Jasper.

> thanks,

>

>

> ---------------------------

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  • 1 month later...
Guest guest

Hi a,

I just got back from vacation and I have been reading the RSS e-mail. So

welcome to the group. I am also new to the group, I joined about three

weeks ago. I have a daughter who just turned four and is 34 inches and 24

pounds. We do not ,as yet, have a diagnosis. What I thought was interesting

about your post, was that you had mentioned that had bronchitis at 6

months. My daughter also had severe bronchitis at around 5 months

coughing,phlegm, throwing up etc..) Did they put on any medication?

And how long did the bronchitis last. Lena was in a terrible state for many

months. Just curious, I don't think it has anything to do with RSS but I

thought the coincidence was interesting. I suppose sometimes I feel like I

am grasping at straws to figure out what is wrong with her.

I am glad to see that GHT seems to be working on RSS/IUGR children, it gives

us hope.

To all those out there who see Dr. Harbison:

We have an appointment with her on May 4. We just got the info pack from

Cornell Medical Center. It states at beginning that we will seen by " one of

the senior consultants in Pediatric Endocrinology " . It does not state that

we will specifically be seeing Dr. Haribison. When I made the appointment, I

did mention that I specifically wanted to see her. With all the stuff I have

read about people having problems with cancellations I am a little scared

that we will end up seeing

someone else. Should I call and make sure that I will see her?

In addition, besides telling her the obvious story regarding Lena, are there

any questions etc..we should ask her regarding the diagnosis and treatment.

Thanks,

Ann Rajan ( Mother of Lena, 34 inches, 24 pounds-non diagnosis as yet)

Re: New Member

>From: booboooww@...

>

>Hi Dana,

>

>I don't mind questions. was 3 pounds 14 oz. He is 26 lbs and 36

>inches. (that is according to his pediatricians scale). He goes to

>Endocrin. every 6 months now. He was 32 inches and weighted 23 lbs when we

>first started growth hormone in May of 1999. He seems to be doing well on

>the growth hormone.

>

>a

>

>------------------------------------------------------------------------

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>------------------------------------------------------------------------

>

>

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Guest guest

Ann:

We have been seeing Dr. H. for 11 years. Her way of working things is that

you see an endocrine fellow first, and that person will ask all sorts of

questions. After waiting for a long time, you will then see Dr.Harbison who

will ask the same questions all over again. Plan on being there for awhile.

Depending on what else is going on, she will stay with you for as long as

necessary to decide what is going on and what you should be doing.

What time of day is your appointment? If you tell me, I will be better able

to give you an idea of how long you will be there. One thing about Dr.H.,

she is thorough. She does not care who else is waiting. If she is with

your child and has questions to ask, then she will tell everyone else to

just wait. This is good for you if she is with you, but can be hard if you

are the one waiting. I think if you know this in advance, it makes it

easier to wait.

Don't be intimidated. And chances are she will not cancel your appointment.

She always goes away in March, so I don't understand why there was a mix-up

with the other family. We always try to avoid appointments with her in late

February to March because of her vacation/seminar schedule.

Any other questions? Just email me and I will try to help.

Jodi

Re: New Member

>

>

> >From: booboooww@...

> >

> >Hi Dana,

> >

> >I don't mind questions. was 3 pounds 14 oz. He is 26 lbs and 36

> >inches. (that is according to his pediatricians scale). He goes to

> >Endocrin. every 6 months now. He was 32 inches and weighted 23 lbs when

we

> >first started growth hormone in May of 1999. He seems to be doing well

on

> >the growth hormone.

> >

> >a

> >

> >------------------------------------------------------------------------

> >DON'T HATE YOUR RATE!

> >Get a NextCard Visa, in 30 seconds! Get rates as low as

> >0.0% Intro or 9.9% Fixed APR and no hidden fees.

> >Apply NOW!

> >http://click./1/2120/0/_/229381/_/953077631/

> >------------------------------------------------------------------------

> >

> >

>

>

> ------------------------------------------------------------------------

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> http://click./1/937/0/_/229381/_/953623244/

> ------------------------------------------------------------------------

>

>

>

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  • 2 weeks later...
Guest guest

Tammy,

Welcome!! Life with CF can be overwhelming this is a great place to ask the

dumb questions that you would never ask the doctors! Maybe you haven't

reached there yet but they will be coming as Maddie gets older. My daughter

Maureen is 9 1/2 years old and we only found out she had CF right after she

turned 8. She also has Crohn's disease which is inflammation in the upper

and lower bowels she has always had respiratory problems. I find this is a

good place when you are not sure if you should be concerned or not about

something that may or may not be a potential problem. It is also a good

place to vent when things get rough! Where else can you go when the last

thing you want is sympathy and you want to get angry Who else will understand

but other parents!

Try to stay on even if you don't post you may pick up new info or educate

yourself a little the one thing I will say is this is not a frightening

group! Believe me there are some out there that will scare and depress you!

Good Luck

Meg

Mom of 2 and 1/2

9yowcf, 5yowocf and one on the way (?)

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  • 7 months later...

Welcome, Dorothy & Amelia!

Or should I say, Aloha! =)

Is the doctor that you're seeing in Hawaii or continental U.S.?

My brother is in the Air Force and is stationed at Hickam AFB near

Honolulu/Pearl Harbor. I'm extremely jealous!!! =)

Hope you find lots of support and encouragement here!

& 3-16-00

Michigan

> Hello,

> I am new to this group. My name is Dorothy and my daughter Amelia

was

> born with a moderate right club foot on Sept 19, 2000. She is

> currently undergoing casting (six weekly casts so far) and will be

> having surgery on her achilles tendon this Wednesday. She will

then

> be in a cast for four more weeks, then the special shoes with the

> bar. We live in Hauula Hawaii on the Island of Oahu.

>

> Aloha,

> Dorothy Colby

> dorothy@a...

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