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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

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Special Needs Trusts
8 Replies

Do any of you have a special needs trust for your child? We're thinking about it, but I have so many questions! Can the money be put in and taken out the entire life of the child or only after he/... Continue

Started by Gretchen. Last reply by the zanes Apr 25.

Vocalization and cooing????
3 Replies

When did your child start making vocalization and/or cooing?..Kennedy has been making lots of noises latetly; especially when she is upset.She makes vocalizations when she is not mad as well. They ... Continue

Started by Luis and Spesh. Last reply by Gretchen Apr 24.

Hip Surgery - Revisited
3 Replies

We know there was a discussion a month or so ago, started by Dawn but we were hoping for some more info and updates based on what just happened to Jake . . . Jake too has had severe popping in and... Continue

Started by the zanes. Last reply by Camilla Apr 19.

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We have been seeing dramatic and quick changes in Airyn these last couple weeks. She can now push herself to a sitting position from her belly!! The other morning I went in to get her out of her crib and she was sitting up in there! She's also making more sounds like baba, dada, mama,...and other sounds. She's really surprising us and herself these last few weeks. We are trying to work on getting her to crawl now that she is more mobile on her own. She had her 2nd bday last week. We still have… Continue

Posted by Christine on April 16th, 2008 at 4:28pm — 2 Comments (Add)

Our Little Firecracker!!!

Its been so long since I've blogged on her. lol a couple months. Well Kennedy is doing fine; she has been home for 2 mths now. Its sooo amazing thats its been 4mths. My baby is growing up so fast. SHe is just a little tyrant lol. She is so demanding. You can she her personality really shinning through. SHE has begun smiling so much at the things that interest her. LIke her father and I, certain toys and the wonderful lights throughout the apartment. She has okay head control now but she gets s… Continue

Posted by Luis and Spesh on March 26th, 2008 at 12:27am — 2 Comments (Add)

The life and times of Simon

Hello all! Simon has had a not so good few weeks with 4 seizures lasting more than 20 minutes. They were all at school and all at the noon hour. They seem to be a bit different from his grand mal & atonic seizures, but I haven't seen one yet so it's hard for me to describe. The first one he gotten taken to the ER via ambulance The third and fourth they gave him oxygen for some reason. We are befuddled because he never has them at home!. The only thing I can think of is that he ha… Continue

Posted by Gretchen on March 20th, 2008 at 7:36pm — 1 Comment (Add)

my 1st blog entry....

We got Luke's Bingo wheelchair last week. He looks great in his new ride! I'm not too sure about getting it in and out of our car yet, but otherwise so far, I'm loving it. I also got a handicap parking plaque. That feels kind of weird. I haven't actually used it yet. Also, Luke's transition meeting for early special ed. is coming up in a few weeks. Lots of changes around here! Luke is actually kind of "grabbing" for his bottle now! This is huge. If I don't place his bottle in his mouth, he objec… Continue

Posted by Kate on January 30th, 2008 at 11:00pm — 3 Comments (Add)

I want her home already!!!!!

I really want her home already..the only thing keeping her there now is she is not handling her secretions well anymore..She wont swallow her spit until she has to. But the crazy thing is before her surgery she was. I think because they irratated her throat when they put the ventilator in for the surgery she doesnt want to swallow. I dont know but other than that she is better.. she is getting big. She is mostly swallowing the spit but the doctor is concerned about the very few times tha… Continue

Posted by Luis and Spesh on January 22nd, 2008 at 10:00pm — No Comments (Add)

 

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