A Forum For Those Touched By Pallister-Killian Syndrome
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Welcome To Jake's Page!!!
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Hi Sally - hope all is well with you and the family - we miss you guys and hope to see you at the conference!
We cannot wait to see this film - it looks incredible and you guys are doing so much to further our goal of awareness.
Good for you guys ...
PKS Kids Face2Face 2010 at Mount Laurel Marriot and Coco Key Water Park, NJ
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...
A couple to get going . . . . keep in mind we use a food processor (much bigger than the bullet)
Lunches - these all make 2 to 3 portions for Jake so we are good for 3 days in a row!
Chicken Salad (no mayo)
Large can of white meat chicken (or fre...
We have tons of "recipes" for pureed food if anyone is interested.
One tip to share quick - we use low sodium chicken stock to get thicker foods to the right consistency in the blender instead of so much baby food. It works great and has some nutr...
CONGRATS!!!!!!!!!!!!!
We will do it if available as well as the general flu vaccine!
Profile Information
- What is your child's name?
- Jake
- How old is he or she?
- 5
- How long ago was the diagnosis?
- 4 1/2 Years
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HI GRETCHEN - I AM HEEEEEERE!!!!
I would just like to say good morning to Gretchen Peters and let her know that I am here!
Love ya,
Mike
Love ya,
Mike
Posted on February 9, 2009 at 9:14am — 5 Comments
Comment Wall (44 comments)
- At 3:26am on August 29, 2009,
Ivy Ashby {Grandmother} said… - Hi this is kassicus's nana just a question did you send the PKS braclets if so thanks very much Kassicus's teenage brother and sister are wearing them and they say the braclets are cool
- At 9:03am on August 24, 2009,
Carole Winpenny said… - Thanks for the welcome.... I have been meaning to join for a long time but just never got round to it.
- At 5:50pm on June 6, 2009,
Austin (Amy Fulwiler) said… - Austin is a happy 12 year old boy who just had his 1st game of the season for Miracle League in De Pere, WI. He loves it!! He has really been doing well, attends a special needs school in DePere because it was a struggle for him to remain positive in an integrated setting. Although he is one of the most social boys I know - cognitively it is very challenging for him to remain in a classroom with his peers.
Healthwise - he has been doing well. (knock on wood :) ) About a year ago we were concerned about his night awakenings, and had heard it could be a sign of seizure activity. We spent some time in Milwaukee, and determined he is having several episodes of "lightening" but no full blown thunderstorms. We followed up with a neurologist here and he thought we should have him on several medications. I tried, but did not see any results I was satisfied with, and resorted back to just monitoring his awake episodes. Continues to have bowel issues at times, and wets at night.
We are blessed, as I read so many stories of other children with PKS, Austin is definately mild by comparison. We are so proud of the level he has reached...and hope to make it to one of these PKS Conferences soon!
I do have a question for parents of PKS children that are under the age of 10 months - how many of you witness your children "shaking" after they eat? When I think back - I bet Austin was having seizures and I didn't even know what they were. He would shake (like he was chilled) in my arms after I fed him. Just curious.
Blessings to all!
- At 9:04am on May 11, 2009,
Austin (Amy Fulwiler) said…
- Austin is 12, was diagnosed shortly before his 2nd birthday - many years ago. I am hoping I can provide parents with some guidance as your children get older. We were told our son would never walk, or talk. I am proud to say he is talking, running, riding bikes...everything we heard he would not do! There are still ongoing cognitive issues, bowel issues, and the like, but nothing we can't handle. He has bilateral hernia repair at 10 weeks - the doctors said he had colic and let him cry it out. Instead he had bilateral hernias that needed to be repaired immediately! So - trust your gut - don't believe everything the doctors say and research research research.....there is a reason these children were given to each and everyone one of us! Enjoy them....
- At 12:05pm on May 4, 2009,
Barbara A Radburn said… - Thank you very much!
Granny Barbara
- At 2:20pm on April 22, 2009,
Alexander (Mommy=Blanca) said… - Hi Jake's family....i was just wondering how Jake was doing? I hope he has fully recovered. Please let him know that we are still sending positive thoughts his way---and lots of hugs :)
- At 1:13pm on April 18, 2009,
Joaquin said… - hola amigo!!! dios te bendiga a ti y tu flia
- At 11:53pm on February 18, 2009,
maria pool said… - hello Zanes thankyou for adding us to your list of frends i hope to talk to you later maria&matthew pool
- At 10:02am on January 31, 2009,
Barclay family said… - Just wanted to let you know we are think about all of you. We hope everything is going well after Jake's hip surgery.
Michelle
- At 3:11pm on January 22, 2009,
Barclay family said…
- Hello Zanes,
I just came across Jake's web site and came across this in Jake's story "his brain structure showed abnormalities suggestive of polymicrogyria". Did they tell you definitively one way or another? We were told that Lexi had polymicrogyria before they found the PKS. Wondering is it's just coincidence or will it turn out to be something a number of our PKS kids have? I'm thinking that maybe those kids that were diagnosed fairly early may have not had MRI's, so maybe they don't know. For the longest time our Dr's, neurologist included, kept referring to the characteristics of her brain abnormalities, but no name. Finally one day we asked if this was something they were using as a search criteria to try to figure out where to look for her problems and he said no this is something seperate on it's own. After we got the diagnosis and we knew we were part of this support group, he asked if we had found any other kids with it. Up until now it's been...no.
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