Jayden's World-Living With CdlS

Happy Thanksgiving...

2011-10-05T05:24:00.000-07:00

Well the Fall season is in full swing & our family is heading into Thanksgiving weekend.Last but not least..Jaydey turns the BIG 8 years old on October 29th!!!I have alot to say today everyone..LOl..So much to be thankful for!
Jaydey has made it through her first month back to school for grade 2.Her homeroom teacher is Mrs.Best-Godin.As well,she has made it through loosing her 2 TA's from last year..Shannon & Susan...This was difficult to adjust to the first week for her.It meant training 2 new TA's to take their positions.But she & the new TA's have adapted quite nicely & all is well in the world once again..
We have been working quite close with occupational therepy since the end of last school year on in home adjustments..Making Jayden's world more adaptable to her growing needs.Things like being more mobile & more self sufficient for herself as well as making the challenges of Jayden's growth & how we,as her parents(caregivers)are able to transfer her from room to room,in our home enviroment.
Occupational Therepy has conducted an in home evaluation & made their recomendations.This Friday they will be visiting our home with a specialist in this area to get the ball rolling...
Some of the suggestions made were:Getting her in & out of the tub safely for her & us..Her being able to maneuver around the home,ramps @ home exits,light switches & faucet alternatives,getting up 15 stairs to her bedroom and of course..transfering her & her equiptment(walker,wheel chair) to and from school,home etc.
Lots to think about...Lots of change happening.But I have too say..Since this "Little Angel" has entered our lives...This has become the norm.The changes will be good for her future & ours.Against uncertian circumstances & all that CdlS entails...I am confident for her!!!She has made me & everyone around her stronger & fearless...More able to accept change..
Thank you all for checking in on Jaydey.We really appreciate all your love,prayers & support.I ask that you continue...May you all have a BLESSED Thanksgiving Weekend with your loved ones!!
Check out all things Jayden @ Jayden's World.Pictures,websites,CdlS articles,etc here http://www.jaydensworldcdls.com/
Kimmie :)

HOPE IS IN THE AIR...

2011-05-02T06:36:00.001-07:00

It is that time again...Welcome!!!
I just want to thank you all for checking in on Jayden's progress...I know,I know...It has been awhile.Lots of NEW things have happened though since I last updated this blog.Jayden has got her surgery to correct her lazy eye.I am so happy to report that a Miracle has happened!!!!Jaydey's eyes are much better.Thanks to the surgeon,Dr.Steves in St.John.As a matter a fact..His exact words were...Beautiful!!!Wonderful!!Exellent!!!
Also..It has been 2 1/2 months since Jayden has been off Valporic Acid(for seizures).YAY!!!I cannot tell you how exited we are about this.No more having to give her un-necessary meds for things she does not need.It pained me to give this to her 3 times a day..She really hated it...Made her choke & everything..In fact...She is doing so much better being off the medication.She is more alert & even eating better...It seems we cannot fill her little belly...LOL.I just want to thank you all for your prayers & support.They mean so much to our Family.
At school,she has regained use of her right hand much better.She is also using picture symbols quite frequently to answer yes & no.Which is exellent.It allows us to communicate with her alot just by phrasing questions to her in that format.
I have special thanks to go out to the Staff @ AES for working with her everyday...(Mrs.Ravn for homeroom,T.A's Susan Pearson,Shannon Kimball,Tammy Mcknight,Mrs.Ross)As well as all those special helpers(students/classmates),physio,speech & occupational therepy that are with her throughout the day that make her feel welcome...Sadly we are saying good bye to Apse(Work with the blind & children with sight disabilities).Yet..This is another good sign..Because this means Jayden's sight has reached the best possible outcome.
Yes..We feel very blessed to have such a wonderful Angel for a daughter & a huge extended family over @ school & in our community...Such opportunities,blessing & miracles to learn & grow for our family & whole community...
My Faith & Hope is greatly renewed & enriched each and everyday..
God Bless you all...Till next time everyone.

The Possibilities Are Endless!!!

2010-11-27T07:22:00.000-08:00

What an Awesome End to 2010!!!!
So much has happened for Jayden & our family.Lots of news & updates.Jayden is now finishing off her first half of Grade 1 in Mrs.Ravn's Class.She 3 TA's helping her @ different times of her day @ school are Shannon Kimball,Susan Pearson & Tammy Mcknight.They are so wonderful with her.She just lights up each day when she sees them all.Jayden has been in class this year much more with the other students.She is adjusting extremely well.She loves circle time & when Mrs.Ravn reads to the class.Main focuses in grade 1 will be communication,promoting walking & giving Jayden more independence/social interaction with her classmates.
Stan Cassidy from Fredericton has been down to do testing with Jayden.We are very exited about this.We have learned(Paul & I always Knew),That there is an intelligent person inside of Jayden.She can now answer you with Yes/No Symbols & pictures.Stan Cassidy has also tested her with pictures & switches that would say yes & no vocally for her..
I Knew she understood!!!But now the rest of the world knows and has evidence of this.Which is a wonderful Miracle!!!For her to be able to communicate with us & her outside world..She will be able to interact with the children in class.And they are learning this right along with Jayden...What an opportunity!!
Jayden has also finally had her eye surgery this September to correct her lazy eye.It looks much better.But it is still there somewhat.She had a really hard recovery.It is because of this,Paul and I have decided not to put her through another one...The doctor said it really would not improve the vision that much.So I assume it is more of a cosmetic procedure.So she will not be having anymore.We love her just the way she is..
Thank you all for checking in on Jayden & our family.It means the world to us to know you all care for her so deeply..Till next time everyone!!!
Have a Merry Christmas & a Wonderful end to 2010!!!
God Bless,
The Bevans Family xxoo

Light @ The End Of The Tunnel..

2010-04-10T07:52:00.000-07:00

Wow...

It sure has been awhile.I hope you are all well.Lots of exiting things happening in the WORLD OF JAYDEN...lol.

She is doing very well at her new school(AES).So many wonderful things have opened up for her.She is using a computer very well.She can build themes,read stories,choose the background & colors on her computer when asked to with simple commands.She has been given many chances to explore her world & communicate in different ways(Picture symbols,computer,choices etc).So many wonderful opportunities for her to learn,grow & have a chance at a "normal life".Jayden has begun trips out on her own once a week "asssisted"with Fanie Mazzerole.She goes out shopping,to restaurants,walking,and this summer will be doing alot of swimming @ the pool I'm sure of it.

Yes,our family is growing to include alot of really great people...Jayden's life is greatly enriched.I just want to end this journal by saying,thank you!!!Thank you to,Mrs.Bettle(Principle),Shannon (TA),Angie(TA),Tammy(TA).As well as physio,speech,occupational & APSEA...You are all very wonderful & vital to our Daughter,Jaydeylady.We love you all Lots!!!

UPDATE!!!Jaydey Has finally got her own little friend as of Easter.She is a toy Shitzu named "Coco".Just wanted to add a special thank you to Auntie Doreen for finding the perfect little friend for her.As well as a special thank you to Grammy & Grampy Bevans for purchasing the cute little pup for her as an Easter gift.You have made your Grand daughter VERY,VERY HAPPY!!!!!

Well..That is all for now everyone...Thank you for visiting Jayden's World for a moment to check up on her progress.

Love Paul,kimmie & Family xxoo

September/Back To School

2009-09-24T08:37:00.000-07:00

Well Jaydey has started @ her new school(AES)..Still adjusting a bit..But it went extremely well..She just loves all her teacher's.She has 3 TA's this year...1 for the Morning.1 for the playground,& 1 for the afternoon..As well..She gets visits @ school now for APSE,physio,occupational & speech...The kids just love her...& she enjoys all of them...She gets to use her walker a whole lot more...As the hallways & classroom are much bigger..Plus she gets to trek around the Gym for Phys.Ed...

August Journal...

2009-08-21T07:20:00.000-07:00

Lots of exiting things happening lately...

Jaydey is almost ready for her transition from daycare to Kindergarden...We are exited for her,a little nervous about her growing up so fast & sad we will be leaving Lisa's Playhouse...We are gonna miss the valuable,loving,tendercare she recieves from Lisa,Bertie,Erica,Ann,Marit & Jessica...Thank you for your loving care towards our precious Angel...

We have all of our Hanna Montanna bought for school Sept 8th...We are exited that Jaydey will just walk out our yard across the street to Kindergarden everyday..NO MORE DRIVING 5 days a week...Lol..

Jaydey has started to use picture boards to help her communicate...When we talk to her...We point to the picture on the board pertaining to the object,person,activities,places & even the weather conditions...She is recognizing them.We have them in each room..and the back seat of our van as well....It is our hope with encouragement & everyone else using these Picture boards...She will be able to initiate the communication...She is a very smart little girl...When you spend time interacting with her..You realize she knows everything you are saying...Funny thing happened the other day..Paul & I were talking about her most Favorite activity in the world...We decide we would spell it because she gets quite anxious/exited when you are trying to get her ready for this activity...So I spelled P-O-O-L.She all of a sudden became very still,started to get very exited and said..ah-huh...Lol..We were AMAZED!!!She has done this one other time..With the word ICE CREAM..Her Favorite...Just to look at her & meet her for the first time...Everybodies first thought is that she cannot communicate..So why bother to talk to her or teach her...This saddens us deeply.How alone they must feel..This is why Jayden's World was created...So she & others like her would be understood & accepted in our world..Not passed by..Overlooked,un-wanted...Paul & I..Plus all of our family want to thank you for your many prayers & support with posting her link everywhere,your kind messages in her guestbook on site. http://www.jaydensworldcdls.com/

You give us strength & hope to continue on...You remind us of why we began this Journey...So Jaydeylady & others would be loved,accepted,and not alone here...

Thank you so much...

God Bless you & your loved ones..Hold Them tight.They truely are precious..

Kimmie & Paul Bevans

May Happenings

2009-05-14T15:57:00.000-07:00

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!!!

2009-02-25T06:45:00.000-08:00

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!

2008-12-22T07:21:00.000-08:00

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...

2008-10-08T05:04:00.000-07:00

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..)

Back To School...

2008-08-29T08:00:00.000-07:00

Hello everyone,

Well the kiddies are off to school next tuesday,and Jaydey is super exited!!!She starts five days a week...Two classes a week in pre-school to get her ready for kindergarden(new).Then three days a week with the small children to encourage her play and interaction with the children(more play oriented).She will be lugging to school her walker,and a wheelchair now.She seems to be quite motivated by the other children around her and physio seems to think this will encourage her to walk more.Her new wheelchair should be here very soon...This will allow Jayden to rest when she becomes week and tired as well as provide us all with some relief when we carry her.

Jayden has also reached a growth milestone this August.She has jumped from 22lbs to 26lbs 10 ounces.This is so amazing because she only usually only gains 1 lb in three months...This is all due to the fact she has had no seizures since Sept 2007,and she has had minor sickness...

In closing,Paul and I would like to thank all of you who visit her site,those who are continually helping us raise awareness on FACEBOOK,your kind messages,and most importantly your prayers on her behalf...

God Bless,

Kimmie & Paul Bevans

August Journal...

2008-08-11T05:56:00.000-07:00

August is already here and at our house we are getting ready for the new school year....Jayden begins pre-school with two teachers and will start going five days a week to prepare for grade one next September.She is practicing alot of walking with one of the new teachers.She is very willing to learn how.Paul and I have noticed a great improvement and want to say thanks to her caregivers for being so great to our little girl.We are still waiting for the wheelchair to come.Hopefully it will be here for the start of September.The work on our home is coming along great...It is a great adjustment for us all.Especially for Jaydey who had to loose her room for a bit while we added a new window.She does not like change.A daily routine is what works best.Same bed,blanket,toy etc...

I would like to leave a couple of links for everyone...www.jaydensworldcdls.com is the website where we update you on Cornelia de Lange Syndrome info as soon as we recieve the alerts from google and try to add pictures and any info that would be helpful in your quest for information on CdlS.There are tons of recipes,crafts,games,kids sites,etc...

http://www.thegourmetcupboard.com/ is the main site for any mom's who would like to earn some $$$$ at home.The gourmet mixes are handmade,simple and fast.Easy product to sell.I have had great success referring my customers to the site.The food is delicious and is great for a busy family like mine...It is Free to sign up..No minimum monthly quota to meet.Up to 40% earning on your customers purchases,and 10% earnings from your distributors purchases!When you sign up use the distributor/sponsor name(kimberly Bevans)that referred you to the site at the bottom of the sign-up form online.You can sign up by going to The Gourmet Cupboard site homepage.Click the "Join Our Team"link at the top of the page and answer a few questions like mailing address,phone #,and method of payment.Form takes 3mins approx.to fill in!!! So check it out,you'll be glad you did!

Happenings

2008-07-07T09:37:00.000-07:00

Hello everyone...

This is just a little update on Jaydeylady,and some new things going on around here lately...Jade has finally picked out her new wheelchair.It is bubblegum pink!She loves it so much.This is gonna make some things in her life a little more accessable.It will also be alot easier for Paul & I to get her from place to place.It will have a whole new meaning to us when she gets much bigger too.She has been enjoying her summer very much.Her favorite thing to do is swim.She could swim for hours!!We are also in the middle of some home renovations.Siding and windows...This may cause some delays with new posts to this journal,or the website www.jaydensworldcdls.com

Thank you for your patience....

Just would like to remind some moms who are reading this,that I have a website they can visit if you are busy like I am and need a quick meal idea for the family tonight.Or if you are looking for a way to make some extra $$$Visit http://www.kimmiesgourmet.com/

In closing I wish you all a wonderful,safe summer with your loved ones.God Bless you all...

Kimmie Bevans.

Attention Mom's...

2008-06-18T13:02:00.000-07:00

I have just created a new site which should be up and running in 72 hours.It is called,Kimmie's Gourmet Market.You can reach this site through any of the Jayden's World sites in the links section or at http://www.kimmiesgourmet.com/ This site is great for us busy mom's.It has so many easy,and simple meal ideas at low prices which is important to anyone.It is also through a Christian Based Company called,Gourmet Cupboard.So come check it out,sign up for FREE...All of their products are fast,simple,low cost,& handmade.They even have great gift ideas.If you must see the products now,I urge you to check out the company for yourself at http://www.gourmetmixes.net/ You can sign up there as well in the section called,Join Our Team.And yes,it is still free...

Jayden's World Contest!!

2008-05-21T12:49:00.000-07:00

Attention...Jayden's World would like to announce their first ever Contest...Because we here at Jayden's World are such saps...lol...We are looking for a story about your loved one,or someone you know with CdlS.What they mean too you or why you think they are special.We will be accepting your stories starting June 1st/2008.All entries can be sent to jaydensworldcdls@hotmail.com The winner will be drawn on July1st/2008.A Jayden's World Administrator will contact you if your story should be chosen.Remember to add all contact info to stories should you be selected.We will display the chosen story here on the Jayden's World site.The prize is a CdlS tote bag,and a Jayden's World travel mug.Good Luck....

Jayden's World

Mothers

2008-05-05T05:51:00.000-07:00

Hello everyone.

Lots of exiting things going on this week.Just a reminder of CdlS Awareness Day on May 10/2008.We just want you to show your support on this day by telling someone about Cornelia de Lange Syndrome,visit the site,and our many other links on the home page to learn about this rare syndrome.www.jaydensworldcdls.com It is also Mother's Day on May 11th.A day to tell mom just how much she means to you...I would just like to say on behalf of myself & Jayden's World, Happy Mother's day to the mom's who have a loved one coping with CdlS.You are the lifeline for the child dealing with CdlS.The late nights you stay up and the numerous hours you put in each day.Whether it be physio,doctor's appointments,feeding,teaching,and of course the unconditional love and care you provide.You are invaluable Mom's and very much appreciated.Bravo!!!I'm sure you are rewarded everyday for your efforts,as I am,when I look at the smile,and ray of sunshine in each of their little faces.Happy Mother's Day....

God Bless,

Kimmie Bevans & Family,Jayden's World Administrators.

What Would You Do?

2008-04-15T08:29:00.000-07:00

Good day everyone....

Well the flu has swept it's way through our house over the weekend.Everyone is better,exept for Jaydey.When I sit there looking into her sick little face.I remember when she was born.When we realized our little girl was sick.That there was something wrong.I did as many mothers probably do.I silently promised her and God that I would love her and take care of her.That I would protect her and do whatever I could to keep her safe and give her everything this world has to offer.Well today,knowing she has CdlS this promise holds so much more meaning to me and our whole family.I remember the day the specialist came to St.John and diognosed her.He gave her an hour examination.Then said,"Your daughter has Cornelia de lange Syndrome."She was 2 1/2.He asked me if I had any questions.I was in shock.I remember asking if it was like down syndrome.He said she might be considered worse off than that.I quietly made my way with Jayden to the waiting room where my sister was waiting.I must have looked like I had seen a ghost.She asked me what the doctor said.All I could say was,"He said she has a syndrome called CdlS.I don't even think I had an expression on my face.The next thing I remember was getting in the van crying hysterically while my sister held me and said those words,"Everything is gonna be alright."There were alot more tears that evening as I told the family one by one.I didn't even know what CdlS was,and wondered how I was ever gonna find out.

Then I remembered the promise that I made to Jayden.I reasearched it,and found out how rare it was.How life could be for her,for us.That there were possably only two people in all of NB.We were so scared.Even scarier,was when we took her to all her doctors and they,said,"what's CdlS."

That is when I decided to take matters into my own hands.That God does not give children like Jayden to just anyone.There was a reason.So we began this journey with Jayden in her world and day by day we are doing all that we can to love and care for her.To protect her and make her world a better,more understanding place to live.A web site here,a cause there,a flyer,an online journal.A couple of signs on our vehicle.It brings her one step closer to where her and others like her deserve to be.A place where they are loved,protected,and understood.What would you do if you had a child with CdlS?Paul & I want to thank you all who care about Jayden.Who take time out of your everyday lives to read these blog entries,visit the site,join others to the cause,your thoughtful messages.It shows us as parents that we are on the right path,and there is,I can see it .A light at the end of this tunnel.

God Bless,

Paul,Kimmie,& jayden's World Administrators.

New Beginnings & Hope For The Future....

2008-04-07T07:33:00.000-07:00

Spring has finally sprung....

Warmer weather and alot of activity going on around here at our house.Jayden has had her sicknesses,but has fought them off beatifully.We have went to our appointment for her new wheel chair.I have never seen such a tiny little chair.Jayden is very proud of her new ride.Her talking computer is on it's way as well so we can get ready for the new school year coming up...Things are definately getting brighter.Our family is very exited for what the future holds for our little girl.Just a reminder everyone that May 12/2008 is CdlS awareness day...Come out and show your support for Jayden and others with this syndrome.Visit Jayden's World at http://www.jaydensworldcdls.com/ and learn more about life in Jayden's world.Check out the many links on the home page to learn about Cornelia de Lange Syndrome.Leave Jayden an encouraging message in her guest book or check out the CdlS awareness products.Show your support by purchasing one.

God Bless,

Paul & Kimmie Bevans & Jayden's World Admins.

Times Of Testing Come Before Promotion...

2008-03-02T09:43:00.000-08:00

Well March has certianly come in like a lion,and I hope it leaves like a lamb.I can't remember a winter quite like this one.The weather has been harsh as well as the trials our family has been facing.Jayden has missed a week of school because of a nasty flu.She is on the mend though.Know I just have to get her eating well again.She has been so sick I have had to syringe feed her.Now I have whatever she has had as well as her bother, Adam.Jayden's Daddy is away for six weeks,and things have been quite difficult.Looking after the two of them,keeping the yard cleaned out because of all this snow we have.Piling wood.We have not made it to any of her appointments in a couple of weeks.She has three next week.Physio,eye appointment,and one to get fitted for her wheel chair.Our water pump broke,furnace,van.UGH...Which is still broke...I know everyone else has been going through some things of their own...It is times like this when you really draw on the strength of God.I don't want to do any of this,and certainly not alone!But,With God I can,and will have all the necessary tools to accomplish this task ahead.Change is on the way.Soon it will be spring...Warmer weather,my husband will be home,all will be well again.My family and I will be that much stonger,our faith will stand the test...

CHANGE....

2008-02-11T10:15:00.000-08:00

Good day everyone...

Jayden missed school today on account of the snow storm.But,when she returns there will be some big changes...Jayden will start off with an extra hour at school.She then will increase from three days a week to five in September,so she will be ready to start kindergarden when she is five.Hopefully we will also be able to try to increase the hours as well so she will be used to a full day at school when she starts.But I'm told that school can be tailered to what Jayden can handle.She was supposed to start Kindergarden this September next door,but Paul and I have decided to hold her back till she is five to get some necessary building blocks into place.As much as we would love to just walk her next door to Apohaqui Elementary.Starting this September at daycare,Marit,Jayden's teacher aid,will be focusing on communication back an forth.Either gesturing,sign,as well as a speech device will be introduced.Jayden will be getting her wheel chair so she will get around herself.Marit will also be working with fine & gross motor skills.This will help with sign,using a computer,as well as what type of wheel chair will best suit Jayden's needs.Such as can she move the wheels or would remote contols be better.

Just a quick update,Jayden has slept for the first time in a month and a half for a whole night the past two days.We are all very happy for that.I would also like to wish everyone a Happy Valentines Day this Thusday from all of us here at Jayden's World.We thank you all for you love,prayers,and support.

God Bless,

Kimmie Bevans.

Little Blessings Mean So Much....

2008-02-04T07:18:00.000-08:00

Happy Monday....

Well it has been quite a journey.Jayden is back at school and happy to be back.We have been going through alot of sleepless nights lately.Last night Jaydey slept through the night...Thank Goodness!She has been sick with ear infection,not eating well,and because she has missed so much school,she has had alot of anxiety with returning.But today it is a new day.The sun is shining once again and things are looking brighter.Many thanks to all who love Jayden as much as we do.Who drop us emails to see how our little Angel is feeling.Your love and prayers really count and bring us through the hard times.Thank you....

Just a little reminder that May is fast approaching.Come out on May12/2008 and show your support for CdlS day.You can visit Jaydens World and follow the many links on the home page to learn more about CdlS and ways you can help.Visit the Jayden's World Gallery at www.zazzle.com/kimberlybevans or just browse the Jayden's World site at http://www.jaydensworldcdls.com/ .Jayden really enjoys your emails you leave in her guestbook.There is plenty to do for the whole family.We'll see you there!

God Bless,

Kimmie bevans.

What a week....

2008-01-16T12:34:00.000-08:00

Hi Everyone...

It has been a crazy week around here.I know I promised to update Jayden's blog each Monday,and I apologize for being so late.Jayden has come down with a little something and it has been hard to get away for moment.So far she has missed 2 days of school this week and has been up for three nights know.It is really quite strange.She seems alright through the day.Eating,and sleeping.Yet,she is very quiet.Not quite herself.In the evenings she awakes at least twice crying,and seems unconsolable till you give her some children's motrin.It is very difficult as a parent to know whats wrong,or how to help them when your child can't tell you.Since Jayden has only mastered three signs.Drink,mommy,and daddy.So we play the guessing game with these children who have CdlS.See if she is fevered,maybe they are hungry,thirsty,bad dreams or maybe she is tugging at her ears...You end up spending an hour up each time trying to help your child.When that doesn't work it could mean a late night trip to the emergency room.We have done this all too often.Thank goodness we only live 10 mins away....

It Is 2008....

2008-01-10T11:45:00.000-08:00

Hello everyone,and Happy New Year...

It has taken us awhile to get back into the swing of things around here.Just a quick update.Jayden and our family had a wonderful Christmas together seeing all our loved ones.We came into the new year with Jayden coming down with a cold.But she has been sickness free for awhile,so she fought it off without any complications.She is now back to school at Lisa's Playhouse this week.Brother Adam also had a mishap and had a steel pole stuck in his cheek,and I am happy to say that he is on the mend quite nicely as well...

Now that the blog is up and running I would like to say that it will be updated weekly on Monday so you all can keep in touch and track Jayden's progress and get any CdlS Info that is available...

Thank you all,

God Bless...

Happy Holidays...

2007-12-18T09:28:00.001-08:00

Hi Everyone...

Seven more days till Christmas.Our house has just settled down just in time to enjoy the fast approaching holiday.Jayden is doing very well lately.She has gotten some speech back and is communicating very well.Doctors visits are over with till January 4/2008.We are focusing on a lot of family time.I have had alot of time to stand back and think of the things that have happened this year.We have alot to be thankful for.I would like to list a few.First I'm thankful for a God who is always present with my family and I.For everyone who reads this blog and answers my families call for prayer for Jayden and all of us.For you letters of support.For help with all we have asked of you.For the love and peace we feel as well as hope knowing there are such great people such as yourselves in our corner.

I'm thankful for the launch of Jayden's World Cause on Facebook.Jayden's World website which is our base of operations,and this blogsite which helps me keep you all updated with a weekly diary of Jayden's health,struggles,ideas and beliefs.The Jayden's World Gallery which was created raise awareness for CdlS.

Thank you all....God Bless you and your loved ones from Paul,Kimmie,Tyler,Adam,and Jaydeylady.

Count Your Blessings...

2007-12-10T10:17:00.000-08:00

Hello everyone.I hope you all are well.Here at our house we have been busy,busy,busy.Lots of appointments,getting ready for Santa.Just wanted to thank everyone for all the prayers,emails and support for Jayden and our family.She is doing very well now.She is eating everything in sight.She is so full of energy.Talking lots,squealing with girlie laughter.I can't tell you how relieved and happy we are.Jayden has been to see the surgeon about eye surgery again.They say she will need it,but they have to wait for the eye to stop changing.So far they are getting stronger small amounts at a time.Please keep praying with us for a miracle that she will not need surgery at all.My Family would also like to thank Jessica Rhaye for adding Jayden's World to her official site and helping us raise awareness for Cornelia De Lange Syndrome.You are such a wonderful,kind soul Jessica(http://www.jessicarhaye.com/). I would also like to thank Apohaqui Community Church for all the prayers.As well as the wonderful ladies at the ACC Mom's Group for inviting me to your weekly meetings.Words cannot express how valuable you all are to me.Making me feel welcome,giving me a place where I can go and share my thoughts and heart and be accepted for who I am.Last but not least,Thank you all who participated in the Cookie Dough Fundraiser.God bless everyone.....

Getting Ready For Santa....

2007-11-26T17:21:00.001-08:00

Hello everyone.What a week we just had.Jayden & I were sick together this week with chest & nasal infection.Jayden still is sick.Everyone on Jade's health team wants to see her before the holidays.So we have been going to school & lots of appointments.Most are in St.John.I did some Christmas decorating for Jayden.Her brothers don't get exited,but Jade knows something special is coming.When she sees the twinkling lights,she stands in her walker,starring at them with her little head tilted upward.Her mouth hung open,peering through her long lashes,and tiny pink framed glasses with amazement and curiosity....Jayden brings back the pure exitement in Christmas we all have forgotten...

A New Day...

2007-11-19T09:42:00.000-08:00

Hello Everyone....

What a wonderful weekend we all had.Jayden is well again.Back to Lisa's Playhouse for school this week.She is very exited today.It's Brother Adam's Birthday.He's Eleven today.Any birthday she gets exited.Once you sing Happy Birthday,and the candles are glowing,she thinks it is her birthday and we are all singing to her.Lol...Our cookie dough fundraiser is in full swing.Jayden's World website http://www.jaydensworldcdls.com/ has had over 5000 hits since it has been up and running.Yeah!We have connected with our home church ACC through http://www.mychurch.org/. We have connected with CdlS Canada and soon hope to be members.We would like to thank all of our Members at Jayden's World for helping us raise awareness,and supporting us in our fundraising efforts.Thank you for visiting the website and leaving wonderful messages of love,and prayers.Without you all this would not have been possible...

God Bless,

Kimmie Bevans & Family,Jayden's World Administrators.

What a Blessing...

2007-11-12T05:36:00.000-08:00

Since last Monday,Jayden has gotten sick again with a double ear infection.Things have been really ruff going.Yet in these times of adversity,and testing things really take on a whole new perspective.Things that you would not normally notice unless trials come.When Jayden gets sick,there is alot of emphasis on how tired the family is,how sick Jade is.Her eating,and what not.This is all important.But there are a whole lot of good things that I learn in times like these that I neglect to tell you about.Like how when she is really sick,she still has the most beautiful smile.Like sunshine.I learn,and yes the whole family learns how to give without any thought of recieveing.We realize how selfish,and how we take for granite all the blessings and little things God has given us.We see what truley matters when our lives come down to moments,and breaths.We have seen God's perfected strength and purpose in the form of weakness,when we look at our Jayden.She never complains,or asks why me.Without any words at all,through this little angel God has sent,I have a new found strength,faith to move mountians,hope in a brighter future,peace for tomorrow.Jayden you are truely a blessing in disguise.Love Mommy,Daddy,and your brothers,Tyler & Adam.XXOO

Little Miss Attitude...

2007-11-05T12:07:00.003-08:00

Well,Jayden is on her way to feeling better.She is off to school today after missing all last week.Back to our regular meds this week.I think that's why Jayden has a new attitude.She hates taking all that medicine.Being sick just made a bad situation worse.She holds the medicine in her mouth,then turns her head sideways and spits it out.Or,she holds it in her mouth,then chokes on the stuff.She has a delayed swallowing reaction.So the medicine sits at the back of the throat and she forgets that it is there...Not good!She sometimes breathes the stuff right in the lungs.This is another cause for pneumonia.She has been very vocal as well.She screams at me.She looks as though she is asking me why I wanna keep hurting her.She wiggles,and slaps.I can't imagine what it would be like if she was bigger.She is so strong at 23lbs when she is trying to get away from me.Thank goodness for in homecare workers.We are gonna need all the help we can get.Marit,her teacher at daycare,said she became very independent today.Wouldn't let anyone feed her.Kept hitting the utensils away.It is good she wants to do it herself.Not so good though when she needs your help,and you can't get near her.That's why we gave her the nickname,"Little Ms. Attitude."

Happy Birthday....

2007-10-29T15:40:00.000-07:00

It's been crazy since the weekend!It's also very hard to wish Jayden a Happy Birthday.Since Friday she has not slept and neither have any of us.Then Sunday came in with a bang...Jayden woke up after only two hours of sleep extremely sick.There was no consoling this dear child at all.No matter what I tryed.People were coming to visit Jayden on her birthday and she was so sick she could not even open her presents....By the end of the day we were in the emergency room in Sussex.She has pheumonia in her left lung.Poor little girl.Today,October 29/07 is her actual Birthday and she can't even take a drink out of her sippy cup.I have to try and syringe every liquid I can in her so she won't dehydrate.She is a little zombie.Valporic acid & Clobazam for seizures,penacillian for infection,motrin for fever & pain,zantac for gastro-reflux.My head is spinning,and so is hers...I just shake my head in disbelief.praying for a normal,healthy day to come.For strength for her and the family to just exist.Hope for a better day,and peace in knowing that God never gives her,or any of us nothing we cannot handle......

2007-10-22T07:52:00.000-07:00

Good Day,
Jayden is off to school after a very exiting weekend.She had her first sleepover with her cousin Briana on Saturday night....She also got to see cousin Abbie on Sunday.You could just see the exitement in her little face.Good news!Physio therepy is getting Jade a new wheel chair.She is just getting too long to put in a stroller,and too wiggly to carry around.
Jayden's birthday is coming up...She will be 4 years old.Well worth celebrating for sure.We have been blessed,and truly touched by this little angel forever.Please leave your b-day wishes in the comments section on Monday,October 29.We want her to know how much she is loved....Or visit www.jaydensworldcdls.com and sign the guest book so we know you came.Remember password is "butterflies".See you there....

Thank you!
Kimmie Bevans

Happy Monday...

2007-10-15T07:40:00.000-07:00

Today Jayden was awake earlier than usual.She woke up at 7am.Usually she is quite the sleepy head.Jayden never wants to get up before 10am.I think we were all late this morning,and made alot of noise getting ready.Sometimes I don't know how we keep it all together.Paul works 12 hour shifts,five days a week.Tyler & Adam are in Jr.High and High School.Tyler works at Mcdonalds.Which is why Tyler and I overslept this morning.He worked till midnight,and I had to go pick him up.Jayden has had alot of appointments back to back lately.She attends Lisa's Playhouse three days a week.Mon,Wed,Fri,till dinner.She goes to physio,speech,occupational therepy every two weeks.She has two places in St.John to go for her eyes.St.Joeseph's,and Dr.Goodfellows.Then there are the fun visits to the family doctor,or the emergency rooms almost every two to three weeks for illnesses.They are usually in the middle of the night without any warning!She goes to see Dr.Meek in St.John for her seizers,and Dr.Alexander is the Pediatrition.Around all of this we still fit in spending time together,seeing our loved ones,and trying to get things done.This is Jaydens World....I thank God everyday for all his strength to get up in the mornings.His guidance and wisdom to do my best in all this adversity.For his love.For giving me this wonderful family to share the good and the bad with.For Jayden bringing us closer,and making us complete....

Welcome Everyone......

2007-10-11T12:30:00.000-07:00

Thank You for visiting Jayden's World-Living With CDLS.My name is Kimmie Bevans,and I am Jayden's mommy.We are so glad to have a chance to influence our daughter's life,and try and help create a brighter future for her,and others like her living with this rare syndrome.Our hope is to raise awareness for CdlS in anyway we can.Through this blog site,our own web page www.jaydesworldcdls.com getting out Awareness flyers,and providing an inside look at Jayden's world and the challenges she faces everyday and in the future.....