Hi Deqlans army
Hope you are all well - i am sure you are wondering where we have been and why we have been so quiet? Its been a very busy, very hectic, very rewarding, very frustrating past week.
Saturday afternoon after Deqlan and I had packed the entire morning we decided to go to Meggie and Conrad for a break and so Deqlan could have a change in scenery and perhaps get to plan a bit with his little cousin Keaton. It was wonderful to see so many friends that we haven't seen in months! It was also wonderful to meet little Caden for the very first time, he is to beautiful, another miracle in front of us, he is doing so well! Elriza had to go back to work on Monday as her maternity leave was up, i know how hard that is, but luckily she is only working half day so still gets to spend most of the day with her little boy.
Was wonderful to catch up with Lisa and Dale to - Dale really enjoyed playing cars with Deqlan, and was fascinated to see how fascinated Deqlan was in the wheels of the car , more then the actual car...maybe we have an engineer on our hands? I also was so excited when i heard Deqlan say 'VROOOM' the sound Dale was making while playing with the car - this is a big deal as it could show Deqlan understanding the concept of pretend play - so we will continue working on this sound - thanks guys for playing with Deqlan
I also enjoyed catching up with Coreen and hearing all about her and Grants wedding plans (so far) for next year Sep - thank you Coreen for also being so kind and patient and playing so nicely with our soldier !
Loren and Darryl were also there, Lorens got around 4 weeks to go before the expected arrival of their baby boy - yes another boy for our group of friends! Take it easy Loren and catch up on your rest before little Malakai arrives into our big world!
Dada also joined us after his conference had ended and we had a great time all watching the boys playing and laughing and eating and drinking and climbing and thoroughly enjoyed Conrads amazing cooking skills on the braai! The party didn't last into the night for us as we knew we had to return home to continue with our packing..
Sunday, you guessed it, we packed and we packed and we packed some more - Mark got so much done in terms of painting the walls and sorting the kitchen out . It took me a full two days to sterilise and pack Deqlans room - its not as easy as just packing his stuff into boxes as i wanted everything to be sparkling and clean and ready to unpack in the new place, instead of having to un pack and sterilise everything there - there is going to be way to much stuff to do this coming weekend.
Dada and I have had an absolute ball watching how cute and clever Deqlan continues to become each day - it was an absolute treat to watch Deqlans this weekend. He seems to understand he concept of dancing now - i started singing and clapping my hands to a song that was playing and Deqlan stood up in the bath and started laughing and moving along with me! Later that evening i started clapping my hands and clicking my fingers and again Deqlan screamed with laughter as he turned around and around laughing and moving his hands- was amazing to watch. Deqlan is also thoroughly enjoying games Dada invents - especially with his beloved Dub - Dada will had Dub behind his back and Deqlan will peer over and around and where ever he can to try and find him or even get a glimpse of his best friend , and shriek with laughter.
Deqlans hair is growing now - so happy miss his long hair that i could play with , but its growing nicely now. Our soldier is eating a bit better these days - i even manage to get some vegies in here and there! If I am lucky ill get to brush his teeth to, but most times thats so unpleasant for our monkey - he screams and runs away!
We went to speech therapy as normal yesterday and had a real great session. Anri managed to get Deqlan back into the actual OT room, which Deqlan really didn't like earlier on in our sessions. Again, exercises all to do with sensory integration - the main aim of yesterday was to teach Deqlan to lift his hands and asked to be taken out of a situation/activity he had enough of - for example the ball pit, when he had enough,i had to wait for him to raise his hands to be asked to be taken out - the same with a swing and a hammock and Deqlan did fantastically well. He wasn't comfortable on a special swing Anri used in the beginning of the session, but by the end, was very comfortable and lay on the swing for quite some time . Anri would like to use these methods to teach Deqlan about doing other things and we are very confident about her new techniques and so excited to see what happens each week.
When the door opened Deqlan thought it was home time so was very upset when we took him to his normal room for Speech with Esedra , we had to first come our soldier down and then get down to the activities for the day. Deqlan loved the slide and showed off his skills as he fearlessly slid down head first. He also enjoyed the bubbles and balloons and even made lots of BA sounds - Deqlan and I also had great floor time together where his eye contact was constantly on me - if i think back to even a few weeks ago, his eye contact has come leaps and bounds. It is definitely more intense with Dada and Mama and Nanna, so he is still getting used to eye contact with others, but it seems quite hard to do with strangers. But i know our monkey will get there in time!
On our way home from therapy, and as I got onto the onrap for the highway , we heard a huge noise - it sounded like something had shot from the engine to the back of the car and out of the exhaust, then immediate smoke, so much smoke that we couldn't see a thing behind us - luckily the cars around me saw something was wrong and let me pull off into the emergency lane - it wasn't even 2 minutes later and a car stopped behind us to help, the gentlemens name was Gilliam, and it was like he was an angel sent at that time, at that place. He was incredibly helpful by first telling me not to even try and drive the car further as something was very very wrong and the smell indicate oil somewhere - but there was no indication of a leak - he then suggested that the turbo had gone on my lovely golf tdi! luckily meggie came to the rescue and came to collect Nanna and Deqlan from the side of the road, and then waited with me and Gilliam for the tow truck to arrive. Gilliam, thank you for being so kind and helpful and even helping transfer all my baggage from my car into my sisters- thank you for being so conscious about our safety and for taking such interest in our beautiful soldier, i cant thank you enough and hope you one day be able to repay you some how! Mark also left work immediately, all the way from the airport - 45 minutes away to come to our rescue! As he got there the tow truck was ready to leave with the car, the guy also gave his opinion in that the turbo has gone. We got to VW and we were told the car is no longer under warranty and we will have to pay around R32 000 to have it fixed! WHAT? Mark said? We went and did our homework, Mark actually did the work, and read all the fine print which actually proves we are still under warranty - so praying this can be sorted out and the car fixed! What timing...but thank You Lord most importantly that we are all safe and sound!
Our house looks like a paint ball course - there are so many boxes and objects everywhere, it feels like we are ducking and diving - Deqlan seems to be enjoying climbing on top of everything so it seems like he is having fun! Mark is going to start moving the small stuff n on Friday afternoon so things go smoother on Saturday. Nanna and Grandpa to the rescue again as they will be watching our little monkey while we move in and get everything ready for his grand arrival on Saturday afternoon!
Go and watch the following story and some neuroblastoma families in Australia - what a heart breaking clip, but at the same time these amazing kids are creating awareness and how rough neuroblastoma really is - their courage, wisdom beyond their years and hope and trust and faith is inspiring to say the least - I have added Olivia and Dyllan's links to the right if you would like to go and pay them a visit. Isla our little friend is also featured sitting on her Dads lap, her link also to the right if you haven't paid her a visit yet.
http://www.sixtyminutes.ninemsn.com.au/article.aspx?id=598911
More news in the nb world is that the CHILDHOOD CANCER ACT has been passed ! last step - THE PRESIDENTS SIGNATURE:
Dear Team Leaders,The Senate of the United States works in strange and wonderful ways. Late thisafternoon we were notified that Senator Jack Reedplanned to bring the CarolinePryce Walker Conquer Childhood Cancer Act to thefloor of the Senate to see ifit would pass by unanimous consent. I am so pleasedto let you know that therewere no objections.The bill passed.Tomorrow we will send out the official press releasebut tonight I wanted to youto know how grateful I am for the hard work you haveall done to make thishappen. This is historic and you should all be veryproud that you have had apart in changing the world for children with cancer.My very best,KateKate Shafer, LICSWDirector of AdvocacyCureSearch National Childhood CancerFoundation
Update on Baby Dyllan - he had heart surgery on Friday afternoon to repair a hole in his heart - apparently, this can happen in prem babies. He is stable, but very sick and needs all our prayers for his recovery- please pray for his Mom Louise and Dad Roelof and big sister Jessica to.
Update on our Uncle Bill - he was released from ICU last week Friday !! On Sunday morning at 515am he had another heart attack and was rushed back to theater -apparently caused by a clot , which has now been repaired.Please pray for his speedy recovery and for strength and guidance for Aunty Val and Hayli and Yves.
Urgent prayer request for Katie and her amazing family - http://www.caringbridge.org/visit/katiekrize
And please remember all our other warriors in your prayers to!
Have a wonderful week let us know how you all are and take care of each other. Enjoy the new pics, the cutest ones of Keaton listening to Nanna's dvd player,and Deqlan giving me hugs and kisses after our chocolate mousse! Another favorite for Deqlan is push and close the gates when he gets the chance!
God Bless and all our love
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
3 comments:
Deqlan is doing so well - he is amazing!!!!! His eye contact, new word vocabulary, social skills are excellent - well done to Mommy, Daddy and Nanna for doing such a great job!!! So happy that I was able to come and help you and that we all got home safely and that the car will be paid by VW..... God is wonderful.... Lots of Hugs and Kisses, Meggie, Conrad and Smiley Boy Keaton
WOW, what a clever boy you are, Deqlan. You are making wonderful progress and growing up so quickly!! I can't believe you are nearly 2 years old!
The pictures are gorgeous!!
Samm & MArk, Good luck for the big move. Its going to be hectic but once its done, its done! Hope you will enjoy your new home and that Deqlan settles in real quick!
Have a great weekend and looking forward to reading the next blog!
Love
Claire, Stephan & Hannah
Oh wow Samm, it was so nice seeing you guys on Saturday! Deqlan how grown so much! He really is a beautiful boy! Good luck with the move this weekend. Hope all goes smoothly for you guys!
Lots of Love
Elriza, Wes & Caden
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