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Luis and Spesh Dallas, United States: 8wkbtyohapj0; Share

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Luis and Spesh left a comment for Linda McDermitt 3 hours ago

Luis and Spesh left a comment for Cammie Gray 3 hours ago

Linda McDermitt left a comment for Luis and Spesh 7 hours ago

Cammie Gray left a comment for Luis and Spesh 8 hours ago

Luis and Spesh commented on the blog post Mommy and Alex's Blog 10 hours ago

Luis and Spesh left a comment for Linda McDermitt 21 hours ago

Luis and Spesh left a comment for Cammie Gray Jul 3

Luis and Spesh left a comment for Kate Jul 3

Profile

What is your child's name?: Little Miss Kennedy Garcia

How old is he or she?: 7 mths on 6/25/08

At what age was your child diagnosed with PKS?: November 28, 2007

How long ago was the diagnosis?: Nov 28 2007 5mths ago ( 3 DAYS AFTER BIRTH)

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Luis and Spesh's Blog

Hello everyone,\ Hope everyone is well!!!..well Kennedy is doing very good. she still thnks she is the boss of the house and I guess its about time I realize she is. lol..anywho..Developmentally she is behind like the rest of our children but she makes up for it with that hot tamale personality. she hates her theraphy but ive learned how to trick her into liking sitting up..Im make train noises and she doesnt mind so much then..she has grown to despise tummy time b ut i find her sometimes smili… Continue

Posted on May 13th, 2008 at 3:37pm — 3 Comments (Add)

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 on March 26th, 2008 at 12:27am — 2 Comments (Add)

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 on January 22nd, 2008 at 10:00pm — No Comments (Add)

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

Posted on December 23rd, 2007 at 2:22pm — 1 Comment (Add)

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 on December 20th, 2007 at 3:15am — 1 Comment (Add)

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At 1:03pm on July 5th, 2008, Linda McDermitt said…: Yes, we live pretty close. I grew up in Dallas, and Sarah was actually born there. Sarah and I were there for a doctor's appt June 3-4. We are in the process of addressing Sarah's puberty issues. Things worked out that my former OB/GYN in Plano agreed to see Sarah and talk about Sarah's current status hormonally, what our options are, and what our plan will be. It's so reassuring to take Sarah to someone I trust so completely. She's one of those doctors you wish they could clone or expose her to medical school students, and say, "This is how to do it." Anyway, we don't get up to Big D often, even though I have family and friends there, but with her seeing a doc there now that might change. We are considering taking her to an orthopedic surgeon there to follow her scoliosis and hypotonia. Hugs to you all. Love, Linda

At 11:38am on July 5th, 2008, Cammie Gray said…: I wish i could say that Kelsey laughs during these night terrors. But when she has one she wakes up and makes a fussing noise and lifts her head off the bed or floor, she has these during the night and day. They can happen at anytime when she is asleep.

When she has one we cant do much to calm her down. She doesn't like to be moved. That just makes it worse. She cries out like she is in pain. She has this blank stare on her face. Her body stiffens up. And she just keeps crying until its over. If is a light case she can just clam herself down, but otherwise we get close to her and rub her head. She cant her our voices because her hearing aids are usually out and she cant see us because she is not awake.

We have only had to have one EEG done and she didn't have any seizure during this, but her doctor could tell that there had been some activity at some point, just by the brain activity on the test?????. And now we can see when see is having one after someone pointed it out to us. She has the kind that she just stops what she is doing her body goes limp and has the blank stare then just comes out of it. I am going to make an appointment soon to see him again because these night terrors have gotten worse over the last few months.

Hope this helps
Cammie

At 5:17pm on June 29th, 2008, Bec Paton said…: Hey Spesh!
The photographer came to us and he was fantastic! Got some great pics of both girls. Glad you like it too.
: )

At 7:35pm on June 24th, 2008, Gretchen said…: Spesh, thanks for the note! Simon is such a cutie pie and especially after just coming back from the conference, I can see how the kids' expressions, sounds, etc are so identical!! It was great seeing all the little ones and meeting the families! I hope we'll be meeting one day soon.

G

At 9:50am on June 24th, 2008, Blanca said…: I know :) They are so adorable...

At 9:45am on June 24th, 2008, Blanca said…: It's very hard; i would love to be home w/ Alex everyday. Your lucky too in that your Mom will be watching Kenny. Alex loves his Grandma.

At 2:43pm on June 23rd, 2008, Blanca said…: Spesh...i think i accidentally posted this to myself---please be patient w/ me ...lol... while i'm good at troubleshooting PCs; i never have really blogged or belonged to a community to comment, etc :)
At 9:35am on June 23rd, 2008, Blanca said…
Hi Spesh, Yes, i agree the NICU days were long; the hardest part was leaving everyday w/out Alex. I felt as if the Hospital had taken my baby away, it was an awful feeling. When i look back, i know it was w/ God's help that we had the strength to go on each day.
I can't really remember Alex grabbing the syringe though if he got a hold of the tubing that is when we had trouble and then a lot of times, he would pass gas while feeding so the milk would spill over the top of the syringe :)
That's great that Kenny wants to eat orally...i'm sure she is going to do great. but i know the feeling of already wanting to be there. I work full-time and my mom cares for Alex so i know...soon after going back to work after having him home...i took a couple of weeks so that i could work on the bottle feeding with him. Since he would forget to breathe, my family was hesitant to bottle feed him...so i only got to work w/ him before work, during my lunch hour and after work feedings. Once he was bottle feeding better, i would let my Mom or husband bottle feed him while i was there...then it got better---eventually my daughters too were able to bottle feed him. Now he's a pro :) he still won't hold his bottle but we're working on that.

At 10:58pm on June 22nd, 2008, Blanca said…: Hi, I just wanted to say that i think that Kennedy is very cute her smile is amazing :). In reading some of your blogs...the keeping track of cc's she took by bottle, etc. brought back memories of counting the cc's that Alex took by bottle. He had a very hard time getting the suck,swallow and breath edown (he would forget to breathe)
He was in NICU for two months and they finally told us that we would need to think about a g-tube because they weren't certain when he would take all his feedings orally and unless he did, he could not come home.
We reluctantly agreed but now i can proudly say that with a lot of work and patience he got the pattern down and just a couple of months ago in April, he was able to have the g-tube removed (since we had not used it in about 6 months).
Now we are facing leaking from his site; he didn't leak for about 5 weeks then suddenly he started leaking sporadically, so they are thinking that he may need to get a small surgery to close up his site opening completely.
And i know exactly what you are talking about when you say Kennedy is the 'boss'...Alex rules our house..lol...gotta to go, he's demanding his bottle :)

At 1:14am on June 16th, 2008, Blanca said…: Hi, we are in New Braunfels. Thank you for the welcome :)

At 3:19pm on June 10th, 2008, Sally-Anne Wilkinson said…: Lucy is still suffering with the tummy pains, but her paediatrician has asked me to write a diary to see if there are any food triggers. Generally though, she's much better. She had her 6th birthday party just over a week ago, and she had a fantastic time - if you are a member of Facebook, you can see her pictures there :) I must post some new ones here too!

I saw on the Yahoo group that you were thinking of moving nearer to your family and going back to work. I think it's important to have family support around you. Gary occasionally mentions us moving abroad to live. Though I'm tempted, the main reason I don't is that his family is such a support to me with Lucy's problems. I really can understand why you need your family around you. Also, with your thoughts about going back to work, I put Lucy into childcare whilst I worked part time, and she really progressed because of the other children. You'll worry a lot before you do it, and when you do, you'll look back and wonder why you did!