PKS KIDS

A Forum For Those Touched By Pallister-Killian Syndrome

This is a public forum for those impacted by Pallister-Killian Syndrome. Please also visit our non-profit organization's site at www.pkskids.net

GoodSearch and GoodShop

Notes

Clinical Evaluations

Dr. Ian Krantz of CHoP put together a list of recommended evaluations and tests for our children.  Please visit this link CLINICAL EVALUATIONS  or PKSKids.net and clinical on the Medical Info and Research button on the left for this and more info!

Created by Gretchen & Simon Jan 21, 2009 at 4:16pm. Last updated by Gretchen & Simon Jan 21.

Easy Translator

 

New Members Orientation

First, to be included in our mailing list please go to this link and complete the information: http://www.pkskids.net/keepingintouch.htm

Discussion is where you look at or add a discussion/question of your own. You can read people’s by clicking on the title of the discussion and then at the bottom of that page you can reply.

Blog is where you keep your own little updates or diary --- it highlights on the main page, but is always found on your page.

Notes is FYI for everyone and so is events…again clicking on the title you’ll be able to read more and reply I think also if you have comments or questions. (Looks like you can events but not on notes)

You can add pictures via your “My Page” and you upload those from your computer. I can come into school sometime too if you need me to and show you how to work anything.

You can send Private Messages to people on the site. You can click under their picture and if they write you it will show as NEW MESSAGE in your INBOX on the right of your page. You'll get a notification in your regular email, but you can’t reply via that, you have to go to the Ning page and reply.

Comments….you go to the person’s page to leave a comment.

I hope this is helpful, please let Gretchen or Mike know if you have any questions.

Forum

Tom Amber and Shelby

Facebook!!

Started by Tom Amber and Shelby in Untitled Category Jul 2.

Elizabeth & Anthony

Medic-aid 3 Replies

Started by Elizabeth & Anthony in Untitled Category. Last reply by Camilla/Lauren Jul 3.

Bec Paton

wheelchairs and vans 10 Replies

Started by Bec Paton in Untitled Category. Last reply by Bec Paton Jul 1.

Latest Activity

So sweet!
Look at those eyes!!!! Beautiful!
elizabeth, medicaid did not approve a feeding chair for lauren either because she had the kidkart and that could be used for feeding as for the bath chair her pt went through national seating and mobility which is a company here that provides a wi...

Blog Posts

Noelle & Nasaya Coleman

Time Flies////Turned 3 mths old 2day.

She's 3 mths old today 6/23/2009////////Time has flown past us.....Her accomplishments already I have a cellphone video of her scooting on the ground...Man she'll b crawling soon....Her breathing has gotten raspier but she's also more alert...her breathing worsens when she's excited....She smiles all the time....very good baby....went to church sunday and she sat and watched everyone and everything didn't even give me a hard time.....She is nosey always looking at someone just taking them in and… Continue

Posted by Noelle & Nasaya Coleman on June 23, 2009 at 11:43pm — 1 Comment

tracy ayres

update!!!

hj had his eye appointment on monday and his left eye is definatly not working very well.he has been given new glasses that we got today(and the lenses are so thick i didnt realise just how bad his sight is) and he has to go back in a couple of months and be re checked,and if it still seems bad they are going to put some kind of drops in his right eye which will make that his weaker eye so that hopefully his left one will start working harder as they said an eye patch wouldnt work because of his… Continue

Posted by tracy ayres on June 17, 2009 at 5:59pm — 6 Comments

Luis,Spesh&Kennedy Garcia

Still hanging in there!

So im still hanging in there folks!!!..I havent been on because its been increasingly hard to waddle to the computer and my PDA acts weird on this site since its changed.


Kennedy is doing great..We are getting her the stander next week!!!..She has been standing more in the jumper actually jumping..She has been growing up soo much its like on a daily basis.Lol yesterday at Cheesecake factory she was actually stuffing sourdough bread in her mouth lol..it was sooo cute..she had soo much fun now t… Continue

Posted by Luis,Spesh&Kennedy Garcia on June 15, 2009 at 12:08pm — 2 Comments

Noelle & Nasaya Coleman

UUUGGGGHHHHH!!!!!!!!!!!!!!!!!!!!! (Just venting frustrastion w/a little comedy)

Well I go for a second time to get my tubal procedure...yep no more "chiren".........they cancelled it because my blood pressure is way tooooo high they want me to see a doctor right away and get on medication.........Yeah I'm stressed too worried about my family and Nasaya(not really worried just overwhelmed)......didn't have enough time to think about myself....they were telling me my blood pressure is abnormally high every since I had Nasaya but I didnt put any sense of urgency on it......I a… Continue

Posted by Noelle & Nasaya Coleman on June 12, 2009 at 3:45pm — 2 Comments

Sally-Anne Wilkinson

PKS Research

Just to let you know that a doctor called Moira Blyth came to visit Lucy earlier this week. She is doing research on PKS in the UK, and she has contacted families through Unique. Because of the ethics rules in the UK, she is unable to contact families unless she is giving prior permission through a group such a Unique, but if any UK families want to contact her, she has given permission for me to post her details on here.

Just a rundown of what she did - nothing complicated. She took blood and… Continue

Posted by Sally-Anne Wilkinson on June 11, 2009 at 6:49am — 3 Comments

 
 

About

the zanes the zanes created this social network on Ning.

Create your own social network!

Badge

Birthdays

There are no birthdays today

Click here to order PKS Kids stuff. Promote PKS Kids by wearing a shirt, carrying a bag and you'll also be helping raise funds for PKS Kids!

Groups

 

© 2009   Created by the zanes on Ning.   Create Your Own Social Network

Badges  |  Report an Issue  |  Privacy  |  Terms of Service

You are Offline Sign in to chat!