Thursday, February 5, 2009

Deqlans Army, please get your camo on for tommorow

My first picture
the most gorgeous gift from God

Their two their four their six their eight ...

Our light and life
Helping Dad wash the car
Some of Deqlans collection..

Mischief monkeys...
Calling Deqlan, Deqlan come in, this is Keaton
aaahh, thats the spot...

Hello Deqlans Prayer Army
I must apologise for the lack of updates. It has been very very difficult to write the last few days. So many of our little friends have gone to join Jesus or in the fight of their lives.We ask you to please continue praying for them all.

Its that time of the year again, Deqlan goes for his 3 monthly check up tommorow. We will start with an ultrasound of the abdomen and pelvis at 8am , and then go down to Sister Alida afterwards to have some bloods drawn and get the urine sample done. We need a lot of blood again this time as we have lots of test Dr Lindenberg, our DAN ( defeat autism now) doctor has requested. They range from checking for heavy metals, possibly from chemo, not the metallica kind, to vitamin and mineral defecencies and we are hoping the results will paint a picture which allows us to treat Deqlan in the correct way with the correct vitamins and if needed chelation - which is a technique to get the metals out of Deqlans body. We also await the results of the stool sample which was sent to Germany on Monday - which will tell us wether we need to do any antifungal treatments, or treatments to get rid of yeast etc.
We ask you all, to please get your camo and green on tommorow as is tradition for our little soldier of God, and please stand together with us, agreeing on Deqlans results being absolutely clear and that he continues to remain no evidence of disease always. We will only know the results of the ultrasound tommorow and will need to ask for your prayers for us in patience and trust as we await the blood and urine results 20 Feb. Please pray that the ultrasound is completely clear and normal. Please pray that holding Deqlan down in order to get the iv needle in to get the blood is not as traumatic as last time, and please pray that the results of the blood and urine are completely normal, completely perfect, completely no evidence of disease.

Deqlan has been doing fantastically well. Growing up so quickly, learning new things every day, being the absolute light and love of our lives. He is clapping his hands! Which is so wonderful to see as Keaton has also started clapping, so they both spur each other on. I actually think Deqlan understands the concept of clapping pretty well. Once he has done something wonderful and clever we all cheer and clap and he is starting to clap with us now.

Deqlan has also started jumping on his own feet. He LOVES his trampoline and makes sure he gets every possible bounce out of it, when he is on it, but now actually tries to jump on his own on the ground - another great milestone for our boy!

We started speech and occupational therapy as well as a little play group at the baby therapy centre. Speech is going very well and Martie is always impressed with Deqlan. Anri Louise had her last seesion with Deqlan yesterday as she is leaving the centre due to ill health and having a very busy schedule. We are very sad to see Anri Louise go - she really got alot out of Deqlan and really learnt to read him well. Yesterday, was actually the best session he has ever had with her. Most of the session was spent running up and down the corridor with Anri holding Deqlan upside down and bouncing him as they ran - Deqlan kept asking for more and more and giggled most of the session - it was truly wonderful to see. Anri also gave us some very vital tips and ideas and how to read Deqlan and what senses need regulating and what times and how to regulate them. Once that sense has been satisfied , Deqlan immediately calms down and is more willing to do what you would like to do with him. For example if Deqlan is squeezing between tight spaces and under and over things , he is most likely requesting deep pressure and we can do this by rolling a big ball over him or lying on him . If he comes to be holding his hands out jumping, we can do an excercise of running and bouncing Deqlan up and down at the same time. So we are definitely going to give this a go.

Deqlans little play group was really lovely and we were so excited to be amongst other little friends in a classroom environment for the very first time. Deqlan, however was not. He cried and wanted to get out the room. But we managed to keep him inside for the half an hour and even got some participation from him during the animal themed session. He did decide to choose some crayons and draw a tiny bit on his picture. He did enjoy putting his hands through the rice and throwing it everywhere! Keeping in mind, that is was the first time Deqlan has ever been asked to participate in a group , we think he did great, even with the tears. We are going to try and get his sense regulated before he guys and take ques from him during the session to see how we can get him to participate and ultimately enjoy the session more! Perhaps, the noise of the other kids was to much for our soldier and if we can maybe get some headphones or play some white noise, as Anri suggested, perhaps his focus will shift to enjoying the class. Esedra and Gail our doing the classes, and we are so happy to see Esedra again. Every week is a different theme and a lot of lovely themes coming up that we know Deqlan will love , like water and baking and transport! Deqlan and I and Gail made Deqlans first official picture, a lamb with cotton wool . I am so very very proud of this pic and have hung it in our play room, Deqlan has been pulling the cotton wool off the lamb with great delight and enjoyment.

Our diet is still going great , I got a lovely book SPECIAL DIETS FOR SPECIAL KIDS 2 from the states and it gives great ideas for recipes which we are going to try. I must say the food that Deqlan has been eating has even me bored stiff - he doesnt seem to mind it but i would definitely like to try and spice things up a little for him. We are not 100% on the GF/CF diet as yet, we plan to be completely within the next few weeks and we are so confident Deqlan will happy on it to. My mom and I were just saying how Deqlan doesnt even ask or go looking for his beloved biscuits anymore, he doesnt even miss the cream soda ! One thing he is aksing more for is his milk formula, niddo. We cant have him on rice milk until after our blood and urine tests, as the rice milk has some vanilla in it , and this can affect the outcome of the urine tests - so we will pick up on that again next week.
Thomas is still the favorite kid on the block - Deqlan LOVES LOVES LOVES his Thomas collection and even tries to sleep with at least 1 or 2 of his Thomas trains. They come everywhere with us. Latest in his collection is one Dad got for him - you can change 'cds' of the Thomas Tune, London bridge etc and the train moves and sings and makes engine noises - to adorable. Deqlan is as bright as a button with his dvds though - we have about 6 different Thomas dvds and you cant just put anyone one - he wants to see the dvds and he knows exactly which one he is choosing to watch. The one in particular at the moment, is the chugga chugga dance and the one with the ducks, which i mentioned before he calls ' kuck kucks'!

Deqlan is thrilled to be around sand at anytime of the day, anywhere he see's it. This to is defintiely a sensory experience Deqlan craves and we are all happy to let him do it - even if it means bathing twice a night! With all the rain the sand has turned into mud and it makes the experience even better for Deqlan.
His laughter and smiles continue to complete our lives. Its an absolute joy watching Deqlans expressions and hearing his beautiful laughter as he watches mumble from happy feet, escape from his egg, or watching the naughty noo noo swallow the telly tubbies blankets or them making tubby toast. Its an absolute joy to listen to his giggle as Mark makes bouncy ball sounds from his favorite episode of Noddy. Its the best feeling in the world just holding Deqlan, him running up to me giving me a hug or a kiss, cuddling snuggly with him at night, trying to envelope every single breath he breaths out , trying to kiss him as much as i can , before waking him up. Deqlan is the greatest gift Our Lord has given us, we are so very very blessed.

Nanna and I will be attending a course on 14 & 15 Feb at the Little Stars school in Johannesburg. The course is run by Jenny Buckle who formed Reach . She is the proud mom to 4 teenage boys, which include a set of triplets on the autism spectrum. Through hard work, determination and learning every technique in the book , Jenny has been able to help her boys tremendously and we cant wait to attend the course. It entails ABA therapy - APPLIED BEHAVIOR ANALYSIS, which is a therapy based on a reward system. RDI - RELATIONSHIP DEVELOPMENT INTERACTION - to help the kids understand the true meanings of a situation, for example making a friend, that they understand the emotions, that its not just a 'robot response' which is taught to them. It also involves lots on the Gluten Free Casein free diet and we are so excited to learn and get some answers answered for our little guy.
We got Reece's second birthday party this weekend and Cadens 1st party on the 21st , so we are trying to find some delicous Gluten Free Casein Free cake/cupcake recipe so that Deqlan can enjoy cake at the parties! Logs is also coming to us for the weekend and we cant wait to catch up with her, we miss her terribly during the two weeks we wait to see her!
Meggie, Mark and I went through to Vanderbijpark on Monday for Ruans funeral while Nanna watched the boys with Joycies help. It was one of the most heartsore experiences i have ever had. To watch Yolandie and her parents in such pain and sorrow was heartbreaking. This is the most amazing family and by the grace of God and lots of prayers , they will continue going on. Meggie, Yolandie and Yolandies 4 sisters all wore purple , to mark Ruans love of Barnie. While we were at the grave site, 4 doves flew above , it was during a prayer and Meggie and I happened to look up - dont think anyone else saw them. I wanted to tell you about our guardian angel on Monday. We got lost , not to far from where the church was, but we would never have found it by ourselves - we stopped at a garage and asked a man to help us find our way. He was so kind to leave the garage before pumping his wheels and feeling his tank to get us to the church in time. As he pulled over on the road to show us we were at the church his car cut out. He had run out of petrol! How amazing is our God to send us this angel when we needed him and that he lasted just until we got to the church? Mark helped the man by going to get him some petrol and he was on his way. Please continue to pray for Yolandie and her parents, they really need our prayers right now for God to shine His light on their journey.
Please also continue the prayers for little Declan and his family - he really needs every single prayer we can offer for him. Claire has just told me that Declan himself has upated his blog now, so go and have a read and leave a message of hope and prayer for him please.

We also ask you to pray for our buddy Will, his make a wish trip to Disney was cancelled as he needed to get a blood transfusion - please pray that Will feels real better real soon so that he can go and have some fun with Mickey and friends.
Please also pray for Connor Gerber today as he has his bone scans done, please pray for stable and even better, improved results!
Hope you are all well and happy and healthy and thank you in advance for your prayers for tommorow. I promise to update as soon as we are back, trusting in Our Lord that it will be great news. Please pray for our anxiety to cease, as we know God has plans to prosper Deqlan and not to harm him. Please pray for our patience as we await all the results.
God Bless, lots of love
Mark Samm Deqlan Logan


Ferreira Family said...

To Master Deqlan,

I am so happy to hear you are dong so well.. It makes my heart very happy to know that you are well and that God is keeping you healthy..

You are indeed special and I love your smiles in the pictures, it just shows what a happy little boy you are. I think you are going to enjoy your playgroup, each time you go will get a little easier and a lot more fun.. Enjoy!

You have a very special mommy, you know! Such a strong mommy.. SHe is so positive and so trusting.. I think she was handpicked, an absolute rose, to care for you. What a perfect match, A rose to watch over a perfect soldier, a match made in heaven.

Good luck for tomorrow, sweet baby (oops, I mean " big") boy! You will be in our thoughts all day and in our prayers.. We pray that all the nasty blood work will not be traumatic and that it will be over quickly. We pray for great results, which we know will be!

Have a good night tonight and sleep well. God Bless you and keep you safe.

Lots of hugs, love and laughter..
Claire, Stephan, Hannah & Ethan

Debbie said...

Praying so hard for you Deqlan, for good results and a smooth visit.

I have also been absent Samm, it is sometimes too hard to write when so many around you are in such unimaginable misery.

I am so excited to hear of all that you have going on with the diet, therapy, playgroup, etc...I love hearing about it all and how it is helping Deqlan. The playgroup story remeinded me of Connor last year when we first started attending his playgroup-same reaction! Now he is much more content and not as frightened.

Love you all and keeping you in our prayers,
Debbie and Connor

Caden Paul said...

Will have our camo on for tomorrow!!!

God Bless
Elriza, Wes & Caden