Lilypie Fourth Birthday tickers

Sunday, December 7, 2008

Happy 7th Birthday Logan


Darling Logan

A very very Happy 7th Birthday to you ! What an amazing day of celebrating it has been - We wish you the best Birthday ever, we wish you the best year ever ahead, we wish you all the love, joy and happiness, laughter and sunshine, moon beams and stars you could ever imagine!
You have grown into the most beautiful ,shining, caring, giving, thoughtful daughter, we are so very very proud of you !
We cant even begin to tell you how happy we are that you are able to visit us again - we have enjoyed every single second of our first weekend back together and we cant wait for many many more!
I will never forget seeing your face in Grannys car on Friday night - you couldnt wait to open the door, even before the car stopped - i couldnt wait to run and hug you and just look at how big and beautiful you have grown. I will never forget your face when you saw Deqlan , you had pictured him to still be much much smaller! You were delighted when he played with the car you had brought for him - see, you so thoughtful!
I hope you have had a wonderful day celebrating your golden/crown Birthday and i hope you have feeled loved loved loved - you are such a shining star in family and we love you so very very much.
Congratulations on your fantastic report - you are so very clever, this we know and we will continue to help you reach every dream you set your eyes on
Thank you for being so understanding and patient while Deqlan was sick - you are the most amazing sister and Deqlan loves you very very much and i know you two are going to make some amazing memories together
You know what one of the greatest gifts of your birthday is - that you and Deqlan are able to celebrate together, that i have been putting my head down on my pillow saying Thank You Lord for the most beautiful children, thank You that Deqlan has been healed, thank You that we welcome you home Logs!
Happy Happy Birthday Big girl, we love you so much, God Bless
Dad, Samm, Deqlan, Shelby, Stuffy, Blue!

Friday, December 5, 2008

A Deqlan Update!

Daredevil Deqlan wanting to jump from the top of the jacuzzi!
waterboys


playing on Dad is better then on the jungle gym!

looking at the moon and stars

from the other night, jupiter and venus in line with the moon


Hello Everyone!
We are so excited about this weekend! We are going to be welcoming Logan home! After more then a year and a half of being seperated, Deqlan and Logan will finally be able to play together again !! What an amazing sister you have been Logan - at your tender age, of then 5, to understand that to protect her brother from illness, she needed to stay away from him for so very long - the heartache in her eyes when she could only wave to him through the window, was a moment i will never ever forget! Will my gogga - God has given us the gift of Deqlans health and all is going to go back to normal - what a beautiful Birthday you are going to have on Sunday and what a wonderful Christmas we are going to have together, all together, celebrating what Our Lord has done for us.

We have also just heard that Logans report was wonderful , 4 a's, 2 c's and the rest b's - well done Logan - what a fantastic achievement, congratulations, you are firmly on your way to grade 2 - but enough about school for now, hey - we will think about that again in the New Year!

Granny Rene will drop Logs off later this afternoon! I CANT WAIT - is an understatement! Then tommorow we are going to go shopping for a few Birthday goodies for her little family celebration on Sunday - then in the afternoon i will take Logs and Deqlan to Hannahs 2nd Birthday Nemo Party - very excited - but its also going to be a learning curve for me to have a VERY active 2 year old and a very bubbly bouncy almost 7 year old, together, at the same time, all by myself - should be interesting ,but we got to start somewhere hey! Then on Sunday morning we are going to go with a family shoot, with the wonderful talented Loren, then go back to our place for a little family celebration for Ms Logans crown Birthday , turning 7 on 7 Dec! So be sure to check back in for news on the weekend and lots of photos

I think they can only be good for each other - Logs and Deqlan - I think Deqlan will relate to Logan in a child like way and want to communicate more with some one closer to his age and size. I think Logan will enjjoy taking care of and protecting Deqlan and showing him the ropes on lots of new things....

Deqlan is doing great - we have been in the jacuzzi a lot lately - water does wonders for our surfer boy - he never wants to get out and i find myself floating around and jumping around with him for over an hour most days - great work out for my arms, but more importantly great one on one time with Deqlan - his joy is so obvious in every splash and jump - his eye contact with me is amazing - so the real key to connect with Deqlan is during activities he enjoys and loves - so we will definitely continue with this - he loves watching Nanna say 1, 2, 3 and then jumping together with her - its a great sign that he is now understanding the concept of anticipation - 1, 2, 3 or ready, set, go - by 2 or by the word set - he is laughing and giggling cause he knows whats coming!

Every day is a little different - some days Deqlan like to line things up - this hasnt happened in a while though - some days - he gets so frustrated when he cant tell us what he wants that he will want to bite my arm , or his own knee - this has also improved this week - not one bruise!! The 'stim' at the moment ( an excercise Deqlan chooses to stimulate himself with) is turning , around and around and around - and he never gets dizzy - he also tries to look at things from the corner of this eye while spinning - another red flag on the spectrum - its actually very uncomfortable to do , and hurts our eyes terribly, so we got to think of ways to break this - more importantly - not to let him spin the whole day - we have to limit repetitive behavior - we dont wont things like this to become a 'habit' for him - so when he comes to Dada or Me to hold his arm and twirl him round and round , we do , and then try and change it into a jumping game - but at the moment, he is happiest when spinning around and around.
We have great days of eating and some not so great days - but in general this has improved - still battling with fruit and vege - but at least he is enjoying dried mango and raisins The amount of bread and biscuits he is eating has also decreased - which is a great thing! Deqlan still loves his cheese and juice, especially cream soda! Oh yes, we back into Oreos again, i dont mind sharing one or two with him either!

I continue to do lots and lots of reading and research and trying to get very organised for all the plans i have in store for Deqlan - but before i can do some of them, i have to complete 2 or 3 other things first - which i really want to jump into these holidays - first being the flash cards - dont know if i mentioned them before, we take actual photos of people he sees all the time, of items he uses, food he eats - and the hope is for Deqlan to use the cards to communicate with us and show us what he needs/wants - he already relates to photos of Mark and I and smiles everytime he sees Marks face, so i am so positive this is going to work - we dont want to use this system to replace the words, but to help him communicate while he learns to talk. At the moment Deqlan is saying car and mom - lots of other 'words/sounds' we are still trying to work out, sounds like Kitty could be on its way back - we just got to be patient with him , and i know in my heart , one day he will be talking the hind legs off a donkey!
Deqlan continues to amaze us with the things he does - we know he is so very intelligent - for example when he chooses a dvd to watch , he will put it in the machine and turn it the right way round, so that the letters are facing him , so that you can read whats on the dvd, he understands that letters ave to be a certain direction in order to understand them - he is fascinated with letters and numbers, and he probably understands so much more then what we know!

He loves Dub - dub his best buddy comes everywhere with us and gives him lots of comfort - he likes to sleep holding Dub - when he is playing and realises Dub isnt in the room, he knows exactly where he left him, goes to find him , and brings him to the room where he is playing! The other HUGE favorite is Thomas the Tank Engine - i have read many many sites and books that say kids on the Autism Spectrum love Thomas for some reason - he loves the dvd, and we have about 5 different Thomas trains, which he groups together , especially when watching the dvd - i saw a stunning Thomas ball pit today - going to chat to Mark about getting that for Christmas - he will love Thomas, and the balls , and being in a ball pit, creates deep pressure around Deqlan - which we learnt from Anri , our OT is part of the sensory integration programme.

We await details on when exactly we are going to be starting therapy again , but hopefully very soon in the new year

We are also going to be seeing a doctor from Cape Town , she is coming up on 14 Jan to meet with us, she did a DAN course in the USA and is a certified DAN doctor ( defeat autism now) as well as a medical doctor and homeopath - she will delve into possible biomedical reasons for Deqlan being on the spectrum , such as allergies to wheat or gluten, over active or under active thyroid - so we are looking very forward to her expertise and advise!

Well, let me be off for now got to prepare for Logs arrival! Hope you all have a great weekend, please please keep the prayers coming for our Deqlan, that he remains NED always. I also need to remind you to please keep praying for all our warriors, but especially at this time for Ruan, Declan, Elizabeth, Ilsa, Yolanda, Yolandie, Henco

God Bless, have a wonderful weekend
Lots of love
Mark, Samm, Deqlan
EVERYTHING IS POSSIBLE TO THOSE WHO BELIEVE
MARK 29;23

Thursday, December 4, 2008

SAINT SULIAN WARNING SIGNS - CHILDHOOD CANCER

Saint Sulian was a Russian monk who dies on Mount Athos in 1938. He prayed ceaselessly for all humanity

S - SEEK - medical help early for persistent symptoms

I - EYE- White spots in the eye, new squint, blindness, bulging eyeball

L - LUMP - Abdomen and pelvis, head and neck, limbs, testes, glands

U - UNEXPLAINED - Fever, loss of weight and appetite, pallor, fatigue, easy bruising or bleeding

A - ACHING - Bones, joints, back and easy fractures

N - NEUROLOGICAL - Change in behaviour, balance, gait and milestones, headaches, enlarging head

Wednesday, December 3, 2008

PLEASE CLICK ON THE PETITION ABOVE

Hello All

Please sign the petition above - just a click on the gold link above and you are set..please sign it and forward it on to everyone you know - please help us stand together in this fight and get to the cure

MESSAGE FROM PEOPLE AGAINST CHILDHOOD CANCER

The Petition has become a rallying cry for us. It serves to raise awareness of those that read and sign it. It serves to recruit new PAC2 members. And one day it will serve to show that 1 in 300 Americans are fed up with this whole problem that our children, our "warriors", have to deal with. 1 in 300 ring a bell? It's the least we can do for them.So, we challenge you. This week, the next 7 days. Each PAC2 member. Somehow, someway get 25 new signatures on the Petition. 3 or 4 a day: EASY! Get more - Ask them to spread it within their circle of friends and family.Seven days. Nearly 250 new diagnosis. 500 new Moms and Dads. Let's give them hope before they even come to realize the huge problem with childhood cancer awareness and funding.We can give you codes to put on your sites, we can show you how to link pictures, we can show you how to make links clickable......all those things make it easier. We will post how to do all that.Come on, we know you're sick of hearing about the petition. Let's just do it, get the million signatures and we can move to the next initiative.Let's send the gift of hope this season.

Please help us to help Baby Declan

Hello Deqlans prayer army!

I come to you today asking you for some much needed help for our little friend Declan. If you havent had the pleasure of 'meeting' him and his family you can follow on his website www.all-hands-on-dec.co.za

For those of you not familiar with his story - Declan was diagnosed with alveolar rhabdomysarcoma at just 11 days of age

He has endured many rounds of chemo and a surgery to remove the bulk of the tumor pressing from behind his eye. It has been discovered that the cancer has spead to a lymph node in his neck, which is growing by the day, the best option for him now is to start radiation this week, which is going to cause damage to his bones and teeth.

My first request to you all, is to please please pray for Declans miracle, that Our Lord will heal this beautiful soldier and that he will remain cancer free all the days of his life.

My second request to you all , is that you pass this message on to everyone you can to spread the prayer request for his healing

My third request to those of you who can is to support a project his family has undertaken in selling t shirts to raise money for the ever increasing costs of Declans treatment - please see details as follows:

Hi all
Thank you for your support and prayers and special messages for Declan, Darryl and Gillian
We are looking at a variety of things of how to help them raise money for Declan’s medical costs. If we raise enough money to cover his Medical costs, whatever is left over is automatically donated to Choc
We are printing t-shirts
If you would like to order, herewith detail
R80 per t-shirt, if we need to post them, please add a R20 for postage fee
I am attaching, photos in the Gallery of the two options that can be printed on the t-shirts. If you would like to order, please specify which of these two versions
We have already printed
X-TRA LARGE
LARGE
MEDIUM But we can have small and kiddy sizes printed as well.
If you would like to order , just e-mail detail to me please , I will give you more detail if required.
Could you please e-mail me before Friday 6th December, so that I can get them printed and get them to you a.s.a.p
Thank you and God Bless
Emsie
emsie@twoblondes.co.za


Thank you all in advance for opening your prayers, hearts and minds to supporting this beautiful soldier

God Bless and thank you
Samm

Tuesday, December 2, 2008

CHOC Christmas party 2009

wow look at this car!
Dada and Deqlan fetching his present from Father Christmas

All the kids
Ruan enjoying his gift





my beautiful boy


i LOVE cupcakes


Yolandie and Ruan getting a balloon

Ruan with his family

running an running an running....

all the gifts - see your Christmas tree Kath?



Precious Ruan

Smiley boy Keaton


Nanna and Keaton
Meggie arriving
Deqlans favorite part - putting the star on the tree!


a star mom!




yum yum

the sweetie Christmas tree

what can i get my hands on?
meet Chocie

Hello Everyone
Hope you are in full swing of the Christmas spirit and the true meaning of all the celebrations.

Deqlan recieved his build a bear from CHOC last week, and we decided to name her Chocie!

Deqlan also recieved the most beautiful Christmas tree from Kathy and Vicky, instead of Christmas decorations, sweeties! Lots and lots of sweeties! It looked to beautiful and the boys quickly climbed into the tree ! Deqlan thoroughly enjoyed the suckers and Keaton was happy to grab onto anything he could reach! To beautiful - thank you so much again Kath for spoiling Deqlan and for the enormous amount of love and effort you put into making it look so beautiful!

On the weekend, i continued getting Logans dolphin room ready for her arrival this weekend in which we will also be celebrating her 7th birthday ! We are also going to be taking some pics with Loren to celebrate her coming 'home' and to have pics with the kids and their great grandparents - these will be our Christmas gifts to each other this year - the gift of memories between our family, celebrating we have and love each other so dearly! Cant wait to see you Logs only 5 more sleeps!

We also put our Christmas tree up and it looks beautiful - i hung all the blessings from my birthday tree of blessings on the tree. Deqlan thoroughly enjoyed helping me- he loved putting the stars on the tree - he loves all stars at the moment! He also loves taking them all off and picking off the red decorations like apples! Ha ha ha - to cute!

i went to mass with Mom and Grandpa on Sunday night - was wonderful and we let the first advetn candle, then you know Christmas has really started!

On Sunday we eagerly attended the annual CHOC Pretoria Christmas party - its always a bitter sweet experience - its really a stunning day planned for the kids and to see them all running around, smiling and the excitement they have waiting for Father Christmas to arrive, is magical. Its wonderful to see familiar faces, that they are THERE attending another party - its heartbreaking seeing the little faces that where running around last year, that are now angels in heaven - its heartwrenching to see our friends that went through treatment same time as Deqlan, that have relapsed......tears of thanks and tears of absolute pain.
the first person we saw when we got out the car was Yolanda - immediately i knew she had relapsed - last year her hair had started growing back and she had picked up all the weight she had lost during treatment - this year a bandana covering her head and a crutch to support her thinning body- Yolanda had ewings sarcoma, she relapsed this year June, metastatic spread to her lungs, unexplainable bleeding, organ failure - she now has to go for dialysis every two days - but you know what, she looked so beautiful in her pink top, smiling and telling us how she is going to complete her grade 8 and grade 9 over the internet next year.
Next , a flurry of festive red started walking towards me - Yolandie!!! Ruans Mom! Probably the best friends we have made on our journey. Behind Yolandie , her mom holding a frail, tiny 11kg Ruan - our hearts sank to the floor - what had happened to the chubby, bouncy, ball and Barney loving friend who know and love? Ruans whole family joined in from Vereeniging for the party. He was allowed to come to the party for the day and had to return to Unitas Hospital again yesterday. Ruan has leukimia - he had a stem cell transplant in Sep and unfortunately developed the cmv virus - which is preventing his platelets to grow - they are going to have to do another top up transplant on the 11th of December, but in order to do this, Ruan needs to pick up lots more weight - he is only weighing 11 kilograms at the moment - thats tiny for a 2 and a half year old. Yolandie let me know last night that he has been put onto isotech which shall provide Ruan with some much needed nutrition. Please , please pray for this soldier - he desperately needs our prayers - they will probably be spending Christmas at the hospital. Please pray for Yolandie, who is a single mom and his grandparents who are in need of additional strength and courage and trust and faith in the upcoming days and weeks.
It was also great to see Sister Alida in normal clothes not armed with injections and chemo! It was lovely to catch up with her in a relaxed environment

We also saw Sister Mary Evans, who looked after Deqlan while we stayed overnights in the ward at Mary Potter - what a special lady to. She was telling us that 15 of Dr De Jagers patients have sadly passed away this year - to heart wrenching to hear and comprehend.

We also spent some time with the Yolandes that work for Choc - our Yolande, fighting cancer of the womb - which has spread to her lungs - nothing gets her down - she lives each day to the full , with smiles and laughter and appreciation in watching her daughter play - she to is a cancer survivor!

Cooldrinks flowed, muffins and cupcakes where enjoyed and devoured, candy floss savoured, music danced to, gifts enjoyed - it was a beautiful beautidul day


Deqlan had an absolute ball - he ran and ran and ran and jumped a little, then ran and ran some more! When Father Christmas arrived there was no sitting still to wait his turn, its much more fun to run around everyone and sing and gently tap you on the hand or arm to see who you are - he had such a great time and the adults and kids a like where definitely entertained by Deqlan! Deqlan recieved the most stunning car and trailer, with a quad bike on - of course the toy versions! ha ha ha - actually much better then the real deal id say! Keaton recieved a lovely piano and phone from Father Christmas to. We were delighted to watch the kids recieve their gifts and we got to see some of the kids we had all bought gifts for - thank you to all you again for making their day so special - the other children that could not be there recieved their gifts later in the evening when Yolande from Choc went to deliver to them at the hospital - the one little boy even remarked that his gift was exactly what he wanted for Christmas!
you can view more photos on keatons blog
All i can ask you for is to please , please pray so very hard for children affected by neuroblastoma and other cancers - please please support any way you know how - if you are in South Africa , please support CHOC buy purchasing a Cookies for Christmas Biscotti tin - they are available land wide at a cost of R55 and make stunning Christmas presents - and best of all part of the proceeds go to CHOC
please pray for all the warriors around the world,especially these warriors at his time, Yolandie and Ruan,baby Declan, yolande and Miluska, Yolanda, Ilse,Ivan , Henco, Elizabeth.
God Bless, all our love
Mark, Samm, Deqlan
BE STILL AND KNOW THAT I AM GOD

Monday, December 1, 2008

INSPIRING...

I would love to share a inpsiring article about one of our nb warriors , Erik, please click on the link to read his amazing story

http://www.bemidjipioneer.com/articles/index.cfm?id=19555&section=homepage

And very wise sayings from one of my friends:

“NO ONE WILL MANUFACTURE A
LOCK WITHOU A KEY,
SIMARLARLY GOD WON’T GIVE
PROBLEMS WITHOUT SOLUTIONS”

' Blessed are those that can give without remembering and receive without
forgetting."

Photobucket