PKS KIDS

A Forum For Those Touched By Pallister-Killian Syndrome

Elizabeth & Anthony
  • 29, Male
  • Franklin, LA
  • United States
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Latest Activity

November 13
Elizabeth & Anthony updated their profile photo
November 13
November 13
oh...look at that smile; he's so cute :)
November 9
he is such a big boy
November 9
Elizabeth & Anthony added 2 photos
November 8
PKS Kids Face2Face 2010 at Mount Laurel, NJ Hilton
June 24, 2010 at 6pm to June 27, 2010 at 12pm
Planning for our 3rd medical conference is underway right now. Although this is just to get us started (more emails and registration requests will be coming), please use the RSVP here to let us know if you're thinking of attending. Please watch N...
October 27
Yes, thanks for the recommendation! After the reunion we got one too! Not the Magic Bullet, but something similar. It's great that now Anthony is eating more freshly prepared foods instead of the jarred baby food with all the preservatives! I buy ...
October 9

Profile Information

What is your child's name?
Anthony
How old is he or she?
22 months (B-day Dec. 3, 2007)
At what age was your child diagnosed with PKS?
September 17, 2008
How long ago was the diagnosis?
at 9 months old

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Elizabeth & Anthony's Blog

Elizabeth & Anthony

Yay!! FINALLY!!!

Yay! We FINALLY got some medical equipment that we've been waiting 6 months for!! Yesterday we got a bath chair for Anthony and a Tumble Form chair. I've attached pictures of both. Anthony loves being in the water and now that he can sit up on his own in the tub, he can kick and splash as much as he wants!! The tumble form chair is awesome for feeding. He can sit up, well supported, and the best part is that since I'm not holding him, I have both hands free (and I don't have a backache!!). I'm j… Continue

Posted on September 17, 2009 at 5:55pm — 2 Comments

Elizabeth & Anthony

Anthony's summer progress

Well you've all motivated me to add a post about Anthony's progress as well!! We had a wonderful, relaxing summer and are just getting back into the swing of things with weekly therapies and me back to substitute teaching a day or two each week. I have to say that I am so pleased with Anthony's progress lately. He has been moving so much more and with clear intent. He too wakes me up in the morning with his clapping! The other day he was laying in bed on a pillow. The next thing I knew, he had t… Continue

Posted on August 28, 2009 at 9:48pm — 2 Comments

Elizabeth & Anthony

Where do idiots come from????

I feel like getting Anthony a bumber sticker for his stroller that says, "Yes, I have a disability and it's okay to talk/ask about it!"

I mean, we meet people and I can see the wheels spinning in their brains thinking, something just isn't right with this child. The other day a woman suggested to me that I talk to Anthony's doctor or get early intervention services for him as if I didn't know that my child has a disability!!!

Maybe this is one of the reasons why I'm really pushing the idea of… Continue

Posted on May 21, 2009 at 11:47pm — 21 Comments

Elizabeth & Anthony

First Tooth!

Anthony is finally getting his first tooth! I've been anxiously awaiting this day (he's 15 and a half months), but now that it's here and seeing Anthony in so much pain... Ouch! Does anyone have any advice for this first time mom??

Posted on March 25, 2009 at 4:31pm — 11 Comments

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At 10:16am on November 13, 2009, Kelsey/ cammie said…
Hello Elizabeth
Just a update on the 2010 Medical Conference for families with PKS Kids. This year the board has come up with a way to help families meet the financial need for attending the conference. If you are interested in attending and have questions on how this works please contact me at cammie_gray@hotmail.com


Everything will be keep confidential
At 8:00am on October 9, 2009, Tom Amber and Shelby said…
XXXOOO
At 8:08pm on August 30, 2009, Gita Pinto said…
Actually, Francesca is my first. Her dad already had 3. They are 19, 15, and 7 (one girl and two boys), I would love to meet other families with PKS children at the conference next year. Thanks for your warm welcome. It's good to be able to talk to other that know about this rare syndrome and know how it feels to have to cope.
At 2:41am on August 28, 2009, Tom Amber and Shelby said…
I love you Anthony!! You too Elizabeth! Miss you both very very much! XXXX
At 6:05pm on July 8, 2009, Krystal N Foster said…
sorry it took me so long to comment back but we just had our internet turned back on~ Anthony looks like he is getting bigger, he is so handsome. Good luck on the teething situation, and i'm already seeing the way people look at my son and it gets under my boyfriend's skin when he sees someone starring at him. He has a bit of a temper with people when they do that and usually asks them if they have a problem, and they stop. Kaden's dad is very protective when it comes to him.but i just ignore people.
At 10:16am on July 2, 2009, Gretchen & Simon said…
We for sure will be at the medical conference! Now, personally, I don't see the resemblance in Simon and Gannon but Simon and Matthew Pool I do!! However, haven't met either of them in person. Did you have a wonderful time??? It's SO GREAT to meet everyone!! I wish I'd been able to come!
At 8:59am on July 2, 2009, Randy Morris said…
Thanks for the kind words. We had fun, we just didn't have enough time to get to know everyone with all the running between games. We were so happy to be able to finally meet some other folks that have many of the same challenges as we do. What a cute bunch of kids. We hope to stay better in touch now that we've got Gannon's page set up. What a cool way to keep in touch.
At 9:36pm on July 1, 2009, Tom Amber and Shelby said…
HI!!! We miss you guys already! It was so fun finally getting to meet you and getting to know you guys! We had a blast at the Arch and we cant wait to see you guys again! Until then give Anthony lots of kisses for me!
At 3:40pm on June 24, 2009, Kelsey/ cammie said…
Dr. K will be there around 10am Friday and will be there all day. The event we are looking into something indoor. There is an extreme heating waring here until July 4th.

Looking forward to meeting everyone.
At 1:35pm on June 18, 2009, Kelsey/ cammie said…
The reunion plans are coming together just a few last questions. Can you meet with Dr. K Friday morning? And we have a few ideas for the Saturday activity but would like some feed back.

Zoo-mostly free
City Museum $8.00 per person
Magic house $5.50 per person
Forest Park play ground free
Aquaport water park Under 3 free 16 over $15 per person

Or stay at the hotel and just visit and swim in pool?
 
 

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