A Forum For Those Touched By Pallister-Killian Syndrome
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Gretchen & Simon
- 42, Female
- Marshall
- United States
- Share
- Blog Posts (15)
- Discussions (305)
- Events (1)
- Groups (5)
- Photos (70)
- Photo Albums (1)
- Videos (4)
Gretchen & Simon's Groups
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Canadians
6 members
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IRISH families
5 members
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Spanish Speaking families
14 members
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Aussie Families
7 members
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UK Families
25 members
Gretchen & Simon's Discussions
Gretchen & Simon's Events
Welcome to Simon's page! Hope Writes Its Own Story
Gifts Received
Gretchen & Simon has not received any gifts yet
Latest Activity
Susan, I can't wait to see Brian (and mom and dad!) again! :)
Brian and his mom and dad plan on coming and will love seeing all of your young children. For those who haven't met Brian, he will almost be 28 years old then and he loves to travel.
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...
Hola, soy Dina, mamá de Máximo, somos de Chile, y al parecer Max es el único niños con PKS en el país, el tiene 2 años y 10 meses, es un gordo precioso, asiste todos los días al colegio donde lo estimulan bastante, además tiene fonoaudiloga y kine...
If you prefer corresponding in Spanish, please feel free to join here. If you're proficient in English too, please pass on pertinent information to the group in English. We need and value all families feedback and experience!
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...
I know of at least 2 people who have cysts on the pineal gland, but that's all I know. Maybe they'll pop on.
Profile Information
- What is your child's name?
- Simon
- How old is he or she?
- 4 1/2 years old
- At what age was your child diagnosed with PKS?
- August 20, 2004
- How long ago was the diagnosis?
- when I was 5 months pregnant with Simon
Hi everyone! I'm Gretchen the mom of 5 children ages 18-4! We live in Michigan. Simon is my youngest and was diagnosed with PKS while I was still pregnant. Simon suffers from seizures, hearing and vision impairment, high arched palate (and a repaired cleft lip), hypotonia and global delays. He is HEALTHY, amazingly so, happy and good-natured.
~+ Never let your fear grow greater than your faith +~
I'm looking forward to chatting with all of you!
VISIT SIMON'S WEBSITE AT www.simonpeters.org.
~+ Never let your fear grow greater than your faith +~
I'm looking forward to chatting with all of you!
VISIT SIMON'S WEBSITE AT www.simonpeters.org.
Gretchen & Simon's Photos
Gretchen & Simon's Videos
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Si Cup 5 4 09
Added by Gretchen & Simon
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Simon with his new toy
Added by Gretchen & Simon
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Jan 18 2009 - snow
Added by Gretchen & Simon
Gretchen & Simon's Blog
Cookbooks
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
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
Posted on October 29, 2009 at 5:52pm — 2 Comments
Grant Announcement
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!!!
Thank you Cammie!!!
Posted on October 26, 2009 at 8:38pm — 5 Comments
Simon's 4th birthday
Thank you so much to all for the wishes, singing, etc. Simon had a great day--he took pudding cups to school and gave his friends jingle bells to tie onto their chairs. It's fun--sounds like a sleigh when you push him.
Here is a link to his birthday pics and I'll post a few on here as well!
Thanks again!
Gretchen
http://s154.photobucket.com/albums/s247/gertyp/simon%204th%20bday/
Here is a link to his birthday pics and I'll post a few on here as well!
Thanks again!
Gretchen
http://s154.photobucket.com/albums/s247/gertyp/simon%204th%20bday/
Posted on December 4, 2008 at 1:07pm — 7 Comments
What's been going on!
Hi to all,
I've been so busy lately and continue to be this week, but we're going out of town again next week so I want to answer everyone while I have a few minutes!
First, horseback riding. Does Simon like it? I can't really tell! He's had 2 good weeks and 2 bad ones. The first week he was getting sick and did NOT like it at all. Went around the track once. The second week was much better and the instructor decided to "back ride" him, meaning she sits behind him. That went great and he went 2… Continue
I've been so busy lately and continue to be this week, but we're going out of town again next week so I want to answer everyone while I have a few minutes!
First, horseback riding. Does Simon like it? I can't really tell! He's had 2 good weeks and 2 bad ones. The first week he was getting sick and did NOT like it at all. Went around the track once. The second week was much better and the instructor decided to "back ride" him, meaning she sits behind him. That went great and he went 2… Continue
Posted on June 24, 2008 at 7:48pm — 2 Comments
The life and times of Simon
Hello all!
Simon has had a not so good few weeks with 4 seizures lasting more than 20 minutes. They were all at school and all at the noon hour.
They seem to be a bit different from his grand mal & atonic seizures, but I haven't seen one yet so it's hard for me to describe.
The first one he gotten taken to the ER via ambulance
The third and fourth they gave him oxygen for some reason.
We are befuddled because he never has them at home!. The only thing I can think of is that he ha… Continue
Simon has had a not so good few weeks with 4 seizures lasting more than 20 minutes. They were all at school and all at the noon hour.
They seem to be a bit different from his grand mal & atonic seizures, but I haven't seen one yet so it's hard for me to describe.
The first one he gotten taken to the ER via ambulance
The third and fourth they gave him oxygen for some reason.
We are befuddled because he never has them at home!. The only thing I can think of is that he ha… Continue
Posted on March 20, 2008 at 7:36pm — 1 Comment
Comment Wall (192 comments)
- At 9:04pm on November 14, 2009,
Maria Elena Giner said… - Hi Gretchen...I have been so busy and time really flies. Sofia is doing great! We have gotten great seizure control on the keto diet. We are eliminating the last of keppra. I was looking through the PKS site and it seems like all the fund raising is going well. I am so proud of you. I need to get more involved, it is just I am so involved with the keto diet, doing presentations at various organizations, helping mom's implement the diet, etc.. It has been such a miracle for us that I can't help but "preach" the diet. Sofia is also doing very well health wise. I have her on Juice Plus vitamins and they have really kept her healthy, no colds hoooray. Just like you school, speech therapy, physical therapy, doctor's visits etc... keep us so swamped and that is just one child!!!
- At 5:15pm on November 8, 2009,
tracy ayres said… - thanks for the cookbook gretch,and thanks for the extra goodies it was really nice of you. xx
- At 12:27pm on September 30, 2009,
Rodriguez-Velazquez family said… - hi this is james, i am a language line interpreter for spanish and english. if you ever need some help let me know. i want to help in any way i can .also i liked the pics from the bike run it looked like fun times. i love bikes, miss my honda cbr600.lol. best wishes
- At 11:19am on September 18, 2009,
Alexander (Mommy=Blanca) said… - Hi Gretchen, I hope all is well. I hope Simon is doing well too :) i just wanted to be nosy and see if you had settled on a stroller and if so, what you got and if you like it. I want the Tomato Stroller for Alex and want to find out if our insurance will cover it (he doesn't have medicaid). And right now it is at a low price of $446.00 (lol) and IF our insurance covers it, we would only have to pay 20%. Please comment when you have a chance. thanks, Blanca
- At 11:49pm on September 13, 2009,
Luis, Speshelle, Kennedy and Zoe said… - Her dad was forcing her to sit up by standing behind her. SHe likes to throw herself backwards or foward when she doesnt want to. Ticks me off! its like she has the ability to sit up and mprop herself but she just doesnt want to. Her therapist think she is pretty nmuch one of the most manipulative kiddo they've met. She just too darn cute!
Hows Simon I see is rocked out hair!
- At 5:14am on September 10, 2009,
tracy ayres said…
- no thats fine i just didnt want to think it might have got lost in the post x
- At 5:01pm on September 9, 2009,
tracy ayres said…
- hi gretchen i've just remembered that you asked for my address just before the uk meet up so that you could send a package,but nothing ever arrived,just checking that it didnt go astray in the post xx
- At 8:25pm on August 30, 2009,
Gita Pinto said… - Thank you. I named her after my dad (Francis) since she was born on his death anniversary day. Look forward to meeting others in the same situation. It'll be nice to share thoughts, feelings, and insight. Talk again soon.
- At 6:51pm on August 12, 2009,
Krystal N Foster said… - I was wondering if there was any kind of symbol for PKS... I have been wanting a new tattoo something that represents Kaden and PKS, and I can't seem to figure out a design
- At 3:27pm on August 12, 2009,
Sally-Anne Wilkinson said… - Simon obviously ADORES you, and why wouldn't he? You're gorgeous :) MWAH! I loved the pics - Joan is obviously a talented photographer, but I think you take fantastic pics too x
Lucy has her ups and downs... at the minute, she's down. I know this sounds mad, and the docs never believe me, but her pain increases when her teeth are coming, and it takes a long time for her teeth to come. When I told the gastro doc this last time, he just gave me an exasperated 'MOTHERS' look, but after 7 years of observing the patterns of lucy's health/behaviour, I really think her teething issues (even though this is her second set) have a lot to answer for in terms of her general well-being. She has new teeth coming right now, and she has a cold/cold sores/tummy pain/sleeplessness etc, just like she did in Cyprus, when she also lost a tooth and gained a new one... I think we just have to live with it.
Toilet-wise, in the day, I would say Lucy is 'trained' - it happened all at once, about a month ago... Something must have finally clicked in her brain, and apart from a couple of accidents (which have both been diahorrhea, so definitely accidents), she has been consistent about going to the toilet (YAY! Only took 4 years!!!) We are now trying her at night-time (we physically couldn't get the pull-ups on her anymore, and by giving her nappies again, it takes her independence out of going to the toilet) and she is doing okay. She wakes me if she needs to go to the toilet, and if she wets the bed it's really hard work in the middle of the night, but she really seems to want to please me (which is half the battle).
Thanks for asking :) xxxxx
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