Vol1:Issue5 June 2005
|
PKS: The Unknown Syndrome
Congratulations to Pam and Holly on the completion of the PKS book! Getting it published may be a bit of a battle. If anyone knows of an agent or has any literary connections, please contact Pam or Holly. To make a contribution assisting in having the book published, please contact Pam for more details.
Holly: Hollsjazzy@nycap.rr.com
Pam: infantsol@yahoo.com |
Equipment
Have you heard of the TheraTog Suit? One family in the PKS Support Group has had very good luck with it!! It is similar in looks to a wet suit and helps to stimulate the wearer’s muscles. According to the website “TheraTogs can help anyone with movement, stability, mobility or developmental disorders.” Check out this website: www.theratogs.com. They offer a lot of information, including a many excellent testimonials, medical information; they even offer professional in-service sessions and training videos. A mother with a PKS child said she’d be glad to answer questions about using the TheraTog. Feel free to email Roxanne at roxannegarrigus@earthlink.net
|
|||||||||
|
In Memory…
…of Clayton VanLaningham who became an angel on February 3, 2005. Blessings and prayers to his parents and family.
…of Samuel Goodwin who also passed away several months ago. May his family feel the love and prayers of all. |
Toys for Special Needs Children:
Here are some links to websites for Toys for Children with Disabilities
www.beyondplay.com (The Wacky Stick is a lot of fun!)
Write or call these companies for a catalog:
|
|||||||||
|
Special Concern: Hearing |
||||||||||
|
Hearing and hearing aids. Loss of sensorineural functioning is a common trait with PKS. Many of our children have hearing loss. Recently there was some discussion on the board about hearing aids and also whether or not a child’s diagnosis would improve or worsen. 3 mothers replied that as their child grew, their child’s hearing improved to the point where hearing aids are no longer necessary. Tips for improving the wearing of hearing aids include:
|
||||||||||
|
|
||||||||||
|
Donations to the PKS Foundation: |
||||||||||
|
If you’ve been on www.pksonline.org, you’ll notice that there is a link to make a donation to the PKS foundation. All donations sent to this foundation go to the maintenance of the PKS website, publication of the PKS book and also the set-up of a PKS foundation to help meet the needs of all PKS families. Perhaps a friend or family member is looking for a good way to help or wants to honor a child in this way! |
||||||||||
PKS Support Update
,
cont'd
Vol1:Issue5 June 2005
|
Special Links for PKS:
http://groups.yahoo.com/group/pks_support/
|
PKS Poll:
How old was your child when he/she started to talk:
1-2 Years 3 replies 2-3 Years 2 replies 3-4 Years 0 replies 4-5 Years 1 reply Does not talk yet 19 replies
This poll is one of many created in the PKS Support Group on Yahoo. To become a member, send an email to pks_support@yahoogroups.com |
|
|
As long as one keeps searching, the answers come. - Joan Baez, Folk singer |
||
|
Hurray!
Let’s hear it for Pam, Marion, & Dox and Holly & Kayla on their TV debuts! Both families had an article about PKS and their child in their newspaper as well as being featured on their local news. Spreading the word about PKS is a great thing!!
|
||
|
Vinny is a precocious 2 year old who lives in New Jersey, but is right across the bridge from Philadelphia where he sees most of his doctors. Although there have been a lot of struggles to get Vinny the care and tests he needs, just lately he’s been able to start at a daycare/school that is run by RN’s. He also gets nursing care at home for most days of the week.
Vinny is on oxygen ‘round the clock. He uses a wheelchair right now but is learning to stand on his own already!! GO VINNY! He likes to eat fruit, yogurt, and tapioca and is on stage 2 foods.
Vinny loves music and loves to dance along. His favorite shows are Barney and Baby Einstein movies. This little boy ADORES Usher. How many 2 year olds do you know who love Usher??? He loves to sing along with his songs. |
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
Web Sites of real PKS kids:
http://www.leona-ev.de/berichte/kerstin.html
http://ambersitetx.tripod.com/index.htm
http://www.pk-syndrome.org/Phil.htm
http://www.pk-syndrome.org/cases.htm
|
|
|
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa aa
Spotlight on Vinny, con'td
Besides his wheelchair, Vinny uses a corner chair, a stander by Jenx and a bath ring.
Vinny loves hugs, is the best kisser his mother knows (sorry Tim!) and loves his stuffed Snoopy dog!
Dana is trying to get a conference together for all PKS families who can come. It will likely be spring 2006 in Philadelphia. What a great opportunity for all our families! Thank you Dana!
|
Vinny’s family includes his mom Dana, dad Tim and older
brother Angelo who is 3. They all wish they had a cat at home.
