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Friday, July 29, 2011

happy, home and blessed




we are happy, we are home and we are so blessed

deqlan was an absolute star today - from the moment we woke him up right up to going into theatre he was in such a lovely mood

he only asked for "milky hot" or " milky spring" ( juice) once and was happy when we said we would get him some after theatre.

wehn we had our initial consult with dr venter in the week he told us that they use sevoflurane and not nitrous oxide- if you read or speak to other families with kids on the spectrum, there are some that will tell you nitrous oxide caused regression in their kids- even typing autism and anesthetic in google will lead you to many studies on this fact- some of their systems cant detox these gases and it add another injury to their bodies

when we met tghe anethetist today she says she uses nitrous oxide- this put us into a complete spin and wondering if we should go ahead with the procedure. she definitely had not heard about the concerns we had and was quite adiment that this was how she does things.

we had a few minutes to discuss this between nanna, mark and me - and i just asked god to guide us on the right decision- i was very close to saying lets go home,but i was filled with peace and calmness as was mark and nanna. we decided to chat to dr venter while waiting to go into theatre. deqlan was jumping on the hospital bed , we were hitting the balloon ( a hand glove blown up by one of the nurses) he was in wonderful spirits laughing and smiling. dr venter said that the nitrous oxide is the carrier for the anesthetic but sevoflurane would be what kept deqlan asleep. so we all decided to go for it

once dr venter came out to tell us all went well he told us they did not use any nitrous oxide in the end, which we are so happy about- we dont understand why it couldnt be done in the first place!!

he says deqlans tonsils were very bad and no more fibre in them -just filled with yucky stuff so it was the best decision to take them out now

deqlan woke up in recovery and immediately wanted out the bed. i ran to the nurse as i saw her carrying him out and he started getting upset. by the time we go to the room he was crying and couldnt get comfortable- eventually he settled on the bed with dad for ten minutes then woke up again. crying. more crying - but it was mostly from the anesthetic and not pain related. some cries were different - pain cries. dr anne his paed popped in to check on him to and megs also caeme to see our big boy. we were allowed to go round 1130€ after deqlan had some juice - by this time he was ready to get out of that room and immediately calmed down when we walked outside

he was very happy to be home amongst his own things and his own space and we were dleighted to see him finish a bowl of animal dhaped pasta and two glasses of spirte ( yes we allowing sprite as the fizzy coldrink helps heals the tonsils)

deqlans nose started bleeding and i saw some blood in his mouth- but nanna reassured me its from his nose ( from the pipe) not from his tonsils

nanna has spent the afternoon with me and we got deqlan to sleep comfortably after some pain meds

thank you so much nanna for all your never ending help and love and prayers and support and fun and hugs and smiles - we love you beyond any measure, you are truly our guardian angel on earth


thank you all for your prayers and messages and love, will keep you posted and ask you to please continue the prayers for no bleeding or infection and for minimal and manageable pain and a speedy recovery

thank you lord for guiding us and always taking the very best care of deqlan - there are not enough times and ways i could thank you for what you do for us you are a mighty loving merciful god

enjoy the weekend everyone god bless all our love
mark samm deqlan logan
rejoice in the lord always and again i say rejoice


Thursday, July 28, 2011

bye bye tonsils






tomorow, our gorgeous deqlan will be having his tonsils and adenoids removed

we saw the ent doc on tuesday and he says the tonsils look bad- deqlan has chronic tonsilitis which is not something that is going to go away . so instead of giving antibiotics every few weeks and then fighting candida after weve decided to go with the drs recommendation to remove them.

deqlan is first on the theatre list , we need to be there by 630am and deqie will probably go in at 8am. hoping he will want to eat and drink something so that we can go home before lunch time

nanna is making a beautiful flip file with logos and pictures of all deqlans current favorite things including dstv and the channels and programmes, cars and airlines - thank you nanna for all your love and time and efoort you put into deqlans beautiful book to distract him and keep him happpy tomorow, thank you for all your continued love and help and never ending support

meggie and the kids made a delicious everything free cake and surprised deqlan with two pieces to enjoy this afternoon, you are our very own master chef megs thanks for being so thoughtful and kind

ive gone to stoke up on sugar free jelly, sprite , biscuits, biltong and hope something will seem apealing to deqlan

please pray with us that the anesthetic does no harm - sevoflorane will be used, same one we requested when deqlan had his dental procedures done . please pray for god to work staright through dr venter and the anethetists hands and for all to go beautifully. pplse pray that deqlan isnt scared and upset and that he has minimal pain. plse pray that there is no bleeding or infections. plse pray we can keep deqlan happy and feeling as great as we can. plse pray for him to make a speedy and excellent recovery

thank you all prayer army will let you all know how great it went!

god bless and all our love and tx for the prayers
mark samm deqlan logan

sacred heart of jesus we plave our trut in thee all for thee oh lord oh my jesus all for thee

Sunday, July 24, 2011

"stop biting your nails"

our gorgeous boy started biting his nails quite a while ago but its really gone to another level lately!!! telling him not to do it doesnt help and the state of his nails is really bad at the moment, he bites them that they bleed and really is past the nail bed already! when we shout not to bite his finger nails he tries with his toe nails!!! arrrgggghhhh!!!!


we got some stuff to paint on his nails called bitterex which really is very bitter! it is putting him off a little bit, but he is still trying to eat them every chance he gets !!!


any advise on how we can break this habit??? deqlan comes for a long line of nail biters including meggie and uncle ken - maybe its in the genes?

p.s- deqlan delighted to be back at school :)

have a great week everyone
god bless all our love
mark samm deqlan logan

i can do all things through christ who strengthens me

Saturday, July 16, 2011

Autism IS treatable

ggorgeous view of table mountain
look top left corner for deqlans name :) at the start of the conference they asked usto write down the names of our loved ones affected by autism and at the very end there was a phsychologist giving us survival tips and she ended off with this photo saying this is are biggest reasons ! of course, i was moved to tears and just wanted to get home to love and hold me gorgeous boy!
some of the grounds at the hotel i stayed at, lord charles - was really stunning! the weather was amazing it definitley doesnt seem to be winter in the cape!
view of strand beach! bron and her gorgeous kids tool me for supper on the sat evening and were so kind to take me past the beach just as the sun was setting, it was truly magnificent!

was so proud to wear my badge!
early morning view from the hotel - cape town is such a beautiful city!
just before take off, dada and deqlan watching the planes- of course mama cried when it was time to say goodbye -dada and deqlan watched me go through the security check and a blew deqie kisses, and by himself without anyone prompting him, he blew me kisses back :) what a stunning gift!

table mountain on my way back to the airport



what a stunning conference! i learnt so very much and wish i could tell you all every single detail but it would take me two days to type!

some highlites;

we had speakers from south africa and two from the usa - all fantatsic in the subject they spoke on.

dr louise lindberg, deqlans dan (defeat autism now) doctor, started with the overview and what the dan protocol would be to treat those with autism spectrum disorders


we had a fanastic , very experienced speech therapist give us insight onto how she treats and helps the kids she see's with asd. she tries to consider every possible thing that could distract their sessions , and adjusts the environment accordingly - using items that specific child relates to. she gave us stories of kids that have sensory issues - for egsample something she had cooked the night before had left a fishy smell around her practise based at home, and her patienr was so overwhelmed by it because of his sensory issues. she loves using the ipad for specific autism related applications and has seen a fantastic response in the kids - mark and i are currently looking into this for deqlan, we have heard amazing things about it!

we then had dr julie buckley from the usa tell us the story of her vaccine injured daughter with pictures of her before her vaccines and after and how her 4 yeard old vaccines triggered her autism. she showed us pictures of what her daughters gut looked like and what normal guts look like - you can not believe what some of these kids stomachs look like, its shocking - some cant express the pain they in , but we lnow all about the gut issues in the form of candida, watching our kids lay on the floor, so that they have pressure on their tummies, what their bowl movements look like and what they should look like - it took them 5 years to get their daughters candida under control and one day she told her mom , my tummy doesnt hurt anymore - she thought it was normal for your tummy to be sore all the time, she didnt know what it should feel like until her gut was healed! she also gave us so many ideas and hints, my favoirte being " cashew creme" - we need to feed our kids brains by giving him the healthy fats like avo and cashews and using coconut oil to cook with - cashew creme is amazing brain food and if you give your child 2 table spoons before their meal you will be giving them such a great gift! i made some today and was very pleased at the outcome - deqlan even had the two tablesppons which i was so pleased about! he was weary of the very smooth texture but did eat it! it tastes a little like reeces pieces to me!

dr buckley also gave another lecture on " care for the caregiver" which i absolutely loved!how important it is for the caregiver of the child with autism to take care of themselves. like the airline safety demonstrations display but the oxygen mask on yourself first before helping others- if you dont look after you, you cant take proper care of your child. she stressed how important it is to sleep enough, eat properly and specific techniques to calm down and go to our happy pplace, before reacting to situations - stress damages our cells and harms our bodies! there are so many caregivers and doctors that are getting sick with serioues ilnesses because they didnt tale better care of themselves. she also made us understand the importance of date nights and conversations not revolving around autism with your loved one, all the time! date night could even be a trip to the shop , just husband and wife, not mentioning autism , at all!


dr peta cohen, from new jersey, actually lived on south africa 20 years ago ans was so touched to be back!
her first lecture was on what you can do if you planning to fall pregnant and are pregnant to prevent autism- of course there are many factors that people believe trigger autism- our enviroment, toxins, genetics - but she had some ideas ( along with studies) on what we can do to make sure we stay away from the things we can. from eating only organic food , not using tinfoil, staying away from soya,not buying products with added vitamins to staying very far away for corn syrup and not letting your cell phone sit in your lap and in your pocket!


hannah kaye, a nutritional therapist gave us the breakdown of all the types of diets parents can try for their asd kids - the most effective and popular one being the gluten and casein free diet which means removing all proteins from wheat and dairy. dairy takes around a week to leave your system and gluten around 8 months!!! the other popular one is specific carbohydrate diet - which basically means a diet of just meat, fruit and vege, nuts and honey. this definitley wouldnt work for deqlan as he doesnt eat vegies , yet, isnt allowed fruit because of his candida issues and reacts to honey! there is also a no phenol diet- phenols are the colours in foods and lots of kids with autism react to them! each and every child is different so there is no one fix for all - you have to see what works for your child and your fanily! i was touched to see how many mommies were on the same diet as their kids !
of course hannah stresses sugar is a no no and wants us to get our kids eating liver once a week!!! eekk! ive gotten mark to agree to make it for deqlan, i cant do strange foods like that and i have a feeling our fussy eater wont be willing to try eat either!she also whole heartedly agrees that food affects our childrens behaviour!! she also said neuro tical kids would need to be given a new food up to 12 times before trying it where kids with autism may take 25, so hang in there and persevere! hannah is based in cape town but consults in jnb to so hopping we get to see her soon!

we had the founder of the snap programme give us a talk on autism in the teenage years and what their school and support groups focus on- so awesome to hear that they have social groups that get together weekly and have real friends they make at them :)


prof hanlie smookman give me excellent advise on preparing deqlan to get his tonsils out, as we know thats going to have sooner then later - and its keys to boost his immune system prior and help him to detox - so we increasing vitamin c and starting milk thistle which helps liver detox


there is already talk of another conference next year which i cant wait for, may just have to turn it into a holiday to, cape town is just so beautiful!

i left feeling very engergised, grateful and blessed and full of ideas for deqie and to share with others

thanks so much to anna and lauren and all at the afa for a great experience!



be still and know that i am god

3 and a half years NED


we humbly thank you lord that todays marks deqlan being ned for 3 and a half years!
thank you for answering our prayers as we pray for them, for all your love, care, miracles and healing!
plse continue to heal our beautiful boy totally and permanently and keep him ned forever and always-we pray that this is your will lord jesus
thank you for deqlans prayer army and all their continued love prayers and support
we love you lord and thank you with our all and everything
love you to infinity and beyond beautiful boy we are so proud of you, our gift from god, our little boy " full of prayer"

Friday, July 15, 2011

angel Jed




today was a day that people around the world celebrated the life of jed

jed passed away on monday evening after fighting cancer of the brain for over 3 years so bravely with a smile and with a mom and dad that did all they could and more to help their little mr noonie pants

we released green ballons for you today jed and we all wore green. deqlans nanna also lit a very special candle for you

we promise to continue praying for your mommy, daddy, gwanies, thami and all those that love you


jed matters and always will, you touched so many around the world, you will never be forgotten

rest well sweet jed


Sunday, July 3, 2011

a priceless gift


next weekend, i will be attending the autism is treatable conference in cape town!

im so very, very blessed that the amazing folk at association for autism are sending me !

i am going to miss deqlan more then i can put into words, but as my very wise mom reminds me, its for deqlan that i am going!!

i leave friday afternoon and get back late sunday night. the conference is at a hotel in somerset west in cape town- i havent been to the cape in ten years!

its going to be a jam packed two days starting at 8 and ending at 5 with speakers from south africa and abroad. im particularly interested in the nutrional therapists talks and hoping to get some time to ask some of the hundreds of questions i have


will keep you posted with all the news and details!!

i just wanted to say a huge thank you to anna and lauren at association for autism pretoria for giving me this mazing privilige and priceless gift to go and learn and ultimately help our precious deqlan and many others! thnk you from the bottom of my heart afa!