>Grayson turns 3 or is it 10 months???

Written by InnocentCharmer. Posted in 2012, addison, autisim, baby, boy, brain damage, development, disabled, evelina, genetic condition, global developmental delay, grayson, london

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My Beautiful boy on his 3rd Birthday

On 4th Jan Grayson turned 3 years old, if someone asks howold he is I say 3, but when we go to hospital and see our relevant team membersor someone new and they ask Grayson’s age I now say 8/10 months. See Grayson’sreal age by developmental purposes is that.

On Thursday last week we took the trip up to EvelinaHospital in London as we have so many times before in this past 3 years, to behonest I knew this appointment would be a waste of time as many are, but youalways have worry in your head and hope in your heart.
We met with Grayson’s Neurologist, this was an emergencyappointment after they have found new black spots on his MRI and seizures onhis EEG. I had a feeling I knew what the answer would be that as usual”they just don’t fully know when it comes to Grayson” and that daywas not much different.
They confirmed that he is having 3 different types ofseizures, that they are showing in his brain wave movements but they are not epileptic,they aren’t 100% sure what they are but call them “Baby BehaviouralSeizures” this means that the brain is reacting in everyday life to thingsthat it can’t just compute or finds hard due to the brain damage. They don’tbelieve them to be damaging to the brain but obviously this is not 100%, butdue to the nature of the seizures they cannot be medicated and we just have tolive with them, mixed emotions here, no I don’t want to medicate, but I alsohate to watch my little boy laughing constantly at 3am when I know it’s not outof pleasure, or just to switch off for 2 minutes in the middle of the room likewe don’t even exist. But hey ho, that’s Grayson!

 He then went on to confirm the Black Spot that had come upwas in fact his existing brain damage which had grown a little in size as hehad grown and was finally sealing off the dead part of his brain. But no worry,well thanks, lastly we had some hitting news, he confirmed that he believes99.9% that Grayson’s condition is Genetic but as they don’t know what, theywould never be able to test future embryo’s, we would just have to take therisk, he said they would probably not even tell until the baby was born orpossibly a couple months old. This was not fully new in our heads, but to hearit stated has made my heart stop a couple of time this past week, I love myson, I love who he is, I love who he will be, but if you gave me a choice Iwould change him, some say I am wrong for this, but until they have lived in myshoes I ignore them, why should my little boy endure pain, why should he not beable to talk, why shouldn’t he be able to enjoy a sandwich or walk run and playthat’s his right !


Grayson on a day to day is hard work, he can’t feed himself,he can’t walk or talk, I have no qualms doing anything for my son, I have neverknown any different, but could I bring 2 children up like this is the question? Would I have the time, would it be fair to Addison ? But would it be fair toAddison either way, you see I watch Addy even now at 8 MThs and she has to playon her own, Grayson has no interest in her, it’s not his fault he doesn’tunderstand but I hate the thought of her being an only child, I loved having 3siblings, you never feel alone, you never are alone, but with 2 special needs children’swould we have any time for Addy.

I know in my heart having more children is so important toAsh and I, we love our babies, we love the thought of years to come when theyare playing together, days at the park, snuggles in bed, I feel slightlycheated that we may never have anymore, don’t get me wrong I am hugely thankfulfor the 2 I have I KNOW we are luckier than some, but only with time am I sureour heads or heart will make the decision, I know either way we would love thatchild, we would care for it just as we have Grayson and Addison.

*God if you have made it through this half there’s more,thanks for taking the time*


He does love his powder bottle

So to Grayson being 10 months old, on Friday Grayson had his2hr Developmental Assessment, as Grayson is now 3 these are more crucial as wehave to start a statement process for education basis, to try and decide whatthe government feel my child can handle (ugh), also at 3 is when the NHS statea child should be no longer classed as a baby, it was decided (finally) thatGrayson has huge social issues – I mean he doesn’t even make eye contact – andthat the time had come to test for Social/Communicative Disorders e.g. Autism,I already know my son has autistic traits but what they shall decide will beinteresting. His Paed reviewed Grayson in every aspect of his life and finallyfor the 1st time gave us his real ages….

Social and Communication – Speech/gestures etc. – 6 monthsold
Physical Development – Walk/Stand/Sit etc – 10 months old
Communicative Play – how he plays with toys and learns – 6/8months old

I kinda had this in my head as I now have Addison to comparetoo, so this was not a shock but was nice its now down in writing, it’s veryhard to make people realise how Grayson is, I mean as many of you read this Iam sure you sometimes wonder how does he act, by the most part he is like asuper skinny, tall 8 mth old but without the kisses and cuddles.

So this past week has been busy in my little man’s world, hehas had 3 hrs of therapy appointments too and this week does not improve toomuch, he has already had 3 hrs of therapy and another 4 to go by Friday and aswell as that we take the long drive back To Evelina on Friday to meet his HipSpecialist and start a whole new line of problems, with potential operations,but he still gets up every day and bum shuffles and shouts at Kipper the Dogbecause he is AMAZING.

>366 – Day 16

Written by InnocentCharmer. Posted in 2012, 366, addison, baby, boy, disabled, family, GIRL, grayson, miracle, photo, photographs, siblings

>This is to date my favourite 366 picture, not because its fancy or by any means the best picture I have taken but because of it’s content and the rarity of a moment caught.

For those of you who don’t know my son has a rare genetic disorder and brain damage, he does not like his sister being anywhere near him and usually screams or pulls her hair, but tonight for nearly a minute Grayson allowed Addison to cuddle him, rub his back and lean on him, it was the most amazing thing I have seen since Addison has been born, there is hope.

>366 – Day 11

Written by InnocentCharmer. Posted in 2012, 366, baby, boy, brain damage, disabled, global developmental delay, grayson, hospital, photo, picnik, therapy

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This little boy makes my heart melt, even when he is naughty I find it hard to be angry with him, he loves having fun and playing up in the air. It’s amazing what he achieves even though he has so little strength.
I really missed my babies whilst at work today, the thing I miss the most about working so many hours is all Grayon’s weekly therapy apt’s, I love to hear of his success and good times but I do miss seeing them. He has done so well today with over 3 hours of therapy and hardly any complaint and his next 2 days are full of hospital apt’s but he still gives a cheeky grin once and a while.
He is my inspiration in life.

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