Monday, November 10, 2008

Our Christmas helpers

nix, deqlan and dada
dadda, my hero

getting to know nix!

feeding nanna m & m's - i think we were up to ten at this stage!
it wasnt me!

keaton wanting to swing from the chandeliers!



our gorgeous Deqlan
my favorite, the teletubbies

lazy days of summer!
Mary Poppins with Hannah and Keaton - see the magic cupboard of tricks in the backround!

keaton and meggie in their camo supporting our soldier
our little surfer: on my boogie board, grandpa teaching me how to swim

Hope you all had a great weekend! We have had non stop rain, for the last 4 days, its been overcast and gloomy - much like the weather in the Uk! Very very strange for this time of the year , but we are enjoying it and our plants and trees are getting a much needed soaking

We got the results from the full blood count tests and the crp infection test on Thursday and Thank Our Lord they are fine, so it doesnt seem like Deqlan had an infection. He has been coughing a little here and there and putting his fingers in his ears, but he seems to be better and no fevers, thank Our Lord again for that! I made a great recover on Saturday afternoon on the way to Nix and D, my nose just stopped running and i was fine from then, much better today!
Along with the call from the paed to give me the full blood count results she mentioned one of the markers was up - NSE - neuro specific enolase, which is a tumor marker - of course i immediately called Dr De Jager, who only called me back later in the afternoon to explain he wasnt concerned - this can fluctuate, and its not reliable by itself. We want the other blood and urine results to complete the puzzle, when we see him 21 Nov. I wish these results were not sent to the paed, but because we did so many tests from the one blood draw last week, the lab mustve sent all the results to all of the doctors. With knowing the ultrasound was clear and hearing the Deqlans feretine level is normal ( another marker Dr De Jager checks on, for iron storage) and because Dr De Jager doesnt seem concered, we have got to put our minds at ease, and most importantly our trust in Our Lord that all is going to be fine and a ok when we see him 21 Nov. Its hard though to try and put this thought at the back of my mind and not let it get to me, and freeze me in the moments of fear - as i become a moody, depressed mama who is worrying about things that may not happen and i am not making the most out of everyday with Deqlan, with my family and friends. Funny how things look worse to you while you wait for results, Wills Dad agrees to - Deqlan eys may look a little swollen to me at times, when Mark says is fine, the bump on hi skull feels bigger to me, which Mark reminds me it has always been a little bigger then the other side.So am trying very very hard to remember not to trust my own understanding but to lean on God! As always, we would really really appreciate your prayers for Deqlan , i know they are always there, but specifically for our results 21 November and for us all to continue having trust and patience and faith in Our Lord and Savior.
Friday Claire and Hannah came over to hand over their gift from the Choc Christmas party! Thanks so so so much to you all for always being a part of our projects and for specialy choosing the gift and lovingly wrapping it and preparing it for the very special little girl who is going to love it! Mr Deqlan was a bit tired so had a nap while Nanna , aka Mary Poppins entertained Hannah and Keaton - who had an absolute ball! Nanna has a magic cupboard, actually she has a few throughout the house , reminds me of Mary Poppins bag! The most wonderful, delightful, different, but oh so enticing gadgets and toys you could imagine! keaton didnt even miss his mommy who went out to run some ' erands' and Hannah was fixated on each thing Nanna introduced to her audience! I loved watching Hannah saying ' oh wow, wow' to each new thing she discovered! Was lovely to see you guys and i hope we can arrange many many more playdates before you go back to work and during the holidays !
Saturday morning Deqlan and I had a lovely sleep in , the weather was just perfect and we cuddled as long as we could! Dada took Shelby , our cocker spaniel to the vet as he has had a continuous cough which hasnt cleared properly, the vet said Shelby has bronchitis, shame and has now given us oral antibiotics to give him, the cold wet weather doesnt help him much, shame , hoping and praying he recovers soon!
After our morning nap we went through to Nix and Darryl for their house warming party! It was going to be a pool party , but things quickly changed into an indoor party ! Deqlan was very upset that he couldnt run around in the rain, but we soon got him settled with the teletubbies and some toys and keaton as company! Deqlan also thoroughly enjoyed making sure meggie, nix , dadda and i where all seated on the same couch - as you know Deqlan loves putting things into lines and rows, its a definite trait on the autism spectrum - our little monkey is going to be very organised! As a few more people arrived Deqlan started getting unsettled and a little tired, so it was my que to get our soldier home , where we had another afternoon nap and cuddle, how spoilt was i??????Was lovely to see Nats and Philip to, Nats you are glowing and such a pretty pregnant mommy to be! Dada went back to enjoy the festivities! It was lovely to see you guys, thank you for a lovely afternoon, of catching up , support and laughs! You have the most beautiful home and we wish you many ,many years of happiness, joy and laughter there, congrats guys you worked so hard for it . Thank you also guys for your lovely gift for our Choc Christmas party , you to always always help us Nix, and we cant thank you enough for all the love and effort you put into selecting your little girls Christmas gifts which she is going to love!

Sunday, no surprise to wake up to ....more rain, dark skies, cold weather! We not complaining cause our trees and plant and dams need the rain, but we just missing the sun and swimming and being outside! I went to church with Meggie and Dada and Deqlan had their morning nap together, must be the weather! Special prayers where asked for Deqlan as we await his results. Was a wonderful service as always and i am so humbled and blessed that so many people still come up to us to ask us how Deqlan and are family are and to let us know they are praying for us. I had a particularly tough day yesterday and needed to be surrounded by our Father and by followers of Deqlans army , for an extra boost of strength and courage. He gave me some lovely words, which i will treasure always. Thanks Meggie for being there for me yesterday when i needed you, thanks Mom for being there for me the whole week, and thanks My love for comforting me last night and letting me know all going to be ok . I feel much better today and read some encouraging powerful verses from my bible last night that helped me . Going to try and not concentrate on the results to much this week and just continue showing Our Healing Lord that all my trust is in HIM! and i am going to enjoy my birthday week and the surprise get away Mark has planned for us Thursday - Saturday - cant wait!
Also got to see Heidi yesterday - another Christmas helper - thanks so so much Heidi for the lovely gifts you got for your Choc boy and girl and for wrapping them so beautifully! You to continue to be a huge support for our projects and especially prayer wise for Deqlan, thank you! Our prayers continue for you to continue having a safe and healthy and stress free pregnancy!
Hannah is getting so big and so so cute!
I also believe we recieved a very special delivery from Belinda and family! Brenda and her husband and one of her little ones drove all the way through from Kempton yesterday to Meggie to deliver another gift for our Choc Kids! Thank you so so so very much Brenda for the amazing amount of effort you went to and for coming all the way through to us to drop it off! Sorry i never got the chance to meet you , but please know how thankful i am - thank you to for following Deqlans journey and most of all your prayers! I truly hope to meet you one day to thank you in person!
Next Sunday, we are just going to have a family potjie to celebrate the big 30 and hoping the weather is a bit more bright and warmer so we can get our soldier and Keaton in the pool! Looking so forward to that, the thought of 30 hasnt quite hit me yet, but i am thankful for the most amazing 30 years My Lord has given me, what an honor to celebrate another year - and the greatest gift of all - having Deqlan as my son, his health and you my amazing husband, family and friends.

We have started taking photos of things Deqlan loves and that are in his environment - we are going to make flash cards are going to show Deqlan how to use them to ask for things he wants /needs - instead of pulling us or using our hand as a tool to open/close/request something we want him to show us the flashcard . I am looking for the movie mercury rising as i believe the little boy in the story uses flash cards. Deqlan is a lot more vocal and is loving the word mama at the moment - but not as much i am loving hearing it, what beautiful music to my ears -after not hearing it for so long, its a priceless gift to hear my beautiful boy singing to me! Dont know if we mentioned it before but we also started trying baby sign language with Deqlan to also help with communication - he really has grasped the idea of open , which is two or three taps on the object he wants open - its working so beautifully and we will see what other signs we can get Deqlan to recognise and understand - this is not to replace him talking , but to assist him in communicating with us so he can understand communication is a two way street - with time and therapy and love and devotion we are so hopeful Deqlan is going to talk the hindlegs off a donkey!
Have a great week everyone, thanks for your prayers and support for our soldier, and please always remember to prayer for our warriors, angels and their family and friends from around the world
All our love, God Bless
Mark, Samm & Deqlan

FOR I KNOW THE PLANS I HAVE FOR YOU, DECLARES THE LORD, PLANS TO PROSPER YOU AND NOT TO HARM YOU, PLANS TO GIVE YOU HOPE AND A FUTURE
JEREMIAH 29;11

2 comments:

Debbie said...

Dear Samm and Deqlan,

I have wanted to respond for so long now, but was unable too with computer issues with Blogger-I know that you will guide your baby boy through not only the present issues with keeping him NED from NB, but the new ones you are facing with the diagnosis of autisim. Deqlan is a hero already and I have no doubt he will thrive under your love and care, how could he not? I feel like I know him, because of the love in the words you write about him and I cried to read he has new challenges ahead. So many sound similar to what Connor is facing with language and I wanted to reassure you that the flashcards are an excellent idea! As is the sign language. Some people argue that signing might delay verbal speech, but it actually makes it easier for some kids to make the connection if the have a sign to go along with a word. Connor's favorite signs are open and help! I think he could live on those two alone, lol...Just know we are praying for all of you and love you too.
Debbie and Connor
http://iwillliftmyeyesconnorkhoury.blogspot.com/

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