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PKS KIDS

A Forum For Those Touched By Pallister-Killian Syndrome

Blog Posts Across PKS KIDS

Christine Updates

We have been seeing dramatic and quick changes in Airyn these last couple weeks. She can now push herself to a sitting position from her belly!! The other morning I went in to get her out of her crib and she was sitting up in there! She's also making more sounds like baba, dada, mama,...and other sounds. She's really surprising us and herself these last few weeks. We are trying to work on getting her to crawl now that she is more mobile on her own. She had her 2nd bday last week. We still have… Continue

Posted by Christine on April 16, 2008 at 4:28pm — 2 Comments

Luis and Spesh Our Little Firecracker!!!

Its been so long since I've blogged on her. lol a couple months. Well Kennedy is doing fine; she has been home for 2 mths now. Its sooo amazing thats its been 4mths. My baby is growing up so fast. SHe is just a little tyrant lol. She is so demanding. You can she her personality really shinning through. SHE has begun smiling so much at the things that interest her. LIke her father and I, certain toys and the wonderful lights throughout the apartment. She has okay head control now but she gets s… Continue

Posted by Luis and Spesh on March 26, 2008 at 12:27am — 2 Comments

Gretchen 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

Posted by Gretchen on March 20, 2008 at 7:36pm — 1 Comment

Kate my 1st blog entry....

We got Luke's Bingo wheelchair last week. He looks great in his new ride! I'm not too sure about getting it in and out of our car yet, but otherwise so far, I'm loving it. I also got a handicap parking plaque. That feels kind of weird. I haven't actually used it yet. Also, Luke's transition meeting for early special ed. is coming up in a few weeks. Lots of changes around here! Luke is actually kind of "grabbing" for his bottle now! This is huge. If I don't place his bottle in his mouth, he objec… Continue

Posted by Kate on January 30, 2008 at 11:00pm — 3 Comments

Luis and Spesh I want her home already!!!!!

I really want her home already..the only thing keeping her there now is she is not handling her secretions well anymore..She wont swallow her spit until she has to. But the crazy thing is before her surgery she was. I think because they irratated her throat when they put the ventilator in for the surgery she doesnt want to swallow. I dont know but other than that she is better.. she is getting big. She is mostly swallowing the spit but the doctor is concerned about the very few times tha… Continue

Posted by Luis and Spesh on January 22, 2008 at 10:00pm — No Comments

Gretchen Pictures from Christmas

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Posted by Gretchen on January 7, 2008 at 7:02pm — No Comments

Luis and Spesh Feeding

Yesterday Kennedy took all of her scheduled bootle feedings from the bottle..im proud of her. The whole darn thing!!!!..YAY kenny..today at her 12pm bottle feeding she only had like 10 cc's left over to go down the feeding tube. She is growing up..lol..we will continue to work with her on her feedings Continue

Posted by Luis and Spesh on December 23, 2007 at 2:22pm — 1 Comment

Luis and Spesh Stronger!!!

As some of you may know I had been feeling down because I felt like I was hendering Kennedy and her eating. She would be sucking hard but I was afraid to squeeze the nipple; I thought she would choke. By the time I got up the nerve to squeeze she would be to tired and not wanting to eat. But I am getting better!!!!Today she ate an entire bottle from me....That is amazing she boosted my ego and the practice has let me get a better feel for how she likes to eat. I think that if we keep working…

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Posted by Luis and Spesh on December 20, 2007 at 3:15am — 1 Comment

Luis and Spesh My precious Kenners!

Today the doctor decided that Kennedy should eat from the bottle every other feeding..So I'm hoping the practice makes perfect. It seems like it does. today she took 50 cc's and the Feeding before that 43 cc's..how wonderful right?!..We pray she keeps it up. She is only on 60 cc's anyway. She is continuing to so me what love is. She looks at me like I'm the most beautiful women in the world. It melts my heart. With other people she cries or even frown but with me she opens her eyes wide and just… Continue

Posted by Luis and Spesh on December 15, 2007 at 12:57am — 2 Comments

Luis and Spesh My Little Kenners!

Kennedy is being fiesty with those nurses..I think its because she is tired of them..I keep telling her the only thing kepping her there is that she isnt eating a whole bottle..when she starts eating the whole bottle then she can come home..Sometimes it gets to good to her ans she start breathing really fast and then she gets irratated. She then stops sucking..so we are trying to get her to coordinate more with her breathing, sucking and swallowing..she is doing good though..practice makes perfe… Continue

Posted by Luis and Spesh on December 10, 2007 at 8:32pm — No Comments

Gretchen I love having a blog!

I wanted to post these pictures.

1st--Dawn remember when you asked if Simon slouched in his carseat? I think this is his favorite position :)

Also, does anyone else have something slick to wear while riding the bus? The aid in Simon's class made him this awesome cape. It…

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Posted by Gretchen on December 5, 2007 at 8:02pm — 2 Comments

Luis and Spesh Such a fighter!

Well today the little angel took 20 cc's from a bottle an improvement from the 13 cc's yesterday. The Doctor said that all she needs to do is eat her whole feeding from the bottle and she can come home so lets pray she does that withing this wwek and the next.

We received the EEG results and they were abnormal but didnt show any seizure activities.The Doctor said that the abnormal reading is Due to the PKS. Does this sound right to You guys?

At any rate I am ahppy my little…

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Posted by Luis and Spesh on December 4, 2007 at 7:06pm — 1 Comment

Luis and Spesh Im so proud

Today was Kennedy's first day trying to use the bottle.She did well for it being her first time. Me and her Papa were so proud of her we kept rooting her own like she was on a foot ball field..She didnt take that much but hey its progress..The occupational therapist said that if she does better she might even take to te breast. I really prays she does because pumping is a head ache. I pray God allows my angel to breastfeed. But if its not meant then pumping I will do..She is the sweetest..she ha… Continue

Posted by Luis and Spesh on December 3, 2007 at 3:57pm — 2 Comments

Gretchen Tres, Trois, Three!

Yes, my little baby is three! (It's his golden birthday!) I think he will always be my baby. I love him so much. Can't believe it's been over 3 years since we've started this chapter of our lives. And now I have you wonderful friends I'd have never known otherwise. God is good!

I'll give Simon kisses for y'all :) And eat some cake for you too!

Love to all of you and thanks for being there!

Gretchen

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Posted by Gretchen on December 3, 2007 at 10:30am — 2 Comments

Luis and Spesh Our Little Miss Kennedy Aralyn Garcia

Today kennedy is a week old and to think we found out she had PKS only4 days ago. At first it hit me like a ton of bricks..but the love I have for her already has infinitely grown. I didn't think I could love someone . I am so blessed to have the NICU staff that I have. They noticed her clinching her hands and somebody posture that alarmed them. Withing 5 days of being born we had a diagnosis. We are so grateful to have found out when we did. Sh

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Posted by Luis and Spesh on December 3, 2007 at 1:27am — 2 Comments

Gretchen Elves!

I so wanted to add this "Live" but click the link instead!

http://www.elfyourself.com/?id=9617392460

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Posted by Gretchen on November 27, 2007 at 12:46pm — No Comments

Gretchen Simon laughing

Just wanted to share this video of Simon's irresistable laugh! Emily tickles him all the time just to hear it! :)

< P>

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Posted by Gretchen on November 12, 2007 at 10:12pm — 1 Comment

Gretchen A gift from heaven

Heaven's Very Special Child

A meeting was held quite far from Earth.
"It's time again for another birth."
Said the angels to the Lord above,
"This special child will need much love.
His progress may seem very slow.
Accomplishments he may not show… Continue

Posted by Gretchen on November 12, 2007 at 7:35pm — No Comments

Gretchen I DO TALK TO YOU

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Posted by Gretchen on November 11, 2007 at 8:35pm — No Comments

Aidan Bergquist Halloween

Our community had Halloween last Thursday and Aidan went trick or treat for the first time! He made it to two houses and then he was done! He was like I do not know why I am out here in the cold and it is getting dark are these people crazy?, where is my bed! He did enjoy dressing up in his costume and thought the doorbell ringing at our house was funny. I will post a picture soon. I hope everyone enjoys a safe and happy holiday! Continue

Posted by Aidan Bergquist on October 29, 2007 at 8:57pm — 1 Comment

Gretchen Improvement!

Simon has not had a seizure in 4 days (at least of the frightening kind!) I truly believe in the power of prayer and it is working this time! Thanks to all of you. Continue

Posted by Gretchen on October 25, 2007 at 6:49pm — 1 Comment

Gretchen Si's Seizures

As I said, they're getting worse instead of better! However, we're staying in close contact with our neurologist, raising the Lamictal dose gradually and we also upped the Topamax dose. Please say a prayer that these don't continue to get worse.

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Posted by Gretchen on October 19, 2007 at 4:57pm — 2 Comments

Gretchen Webbing and blogging

I may not blog here too often, we shall see. Simon has a website at www.simonpeters.org that I maintain. Maybe I will copy juicy stuff here! :)

Simon has started having some nasty seizure episodes, at least I'd call them seizures. I'm waiting for a call back from the neurologist. This is starting to be more serious.

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Posted by Gretchen on October 10, 2007 at 1:32pm — No Comments

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