A Forum For Those Touched By Pallister-Killian Syndrome
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tracy ayres
- 39, Female
- suffolk
- United Kingdom
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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
tracy ayres's Photos
Tracy ayres's Blog
english pks study
Posted on September 9, 2009 at 4:50pm —
eye drops
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
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!!!
Posted on June 17, 2009 at 5:59pm — 6 Comments
nursery saga!!!!!!!!!
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
Comment Wall (59 comments)
- At 12:18am on November 22, 2009,
Sally-Anne Wilkinson said…
- Yeah fine, Tracy. How are things going with Harley at school? Has he settled in well?
- At 11:15am on November 13, 2009,
Kelsey/ cammie said…
- The option we are putting out to families is, either hold a fundraiser in your area or ask for general donations to support the trip. Or have a company sponsor your trip. This is all tax deductible because the money needs to be sent into PKS kids and then we pay for your travel expense to the conference. If this is something you would like to try let me know and i will send all the guidelines to you.
- At 10:13am on November 13, 2009,
Kelsey/ cammie said…
- Hello Tracy
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 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!
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