Grayson Doing Quite Well

Written by InnocentCharmer. Posted in 2013, grayson, Special needs

I thought I would share a quick snippet of a session Grayson did for Communication Therapy yesterday.

He has been failed a lot by the NHS these past few years, he has had no Physio in over 6 months, or Occupational therapy in over 3 months, but my little boy seems to manage what he can on his own merit. He hates all his therapies as they are not consistent and Grayson needs routine to manage with everyday life.

Life has been tough for us all these past months, Grayson at best is only sleeping 5 hours a night, most days we are up with him before 4am, some days from Midnight, they have no way of helping him at present which is torturing for us all, especially on days when you see he is too weak to even perform his normal. But today he amazed me by doing so well in his Communication appointment after less than 7 hours sleep in 48 hours.

I thought I would share for you all to see.

Please Stay With Us Mr.Happy

Written by InnocentCharmer. Posted in 2012, grayson, Special needs

Some of you will know that I have struggled the past few months to deal with Grayson’s major personality changes, I am not ashamed to say I have cried most nights (and even some days), it has caused rows with myself and Mr Innocent Charmer, it has caused me to go within myself and to be very self loathing.

Grayson was always no matter his huge amount of problems and trials an incredibly Happy little boy, people would comment everyday that they had never seen such a smiley happy child, we would be stopped in the street, he made the most immense eye contact you have seen and from a very young age knew how to make you feel the most special person in the room.

They thought Grayson was one of the very few special needs children with severe Brain damage that would not suffer with Autism, all for these reasons, then it all changed. I can’t say a certain date, but it started around 10 months ago, the boy who would always smile and giggle, who would play with toys in his own little way slipped away, at first it was gradual but very quickly my Mr Happy become introvert, we lost eye contact, smiles, and then the playing with toys all but disappeared.

So I can not describe the feeling I have had this past month to start seeing a glimmer of my son returning, the smiles are back, it’s amazing, as quickly as they disappeared they one day reappeared, as has minimal eye contact.

My Step Mum babysat Grayson last week and commented on how un-nerved she felt when through a whole meal of feeding Grayson he made solid eye contact and chatted (in his way), so much so she rung me in tears, you see this hasn’t just affected Ashley and I but our family as a whole.

Having a disabled child most days for me just feels like everyday, I know NO different, I had never had a child before Grayson so in a way this is our normal, but I can’t lie having no contact with your child and not knowing what is happening in his head is isolating and upsetting, so to feel a glimpse of my Mr Happy back in my life has allowed me to cry some more, but not just tears of fear (as he may retract back) but of happiness and relief that I feel Grayson is smiling again on the inside and out.

I just pray that he isn’t taken back off of us as quick as he has returned.

A Little Anxious – Yep!

Written by InnocentCharmer. Posted in 2012, grayson, Special needs

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Well finally after being 2 months late as I bathed the kids last night the call came.
28/29th May Grayson and I shall be back in Evelina Children’s Hospital, this time for surgery. Not major surgery. But let’s be honest, any surgery on a 3yo who weighs less than 26lb and has respiratory issues is pretty serious.
So am I anxious about the actual surgery? Not really. This will be Grayson’s 4th maybe 5th GA (not too bad), I for the 1st time have real trust in his surgeon, it’s a routine investigation plus biopsies of his muscles and skin(yuck), so nothing life threatening.
So why am I anxious, this surgery will hopefully give us answers about Grayson’s hips, I am going in hoping they say “bad damage, must operate” awful huh ? But the alternative is worse, the alternative is even if my little boys brain switches on and says “hey you have legs use them” that he won’t be able to, it means that his hips are non treatable, that his muscles can’t be lengthened or extended, it would mean
MY LITTLE BOY WILL NEVER WALK!!

Don’t get me wrong in my head I am not sure he ever will, but that is totally different from being told he physically can’t.

So whoever holds the dice, please for once let my little boy have the right answer. He is amazing, I know he is, so give him a chance to shine.

The Support For Grayson Has Been Immense

Written by InnocentCharmer. Posted in 2012, grayson, graysons great fun day, Special needs

 

I never thought when I came up for the idea of Grayson’s Great Fun Day to raise money would I be met with so much support, I mean I knew SWAN fellow Mama’s would be great, close friends and family, but the support we have received online has been out of this world.

Firstly you have my amazing friend Sonia of Mummy Loves – she is running an auction for Grayson’s Trike which starts on Facebook on April 1st, watch this space, you can go and check out the 100 items that have been donated, there are some crackers.

Secondly on the subject above the amazing companies and people, only a handful who actually speak to me that have donated prizes to help my little boy get his trike, I don’t think there is a way I can say Thank You – but Thank You anyway.

Thirdly – The gorgeous Becca of Life, Love & Beauty has given up Chocolate till Grayson’s Fun Day, how truly awesome is that, I mean I am not sure I could, please go by and show your support and sponsor Bec in her truly amazing event.

Fourthly – All the great friends on twitter and Facebook who keep sharing my links, RT tweets and just spreading the word, to each and every one of you Thank You from me and the boy.

Lastly, the following bloggers, not even being asked have done Blog Posts on their Blogs to help raise awareness for the Funday, SWAN Babies and Grayson, each post makes me cry ( I am not kidding) I go back and read them frequently, they make me so thankful to have found Twitter and the beautiful friends I have through it.

Go check out all the posts and their beautiful words to my little boy.

All this is fantastic but of course, I am going to ask for more, if you want to know about the FUNDAY go take a look, if you would like to help me raise awareness please do a post yourself, April 1st Sonia’s Auction starts for 10 days, please help me spread the word then and lastly if you have a nice donation for our raffles, or little treats for kiddies for the Lucky Dips on the day we greatly would appreciate them, nothing is too Small.

So thanks again to all, Grayson, Myself and my Whole Family Thank You.

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