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Oh Baby Girl

So today I got to see Hallie’s consultant. She has a twitch that she has had since birth. It’s more of a tremor to be honest and is actually really beginning to worry me as its getting worse and worse. It is really juddery, almost fit like, and is in her arms and legs and pretty much her whole body. She started off just doing it in her sleep but now she is doing it when crying too.

So I was expecting to be a little fobbed off to be honest, was not expecting much from this appointment. How wrong was I! The lovely consultant took a lot of time to talk it through, and seemed genuinely interested, which is always reassuring. I showed her the videos I had taken, which kind of captured the ends of the episodes, funnily enough I do not have my phone poised to film at all times. She said they did not look like normal sleep twitches, which is what was suggested it was originally, so they need to be investigated. The word seizure was used a fair bit and that terrifies me.

So in the next couple of weeks we have to have blood tests, an EEG (looking at brain activity) and an MRI. She is only five weeks old, it all seems so wrong and not something a tiny person should be dealing with. Well actually nobody should be going through it, but a baby, it just seems so scary.

Just when I thought we were done with all the hospital time, looks like we are back again. Praying my baby girl is ok, whatever it is we will get through it, however we need to. She is lying in my arms as I type this, and is looking up at me with her knowing, trusting, beautiful eyes. I won’t let her down, I won’t leave her side. However worrying this is, we will get through it together.

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Maternity Ward Nights

So I am trying, trying really hard to think kind thoughts, to send good wishes, to share calming vibes, but I just want to scream SHUT THE *^#+ UP. I feel so mean, so nasty, but so tired and in pain too. Plus my partner is not here talking in a loud normal level voice on the phone at 5am for the whole ward to hear. I can rein in my desire to scream at the labouring mummy, but omg, I am about to tell him to leave the ward, hang up or to bloody whisper.

Labour is different for everyone I one I know that, and having had two emergency sections I guess in a way I have escaped the labour pains, I get the excruciating c section pain afterwards and the sickness, so it’s not all good. But I like to think we are quiet and considerate, well at least my visitors are and I try to whimper quietly.

I adore our nhs I truly truly do, we are truly blessed to have it. I can not fault it, and I am being cared for beautifully. But in instances like this I am all for fundraising for sound proof rooms in every labour ward for the second the pain kicks in. Surely it makes life easier for everyone, the labouring mummy can be as noisy as she damn well likes, the partner can freak out, call the entire world, loose the ability to think, and the rest of us can sleep / not be terrified by what’s to come – which surely makes life easier for the midwives as we are hassling them less and therefore much calmer in our own pain.

Even typing this I feel mean, but it’s what everyone in my bay is thinking right now.

Family, Love, Parenting

Love

Today is Pride Day, and I’ve been looking at photos all over social media and smiling.  Smiling at the smiles, smiling at the happiness, the colours, the ‘**** you’ nature of the banners & posters being held, smiling at the joy, the unity, the equality. Life should be like this always,  it’s shiny and happy and rainbow coloured. We all need more love and happiness in our lives.

It breaks my heart to think of predjuduce and inequality. What right do we have to judge who somebody loves? Love is a good thing, love wins, so who the heck cares who it’s with. In a world full of torment, hatred, war, we need more love. Our children need love, our elderly neighbours need love, the homeless guy on the corner needs love, gosh even the in laws need love! Love is what keeps us together, it’s what helps us through the tough times and floats us through the good times. It should be what makes the world go around, although I think it could do with a little more right now.

Grayson’s friend has two daddy’s, who are amazing. I just wish that everyone saw it the way a three year old boy does. He just accepts that his friend has two daddy’s and he knows that some children have two mummy’s, some have a mummy & a daddy like he does, others have maybe just a mummy, or just a daddy. He does not question, he just accepts and this is truly beautiful. We need to be bringing our children up with love and acceptance and not with bitterness and prejudice. They are our future.

I pray that everyone has a joyous and safe Pride, and that the love flows.

 

Day Out, Family, Health, Parenting, Wildlife & Nature

Mummy wants a puppy!

So today Dan decided to take us to Wood Green Animal Rescue Centre in Godmanchester.  What a great place to visit. It’s 52 acres for a start, so huge, and is apparently one of the largest rehoming centres in Europe, which makes it pretty special in my eyes.

We strolled along the animal trail, reading all the facts and sign boards to Grayson. He adores animals and likes to know everything! He asks so many questions! The signboards around the trail were great as they had answers for him too.

We went to see the dogs, but unfortunately for us, fortunately for the dogs they have restricted viewing access to people who are serious about rehoming only.  So we were only able to view dogs that were either being walked, or who were outSide in the ‘play’ area behind their kennels.  I would love a puppy for Grayson, as a therapy dog.  I think it would be very calming for him.  D is not so keen, but I went on and on!  Let’s just say I am working on it 😂. I miss my dogs, I had two when I lived in South Africa and I really do miss them.  I never saw myself as a doggy kinda person until I had two.  I think we shall be back at Wood Green potentially in the near future to view some puppy’s, well fingers crossed anyway.

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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.

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.

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I switched the milk – will he notice?

Will Grayson (3) notice I switched his milk this morning?

Well he spotted the Koko on the counter and pointed out the palm trees, telling me it was a beach. I distracted him with Noddy, thank heavens for Auntie Jen on Milkshake, breakfast to. 

He sat and munched his breakfast without any milk related fuss.  Phew! Pretty sure he did not have a clue anything was different. 

Not to be hypocritical, I too have switched to Koko this morning and am trying it in my beloved morning tea. I’m going to be tough to convert on that, but I’m giving it a go

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Ouchy — sleepy tea to the rescue

One broken tooth, one major dental phobia and one presumed infection equals one very poorly and ouchy ear and a very sad and pained mummy. Feeling so sorry for myself tonight. 

Finally finally having my tooth fixed on Saturday, under sedation, amazingly covered on my Maternity Exemption. But until then I need some kind of relief. So braving a dental visit tomorrow to beg for some antibiotics. 

In the meantime as part of my intended healthy living plan I’m testing out Clippers Sleep Easy tea. So the packaging is lovely, all grey, calm and simple. 

I love the fact that Clipper products are made with pure ingredients with nothing artificial. This sits with my clean living plan (baby steps and all that!). This infusion includes cinnamon, chamomile, valerian, and other herbs. I honestly had no idea if it was going to be drinkable, but decided it was worth a shot! It’s actually delicious. What a lovely surprise. I am really enjoying it and will try another cup before I pop up to bed. Here’s to a long blissful sleep.