A Forum For Those Touched By Pallister-Killian Syndrome
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Bec Paton
- 35, Female
- Ballarat
- Australia
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Bec Paton's Discussions
Magic Bullet mini blender
Replied Oct 10
Magic Bullet mini blender
Replied Oct 10
Bec, Tim, Sarah (PKS) and Hannah
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Latest Activity
I can only imagine the mountain of paperwork that must have taken. You are amazing Cammie! Thanks so much!
Hi Maria, Our Sarah does not have any language but she does babble a bit "mumumum" "dadadadad" "nananana" etc. Sarah seems to enjoy the company of other kids but does not give much eye contact. Her little sister Hannah is great with her - she make...
Hello everyone!
Our little baby turned 2 yesterday. Thanks to generous relatives, she now has a doll with its own pusher, highchair and even a little timber kitchen to cook Dolly's food. It is such a joy to see Hannah pretending to do all of thing...
Hi Maria,
We are in Australia. Our Sarah will be 4 in January and she sounds very similar to your Karla. Some days she is very constipated and other times it is quite runny. Similar with eye-contact too - she has improved a little but we are lucky...
Seriously, we should approach the makers of Magic Bullet and of Bumbo Seats and ask for sponsorship!
Profile Information
- What is your child's name?
- Sarah
- How old is he or she?
- born 6th Jan 2006
- At what age was your child diagnosed with PKS?
- September 1, 2006
- How long ago was the diagnosis?
- ages
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Hannah is 2
Hello everyone!
Our little baby turned 2 yesterday. Thanks to generous relatives, she now has a doll with its own pusher, highchair and even a little timber kitchen to cook Dolly's food. It is such a joy to see Hannah pretending to do all of things I still do with Sarah. When I give Sarah a bottle, Hannah gives Dolly one too. Soooooo cute!!! It is all so amazing to us to see "normal" development. I do feel lucky that Sarah was our first bub though, we didn't really realise how much more effort s… Continue
Our little baby turned 2 yesterday. Thanks to generous relatives, she now has a doll with its own pusher, highchair and even a little timber kitchen to cook Dolly's food. It is such a joy to see Hannah pretending to do all of things I still do with Sarah. When I give Sarah a bottle, Hannah gives Dolly one too. Soooooo cute!!! It is all so amazing to us to see "normal" development. I do feel lucky that Sarah was our first bub though, we didn't really realise how much more effort s… Continue
Posted on October 18, 2009 at 1:58am —
Nic and Terzita (Alessia's parents) meet Sarah
We had a fantastic day today! Nic and Terzita came to Ballarat for a visit on the last day of their holiday to the far east (a long way east of Perth anyway!). Although Alessia and Sarah have many different challenges, there are also many similarities. It was just fantastic to meet another family in person. We shared stories of diagnosis, photos, videos, discussions about equipment, therapies and just life in general. Sarah had lots of lovely cuddles with her PKS Uncle and Aunty. I will upload s… Continue
Posted on September 12, 2009 at 6:47am — 3 Comments
wheelchair progress
Hi everyone,
over the last couple of weeks Sarah has tried out a couple of different wheelchairs for which we will be getting quotes.
The first was the "eclipse" which was very sturdy and the cheaper of the options. ( http://www.ilcaustralia.org.au/home/search4.asp?State=SA&MC=43&MinC=29&Item=4237&page=13 ) . It has tilt-in-space and lots of seating options.
The second was the Quickie Zippee Iris (as some of the other PKS kids have already) which has a better tilt system and mo… Continue
over the last couple of weeks Sarah has tried out a couple of different wheelchairs for which we will be getting quotes.
The first was the "eclipse" which was very sturdy and the cheaper of the options. ( http://www.ilcaustralia.org.au/home/search4.asp?State=SA&MC=43&MinC=29&Item=4237&page=13 ) . It has tilt-in-space and lots of seating options.
The second was the Quickie Zippee Iris (as some of the other PKS kids have already) which has a better tilt system and mo… Continue
Posted on July 17, 2009 at 11:58pm — 2 Comments
Brief Update
Sarah has been going really well lately. She seems to be getting stronger and seems a bit more alert with her hearing aid.
Right now she is in the local hospital on IV fluids as she, Tim and Hannah all have gastro. All 3 are getting better but I have washed enough vomitty sheets/clothes/towels for a lifetime! So far I have managed not to get sick but I will be very surprised if I get through the week unscathed. Hannah is awful when she is unwell - makes me appreciate how placid Sarah is.
Right now she is in the local hospital on IV fluids as she, Tim and Hannah all have gastro. All 3 are getting better but I have washed enough vomitty sheets/clothes/towels for a lifetime! So far I have managed not to get sick but I will be very surprised if I get through the week unscathed. Hannah is awful when she is unwell - makes me appreciate how placid Sarah is.
Posted on May 26, 2009 at 7:17am — 4 Comments
Hannah takes her first steps
Its been a long wait but I finally have a child that can walk. She has only taken a few steps so far but it feels so amazing. Life with Hannah has been a real learning curve for us. We had the baby bit down pat because, lets face it, Sarah is still a baby in so many ways. Now we have a toddler too.
It has been a tough time with 2 little ones but it is so great to experience these milestones like other parents do. It is also helping me to see what I can do to help Sarah - just seeing the order in… Continue
It has been a tough time with 2 little ones but it is so great to experience these milestones like other parents do. It is also helping me to see what I can do to help Sarah - just seeing the order in… Continue
Posted on February 4, 2009 at 5:49am — 9 Comments
Comment Wall (44 comments)
- At 12:23pm on November 13, 2009,
Kelsey/ cammie said…
- Hey Bec
Hope everyone is doing fine.
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 4:44pm on October 19, 2009,
Anna Randell said…
- Happy Birthday!!! YEAH!
- At 4:11pm on October 19, 2009,
Maria Pederson said…
- Hi Bec
Thank you for your welcome:-)
Oh you daugther looks so lovely, and happy, the most important things in life:-)
Karla loves also toys that bliks, makes sounds, vibrates and so. She is also normal very happy, but her energy level is very different from day to day. Is Your little girl able to use some kind of a langue? Does she have any seizures? The other lovely little girl on your pictures, is that her sister, and is she interrestet in her or other children? I am so curious to hear about other children. Have a nice day. All the best to you from Maria
- At 11:54pm on September 13, 2009,
Luis, Speshelle, Kennedy and Zoe said… - OMG BEC!....Your girls are really growing. Im literally in tears over here seeing Sarah she has grown soo much and Hannah is a big girl now too!!!! SO beautiful.
- At 6:01am on September 3, 2009,
Barclay family said… - I'm so glad they are of help. Best of luck with all that is involved with the whole process. It will make life easier for everyone once she finally gets her chair and you get the van. Lexi has really likes hers and it has really helped with her interaction with the family and her friends and since she has such trouble with her hips popping out it has been easier for her with so many less transfers (not to mention it's easier on me)
- At 3:05pm on September 2, 2009,
Ivy Ashby {Grandmother} said… - Hi Bec he now has his bottle without the fattener/thickener so thats a good thing he is also trying solids as well. how is your wee girl doing every day i go on the webpage and read all the comments parents leave for the children and the support is great. by the way kassicus gets his hearing aids in 3 weeks i think it will help him talk quicker. mind you he still no how to push his parents buttons i think thats great cheers for now NANA Ivy
- At 3:25am on August 19, 2009,
Julie Hepi (Kassius Hepi) said… - hi bec
i was looking through the members and you wouldnt believe what i found! a new member in new zealand....she not only is in the same country as me, but in the same town! how freaky is that? kassius is doing good. hes gone from being under weight to being too fat. we are going to the hospital tomorrow for the 4th try at a hearing test, under sedation. i dont think he likes have tests done because something always happens to stop the test happening. he did the same thing for the eye specialist. the specialist tried to get him to follow objects, but he just ignored them...and he follows things all the time at home. i think he's having them on. so hopefully tomorrow he will cooperate!
- At 3:09pm on August 4, 2009,
tracy ayres said… - im glad all is ok your end bec.
its really good that sarah is progressing slowly but surley,and that her and hannah are getting on well.
on saturday we had a picnic to meet some of the uk families here,and the children all had different severities of pks,and it was amazing to see how differently it affects different children.
we even had a lady called nikki come with her son jake who is 20 yrs with pks , who is not a member of this site,but had heard we were having a picnic,and thought she would come along and see us.
there is a photo of him on my page with others from the day.
take care.
tracy xx
- At 2:51pm on August 3, 2009,
tracy ayres said…
- i bec,just wondering how you are all doing?
love the new photos of the girls.xx
- At 7:29am on August 2, 2009,
Abby Westover said… - I have found myself saying the same thing alot to other parents! There are so many similarities...especially between Gracie and Sarah! It must be the blonde hair!!
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