A Forum For Those Touched By Pallister-Killian Syndrome

tracy ayres 39, Female suffolk United Kingdom: Share

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harley-jaes page

i am starting big school tommorow....... Sep 9

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Gretchen & Simon left a comment for tracy ayres

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Krystal N Foster commented on tracy ayres's photo '016'

aw he looks like a good helper

October 4

Krystal N Foster commented on tracy ayres's photo '057'

beautiful picture~

October 4

Krystal N Foster commented on tracy ayres's photo '083'

what a cutie, i love those glasses!!!

October 4

tracy ayres commented on tracy ayres's photo '091'

maybe a future career??????

October 2

tracy ayres commented on tracy ayres's photo '086'

brandon was not in the photo taking mood that morning!!!!

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Profile Information

What is your child's name?: harley-jae

How old is he or she?: 4 years

At what age was your child diagnosed with PKS?: January 15, 2006

How long ago was the diagnosis?: 3yrs

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Tracy ayres's Blog

english pks study

just wondering if anyone has had any feedback from the pks study yet??????

Posted on September 9, 2009 at 4:50pm —

hj is doing really well with the eye drops.he lets me put them in fine,although it is a bit weird seeing his pupil in his right permanantly dialated!!!!
have also had to buy him new glasses today as when i went to get him out of his cot this morning he had totally ruined his new ones.they were mangled beyond repair,and i have only found one lense so i dont know where the other one is !!!!!
the optitions were laughing and said that they had not seen a pair in such a bad state.!!!!
so he is having… Continue

Posted on August 29, 2009 at 10:48am — 1 Comment

eye clinic

had appointment today at the eye clinic because the doctor was worried about the demise of hj's vision at the last appointment in june.
the doctor today said that it had improved in both eyes by one line,but its still not where it should be and his left eye is very weak.
so we were given ATROPINE eye drops that we now have to put in his right eye every day(which will make vision through this eye blurred}so that the left eye will have to start working more.
i have to but them in in the morning to… Continue

Posted on August 20, 2009 at 5:02pm — 4 Comments

update!!!

hj had his eye appointment on monday and his left eye is definatly not working very well.he has been given new glasses that we got today(and the lenses are so thick i didnt realise just how bad his sight is) and he has to go back in a couple of months and be re checked,and if it still seems bad they are going to put some kind of drops in his right eye which will make that his weaker eye so that hopefully his left one will start working harder as they said an eye patch wouldnt work because of his… Continue

Posted on June 17, 2009 at 5:59pm — 6 Comments

nursery saga!!!!!!!!!

hi all,have had a meeting today with the senco and the headmistress of hj's mainstream school and it has been decided that hj will do a split placement from sept 09 going there monday and tuesdays and his normal playgroup the other 3 days ,increasing when we think is neccessary.
he hopefully is getting his own teaching assistant who will also start visiting him at the playgroup too.
the headmistress was very accomadating to his needs and has said she will even get him a little bed and duvet for… Continue

Posted on June 5, 2009 at 3:30pm — 2 Comments

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At 7:34pm on November 8, 2009, Gretchen & Simon said…: I'm glad it all got there safe and sound! Enjoy :)

At 6:47pm on September 9, 2009, Gretchen & Simon said…: Hi Tracy! I'm embarrassed to say that our intent was to send you a package of bracelets and pens to share at the UK meeting. However, Jake Zane spent about 10 days in the hospital and Mike didn't get the package mailed. So, I apologize! I wish we could've gotten it to you.

At 2:22am on August 6, 2009, Luis, Speshelle, Kennedy and Zoe said…: Hey Tracy,

They both are balls of fire!..Kennedy is showing her little sister how to be a princess and by princess I mean bossy..but I can honestly say the both of them just melt my heart together..im tired but they make it worth while..Kennedy's personality is just too funny these days..i call her kenable letor like Hannibal she grabs ur fingers and eats them and won't let go..lol I have to watch out for Zoë lol

At 6:14am on August 4, 2009, Sally-Anne Wilkinson said…: What you talking about ? You've got some fantastic pics :)

What a great day, eh? I'm still knackered from the weekend though!

At 4:07am on August 4, 2009, Natasha Goodman said…: Hi Tracy
Thanks so much for organising Saturday, it was brilliant, just sorry I didn't get a chance to talk to you.

It really made me feel part of a group rather than like an outsider. any other gatherings you organise Ranulph and I will definitely be there.

Hayden is amazing, seeing him running around makes me hold out a little bit of hope that Ranulph will be doing the same one day

Natashax

At 11:43pm on August 3, 2009, Bec Paton said…: Hi Tracey!
We are all ok here in Australia. Next week Sarah will be trying out another wheelchair before we decide which will be best for her. On Friday we are heading to Melbourne for a cleft surgery review, visiting a respite centre and looking at some modifed vans.
Sarah is progressing slowly. She is a lot more vocal now she has her hearing aid and she seems more alert to us and her surroundings.
Hannah is amazing and can do so much so easily - the contrast is quite stark - but we do enjoy watching her sing and dance and she is now starting to do things to make Sarah laugh and that is just beautiful.
hugs, bec.

At 4:21pm on August 2, 2009, Vania Vincer said…: Hi Tracy, thank you so much for organising our event. It was great to meet all the other families. It was hard to get round to speaking to everyone ! We look forward to next years!

At 1:50am on July 31, 2009, Sally-Anne Wilkinson said…: And here's mine: 0791 9915552

At 9:55pm on July 30, 2009, Abby Westover said…: oh, i know what you mean about the similarities. i find myself looking at different pictures and thinking how much the other child looks like Gracie...or thinking "hey, Gracie does that too!"

At 4:10pm on July 26, 2009, Sona said…: Hi Tracy

I have been looking forward to the PKS reunion on 1st August. We will be there. Can I confirm that it'll be in Hyde Park, London, at The Lido c noon?

I believe Sylvie will be there will Emilie too.

I guess we bring a picnic and an umbrella!

Look forward to meeting everyone, especially our children!

Sona