A Forum For Those Touched By Pallister-Killian Syndrome
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Abby Westover
- Female
- Fairmount City, PA
- United States
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Abby Westover's Discussions
Swine Flu shot
Replied Sep 25
Gracie's Page
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Very,very cute!!
Oh I'm sorry--I hope she's not feeling too miserable. That would be an adorable outfit.
Thank you! Gracie was going to be Dorothy from the Wizard of Oz, but she decided to get sick instead! She spent the day in the ER...has H1N1 :( Hopefully the costume still fits her next year!! :)
Aww Gracie, you're sweet. What will you be for Halloween?
Looks like she's loving the cake!!
Gracie was on the ketogenic diet for 3 1/2 years. Yes, it is very difficult and you have to be willing to change a lot of things in your daily routine in order to make it work. Gracie feeds by mouth, so I had to measure 4 meals a day on a gram sca...
What a cutie! She reminds me so much of Gracie when she was little!
Gracie's doctor, whom I trust completely, is insisting that she gets it. Gracie has had a flu shot every year since birth, and I feel comfortable with her getting this one too.
Very cute!!
Profile Information
- What is your child's name?
- Gracie
- How old is he or she?
- 5
- How long ago was the diagnosis?
- 5 years ago
Gracie is 5 years old and our little miracle! She's our first and only child, so she gets A LOT of love from our entire family! Her smile and laugh are the most precious things to us. She just recently began hugging, so we're loving that! We look forward to seeing all the new things she accomplishes and love each and every day with her!
Abby Westover's Photos
Abby Westover's Blog
First Day of School!!
Yesterday was Gracie's first day of kindergarten! She's attending a life skills classroom in our local elementary school. I got to spend the day with her yesterday and the morning was great. She was so excited to ride the bus to school and when we got into the classroom, she just couldn't stop smiling! Then came the afternoon....not as good! Gracie tends to shut down when she doesn't want to do something or she just gets overstimulated, which is what happened. She pretty much slept from 12:30 un… Continue
Posted on September 1, 2009 at 9:00am — 2 Comments
Gracie
Gracie's doing so many wonderful things right now. We were told in the beginning, that she would never smile, laugh, show any affection, walk, talk, etc. I love it when doctors are wrong!! Gracie's smile and laugh are incredible, and she just figured out how to hug! We LOVE that!! Gracie is unable to talk, but is VERY able in letting us know exactly what she wants. She was mad at her dad the other night and yelled at him..he was a little shocked at the attitude that came out of her! Gracie has a… Continue
Posted on July 30, 2009 at 10:38am — 6 Comments
Comment Wall (18 comments)
- At 9:36am on November 13, 2009,
Kelsey/ cammie said…
- Hello Abby
My name is Cammie Gray I am a parent of a PKS Kid and a board member. 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 3:58am on October 29, 2009,
Ivy Ashby {Grandmother} said…
- Hi Abby Since Kassius has had his hearing aids he is doing alot more and I think that is all good stuff. His mum say's he is using his hands more and laughing alot more. Julie and Heremai are seeing a great deal of changes in him every day and they just love their wee treasure so much and the rest of the family are very supportive of their brother. cheers Ivy
- At 3:23pm on October 28, 2009,
Ivy Ashby {Grandmother} said…
- Hi Abby, You are right there are a lot off changes made within the families for these children if you are not sure. Most of the time his mum has to guess what he wants. I notice Gracie is going to school . How does she cope with that. wee kassicus seems to be a bit grouchy away from home. I think he feels safer when he is in his own surroundings at home. Julie say,s he loves being at home and if she is awy for any mount off time he seems to give her that look "WHERE HAVE YOU BEEN" cheers Ivy
- At 3:44am on October 28, 2009,
Ivy Ashby {Grandmother} said…
- Hi Abby, Really nice to meet you. It will be great to share comments about these precious children I no for myself as a grandparent to Kassicus he is a real treasure and a very special little boy who we treasure very much. Through the PKS website we have learn't alot about these children and how best to help. Kassicus has the New Zealand medical profession watching his progress very closely and help for his needs are never far away. Being the only one here no one has heard of the syndrome so its all about educatiing the NZ public. cheers for now Ivy
- At 8:08am on September 2, 2009,
Bec Paton said… - Great photos of Gracie. Looks like she had a great day. Thanks for sharing it with us.
Cheers,
Bec
- At 3:07am on August 28, 2009,
Tom Amber and Shelby said… - Hello! I love Gracies little sun glasses and her headband! She is styling!
- At 10:14pm on August 19, 2009,
kim hudson said… - Hi again! I was just reading about Gracie's scoliosis..Andrew has a significant curve and we are aggressively bracing him in hopes of preventing it from getting worse. He also had a detailed MRI and thankfully, does not have a tethered cord. I think your doc is being thorough, but her curve could just be from low muscle tone etc. let me know if you want any additional info about the brace, etc..I'm happy to share! Does Gracie go to school yet? Let me know if you are making a trip to the Children's Institute..we would love to meet up! :)
- At 11:13pm on August 15, 2009,
kim hudson said…
- wow!that is close! Where are you exactly? I am a nurse, and i do home health (when i'm working) so i know the area pretty well. we'll have to get together. Does Gracie go to the children's institute?
- At 7:04pm on August 4, 2009,
Kelsey/ cammie said…
- Kelsey has made great improvement over the years. She is now trying pureed foods. Still drinks from a bottle, which stems from the stroke she had at birth and effected her left side. She is in a stander, now loves the swing, she can get up on her hands and knees but not at the same time. she scoots around the floor on her belly. She can site unassisted for about thirty seconds, we also have to put her in that position. She is learning to pass things from hand to hand and track things with her eyes. She has a vision and hearing impairment also. She is in a wheelchair and they are working on teaching her how to move the wheels, but we are not giving up on the walking. We are getting ready to start Kindergarten so i am sure we are going to have quite a few set backs. There aren't to many kids around Kelsey age. Glad to see you out here.
Love to hear more about Gracie.
- At 8:08am on August 3, 2009,
Sally-Anne Wilkinson said… - You have some beautiful pictures of Gracie. I've just read your blog and she sounds like she's doing brilliantly... Looking forward to hearing more about Gracie's achievments :)
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