CDH Clubhouse (Forums) Info / Questions / Problems

[Dawn Torrence Ireland]

You can reply here if you have any questions about the new site. A few bits of info:

To Sign In:

- Members who joined CHERUBS before September 26th have accounts on this site. To retrieve your password, your username is FirstnameLastname (ex DawnTorrence - no spaces) if you joined alone. Spouses would be John and MarySmith, with spaces between first names and the word and. The E-mail address should be your e-mail address that we have in the database.

- If you've changed your e-mail in the past few years and didn't update us then you need to contact us at membership@cherubs-cdh.org and ask to have your new e-mail address added. Include your name, cherub's name, phone number and new e-mail address.

- If you joined after September 26, 2007. please register

- If you are unsure if your registration went through (you would have received a member update e-mail if it had), then please send us an e-mail at at membership@cherubs-cdh.org and ask to have your new e-mail address added. Include your name, cherub's name, phone number and new e-mail address. Please do not register again unless we ask you to - we do not want duplicates in the database please.



Other Site Info:

- Click here for information about Adding Photos (http://cdhsupport.org/members/viewtopic.php?t=821)

- Click here for information about our Calendar (http://cdhsupport.org/members/viewtopic.php?t=773)

- Use the FAQ (http://cdhsupport.org/members/faq.php) up top for most questions on this software

- Change your password, time zone and avatar (graphic/photo) by clicking on Profile (http://cdhsupport.org/members/profile.php?mode=editprofile) up top

- You can send and receive Private Messages (http://cdhsupport.org/members/privmsg.php?folder=inbox) through this system to other members

- You must have java and cookies enabled to use our site

- You can add your own blog (http://cdhsupport.org/members/weblogs.php)and make each post private or public and change the design of your blog (http://cdhsupport.org/members/weblogs.php)

- You can add your own personal photo album (http://cdhsupport.org/members/album_personal_index.php) as well and upload photos of your cherub by clicking on the bottom of the album list to start your own album

- You can add research links (http://cdhsupport.org/members/links.php) or a links (http://cdhsupport.org/members/links.php) to your personal web site by filling out the form to the left on the links page

- Bookmarks (http://cdhsupport.org/members/search.php?search_id=bookmarks) are set when you post to a forum so you can keep up with replies. You can change this this setting in your profile.

- Administrators are in Red Type, Advisors in Blue and Volunteers in Green. Administrators and Advisors can help you with any problem you may have. Each forum also has a moderator who has the authority to ban anyone who might stir up trouble.

- You can change your username but let's please keep it to real names so we can recognize each other.

- Member posts to the forums are private and can only be seen by other members.

- Our Calendar (http://cdhsupport.org/members/calendar.php) will feature the birthdays and memorial days of those members who gave publishing permission on their membership forms. You can change permission setting in your profile.

- The Search function on this member section only works within the member software, not the rest of the site

- Remember your password! We do not have access to your password if you forget, we can only reset it for you. Make sure you keep your e-mail address updated so you can retrieve it yourself if needed.

- We ask that you upload only one photo of your cherub in the main cherub albums of Survivors and Non-Survivors. You are welcome to upload many more in your personal album.

- Please upload conference and get-together photos if you have them!

- If a member is being rude on the forum you can report them by flagging their post. To do so, click on the yellow box in the upper right corner in their post (just above their text).

- Be careful of what you say - we will NOT edit or erase any posts!

- What is said here, stays here. Please respect others privacy by not repeating what is posted here. If a member wants to say something in public, they can post it in their blog.

- We have Rules of Behavior here! We will warn you / temporary ban you 3 times for small infractions and ban you permanently for large social faux paus. If you can't get along well with others, we would rather not welcome you here.

- This is a place of SUPPORT - no gossiping, no cattiness, no rudeness, no mudslinging, no judging the decisions of others, no bashing other organizations, no cursing, no slander, no stalking, NO DRAMA! CDH puts us through enough already. If you can't say something nice then don't say it! This applies off the site as well - troublemakers who can't get along with other members through e-mails or phone calls, etc, will also be banned!


Any questions or problems, just respond to this post!

[KimberlyRichards]

I wasn't sure where to post this question, so here it goes.
I have never sent in the story about Olivia, my cherub. If I would like
to now what do I need to do to send it in?

Thanks,
Kim

[Dawn Torrence Ireland]

You can send your story to membership@cherubs-cdh.org and we'll post it in a future newsletter. As soon as it's printed in our newsletter it will be posted in the stories section. In the meantime, you can also post it on your blog and in a post on the forum for the 2002 cherubs.

[Corin Nava]

I just noticed that when I went to look at my comments on my blog someone had put a bunch of random stuff about Hydrangea plants and Coach bags, etc... Has anyone else noticed this or is it just mine? Is there away to approve messages before they can post them? I don't want to set mine to private b/c I know I have some family that reads it.

[karahess]

I'm noticing the same thing on my blog, too and its really annoying. The last thing I want is to have marketing adds/links randomly thrown on my blog. I hate to have to make these private cause this is my Adam update system to family/friends.

[karahess]

What is a Trackback URL? Is it a tracking system for a blog?

[Dawn Torrence Ireland]

The programmer is trying to figure out how to stop the spammers from posting comments.

Trackback URL is used if you want to post your blog onto another web site. Kind of like a news feed.

[ChristieBrooks]

Since you will be phasing out the Yahoo listservs, will there be a place for those of us who chose to interrupt our pregnancies to support one another? The most appropriate place I think would be under "Meet Our Cherubs", then under "Meet Other Parents", then under "Grieving Parents". Let me know what you think.

Thanks,
Christie
^Madison^ 4/25/03

[Dawn Torrence Ireland]

You're absolutely right, Christie, there needs to be a place for you. I'll add another forum.

[Dawn Torrence Ireland]

Ok, it's up. :)

[StephanieOlivarez]

I can't remember if I sent Shelby's story to the membership@....how do we check if we did?
Does anyone else feel they forget simply things!!!LOL.
Thanks-Stephanie

[Dawn Torrence Ireland]

You can check by asking me and I just looked and nope, I don't have it. :)

I totally understand what it's like to forget simple things. I stare at my fridge all the time trying to remember what I went in there to get. lol.

[StephanieOlivarez]

Thanks Dawn.

[ChristieBrooks]

Thanks Dawn! :D

Christie

[Dawn Torrence Ireland]

Both of you ladies are very welcome! 0:-)

[karahess]

What about me? Have I shared Adam's story?

[Dawn Torrence Ireland]

Nope, I don't have it Kara. :)

Oh and I need you to upload Adam's modeling photos over at http://cdhsupport.org/members/album_cat.php?cat_id=51

[karahess]

Oh good grief! You're relaly funny, Dawn. It only took me 3 hours to get my picture up with posts. What are the size requirements for the modeling photo. Funny you post that as I am sitting here watching America's Next Top Model.

[karahess]

Is my introduction supposed to be short and sweet or can it be long?

[Dawn Torrence Ireland]

LOL, Kara, ok, mail them to me and I'll resize and post them.

Your intro can be as long or short as you want, whatever you want to say. Just post in the Intro section and put your name in the title. :)

[karahess]

Pictures are uploaded. Wow, I did it in 10 minutes. I'm getting good at this.

[Dawn Torrence Ireland]

Good job!!!! I just approved them so they are up. You are getting good at this! :) He's adorable!

[karahess]

I see you have a little info line about you/Shane at the bottom of each of your postings. Is this something that we should all create? It is pretty nice and helps us know a bit of background about who is speaking.

[DanielleKessner]

Hi Dawn,

I have received some feedback on the website. One of the members was saying she thought it would be hard for someone new to the site to find us (or their relevant country/state). I told her if they weren't yet members they would use the links along the top in the yellow section and find us really quickly. She looked at me blanky and said where? She had not even noticed them up there. I had a look and she is right - they are really hard to read and could be missed by others. Can the yellow line be made bigger and the headers more bold so that they stand out?

My other concern is registering for the first time. It took me a while to find the appropriate link to register. When you hit join/log in it generally takes you to the log in page only and not to the register page. Could a link be added to each log on page for new people to register so that they don't get frustrated and give up? I also have a number of medical professionals interested in joining. I looked for the relevant page for them to register and couldn't find it - I assume they use a different page than the parent registration page???

Thanks for all your hard work Dawn and it is wonderful to log on and see SO MANY posts.

[Dawn Torrence Ireland]

The medical professionals membership form is in the downloads section. I have to set up a different form for them. We're considering adding a separate site with a forum like this just for the doctors and research end of CDH. Since we already have the software, I had the programmer copy it over to another site in case we decide to do that. Just need to get enough doctors interested in posting.

Yes, we do need a register button on the pages or something. I'll see what we can do.

Not sure what to do about the yellow section, it has to fit all screens so we're kind of stuck on the size. I thought it would be enough to say on the homepage to use it. Is everyone having trouble using it?

[Dawn Torrence Ireland]

Kara, yes, it is pretty handy to have that info right in front of us when we talk to each other. You can add yours within your profile settings (click on Profile at the top under the photos of the cherubs). It's the Signature setting.

[karahess]

I just can not figure out how to create my own photo album. I go to "User Albums" and I can't find any option to create an album. Please help!

[Dawn Torrence Ireland]

At the bottom, under the lists of user albums there should be an option to start your own album.

[karahess]

Nope

[KimberlySwitzer]

in my profile I noticed my phone number was a bunch of randoms:2147483647 to be exact. So I deleted it and put in my phone number and saved. When I went to see if it worked I realized those same numbers are back. any ideas why this is??

[freedom]

I would love to make a user album. How do I do this. I've tried looking all over, but I don't see anyway to get this done. Would love some help so I can share my family with everyone.

Thank you so much!

Freedom Green, Mommy to Kylee Freedom Green, 10/4/00 –10/5/00, LCDH with multiple congenital anomalies including diaphragmatic hernia & heart defects, two vessel cord & Trisomy 18, And m/c in Dec. 01, Joseph Martin Green III 2/10/03, Skyla Zoey Freedom Green 3/8/04, Chloe Elizabeth Stabrow Green 01/19/06

From Owings Mills, Maryland
Home E-Mail Address: freedomktsc@verizon.net

[LiseDill]

freedom, not sure if you remember me
Lise Dill...Grace's mom.
Wow...you have been busy....3 more children!!!!
I'm so happy for you!
So besides having your children, what else have you been up to???

[Dawn Torrence Ireland]

Freedom, up top on the bar under the kids' photos you'll see User Albums. Click on that and you'll see a list of those who have already set up their albums. Scroll to the bottom of that list and you should see a link to set up your own album. I can't wait to see photos! :)

[karahess]

Nope, Dawn, I can't find such a button either. The only way, I've figured out is really backwards, but, Freedom, look at one of your own posts. At the bottom of your post there is a a button for Gallery. Click on that and you will see a route to post photos. Hope this helps.

[Dawn Torrence Ireland]

NEWS UPDATE:

Introducing CHERUBS new Facebook CDH Forums application!

Our same wonderful safe and confidential forums but now more easily accessible through Facebook!

Facebook Forum App - https://apps.facebook.com/cdhcherubs

Sign up (free!) - http://www.cdhboards.org/register.php

View our forums, read member blogs, view photos right through Facebook!

You can view the public forums without being a member but only members can view the private members only areas.

Any problems signing up e-mail us at login@cdhsupport.org

Any questions about how to use the forums, our CPAB is ready to help at cpab@cdhsupport.org

[Sarahmcardle]

I dunno where to post this, I'm only new to all of this.. My daughter was diagnosed at 30 days after birth with right side CDH. She spent 2months in hospital in ICU and had her sugery. She is 5 months now but the past week ive noticed that Lucy is gettin sick a lot and her bowels are not opening daily..! Is this common. She can go 3 days without a poo..


QUOTE=Dawn TorrenceWilliamson;695]You can reply here if you have any questions about the new site. A few bits of info:

To Sign In:

- Members who joined CHERUBS before September 26th have accounts on this site. To retrieve your password, your username is FirstnameLastname (ex DawnTorrence - no spaces) if you joined alone. Spouses would be John and MarySmith, with spaces between first names and the word and. The E-mail address should be your e-mail address that we have in the database.

- If you've changed your e-mail in the past few years and didn't update us then you need to contact us at membership@cherubs-cdh.org and ask to have your new e-mail address added. Include your name, cherub's name, phone number and new e-mail address.

- If you joined after September 26th please register

- If you are unsure if your registration went through (you would have received a member update e-mail if it had), then please send us an e-mail at at membership@cherubs-cdh.org and ask to have your new e-mail address added. Include your name, cherub's name, phone number and new e-mail address. Please do not register again unless we ask you to - we do not want duplicates in the database please.



Other Site Info:

- Click here for information about Adding Photos (http://cdhsupport.org/members/viewtopic.php?t=821)

- Click here for information about our Calendar (http://cdhsupport.org/members/viewtopic.php?t=773)

- Use the FAQ (http://cdhsupport.org/members/faq.php) up top for most questions on this software

- Change your password, time zone and avatar (graphic/photo) by clicking on Profile (http://cdhsupport.org/members/profile.php?mode=editprofile) up top

- You can send and receive Private Messages (http://cdhsupport.org/members/privmsg.php?folder=inbox) through this system to other members

- You must have java and cookies enabled to use our site

- You can add your own blog (http://cdhsupport.org/members/weblogs.php)and make each post private or public and change the design of your blog (http://cdhsupport.org/members/weblogs.php)

- You can add your own personal photo album (http://cdhsupport.org/members/album_personal_index.php) as well and upload photos of your cherub by clicking on the bottom of the album list to start your own album

- You can add research links (http://cdhsupport.org/members/links.php) or a links (http://cdhsupport.org/members/links.php) to your personal web site by filling out the form to the left on the links page

- Bookmarks (http://cdhsupport.org/members/search.php?search_id=bookmarks) are set when you post to a forum so you can keep up with replies. You can change this this setting in your profile.

- Administrators are in Red Type, Advisors in Blue and Volunteers in Green. Administrators and Advisors can help you with any problem you may have. Each forum also has a moderator who has the authority to ban anyone who might stir up trouble.

- You can change your username but let's please keep it to real names so we can recognize each other.

- Member posts to the forums are private and can only be seen by other members.

- Our Calendar (http://cdhsupport.org/members/calendar.php) will feature the birthdays and memorial days of those members who gave publishing permission on their membership forms. You can change permission setting in your profile.

- The Search function on this member section only works within the member software, not the rest of the site

- Remember your password! We do not have access to your password if you forget, we can only reset it for you. Make sure you keep your e-mail address updated so you can retrieve it yourself if needed.

- We ask that you upload only one photo of your cherub in the main cherub albums of Survivors and Non-Survivors. You are welcome to upload many more in your personal album.

- Please upload conference and get-together photos if you have them!

- If a member is being rude on the forum you can report them by flagging their post. To do so, click on the yellow box in the upper right corner in their post (just above their text).

- Be careful of what you say - we will NOT edit or erase any posts!

- What is said here, stays here. Please respect others privacy by not repeating what is posted here. If a member wants to say something in public, they can post it in their blog.

- We have Rules of Behavior here! We will warn you / temporary ban you 3 times for small infractions and ban you permanently for large social faux paus. If you can't get along well with others, we would rather not welcome you here.

- This is a place of SUPPORT - no gossiping, no cattiness, no rudeness, no mudslinging, no judging the decisions of others, no bashing other organizations, no cursing, no slander, no stalking, NO DRAMA! CDH puts us through enough already. If you can't say something nice then don't say it! This applies off the site as well - troublemakers who can't get along with other members through e-mails or phone calls, etc, will also be banned!


Any questions or problems, just respond to this post![/QUOTE]

[FeleciaWoodruff]

Hello Sarah! I would check with her doctor. These little ones do have bowel obstruction very easily. My son Bryson use to have pooping issues just in general and was on Miralax for a while. He's doing well now without it but it was hurting him really bad so I would definitely check with the doctor in case she is in pain from this. Keep us posted.

[Chris and TracyMeats]

https://cdhboards.org/forumdisplay.php?35-Support-for-Surviving-Cherubs-amp-Families is the area to post your questions too. Once you pull this link up, right above all the threads, is a pink button that reads post a new thread. Hit that and you can start a new thread. Let me know if you want me to move your post for you. If you need any help with the forums, please let me know. Send me a message here on the forums or tmeats@cherubs-cdh.org.

Welcome to CHERUBS Sarah!

I would definitely talk with the doctor about your concerns. CDH babies and children can get bowel obstructions, just due to how things developed and how the organs were put back during their repair surgery. Many CDH babies can be on some type of medication to help them with bowel movements. Anything not normal for Lucy in regards to bowel movements, definitely talk with her you doctor. Is there any new foods in her diet at all recently?