Fight for Charlie, Health, Occupational Therapy, Parenting

First OT session ………

So we did it, we survived Grayson’s first OT session!  It was pretty uneventful.  Gray and I drove into town, parked around the Outer Circle of Regents Park and walked, yes walked to the clinic.  Grayson was reasonably cooperative and amused himself looking at builders along the way, as well as peering down at he basements of the offices / houses we past.  He loves the book Funnybones where the skeletons live in the cellar, so he was on the look out for skeletons!  A quick dash into Natural Kitchen for a healthy lunch and we were on our way – ok ok  after I had had to leave the queue twice to find the little monkey who had run off around the shop / cafe.  One blip is allowed right?!

Grayson met his OT Nancy and off they went to ‘play’ leaving me with two other mummy’s, both of whom were over with their children from Moscow for an intensive therapy week.  It seems the clinic has lots of international children receiving treatment.  I dread to think how much that all costs, but it makes me feel even happier with our choice.

The 45 minutes passed almost two quickly, I wasted too much time on Instagram and not enough time doing the admin I had planned on doing.  I was invited in to see what Grayson had been up to.  He had been having a blast, throwing himself around an obstacle course, and bouncing on a mini trampoline.  All great stimulation for his vestibular system, but I immediately thought it was going to be a quiet drive home, he would be exhausted.  He really settled in well, and seemed like he had been going for years, I adore that about him, how he just waltzes in like he owns the place and says hello. No homework this week, so they have eased us in gently, but I need to re read the report and understand whats going on more.  We are all on such a learning curve at the start of this new journey.

It was a bit more of a struggle to walk back to the car, more due to sheer exhaustion than anything else I suspect.  I did a lot of carrying, bribing and encouraging, and we got there without too much drama.  Within about ten minutes he was snoozing blissfully, good old Classic FM and the line ‘Mummy wants some quiet time’ does it every single time!  I am so proud of my little bean, he did so well today.  Hopeful, but not delusional that next week will be as easy.

Bedtime however tonight, oh my goodness was tough.  It went on for two hours. Lots of tired tears later, from us both, he finally nodded off and I snuck away downstairs.  I was getting so frustrated but having read about Baby Charlie’s family loosing their court battle with Great Ormond Street today I felt awful grumbling that my  darling boy would not go to sleep, I just lay there crying for them, and holding him close.  I am so so blessed to be able to tuck him and Ruby up every night and to hold them close.  I cannot even begin to imagine what Charlie’s poor family are going through tonight.

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Health, Occupational Therapy, Parenting, sensory processing disorder

Assessment Day

The day has arrived, Grayson was assessed today for Sensory Processing Disorder.  Finally I feel like I am moving forward in this journey, perhaps to a destination now and not just around and around in circles being told I am either making it up, exaggerating, my son is naughty, or that their might perhaps be something wrong.  He is a sweet boy and I have known that something does not add up for a good year or so now.

The clinic we were recommended in Central London, has great feedback, and I trust the OT who recommended it completely, she is a friend of my sisters and is also a specialist in Sensory Processing Disorder, just unfortunately has moved back to SA.

Within five minutes of being with the occupational therapist she told me he is a text book case.  The relief was immense. I left them to it, the session was meant to be just the two of them, no mummy involvement although I would have loved to have been able to spy.  The session was a two hour play based assessment.  I popped for a take away cuppa and came back to the clinic to try and relax whilst impatiently waiting.  Grayson seemed to have a great time, he loved his therapist and assessor and seemed to respond greatly to her.  He is such a sociable little boy, such a chatterbox (hmmmmm I wonder who he gets that from!) I am so blessed that he is like that. I love his personality, even if he does drive me bonkers and is such hard work.

So now the next part of the wait begins, we have to wait two weeks for the parent meeting to discuss the assessment.  It is going to be a long two weeks, I just want to get on with helping him now and helming us all.  Its hard having a child with additional needs, with no guidance or support.  It puts pressure on us all. God knows my relationship is in tatters.

Health, Parenting

Blood Tests

So today Grayson had to go for more blood tests following our consultant visit a couple of weeks ago.  I never highlight the fact we are going for tests, just that we are going to the hospital where the big play room is.  He runs happily all the way from the carpark, pulling me along the corridors, pretty much running into everyone until we reach the Children Day Unit.  He knows the whole way, and typically, the hospital, like most, is like a rabbit warren.  He charges past the reception desk, saying ‘I’m here’ before dashing straight through to the huge play room that connects the Day Unit with the Children’s ward.  There the fun begins, he goes from toy to toy, not knowing what to do first.  I check us in at the desk and the play specialist follows me to find him amongst the toys so we can get the ‘magic’ cream on his hands ready for the blood tests.  Despite knowing this does not hurt, he always gets a bit tetchy about having the cream on his hands, and always tries just the once to rub it off.  The more I see his funny little ways, the more I wonder what are caused by perhaps a sensory disorder and what are just him being a pickle.  Cream on both hands successfully, Grayson continues to play.  He chats to everyone in the play room, even the fish!

Roll the clocks forward forty minutes and we are ready for the tests.  Grayson at this stage is bossing the lovely Play Specialist around, dragging her from place to place, demanding she joins in with his games. She is truly fabulous and he is at complete ease with her.  He happily goes into the side room with her and clambers onto her lap so he can get onto the iPad.  Technology in these situations is a lifesaver.  One arm draped around her back, cleverly caught by the Dr and iPad firmly clutched in the other he gets engrossed in whatever he is watching.  He has no clue whatsoever that enough blood has been taken for seven test bottles, or that a needle has gone into him.  He does not even flinch.

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I am so grateful to the wonderful Paediatrics team at Lister, they are truly wonderful.  The care and compassion they show, even for something as mundane as a blood test is amazing.