my mom got flesh eating bacteria and lost her right dominate arm. She came through what many would say is a miracle. Some of her co-workers have nominated her for a cruise through a local radio station. On Friday, Nov. 6th whoever gets the most votes will win a cruise. For all that she has endured this year. You can vote for her at
http://knws.nwc.edu/page.php You can only vote for her this coming Friday afternoon
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Added by Abbey, Brayden, Cory Depoorter on November 4, 2009 at 3:44pm —
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Just a little update on our cookbook sales. We started off with 1000 cookbooks and are down to just about 125. This is phenomenal!
A special thanks to Nic and Terzita down under who sold
396 COOKBOOKS for PKS Kids!
This fundraiser was a huge success and we hope to do it again. I'm already picking out recipes :)
If you need some cookbooks sent to you to sell, please contact me at gpeters@pkskids.net.
Thank you!
Gretchen
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Added by Gretchen & Simon on October 29, 2009 at 5:52pm —
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Through the fine efforts of Cammie Gray, PKS Kids was just awarded a grant for $29,500 which will be used to send awareness information to nearly 50,000 pediatricians throughout the country! The grant was written specifically for this endeavor and we are so thrilled and grateful to be a recipient!
Thank you Cammie!!!
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Added by Gretchen & Simon on October 26, 2009 at 8:38pm —
5 Comments
hi everyone,
just i would let you all know how conor is getting on , its being a while since i did a blog, well conor is still working at sittin up he is getting alot stronger he sits for about 40 to 50 seconds unaided which is brilliant. he is getting more active , when lying down he brings both his legs up and grabs them with his hands and pulls feet to his mouth, its really funny because it seems to tickle him and he laughs his head off. im doing baby massage on his face to help his low muscl…
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Added by elaine and conor :) on October 18, 2009 at 9:30am —
3 Comments
Hello everyone!
Our little baby turned 2 yesterday. Thanks to generous relatives, she now has a doll with its own pusher, highchair and even a little timber kitchen to cook Dolly's food. It is such a joy to see Hannah pretending to do all of things I still do with Sarah. When I give Sarah a bottle, Hannah gives Dolly one too. Soooooo cute!!! It is all so amazing to us to see "normal" development. I do feel lucky that Sarah was our first bub though, we didn't really realise how much more effort s…
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Added by Bec Paton on October 18, 2009 at 1:58am —
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Hi all of you
We are new on the blog, so i have to find out how this works:-)
My name is Maria, my daughters name is Karla, and my husbonds name is Lars. We live in Denmark near by Copenhagen. Our daughter have Pallister Killian and is 3 year old.
She is general healthy and happy, and we love her with all our harts.
I have so many questions about the syndrome, but i do know that it is very different from child to child.
But maybe we could share experience?
I would like to know if any og your…
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Added by Maria Pederson on October 14, 2009 at 4:31am —
6 Comments
Francesca started sleeping through the nights at around 5 months. She slept from 11:00 p.m. until 7:00 or 8:00 a.m. Then at 8 months, everything totally changed. She has been waking up about 20-30 times a night. She sleeps from 12:00 p.m. - 12:30 a.m. Then she wakes up every 10-15-20 minutes for a few hours. Sometimes this goes on until about 5:00 a.m., sometimes later. She finally sleeps again until 8:00 a.m., feeds, then goes back to sleep until noon.
This new sleep cycle is really exhausting…
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Added by Gita Pinto on October 10, 2009 at 12:00pm —
4 Comments
Hi all,
Sorry to do this to you all, but I have on very good authority that October 10 is a very special day for a special (young) lady.
HAPPY BIRTHDAY GRETCHEN !!!
Hope you have an enjoyable day.
LOVE FROM THE ACQUAROLA CLAN (IN PERTH, WESTERN AUSTRALIA)
XXX OOO XXX
(sorry about the tags)
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Added by Nic, Terzita, Adam & Alessia Acquarola on October 9, 2009 at 10:36am —
4 Comments
This weekend I took Nasaya out of town to my hubby's hometown to meet her GreatGrandmother......spending the nite at my sis-n-laws house @ 2am Nasaya woke up wit a fever and I couldnt check her temp bcause I left most of my stuff at home....Luckily my sis-n-law had some motrin and I said I will run in the morning to get what she needs at the store.....well the motrin got the fever down enuff to get her thru the rest of the nite but she was very restless......@ 7am normal wake up time for breakfa…
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Added by Noelle & Nasaya Coleman on October 5, 2009 at 10:58pm —
4 Comments
hello to all. william is being considered for the keto genic diet. Anyone familiar with it?? got any tips?? would be much appreciated. best wishes, claire and william xxx
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Added by claire wilkins on October 2, 2009 at 3:44pm —
4 Comments
JUST THOUGHT WE WOULD LET THE BIG NEWS OUT. BRAYDENS GOING TO HAVE A LITTLE BROTHER. EVERYTHINGS GOING GOOD
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Added by Abbey, Brayden, Cory Depoorter on October 1, 2009 at 8:03pm —
5 Comments
An update on where we are. We just got back from the hospital. What an ordeal. Francesca had a surgery to correct her anterior anus. We were supposed to be at the hospital for a week and on the seventh day, her stiches started to come apart. Unfortunately, all of the them came out and now it'll be several weeks before she's healed. Only then will we know if the surgery actually helped or if she'll need another operation.
Anyways, the good news is she's interacting more, smiling more, and making…
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Added by Gita Pinto on September 28, 2009 at 2:00pm —
3 Comments
I wanted to share w/ everyone that this was Alex’s first year to go to our County Fair. Every year the last week of September our County has its annual fair/carnival and on Friday morning, same week, all of the schools, city and county offices close for the annual parade. It’s a very big deal around here; I have been going since I was little.
Taking Alex for the first time was very different than taking our daughters for the first time. My oldest daughter was exactly his age when we started tak…
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Added by Alexander (Mommy=Blanca) on September 28, 2009 at 11:06am —
6 Comments
Thank you to everyone who sent us well wishes on facebook while Shelby was in the hospital!! She is doing much better! For those of you who no not have facebook, Shelby got admitted for a lower viral resp infections. She had a high fever, had a hard time breathing and couldn't keep her sats above 82!!! Very scary for mommy!!! While we were in the ER, the resident was asking about her medical history..LOL..i love that question! Well I told him about her PKS and he asked if it ran in the family. I…
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Added by Tom Amber and Shelby on September 24, 2009 at 5:55am —
4 Comments
Time is definetely going by fast, I cannot believe Nasaya is going to be 6 mths old this week.....keeping "ya'll" updated on her progress....she's going through PT and she's already pushing up with her own muscles and popping up on her knees like she wants to crawl(YAY) she catches on very quickly and we can see her determination....she has to build up her muscles because her tone is still way too low....looking at her arms looks like some old persons arm with hardly any muscles in it. Her 2nd s…
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Added by Noelle & Nasaya Coleman on September 22, 2009 at 1:19am —
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Hi Everyone! Finally, I get the chance to sit and tell you about meeting Sarah, as Bec has already alluded. Nic and I managed to get away for a week which was great. We, or should I say, I decided that we'd go to Melbourne - a place that I'd visited many times before, but this visit was going to be a little different. We arrived Sunday (Sept 6) and were due to leave the following Saturday (Sept 12), but not without visiting Ballarat to meet a very special little girl "Miss Sarah Paton". I was a…
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Added by Nic, Terzita, Adam & Alessia Acquarola on September 18, 2009 at 1:30am —
1 Comment
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…
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Added by Elizabeth & Anthony on September 17, 2009 at 5:55pm —
2 Comments
We had a fantastic day today! Nic and Terzita came to Ballarat for a visit on the last day of their holiday to the far east (a long way east of Perth anyway!). Although Alessia and Sarah have many different challenges, there are also many similarities. It was just fantastic to meet another family in person. We shared stories of diagnosis, photos, videos, discussions about equipment, therapies and just life in general. Sarah had lots of lovely cuddles with her PKS Uncle and Aunty. I will upload s…
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Added by Bec Paton on September 12, 2009 at 6:47am —
3 Comments
just wondering if anyone has had any feedback from the pks study yet??????
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Added by tracy ayres on September 9, 2009 at 4:50pm —
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hello! this is dad
i wanted to let you guys know that james is doing very good.
he is getting ot, pt and speech terapy at home witch he does not enjoy to much.
funny because we do the same things with him and he is fine with it.
you might not know james had a g-tube, thank god he does not any more.
he was not wanting to eat when he was born, now noboby can stop him.
i think this forum is great.it realy allows one to know what to expect.
it opens your eyes to a whole new world, i am glad we found…
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Added by Rodriguez-Velazquez family on September 4, 2009 at 5:45pm —
4 Comments
Please Vote and tell everyone!!!! Thanks
Cookbooks
just a lil note...
Hannah is 2
Hello every body we are new on the chat
sleep patterns
News about Gretchen !!!
Fever, Bronchitis, & Seizures OH!!!MY!!!!! I betcha Nasaya is scared of Columbus County Hospital in Whiteville NC now.
keto genic diet
The Fair
New Update!!
Yay!! FINALLY!!!
english pks study
just saying hello !
