A Forum For Those Touched By Pallister-Killian Syndrome
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Julie Hepi (Kassius Hepi)
- Female
- Whangarei
- New Zealand
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My girl hates tummy time too and because Mommy gives in to her crying so easily, I rarely gave her tummy time. As a result, she has a pretty flat head. I feel so bad, can't do anything now, she's almost 11 months.
Love the names; Rome and Kassius---they are precious. This picture caught my eye in particular; i have a picture of Alex around this age, as Kassius, and the resemblence is remarkable--i need to post it so that you can check it out!!
What a precious little thing!! Don't pictures like this make you feel like the happiest mom ever? He is absolutely adorable!
Profile Information
- What is your child's name?
- Kassius
- How old is he or she?
- 3 months old
- At what age was your child diagnosed with PKS?
- March 13, 2009
- How long ago was the diagnosis?
- 2 1/2 months ago
Julie Hepi (Kassius Hepi)'s Photos
Comment Wall (15 comments)
- At 9:40am on November 13, 2009,
Kelsey/ cammie said…
- Hello Julie
My name is Cammie Gray I am a parent of a PKS Kid and a board member. 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 4:15pm on August 25, 2009,
Wendy Smith- Kassius Coordnator said…
- Morning Julie,
I hope your meeting with rachael from CCS went well yesterday. I also hope that Kassius and Family are all well at the moment. I will give you a call in the next couple of days. If you wish to email me directly my address is wendy@drcnorthland.org.nz
Regards
Wendy Smith
- At 6:21am on August 19, 2009,
Bec Paton said…
- Hi Julie! That's amazing you have another PKS family so close to you - I am jealous!
Sarah was difficult for her early hearing tests too. Even now we dont really know how much she can hear. What we do know is she has at least some hearing and she is louder and more vocal now she has the hearing aid.
As for tracking objects, Sarah was always better at it when none of her therapists were looking!
It sounds like Kassius is doing well now. Remember that the development can be stop/start. Sarah seemed to not develop at all between her 2nd and 3rd b'days but has improved heaps since she turned 3.
I will have to check the new members in case there are some near me!
Cheers,
Bec
- At 5:55am on August 19, 2009,
Ivy Ashby {Grandmother} said…
- Hi Kassicus,you are my very special little man NANA
- At 1:39pm on June 3, 2009,
Luis, Speshelle, Kennedy and Zoe said…
- Welcome Julie and Kassius..Kassius is such a cute little baby!!
- At 5:19pm on May 31, 2009,
Tom Amber and Shelby said… - I know exactly what you mean!!! No one in Shelbys medical team has heard of PKS so they all just assume the worse because of what they read! All we can do is believe in our kiddos and push them to do everything they can!! And also do whatever we can do spread the word on PKS! I am so glad you have found this site. It has brought me and my family SOOO much joy and peace of mind! Can't wait to watch Kassius grow and change and LEARN and PROVE THEM ALL WORNG!!
Hugs and Kisses to little Kassius
Amber and Shelby!
- At 6:12am on May 31, 2009,
Nic, Terzita, Adam & Alessia Acquarola said…
- Hi Julie! I pressed the wrong button and my message didn't send. Welcome to both you and Kassius - a real cutie! As Bec has already mentioned this is a great site with lots of wonderful people and support. Hope you find it helpful. I reckon you'd be closer in distance to Bec in Victoria than what we are here in WA (lol)!!!! Cheers
Terzita x
- At 10:45pm on May 30, 2009,
Bec Paton said…
- Hi Julie! Great to see you on here. As you have probably realised from the comments you have received already, these people are fabulous! I get great support from here and I'm sure you will too. Feel free to join the Aussie group - New Zealand is really just another state of Australia anyway (hahahaha!) ;)
Big hugs,
Bec
- At 5:57pm on May 30, 2009,
Philip D Pallister said… - Julie,
The X-ray comments suggests that the bones mentioned are not yet developed for age - gracile just means thin or slender and the vertebral bodies seem to be not yet mineralized well?. Development here should pay attention to nutrition and exercise (pysical therapy).
There is at least one person with PKS (Melody Haven) who has college credits) and I have met several who are active and sociable and speak well. The literature fills up with the worst cases first since they are called to attention of doctors etc first (called bias of ascertainment). Each child is unique and should so be considered.
Keep in touch.
Old Phil
- At 3:51pm on May 30, 2009,
tracy ayres said… - hi julia hj started walking just before he was 2yrs old and i believe that his talking has come along so well is by us teaching him sign language from a very early age. he comes out with so many new words now its unbelievable although not every one can understand him clearly though. i think the best advice i could give you is not to put too much pressure on yourself regarding what kassius is doing or not doing and just let him do it in his own time and you will be very surprised at what they can do.and if you are ever unsure of anything dont hesitate to ask one of us there are plenty of us here to help.xx
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