PKS KIDS

A Forum For Those Touched By Pallister-Killian Syndrome

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

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Videos

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Forum

Interaction

Started by Carrie Bergman in Untitled Category. Last reply by Gretchen & Simon 2 hours ago. 3 Replies

Hearing aids

Started by Matthew and Annabelle Muhlestein in Untitled Category. Last reply by Matthew and Annabelle Muhlestein 11 hours ago. 4 Replies

info

Started by Matthew and Annabelle Muhlestein in Untitled Category. Last reply by Carrie Bergman yesterday. 4 Replies

conor update

Started by elaine and conor :) in Untitled Category. Last reply by Inder Seth Oct 11. 9 Replies

Supporting Family Members

Started by Heather in Untitled Category. Last reply by Gretchen & Simon Jul 31. 4 Replies

Blog Posts

Feeding Problems? or Not?

Posted by opal burks on April 17, 2014 at 9:10pm 2 Comments

Back in February Pia was hospitalized fir what they called Human metapnuemovirus. She stayed 2 weeks in PICU and was sent home. She was still congested but we were told that this would ease in time. Since then she has been hospitalized 2 more times for the same congestion. The congestion was so bad at one point that me and my husband found ourselves giving rescue breaths. She is being treated for asthma and acid reflux. She still has repeated congestion and the congestion seems to get worse… Continue

Ohio PKS Kids

Posted by Linda Jones & Ashley on January 16, 2014 at 1:48am 4 Comments

Today I met Kristen DeSantis for the 1st time.  Although the circumstances were not the best we were able to talk and compare the progress of Bella and Ashley.  It was finally nice to talk to someone else about PKS.  When Ashley was diagnosed over 21 years ago we had no one to talk to.  Kristen was told today that the were 3 children with PKS that had surgery this week.  We would like to make contact with that family if at all possible.  I would also like to make contact with any other…

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Annalee Elise Hand 10-25-2013 Forever in our hearts!!

Posted by Arianna Hand on November 7, 2013 at 11:37am 7 Comments

On October 21, 2013, I went in for my monthly check-up. I heard my beautiful baby's heartbeat.....not at all knowing it was going to be the last time. My doctor did everything as usual but when she measured my belly she said that I was measuring larger than I should be at 26 weeks. She said that it was probably because Annalee wasn't swallowing fluid like she should. The week prior my whole family contracted the stomach virus, the effect that took on me was far worse than I had thought. I…

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Caregivers

Posted by Marcy Stayer on July 2, 2013 at 8:15pm 2 Comments

So, my FAVORITE caregiver has just given notice. She is in school, at age 60, and is coming up on her last semester, which she's been told is the toughest of all. So, to prepare for her future she felt she needed to quit her position with us and focus on her studies. It's difficult to let her go, but I know it's going to be ok. I've been through this many times, as it's so difficult to find good dependable and caring help these days.

I'm a service coordinator with the dept of…

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Photos

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PKS Kids Video Montage (updated!)

 
 
 

Latest Activity

Gretchen & Simon replied to Carrie Bergman's discussion Interaction
"I love that, Erin!  Inchstones.  PERFECT!  xo"
2 hours ago
Bruce and Erin Sherman (Ava) replied to Carrie Bergman's discussion Interaction
"I remember those days so well....our girl Ava has a smile that lights up the whole room..... When she was little it was always perplexing what was making her smile.... Except when we were jiggling her.... Ava also has CVI, which can make it feel…"
4 hours ago
Matthew and Annabelle Muhlestein left a comment for Sophie
"welcome aboard, that is one beautiful baby "
11 hours ago
Matthew and Annabelle Muhlestein replied to Matthew and Annabelle Muhlestein's discussion Hearing aids
"carrie thanks for everything its good to know theres other parents out there going through the same thing. no annabelle doesn't have a g-tube she is breast feeding pretty good other than a handful of desats in the first few weeks, she still…"
11 hours ago

Birthdays

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