Logan and I enjoyed watching the Wizard of Oz together on Sunday afternoon, and watching Dorothy head on down the yellow brick road reminded me of our neuroblastoma and autism journeys. I just wish it was as easy, get on this road, follow the yellow bricks and you will get to the answer and solutions you are looking for! Just as this scarecrow, tinman and lion joined Dorothy along her journey,bringing with them lessons , so we travel these roads meeting many new people and friends along the way, and being presented with many ideas to try along the road , which will helpfully get us to pulling Deqlan through the window and back into our world.
We met with Dr Lindenberg last week Tuesday - we travelled through one of the worst freak storms Gauteng has ever seen, may thank the Lord, it eventually eased and we could see where we were going! I have never seen the highway under water before! Well, it was worth the stress to get to meet a lovely Dr!
Deqlan was extremely friendly and even went up to Dr and touched her on her arm and smiled at her. He then wanted to take a teacher at the Little Stars school , by the hand to go and play! Dr asked if Deqlan was always so friendly and we gladly said, yes most of the time! Dr asked a hundred questions and we asked a hundred questions to. Dr Lindenberg is a DEFEAT AUTISM NOW practitioner, who is also a medical doctor and homeopath with many many years of experience in assisting kids heal on the spectrum , by biomedical interventions , things like diet and specific therapies. She is based in Cape Town and only comes up to Gauteng every 3 or so months, but luckily we are still able to communicate through the ease of email and cell phones! Anyway, back to the appointment. Dr Lindenberg believes that Deqlan has real issues with Candida which alot of kids on the spectrum do. She also seems to suspect inflammation of the gut which is also hampering the correct absorption of proteins. We will be doing a WHOLE LOT of blood tests , urine and stool tests to test for specific things, such as candida , and then we will have a more accurate picture of what we are dealing with and what we can do to improve them, and ultimate help Deqlan!
Dr suggested many many books , blogs and websites for us to read, along with lots of vitamins, and of course the GLUTEN FREE CASEIN FREE DIET. This diet means removing anything from Deqlans diet containing gluten, the protein from wheat and casein, the protein from dairy. It will probably go 2 steps further by removing all sugar and yeast to! So this is not going to be as easy as it may sound, as our soldier is eating mostly wheat and dairy at this stage , you know what a fussy and picky eater he is, so this is going to be quite a journey down the yellow brick road for us . We have started the journey though , by removing something Deqlan loves to drink, cream soda! Its just got way to much sugar and colouring and additives, which need to be removed! So he hasn't had his beloved cream soda for 6 days now, i am so very very proud of him! I have done lots of reading and research and even purchased a few gluten free products to try . We need to make sure Deqlan will eat something before we start the diet completely.
I have ordered wonderful books, recommended by Dr L and some new mommies i have met on this journey , who have already been a HUGE help in getting started. Its going to take a lot of organising, alot of patience, alot of time to cook and bake and experiment, but for you Deqlan, we will do WHATEVER IT TAKES!
We started therapy again, and our new speech therapist Martie was very impressed with Deqlan - we havent been there for about 2 months or more, and Deqlan had no problem staying in a new room, with a new therapist. Martie pushed Deqlan a little and we definitely saw some great things, like his eye contact and attention to an activity for a little longer period of time. Next week Monday we will start with occupational therapy again, so things are in full swing!
The new mommies and some professionals on the spectrum, have also suggested lots of other ideas of what has helped them - like epsom salt baths, which detox the system, to making a blanket with pockets of sands to give it some weight, to lie across Deqlan when he craves his deep pressure!
This disorder is soooo wide and soooo deepppp and not one child on the spectrum is the same. So what we got to do is find the keys that fit Deqlans window , the keys that will unlock the things that are blocking his learning and when we do that, he will be alot more open to learning and the world itself!
So we are so very excited to get going and invite you all to head on down the road with us. I know there are going to be mixed days. Some days will feel like munchkin land from the Wizard of Oz, smiles and laughter, lollie pops and fairies and some days may feel like we are stuck among witches and flying monkeys, but we keep our eyes on the goal of emerald city and know that EVERYTHING IS POSSIBLE TO THOSE WHO BELIEVE! MARK 9;23
With God as our guide, we can do this. With you as our friends and family, supporting and praying for us and Deqlan , we can do this. With the passion we have for helping our Deqlan, we can do this. For the most amazing, bright, special, hero son of ours, YOU CAN DO THIS DEQLAN.
Please always continue the prayers for Deqlan to remain NED and for him to get off this spectrum! Please pray for all our warriors and new friends around the world. 1 MONTH to go to our next check up results, blood and urine sample and ultra sound to be done 10 Feb, results 20 feb, please start the prayers!
Have a lovely day, God Bless
Love Mark Samm Deqlan Logan
SACRED HEART OF JESUS WE PLACE OUR TRUST IN THEE ALL FOR THEE OH LORD OH MY JESUS ALL FOR THEE