A Forum For Those Touched By Pallister-Killian Syndrome
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Anna Randell
- 41, Female
- Exshaw, Alberta
- Canada
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- Discussions (3)
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- Groups (1)
- Photos (34)
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Anna Randell's Discussions
Seizure video of our kids
Replied Oct 13
Head Shaping
Replied Aug 27
Percentage of Cells
Replied Dec. 17, 2008
The Randell Clan, Grant(Dad), Anna(Mum), Morgan(Amazing big brother) and Hayley(PKS Angel)
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Latest Activity
Profile Information
- What is your child's name?
- Hayley
- How old is he or she?
- June 26th 2008
- At what age was your child diagnosed with PKS?
- December 12, 2008
- How long ago was the diagnosis?
- December 12th 2008
Anna Randell's Photos
Anna Randell's Blog
Hayley's Surgery
Well she did it. Hayley had surgery yesterday morning to release her tethered spinal cord. All went very smoothly and she is now resting comfortably in Daddy's arms after one precautionary night in the ICU. I'm a very proud Mum in that she has not needed more than just plain old Tylenol for her pain. Obviously a good sign in our books meaning that the surgeon did a fantastic job. The ENT took a look around as well while she was out. He was going to attempt to put in ear tubes but I… Continue
Posted on July 29, 2009 at 12:04pm — 3 Comments
Surgery
We got the results back from her MRI and were told that most everything looked as it should. Her lateral ventricles are a little large but they think it is just a development thing and not over production of cerebral spinal fluid, We… Continue
Posted on April 28, 2009 at 9:30pm — 2 Comments
Sitting Up
Posted on March 21, 2009 at 8:11pm — 5 Comments
MRI
Posted on March 21, 2009 at 3:45pm — 2 Comments
Hayley and her helmet (band)
Hayley was fitted with a head shape band today, a funky pink camo one that will go with almost all of her clothes. I have friends that would think of it as a fashion accessory really! LOL. I don't know about other kids, PKS or otherwise, that have low muscle tone but I'm sure they are bound to have some degree of flattening just due to the fact they don't pick up their heads like other kids do. Hayley has spent her time on her tummy but… Continue
Posted on February 18, 2009 at 10:55pm — 2 Comments
Comment Wall (27 comments)
- At 10:11am on November 13, 2009,
Kelsey/ cammie said…
- Hello Anna
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 1:53am on October 12, 2009,
Anna Randell said…
- I still have a hard time seeing her grow so big. Yet she is still my little baby. Some days it is amazing to see the changes.
- At 7:02pm on October 11, 2009,
Nic, Terzita, Adam & Alessia Acquarola said…
- Hi Anna! I just saw Hayley's new profile photo - she is way too cute!! She's looking good. We hope to update Alessia's soon. The kids are having their photos taken at daycare next week. Luv Terzita xx
- At 8:20pm on August 30, 2009,
Gita Pinto said… - Thanks for the welcome. It'll be nice to get some insight from others, share feelings, and get some encouragement. We'll talk soon.
- At 8:56pm on July 23, 2009,
Tyra Skibington said… - hey,
we are not in W Kelowna thankfully. Can I have your mailing address? I have a DVD of our reflex theray with the BIG WIG doctor and you could steal some of the 'moves'.
- At 8:19pm on May 1, 2009,
Krystal N Foster said… - Thankyou so much for the welcoming!
- At 8:44pm on March 17, 2009,
Tom Amber and Shelby said… - Oh by the way.. I noticed in Hayleys pictures that she keeps her hands in fists alot. Are any of her doctors worried about that?? Shelbys a fisted alot of the time and a few of her doctors are worried about it and have talked about splints. Just wondering if you have incountered this.
- At 8:37pm on March 17, 2009,
Tom Amber and Shelby said…
- I am so glad to hear that she is going so well!!!
Shelby is doing ok!! A few sick spells this winter. RSV, but the doc didnt want to do the nasel wash to test for it because of her cleft, so we are just guessing that she has it. She had tubes put in her ears and then got an ear infection so she was running high fevers for about a week. But We started putting cereal in her bottles and she has done SOO well with it that we will be moving to cereal with a spoon her a just a few weeks! I will be so excited to get rid of that haberman nipple!!! :)
- At 11:00pm on March 16, 2009,
Tom Amber and Shelby said…
- HI Anna!! How is Hayley doing?
- At 2:48pm on January 29, 2009,
Barclay family said… - It shocks me that insurance companies and some doctors are still naive enough to think that this is purely cosmetic. I would call and hound everyone to try and get some help, we have actually called our member of parliament before to get help with something we were trying to get the government to help pay for, said they did, but tried to give us a hard time about and it actually worked! Within a couple of days we had a resolution. So get all your info and facts, try where you know to, then try them. If you still don't get anywhere you should be able to claim that on your medical expenses on your income tax I would think. I know it's still an upfront cost and it's only a percentage back, but every bit helps. Hope you come up with something, let me know how you make out. If there's any information I can provide, let me know.
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