A Forum For Those Touched By Pallister-Killian Syndrome
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Child Neurology Society conference update
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Started this discussion. Last reply by Gretchen & Simon Oct 18.
Magic Bullet mini blender
Replied Oct 11
Magic Bullet mini blender
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Started this discussion. Last reply by The Woods Nov 14.
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We actually traveled with our Magic Bullet. We bring small cans of fruits and vegetables and just mixed them in the hotel rooms. And we would get things in restaurants that he could eat (cottage cheese, sweet potatoes, vegetables). That's one of t...
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...
We've been doing so much better too! I still buy the Gerber Graduates and some fruits to send to school. We're blending the leftover beef and noodles with squash for our next batch.
We got one for Lexi and it has been great, she's actually eating everything we are! Now I just need to get one for our sitter so she can give Lexi what ever she gives the other kids, then she will totally be off baby food!!! Yay!!! (except make wh...
Such great news and amazing progress for our organization. Thanks Kate and Cammie!
Cammie and I just attended the annual CNS conference in Kentucky for PKS Kids. This is the main professional organization for pediatric neurologists here in the States. I hear over 900 ped neuros attended this year. Doctor after doctor approached ...
Oh- so very sweet! Andrew's chair looks familiar- is it a Hoggi Bingo?
Profile Information
- What is your child's name?
- Luke
- How old is he or she?
- 3 years old
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Another successful presentation on Pallister Killian
I just returned from St. Louis Unversity medical school where I gave a talk to the 1st year med students genetics class. I brought Luke- and Cammie and Kelsey also came along too. The nature of my presentation was to share about going through the diagnosis experience. But, of course, I included a lot about PKS. The kids (yeah- the students all looked kinda young to me!) laughed at my hokey jokes and asked questions at the end. And Luke and Kelsey were the stars of the show. The hospital I take L… Continue
Posted on February 3, 2009 at 1:55pm — 9 Comments
A friend sent this to me. I thought you all may enjoy this as well- my sorority sisters (and brothers;)
Thoughts of a Mom
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend,… Continue
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend,… Continue
Posted on November 24, 2008 at 9:42am — 12 Comments
Luke goes to school
At 11:08am on September 8th, 2008, Kate said…
Luke starts his 3rd week of school today. Well so far so good I think. I visited his class last week, and teared up.Emotional on so many levels... Luke seems SO disabled with the backdrop of the other children. There are 6 typical kids and 6 kids with IEPs in his class. And even the special ed kiddos can do so much more than Luke can today. However, I do love his teacher and his paras (assistants). Yep- has his own full time aide in school. Luke has… Continue
Luke starts his 3rd week of school today. Well so far so good I think. I visited his class last week, and teared up.Emotional on so many levels... Luke seems SO disabled with the backdrop of the other children. There are 6 typical kids and 6 kids with IEPs in his class. And even the special ed kiddos can do so much more than Luke can today. However, I do love his teacher and his paras (assistants). Yep- has his own full time aide in school. Luke has… Continue
Posted on September 8, 2008 at 11:13am — 10 Comments
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
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 on January 30, 2008 at 11:00pm — 3 Comments
Comment Wall (35 comments)
- At 4:27pm on October 10, 2009,
Luis, Speshelle, Kennedy and Zoe said… - thats soo nice to hear Luke is doing great. I havent gone back to work and probably wont. I think i might go back for mt Masters Degree before going back to work. Let us Know if you guys want another play date when you come down lol
- At 6:05pm on October 5, 2009,
Luis, Speshelle, Kennedy and Zoe said…
- Im loving Luke in these glasses!!!..how are u guys???
- At 4:47pm on August 23, 2009,
Ivy Ashby {Grandmother} said… - Hi kate was just reading some of the comments and i say it does not matter how slow luke is he will one day show us all what he is capable of doing in his own time. i have learn't through watching kassicus over the past few months that he shows us everyday something new. all these children have something special to teach us and all we can do is support and show them that whatever they do is progress. head up and treasure every moment with your special wee boy cheers for now nanaIvy
- At 7:24am on August 10, 2009,
k Small said… - Love Luke's glasses! What a cute picture.
Sorry to have missed seeing you guys this year, next year is a must!
- At 4:04pm on July 6, 2009,
Alexander (Mommy=Blanca) said… - Hi Kate...we are doing great :) I know i saw the pictures from the reunion and really wish we could have gone. God willing, maybe next year. It looked like everyone had lots of fun and it would have been wonderful to see you and your family again and meet other families. Luke looked like he enjoyed himself :)
Alex started using a stander today; the ot and pt were working w/ him when i went home for lunch and when they were done with his therapy session, they showed me how to strap the little guy in his stander. He tolerated it well even though he complained the whole time. His sitting is getting better; w/ very little support (almost none) he does good but as far as him rolling up and to sit-up on his own, still seems miles away....but we continue to work on it. At his last session his therapists were very impressed with his progress and called it a new stage----it felt good to hear this.
I hope things have gotten better....Lots of Prayers still being sent your way:) Please give Luke a great big hug from all of us.
- At 10:50pm on June 17, 2009,
maria pool said… - Hey Kate, yes we are going and my address is 3007 Jupe Rd. San Antonio Texas 78222. sorry for not giving the information before but i havent had the time to be in the computer now that the kids are not in school.
- At 8:18pm on May 22, 2009,
Luis, Speshelle, Kennedy and Zoe said…
- Hey Kate,
Things are going lol..thanks for asking..hahah..Im startingt o feel sooo preggo now..technically 9 weeks to go!!!!..wooohooo..but im hoping for 7-8 more weeks lol...
Kennedy is doing great..becoming such a little woman..she is geting stronger and more aware of every little thing..I cant even pee int he middle of the night..or leave a room without her yelling " aye" until i get back..she is soo adorable but she is learning some bad behaviors!..she threw a full out tantrum at walmart because she wanted to be carried!..she stopped crying when her father picked her up..so i put her back in the stroller so i can take her to change her diaper..and she flipped like ive never seen before..she started screaming and roaring!!!!..everyone turned around and looked liket hey were gonna arrest me..i tried to play iyt cool because im the boss( lol i wish) and i stoped pushing and went aroubd and sternly said " Kennedy stop it" ( she knows this command)..she looked me square int he eyes and roared at me!!!!!..the nerve of this kid..so i pick her up to stop the scene..she then laughs and giggles loud enough for ppl to hear!!!!!..so now im the parent witht he braty kid!!!!...adn im having another girl!!..what was i thinking!
- At 4:58pm on April 22, 2009,
Cora Byrne said… - Hi Kate its great to be back! billy is in great form getting cuter by the day and heavier and looking at Luke Id say you have your work cut out for you carrying him around also. I really like your buggy what brand is it as im looking to get something for billy
- At 12:06am on April 10, 2009,
maria pool said…
- Hi Kate; how are you? I want to said thank you for the meeting we have last month, it was wonderfull meeting everybody there and seeing the kids and thank you to put up with my son john, I know he dosen't behave. how is luke doing? Matthew is doing o.k still not sleeping all night but thats o.k . have a great easter weekend. big hugs to luke.
- At 9:53am on April 6, 2009,
Alexander (Mommy=Blanca) said…
- Sure is :) How is Luke? Did he enjoy the trip to the Grand Canyon?
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