PKS KIDS

A Forum For Those Touched By Pallister-Killian Syndrome

Christine (Airyn)
  • Female
  • Green Bay, WI
  • United States
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Airyn Livingston

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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...
November 20
November 13
October 14
October 14
Airyn will probably be getting these when she turns 4. That's the age we were told our state starts paying for diapers. I was wondering how well they work??
October 5
My fear from any flu shots are worse effects. Because Airyn takes a cold pretty hard I dont want to put her in the hospital by giving her a flu shot....especially when we don't know for sure how this one will affect the already susceptible.
September 28
This is great. I can't believe how much she has grown; she looks so grown up :) What a cutie.
September 28
Darling!!
September 25

Profile Information

What is your child's name?
Airyn
How old is he or she?
3yrs 4 mos
How long ago was the diagnosis?
September 2006

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Christine (Airyn)'s Blog

Christine (Airyn)

Airyn doing well

Been a few months again since I updated. Airyn is doing great and making progress.

Her therapies (OT,PT and ST) are going well. Her PT is coming along great. She will stand at a table by herself. We have figured out that she just needs to get over her fear. She is capable just scared. Been trying to work on her climbing up or off the couch. She's starting to understand now. Still likes to "perform" at therapy more than home...LOL Which they say is typical.

Her OT is going ok too. She is doing… Continue

Posted on August 17, 2009 at 10:57am — 4 Comments

Christine (Airyn)

Airyn back home from surgery (long)

Hi...not much time to catch up lately with everyone..miss you guys!

Well...to update some news. Good and bad. Airyn came home yesterday from having mastoidectomy surgery on her right ear. It went ok...some surprises during surgery though.

First off...Airyn had a fever last Friday before surgery and then has had a cough and runny nose since. The coughing was so bad at night when she slept it would make her sick. I called the hospital to make sure they still wanted to do surgery. Didn't want to… Continue

Posted on May 16, 2009 at 12:19pm — 3 Comments

Christine (Airyn)

Need to catch up

Been a while since I came to the site..been so busy with work and school. I miss you all!!

Just a quick update, Airyn is scheduled to have mastoidectomy surgery on her right ear next week. We were trying to avoid it, but it seems the only cure for her constant ear infection.

Also..I'm looking forward to possibly still attending the reunion in St. Louis. I have to decide quickly if I'm going to still go. Honey has to go to work in Bologna, Italy for 3 weeks (his company's main factory is there)… Continue

Posted on May 7, 2009 at 5:27pm — 1 Comment

Christine (Airyn)

Busy last few weeks and updates.

Just updating from the last post. It's been quite a December...quite sad also. First off, my mother's husband passed on Dec. 3, so I took time off to go up north to his funeral. Then..the shocker. Ten days later, my sister calls me to tell me she found my mother in her apartment..she had passed away also. It's been quite a stressful, sad, busy month. I'm doing ok, just trying to get life back to normal.

Our Christmas was quite busy, not a big one, but at least everyone got gifts. The poor econo… Continue

Posted on December 31, 2008 at 1:00pm — 8 Comments

Christine (Airyn)

Reflux medicine

Well....Airyn will now be on Zantac from her GI. She has not shown any physical signs of actually having relux but her new GI says she does it for all her kids to protect their esophagus. From the past, Airyn has always had vomiting issues prior to her partial adenoidectomy so I am sure there is some irritation. She also said this may help her feeding issues, making it less painful to swallow if there is some irritation.

I'm a member of a couple online yahoo feeding groups and it seems alot of… Continue

Posted on December 12, 2008 at 10:03am — 6 Comments

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At 12:04pm on November 13, 2009, Kelsey/ cammie said…
Hey Christine

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 8:49am on October 14, 2009, Schrader said…
yes thank you he is doing well yesterday he play piano with his feet (video come later )

is her name airyn or christine how is she doing
can she sleep at night ?
At 10:32am on August 20, 2009, Noelle & Nasaya Coleman said…
Lol....yep everything the drs do is too cool......I agree too much time in hosp(drs) office. Glad 2 hear that Airyn is doing well.....Nasaya has eaten two bowls of oatmeal raisin this week....I just been feeding her one very small portion a day bcause she is still just 4mths old but she's eating very well and starting to fuss if I don't move fast enough.
At 2:06am on August 19, 2009, Noelle & Nasaya Coleman said…
Thanx 4 comment.....Her swallow study went well yesterday....I started her on oatmeal cereal and she ate very well....no spitting up afterwards as well....She's doing well.
At 9:02pm on May 29, 2009, Antonia said…
Hi Christine,
I think that Gerardo is very similair to your daughter because all of his therapists think that he is capable to walk but he needs motivation too. He likes to cruise around and he's able to walk by holding on by one of his hands. So we're just hoping one day soon he'll suprise us.
At 3:07pm on May 29, 2009, Luis, Speshelle, Kennedy and Zoe said…
lol i remember ur post about tantrums a couple months back..Im happy she is communicating but sometimes i feel like " hey girl stop trying to boss me"..Right now she is sitting on my lap while i type and she is complaining!...Such a sweet girl can turn into a little stinker in a split second.


Whats the trick you guys use for getting Airyn to stand???I would love to know..( wow now she is getting so upset im typing she is lifting her shirt over her head whinning)..anywho..While Kennys in her jumper i lock her knee's for her..I am hoping to get the stander and the gait trainer..we are still working on crawling..she much rather scoot or wiggle her way to the position she wants to be in..but im not giving up.

How is airyn and her oral feedings going? Kenny's Speech therapist gave me a tip and it has been working soo well..we add spices to her foods now and she loves it..I add garlic powder to her veggies and meant..cinamon to her fruits..i even add nutmeg to stuff..i will try teriyaki soon..not too much because its sometimes to salty for me..but just a heads up if you havent tried these things..
At 11:23am on May 29, 2009, Antonia said…
Thanks for the coment,I 'm having the same worrie about transportacion,he dosent'n walk yet, I tink he will need a weelchair, I have appoiment on monday to know the classrom and the teachers and I will ask more cuestions. but I'm really worry and sad, but I tink it's the best for my son.
Take care.
At 5:48pm on May 7, 2009, Kelsey/ cammie said…
Next year we are going to have a medical conference in Philly and Dr. Krantz will also be there. So if that fits in your schedule better. We will miss you but we know how it is.
At 4:05pm on May 7, 2009, Kelsey/ cammie said…
Christine,

Just a reminder if you are still able to attend the family reunion next month we need a form filled out for dinner count and filling Dr. Krantz meeting times.

Under forum/family reunion than click on the attachment, You can email this back to me or send through the mail.

Thanks Cammie Hope to see you all there.
At 8:44am on April 10, 2009, the zanes said…
Happy Birthday!!!
 
 

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