May Happenings

Hello Everyone,

Lots of stuff to update you on...Jayden is all registered for Kindergarden next year...Time flies so fast...She goes with the rest of her class for a half day May 22/09 & she also gets to take her first bus ride...Should be fun!!!So far,surgery has been held off on Jaydey's eyes..Although the appointments keep getting closer & closer...Trying to get a window of opportunity to do surgery.The way it works,is that they need her eyes to stop changing to get an accurate measurement to correct them properly.I keep holding out all hope that they get strong enough on their own to avoid surgery..The first one was horrible for us to see and for her to go through.Her eyes keep getting a little bit stronger each time,so they cannot operate till they stop changing...Paul & I are asking for the Lord's will to be done of course..But we could really use all your prayers in this matter..

Jaydey also has been selected to have an assessment done of her capabilities(understanding,physical needs)to get her a device to help her communicate with us and others..We are so exited!!!What it would be to hear her say Mommy,Daddy & make everyday simple requests...It is something I know I used to take for granted with her brothers...To know she will be able to express her feelings,and desires..Oh what a day that will be!!!There was a huge waiting list..Up to a year..But she got in really fast..Sometime in June.We were also dreading the long trip to Fredericton,as the assessment would take all day..But it seems they would prefer to do it right at home!!!Very pleased with this decision..

Thank you everyone for taking the time to read these entries...It means the world to Paul & I that you love our "Angel"much as we do...We ask that you join with us and continue to pray for her...As you can see,God is Listening!!!

God Bless,

Paul,Kimmie & Family...

Lots Of News!!!

Hello Everyone...

Jaydey is adjusting extremely well to daycare 5 days a week.She now has her new red wheelchair.Just waiting for the fitted tray to come...This helps us get her around so much easier because she has out grown her stroller...As well as keeps her back an pelvis at the proper alignment so she will build her lax muscles the proper way and to prevent hunching over..The tray is great because we can sit her in this when she begins kindergarden next year..It will be her desk...

She also has recieved her new set of braces to keep her knees & ankles straight...this will help her build these muscles properly and make standing alot more confortable...

We have noticed in January that Jayden's vision has not changed...Which is not the outcome we were hoping for...Since she has turns in both of her eyes...The doctor's are waiting till the eye stops changing so they can get proper measurements to do surgery on both eyes...Jayden's eyes have always slowly improved...So we held out hope of having no surgery as they were slowly strengthening all the time with each visit..If her eyes remain the same as the last visit then in April we book surgery...Paul & I are asking for prayer from you all on this matter...

Thank you all & God Bless you and your Loved Ones...

Merry Christmas Everyone!

2 more days to Christmas Eve....Jayden is so exited this year...You even mention Santa Claus and she squeals with exitement!I'll fill you in on what has been going on around here..Jaydey has finally got her wheelchair.She is learning how to play the baby leap frog video game which attatches to the DVD player..She follows the simple comands like more and push the buttons.Her reaction is a little delayed but she really enjoys it and almost always hits the button when asked to.She has new braces that she was fitted for before christmas.They should be ready quite quickly.These braces will not only keep her weak ankles straight and allow the muscles to form around the ankle bone properly,but they will go right up to the back of the knee to help support her the floppy muscles there as well.

Lastly,and most importantly,from all of us here at our house & Jaydens World,we would like to wish you all a very Merry Christmas and a safe & Happy New Year!!

God Bless all of you,

The Bevans Family XXOO

October Journal...

October has begun,and the weather is cooler.Lot's going on this month..

Jayden is doing quite well in her pre-school class at Lisa'a Playhouse and enjoys going five days a week.Next week is kindergarden registration.Physio Therepy has put in an order for new braces for Jayden's ankles and legs.These braces will not only help support her ankle,but her legs as well.We are had a few setbacks with ordering her wheelchair.The chair was supposed to be here in September,but it still has not arrived.Hopefully any day now.Occupational Therepy has been working with Jade,trying to get her using some button devices that encourage responses from Jade when asked questions.These buttons can be used with TV and DVD,computers,toys,and so on...She is showing signs in understanding basic commands like more,hit the button.This is so amazing and verifies what Paul and I always knew.She understands everything that is said to her.Know we can focus on giving her as many ways to communicate with the outside world.To understand her capabilities Occ.therepy has purchased a leap frog game that hooks up to the dvd player and tv.They chose this game because Jayden loves TV and pays very close attention.Though she is delayed at answering the commands like more or hit the button,she does respond to the prompts.I was so exited for her!Jayden's World Website has now reached 35,700 hits to date.The response to her site is overwhelming.We have been contacted by many parents dealing with CdlS.We love to here from you all.Your guestbook entries,prayers,emails keep us going and let us know we are on the road to brighter days.Thank you for visiting,helping us raise awareness by spreading the word about Cornelia de Lange Syndrome.Paul and I feel truely blessed to have made such wonderful friends....

God Bless,

The Bevans Family.

(Paul,Tyler,Adam,Myself,and of course,Jaydeylady..)