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Cheri -

Thanks for giving me your point of view on having a parent with SMA. I

always try to keep " in tune " with feelings my kids have about my

disability, but I realize that our mother-daughter relationship might

hinder them from being totally honest about things with me. So hearing

from you gives me a possible " glimpse into the future " (if that makes

any sense). I think one of the most important things is being open

about my disability with my kids' friends. I answer their questions

about how my electric wheelchair works, etc. Facts seems to make things

more down-to-earth and thus less mystifying or scary.

My best to you and your family!

--

Jenn Malatesta

--------------

My web page: http://www.isoc.net/brokeninside/nekrosys/

------------------------------------------------------------

Philo of andria:

" Be kind, for everyone you meet is fighting a great battle. "

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  • 4 weeks later...

Gail,

This group was originally for infantile scoliosis, but anyone is welcome..

I am the list owner, and a mom of a little girl with infantile scoliosis..

I know little of congenital scoliosis, but am aware that every case is different, just like infantile.

Has anyone ever suggested looking into the Titanium Rib for s future? Or has anyone ever mentioned casts as a way to maintain s curve until growth is on her side??

I realize that some congenital cases need surgical intervention right away, but for those that dont,casts alternated with bracing may be an option.

Try looking up the Titanium Rib on the net..Its there but if you cant find it let me know and i will get the exact address.. I can also send you some free info on it..

If you are interested in seeing what casts can do let me know..I would also be willing to send you a video on it for free..Once viewed you could send it back to me so I can circulate it to other moms.

Gail, I am only a mom not a doc. I only want to provide info so moms/families can make the best choices possible for their babies..I am not suggesting anything but education, so we can all make the right choices.

Let me know, and thanks for checking out the list

Sincerely,

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  • 1 month later...

Hi Everyone

I just signed onto this group. My name is Egan and I am an outpt

dietitian at Brigham and Women's Hospital in Boston. I look forward to

receiving posts!

Thanks

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There are now three new levels of MSN Hotmail Extra Storage! Learn more.

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On Thu, Jan 22, 2004 at 06:15:10PM -0000, meason1234 wrote:

> Hi! I'm in my second week of my challenge, so far having lost no

> weight but a successful 6.5 inches of body fat. I've been looking

> for a women's support group, and this one looks great! I've started

> at 29% bodyfat, so I've dropped a percent or two already. I did a

> challenge two years ago, but was injured during my 9th week and

> couldn't finish. After that I lost my momentum, and haven't been

> able to bounce back til now. In the meantime I'd gained another 10

> pounds, due to a new medication and, frankly, being two years older

> without working out!

> My special concerns are that I'm genetically built to gain real

> mass on my arms, my big guns as my husband calls them, and I really

> want to avoid that. Can anyone offer suggestions as far as workouts,

> to lean them out rather than bulk them up? Higher reps with lighter

> weights, I know, but change up my routine more often than 4 weeks?

>

> Thanks!

Hi meason & Welcome to the group :)

Sounds like you have managed to make great progress in the past and

I'm sure you'll be able to make just as good progress now :)

I have the same problem with arms but I've found that they were the

first thing to lean out compared to the rest of my body. As they leaned

out, I found myself wanting more definition.. if this is where you

gain a lot of muscle(which sounds like it is), I'd consider it

good genes :)(personally I wouldn't mind having really buff arms!).

You could likely just not work them out as much. Some of us work

muscle groups that are our hard to gain areas(like shoulders or

hams etc). Personally If I keep going the way I am, I'll have

to lay off chest exercises a bit because I find I easily gain

mass in that area(and amazing it was the #2 area where I lost

bodyfat). (note that I'm not doing the bfl workouts as-is but

do 2-4 exercises per muscle groups sets varying between 2-3).

Personally, I'd recommend doing the bfl workout as is and as you get

closer to week 12, evaluate just how you are doing with muscle mass

on your upper body and readjust as needed then.

--

-eve

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  • 7 months later...

We are here for you.Sounds like you know what to do to keep your life under control while on treatment.Just don't forget to drink at least a gallon of water a day to help with the sides.Welcome to our group.We will help all we can

Gail

http://deveauxkennels.tk

mailto:gaila@...

-----Original Message-----From: Barbara Beagley [mailto:peacecreekpaints@...]Sent: September 10, 2004 7:55 AMHepatitis CSupportGroupForDummies Subject: new to group

Hi .my name is Barb I am on shot 8 of 24 week regimen. I have hep c geno 2 no subtype, bx was grade 1 stage 0-1, vl was 8 million. I got my 2 month lft's and cbc's day before yesterday and they looked really good ALT was 65 AST was 34. Only thing not in normal parameters was WBC and it was 4.1 so not far under the normal which they said starts at 4.5. Last month I had 3 things that were high on my tests, but not sure which they were. Going to see my general practitioner on the 13th to up my anti-d's since my mother's head is starting to take on a lovely set of red circles just like a big bulls eye. Also feeling a lot better now that I have a horse again, and I have to go out and spend time with her since she is only 5 months old and just being weaned. It's like a whole new me and the best way I could have gotten myself out of the depression that I was starting to slide into.

__________________________________________________

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  • 1 month later...

hello to u and yours kelly. my name is angel from so. cal and i'm 28

w/type II sma welcome to this great group and i'm sure u'll find all

the questions you may have right here from all of us.

>

> Hi! I just joined the group so I thought I would introdce myself.

We

> have an 8 month old daughter - Grace - who was diagnosed at the end

> of August with SMA. Unfortunately we were not told in the best

> possible way and the doctor was very pessimistic. We have since met

> some wonderful doctors, done a lot of reading and are very

> optimistic. We are awaiting tests to tell us if she's type I or II.

> It was assumed that since we caught it so young she's a type I. She

> is so healthy and strong though that we continue to hope for the

> best. We are learning everyday how to adapt and new questions

arise.

> She is the most beautiful, happy, alert little girl in the whole

> world. I have joined the group in hopes to increase my contacts,

> knowledge and support. Any thing anybody can tell me is great and I

> have already started reading old messages and hope to keep up with

> them. Thank You!!

>

>

> Austin, TX

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Hi Keiiy, I have a little girl who is 5 yrs. old and she has sma type 1. She

was diagnosed at the age of 4 months old. Her name is Kalei and my name is

. If I can be any help please ask.

kellycoggin <KD@...> wrote:

Hi! I just joined the group so I thought I would introdce myself. We

have an 8 month old daughter - Grace - who was diagnosed at the end

of August with SMA. Unfortunately we were not told in the best

possible way and the doctor was very pessimistic. We have since met

some wonderful doctors, done a lot of reading and are very

optimistic. We are awaiting tests to tell us if she's type I or II.

It was assumed that since we caught it so young she's a type I. She

is so healthy and strong though that we continue to hope for the

best. We are learning everyday how to adapt and new questions arise.

She is the most beautiful, happy, alert little girl in the whole

world. I have joined the group in hopes to increase my contacts,

knowledge and support. Any thing anybody can tell me is great and I

have already started reading old messages and hope to keep up with

them. Thank You!!

Austin, TX

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

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I would love to know anything about your and Kalei's story. How

she's doing, what kind of medical interventions she has or has had,

therapy, etc...we've read a lot on-line, but talking to people that

have been through things or going through them is a lot more

helpful. Thanks!

> Hi! I just joined the group so I thought I would introdce myself.

We

> have an 8 month old daughter - Grace - who was diagnosed at the

end

> of August with SMA. Unfortunately we were not told in the best

> possible way and the doctor was very pessimistic. We have since

met

> some wonderful doctors, done a lot of reading and are very

> optimistic. We are awaiting tests to tell us if she's type I or

II.

> It was assumed that since we caught it so young she's a type I.

She

> is so healthy and strong though that we continue to hope for the

> best. We are learning everyday how to adapt and new questions

arise.

> She is the most beautiful, happy, alert little girl in the whole

> world. I have joined the group in hopes to increase my contacts,

> knowledge and support. Any thing anybody can tell me is great and

I

> have already started reading old messages and hope to keep up with

> them. Thank You!!

>

>

> Austin, TX

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So

all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..)

may

> occur occasionally in emails. Over use of inappropriate language

will

> not be allowed. If your under 16 ask your parents/gaurdian before

you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the

disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -

unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@a...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@a...

>

>

>

>

>

>

>

>

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Hi Janel,

Welcome to the group! I, myself, just re-joined after a long, long

hiatus! (4 years). My hubbie os doing it with me as well. It makes it

a lot easier for cooking!!

This board is great for questiosn, motivation and support!

I commend you for tackling school and working full time, I just got my

B.S. in Organizational Management this past May. I was going full time

and working full time. I know how tough it is!

Good luck with BFL and school!!

>

> Hi everyone,

>

> I just wanted to introduce myself. My name is Janel and I am

> starting the program tomorrow. I live in New York with my husband of

> 5 months. I work full-time, go to grad school part-time, and need all

> the support I can get to follow through with the Body for Life

> program!

>

> I have actually completed the 12 week program about a year ago but

> stopped working out all together :( I don't know why I stopped. I

> think sometimes it's hard to see the changes on your own body. I

> think I was to critical of myself and decided to stop.

>

> This time around, I've gotten my husband involved :) It should be

> nice to have his support and will make cooking ALOT easier! The

> hardest part of the program is having to make two different dinners

> (one for me and one for the hubbie).

>

> I look forward to meeting all of you!!!

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Thanks, ! It's nice to know that you're in the same boat as

me :) I can handle work, no problem, but school AND work is

difficult. I think working out and eating right really helps me get

my energy up. I've been so tired lately, it's disgusting!

Can't wait to get started again!! We'll see how my hubbie does! :)

Janel

> >

> > Hi everyone,

> >

> > I just wanted to introduce myself. My name is Janel and I am

> > starting the program tomorrow. I live in New York with my

husband of

> > 5 months. I work full-time, go to grad school part-time, and need

all

> > the support I can get to follow through with the Body for Life

> > program!

> >

> > I have actually completed the 12 week program about a year ago

but

> > stopped working out all together :( I don't know why I stopped.

I

> > think sometimes it's hard to see the changes on your own body. I

> > think I was to critical of myself and decided to stop.

> >

> > This time around, I've gotten my husband involved :) It should

be

> > nice to have his support and will make cooking ALOT easier! The

> > hardest part of the program is having to make two different

dinners

> > (one for me and one for the hubbie).

> >

> > I look forward to meeting all of you!!!

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Kalei is doing good. She is on a ventilator due to having to stay on a bi-pap

all the time. I was scared at first but now I am so glad we went that route. She

is doing so much better and has been less sick. She is on no med's but may have

to be for sugar but we are trying to change that with her diet. She has a

physical therapist that comes twice a week. It has been a long road because you

have to get all the info from other families because these Dr.'s do not know

much about it or nothing about it at all. (sma)

Visit her site at www.caringbridge.org/ga/kalei

kellycoggin <KD@...> wrote:

I would love to know anything about your and Kalei's story. How

she's doing, what kind of medical interventions she has or has had,

therapy, etc...we've read a lot on-line, but talking to people that

have been through things or going through them is a lot more

helpful. Thanks!

> Hi! I just joined the group so I thought I would introdce myself.

We

> have an 8 month old daughter - Grace - who was diagnosed at the

end

> of August with SMA. Unfortunately we were not told in the best

> possible way and the doctor was very pessimistic. We have since

met

> some wonderful doctors, done a lot of reading and are very

> optimistic. We are awaiting tests to tell us if she's type I or

II.

> It was assumed that since we caught it so young she's a type I.

She

> is so healthy and strong though that we continue to hope for the

> best. We are learning everyday how to adapt and new questions

arise.

> She is the most beautiful, happy, alert little girl in the whole

> world. I have joined the group in hopes to increase my contacts,

> knowledge and support. Any thing anybody can tell me is great and

I

> have already started reading old messages and hope to keep up with

> them. Thank You!!

>

>

> Austin, TX

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So

all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..)

may

> occur occasionally in emails. Over use of inappropriate language

will

> not be allowed. If your under 16 ask your parents/gaurdian before

you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the

disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -

unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@a...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@a...

>

>

>

>

>

>

>

>

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Welcome! Definitely make one dinner. This group is great for

support - you've come to the right place.

Jen

>

> Hi everyone,

>

> I just wanted to introduce myself. My name is Janel and I am

> starting the program tomorrow. I live in New York with my husband

of

> 5 months. I work full-time, go to grad school part-time, and need

all

> the support I can get to follow through with the Body for Life

> program!

>

> I have actually completed the 12 week program about a year ago but

> stopped working out all together :( I don't know why I stopped. I

> think sometimes it's hard to see the changes on your own body. I

> think I was to critical of myself and decided to stop.

>

> This time around, I've gotten my husband involved :) It should be

> nice to have his support and will make cooking ALOT easier! The

> hardest part of the program is having to make two different dinners

> (one for me and one for the hubbie).

>

> I look forward to meeting all of you!!!

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Hi! Of course, you can both eat the same dinners! My husband and

three children basically eat what I eat. I feel so good about them

getting the proper nutrition. They love it. Some of those recipes

in the " Eating for Life " book are excellent. I just stay away from

the ones that include cheese and white pasta. And you never know.

My husband has jumped on my BFL bandwagon! And we all love

celebrating free day together!

> >

> > Hi everyone,

> >

> > I just wanted to introduce myself. My name is Janel and I am

> > starting the program tomorrow. I live in New York with my

husband

> of

> > 5 months. I work full-time, go to grad school part-time, and

need

> all

> > the support I can get to follow through with the Body for Life

> > program!

> >

> > I have actually completed the 12 week program about a year ago

but

> > stopped working out all together :( I don't know why I

stopped. I

> > think sometimes it's hard to see the changes on your own body.

I

> > think I was to critical of myself and decided to stop.

> >

> > This time around, I've gotten my husband involved :) It should

be

> > nice to have his support and will make cooking ALOT easier! The

> > hardest part of the program is having to make two different

dinners

> > (one for me and one for the hubbie).

> >

> > I look forward to meeting all of you!!!

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  • 3 weeks later...

Greg,

What illnesses did you have? If the product is something that is for sale, please don't post it here. I'm glad you have had relief from illness.

Hugs,

New to group

Hi all I used to be sick all the time and found that nutrition was the key. My wife made me take this stuff and now I no longer get colds ect. Greg~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./links Personal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

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  • 1 month later...

> > Any beginner suggestions are appreciated.

For me, the key is planning. I plan my meals ahead of time and

always make sure I have emergency meals on hand if I forgot one of

my meals.

Colleen

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Amen to that Colleen. Remove all reason to use the drive through or

consume anything else not on the plan. My kids make fun of me for

taking so much food wherever I go but hunger strikes me at odd times

and I have to have something at hand immediately.

Also, plan your workouts. Plan the rest of your day around them.

There is a chance I might have to work in the office away from home

telecommute for a while so I'll have to plan on doing all workouts

at 5am before anyone else gets up. You could probably knock out

reading the book in about a day though. There isn't anything

complicated about it. The sooner you have the knowledge the sooner

you can apply it. Hope this helps.

Stasia

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  • 1 month later...

New to group

Hello!

My name is and my son Chase was

just diagnosed with

Aspergers last week. Chase is 7 y/o

**********Welcome to the group and other new members. Ask any questions as there is a wide range

of ages and circumstances in this group. If you don’t get an answer

please do ask again. I have a 12 year old son who is currently into World War

1, Tin Tin, Star Wars and reading cook books…Gail

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,

Welcome to

the group!!! Any stimulants that are usually used for ADHD are extremely

detrimental for Tyler too. They work opposite of the way they are supposed to.

Thank God for Straterra!!! Anyway, I just wanted to say that you aren’t alone…

and Congratulations on the diagnosis!!!

~hugs~

Rabecca

-----Original

Message-----

From:

[mailto:morgana_dreams@...]

Sent: Wednesday, February 16, 2005

11:43 AM

To:

Autism and Aspergers Treatment

Subject: New to

group

Hello!

My name is and my son Chase was just diagnosed with

Aspergers last week. Chase is 7 y/o and extremely brillant at 4 he

had been diagnosed with ADHD he was never tested for anything else.

He had been on medication for the past 3 years. This past year

nothing seemed to be working in fact he was more aggressive and

belligerent than ever before.

I was able to get into a Dr. in Fayettville and he diagnosed him

with Aspergers. I stopped him medication and he has been fine ever

since. I figured that since he didnt need the med for the ADHD it

was doing the opposite to his system that what it was suppose to for

him. He tempers have called down and hes more reasonable now.

We live in Arkansas in a small town in the Ozarks my husband is a

local truck driver and im going to school to get my nursing degree.

We have 3 other boys also, all of them at " normal " (for our

family,

lol)

I am going to be taking Chase back up to have a full Pysch work up

done so we can take care of anything now before he gets any older. I

dont let the school put him in special classes or give special

consideration to him because I feel since hes such a high end that

he needs to learn to be able to cope now so he can later. Thankfully

we have no developmental delays we just have social and emotional

delays.

I look forward to learning from y'all

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Amen to that!! My ds had a horrible time on stimulants - which now

that I think about it isn't shocking, he used to have a horrible time

on antihistamines too. Straterra has been wonderful for us too.

Anne, Mom to Jack, 7.4, AS, DSI, ADD

Any stimulants that are usually used for ADHD are

> extremely detrimental for Tyler too. They work opposite of the way

they are

> supposed to. Thank God for Straterra!!!

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  • 1 month later...
Guest guest

Dear Tally,

You have been on my mind a lot ever since you wrote to the Kombucha

list. Today, an article about 'Water cure' was brought to my

attention and I immediately though of you and your unbearable pain.

I beg you, read this at

http://curezone.com/art/read.asp?ID=17 & db=3 & C0=17 Water Cure: A New

Medical Discovery

I am convinced that water will make a big difference in your life

and in my life too.

Praying for you,

Margret:-)

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  • 2 weeks later...
Guest guest

In a message dated 4/1/2005 1:41:34 A.M. Central Standard Time, heavenly_angels_7@... writes:

However at times getsred cheeks and ears. Which would lead me to believephenol issues yet.

My son gets red ears and faced, sometimes it will be just one ear too. He is not on any medications or diets. He takes a daily vitamin and that is it. I was told by a mental health provider for our local regional center that he sees that a lot in young boys with aspergers.

Geriwife to mom to Logan, Krista, and Abigail¸...¸ ___/ /\ \___,·´º o`·,/__/ _/\_ \__\```)¨(´´´ | | | | | | | || |l¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-. :º°As for me and my house, we will serve the LordAdoptiveParentsSupport/

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Guest guest

Hi Geri,

In a message dated 4/1/2005 1:41:34 A.M. Central Standard Time,

heavenly_angels_7@... writes:

However at times gets

red cheeks and ears. Which would lead me to believe

phenol issues yet.

>>My son gets red ears and faced, sometimes it will be just one ear too. He

>>is not on any medications or diets. He takes a daily vitamin and that is

>>it. I was told by a mental health provider for our local regional center

>>that he sees that a lot in young boys with aspergers.<<

This is one of the indicators that he would benefit from a gluten and casein

free diet. Some other ones are constant constipation and/or diarrhoea and

sweating a lot. Try reading Luke 's book " A User Guide to the GF/CF

diet " for a relatively simple explanation.

in England

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Guest guest

In a message dated 4/2/2005 2:52:13 A.M. Central Standard Time, nancy@... writes:

This is one of the indicators that he would benefit from a gluten and casein free diet. Some other ones are constant constipation and/or diarrhoea and sweating a lot. Try reading Luke 's book "A User Guide to the GF/CF diet" for a relatively simple explanation. in England

, I printed this off so I could consult his PhD and MD about it. Thanks for the information. I have never heard of CF though, what is that please?

Geriwife to mom to Logan, Krista, and Abigail¸...¸ ___/ /\ \___,·´º o`·,/__/ _/\_ \__\```)¨(´´´ | | | | | | | || |l¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-. :º°As for me and my house, we will serve the LordAdoptiveParentsSupport/

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Guest guest

In a message dated 4/3/2005 5:47:41 A.M. Central Standard Time, nancy@... writes:

Hi Geri,Casein is a protein found in dairy produce (milk, cheese, yogurt etc).You might find it helpful to look at the University of Sunderland site:http://osiris.sunderland.ac.uk/autism/and also at this :http://www.mugsy.org/tettborn.htmDr Tettenborn has had some papers published on diet and autism I believe. in England

Thanks , I will check them both out.

Geriwife to mom to Logan, Krista, and Abigail¸...¸ ___/ /\ \___,·´º o`·,/__/ _/\_ \__\```)¨(´´´ | | | | | | | || |l¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-. :º°As for me and my house, we will serve the LordAdoptiveParentsSupport/

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