Living with Cerebral Palsy 🍋🍋

Saturday, 31 May 2014

Oh dear...

"We never get tummy bugs in our house" I said to my friend on Tuesday, three days before Elin has been struck down with a tummy bug. Serves me right! Having been very quiet for the latter part of the week, Elin has started retching a lot and has basically slept all day today :-( It's can be quite hard to tell when Elin has a bug if she has no temperature, as she is physically unable to be sick. When she was four months old, she underwent a 'phundoplication' operation to curb the amount of vomiting she had been doing since she was born (her brain was unable to send the correct signals to her stomach to tell it there was food coming, so when milk hit her tummy it would just start spasming, creating several projectile vomit situations every day, it was awful). The operation was a great success, and Elin started gaining weight and thriving. However, due to the nature of the op, which basically involved tying a knot in the top of the stomach to stop the vomit escaping, it left Elin unable to be sick at all. So what we have instead when she is poorly is this awful retching, which in turn exhausts Elin and causes her to sleep pretty constantly. It goes without saying that I really hate seeing her like this, she looks so sad. I wonder if the antibiotics she finished this week, which she was taking to clear a bit of a Mic-Key button infection, have somehow created a problem for her. Last time she had antibiotics, she ended up in hospital with gastroenteritis after an imbalance in the good/bad bacteria in her stomach and it took weeks for her to recover fully. Then again I know there are some bugs going round at the moment and so we're praying it's just a 24 hour thing! Keep your fingers crossed for our poor little snuffle chops that she starts to improve very soon :-(

Elin assuming the universal 'sick' position on the sofa :-(

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Wednesday, 28 May 2014

A breath of fresh air...

Well, the weather seems to think it's October, so having shelved an earlier plan we decided we had to at least get out of the house for a breath of fresh air and a cup of tea (rock and roll!)
Paul is back safe and sound from Greece, much to our relief. Elin was delighted to wake up on Tuesday morning and discover Daddy was there, right where she left him!  I wondered briefly as her little eyes lit up when she became aware of him if the past few days had just seemed like a very long and funny dream to her! Anyway big cuddles ensued and lots of smiles and happy sounds followed. Holly Cottage was complete again :-) So, once we decided to go out, I decided that it was time to do something I'd been putting off for ages.  It was time to get rid of the car seat. My lovely pink Maxi-Cosi baby seat, for my baby. Who is no longer a baby. We have had our WAV  (Wheelchair Accessible Vehicle) since Christmas and I've simply been putting off using it for the purpose it was intended. Im no psychiatrist but it doesn't take a genius to work out why I was avoiding it! The same reason I hated giving away the moses basket and putting Elin's pram at the back of the attic :-( My little, snuffly beautiful baby is gone forever (though she will, of course, always be my baby). Anyway, the strain on my back was finally too much to bear (not so much lifting Elin in and out, but lifting the buggy in and out!) so I had to concede it was time for her to travel in the car in her buggy. She has been travelling to and from school in this way for years in the minibus so I knew it would be ok, but was kind of nervous at the same time.
Elin didn't flinch. She looked mildly amused for the outgoing car journey and was so good whilst we were out that a quick stroll turned into quite a long walk along the aqueduct by my Nana's house, where I went countless times as a kid. Such a lovely afternoon. She wasn't too happy with the situation on the way back home, but she was tired by then and I knew we wouldn't be that lucky! I was however, happy with the position the new buggy kept her in whilst travelling, in comparison to the disaster we had with the old buggy when we trial ran the car all those months ago (she practically flipped herself out of it). So, another new little chapter in this journey via the correct use of the Drakemobile and a final acceptance from me that I have a big girl now not a 'baby Elin' anymore! It's all good though because I know this means there are just many more adventures to come...enjoy the rest of your week, folks, let's hope the sun returns soon!

Goodbye car seat, you're going in the shed. I can put you away, but I can't get rid of you. Not yet!


 Elin's first official ride in the Drakemobile in her buggy.

In the cafe, finding the sound of Daddy hitting a spoon on a teacup and then bopping her on the chin with it pretty funny!

Change of position and cuppa with Mummy!

A surprisingly long walk over the Aqueduct and along the canal, after Elin sits perfectly happily in her chair (again!). 

Twenty minutes after getting home, Elin conks out after all that fresh air, whilst Daddy reads the paper on his iPad. Hmm, we might have an early start tomorrow morning! 


xxxxxxx

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Death of a poet

Today, sadly, one of my favourite poets Maya Angelou died. She was hugely inspirational woman and a beautiful wordsmith. As I was busy googling her today reminding myself of her amazing works, which I have not revisited for some time, I found this:
Not the most clever or profound of her quotes perhaps, but it reminded me of Elin, so I wanted to share it with you . She is the rainbow in my cloud and always will be :-)

x🌈x

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Technical trouble..

I just typed out a nice long blog post for you lovely blog fans and my computer crashed and lost it. I am too cross to try again now haha! Grrrrr!!!! Technology is only wonderful when it works!!! Hope you are all having a good week, Elin has been amazing. When I retrieve my laptop from the field I just threw it into I will give you a proper update. Much love! x
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Tuesday, 27 May 2014

Mic-Key mystery explained..

Firstly: Ellie news- she's back at home with her parents and being hailed something of a miracle. But then, we knew that anyway! Thanks again for all the well wishes, we are so happy for her lovely family.

Well, I have just had a private message on here politely asking how we feed Elin, from a lovely Mummy who is right at the very start of the Cerebral Palsy journey with her little one. I have recently blogged about the nasal-gastric feeding tube Elin had when she was little and how much I hated it. Our lives were changed so much for the better (and especially Elin's) by a small operation to insert what is called a Mic-Key button into her stomach to allow direct feeding. (The brain damage Elin incurred at birth rendered her swallow reflex almost non-existent- very common with C.P)  Last week I changed Elin's button, a six-monthly occurrence so thought I would take some pics for the blog for those who may not fully understand how it works and would like to know. Squeamish folks may want to look away, though nobody is more squeamish than me and I can cope ok with it :-)


This is the Mic-Key button in place. It looks like a contact lens case and sits directly on the top of the skin. It's held in place by a small water-filled balloon under the skin. It has a little lid like a petrol cap on a car that you flip up to begin feeding.


A tube (called an extension set) clips into the open mic-key button, allowing you to attach a syringe to the end. You pour water or feed into the syringe and it literally flows down the tube strait into Elin's tummy through the clever valve-system button.

 Every so often (about six months or so) the whole Mic-Key button needs changing completely, to avoid infection etc. Most parents are taught how to do this.  I managed to get a picture of Elin's empty stoma sight (or blowhole as I like to call it) after taking the old mic-Key out and putting the new one in.

This is what the Mic-Key button looks like once it's out. The balloon you can see sits under the skin and is filled with water to keep it in place (the water has to be removed via the white valve on the right before you can take it out completely. You also have to change the water weekly to keep it fresh)


An absolutely awesome invention! Sooo simple and pretty easy to sort out, maintain and use. We have been lucky and have hardly ever had any infections or problems with the button. Without it, Elin would still have a horrid tube plastered to her face. Elin - and other kids with Mic-Keys- are not limited in any way by them, they can even go swimming with them. Once the Mic-Key is in, it stays in all the time unless you are changing it. The Mic-Key also allows Elin to be fed very slowly via a milk pump overnight, as her stomach is unable to deal with large amounts of liquid at a time (she used to constantly wretch, gag and throw up) . But now her overnight pump feeds her 50mls of milk per hour whilst she is asleep which doesn't irritate her tummy, so by morning time she's all done . I don't know who invented you, Mic-Key button, but that person is definitely held even higher in my esteem than the guy who invented hair straighteners.  And that is saying something, believe me :-)
I hope this has shed some light on the subject for anyone interested in the mechanics of feeding Elin, please keep the questions coming, I am always happy to answer!
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Saturday, 24 May 2014

Greece is the word...

Daddy Drake has absconded to Greece for six whole days! Leaving last Wednesday morning for a family wedding, I wondered how the change would affect Elin. He's never been away from either of us for this amount of time, so I know I was feeling a little apprehensive about it, but at least I would know where he was and what he was doing. For poor Elin, I guessed that at some point she would simply realise she was missing Daddy and that this would be confusing or upsetting for her.
Thankfully, she is neither confused nor upset yet and we are more than halfway through the enforced separation. (Sorry, Paul!) However, any doubt I had that Elin had noticed Daddy's absence was quashed during his phone calls, and in particular, one wonderful video-call.
When he rang us via video call from the beautiful Island where the wedding was being held today, Elin's face visibly lit up once again, just like it had done identically during every one of his calls since he left. But this time, whether she could see him on the screen or not I'm not certain, but what I am 100% certain of is that she knew it was Daddy, she has been missing him and she desperately tried to communicate with him. Firstly, on hearing his voice there were peals and peals of laughter. Then, as she started to listen intently, her gorgeous big brown eyes widening and her whole body stilling, she started to 'talk' back to him. Not something she does very often whilst sitting up, it's easier for her to get a resonant sound out whilst lying on her back or side. It was absolutely wonderful, and as the camera panned around the guests they all got to see one very happy little girl watching from home in very rainy Wales as the Groom made his speech on the beach, with the ocean as a backdrop on the beautiful Silver Island. How amazing technology is,  for a few minutes we felt like we were there. That moment will stay with me for a long time and I know Paul could not have wished for a better reaction whilst he is so far away and missing Elin like crazy!  She's learning, our girl. She's growing and understanding more and becoming so much more aware of her surroundings. A small thing, and a giant thing. A wonderful thing. I just wish there had been some way of filming it for all you lovely blog readers to see, maybe we'll try again tomorrow, but for now you'll just have to take my word for it.  In the meantime, congratulations to the beautiful Bride and Groom and their idyllic wedding... and hurry home Daddy Drake, it's been too long and we miss you!!!  Happy Bank Holiday folks xxx

The Island 'Silver Island', privately owned and traditionally used for Yoga retreats. Lucky wedding party!! :-)

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Friday, 23 May 2014

Throw back Friday...

Firstly: Ellie update: Ellie (see last week's post) has been transferred back to her local hospital in Chester from Alder Hey and is now only needing a whiff of oxygen. Absolute miracle child. The Doctors can't believe her recovery. Thank's for all the good wishes and thoughts. xx
Secondly: The reason for this week's throw-back is that it's a photo of the first holiday we took Elin on and holiday's have very much been on my mind recently as we have very exciting holiday news that I can't stop thinking about- yay :-)
Next year, at Easter, we are taking Elin to Disneyland, Paris!! I'm so excited!! I went to Disneyland in Florida when I was 15 years old. We had never been abroad before and I think our parents figured it was the last family holiday we would be going on (they were right) so it was worth taking the plunge.  My sister and I turned 16 while we were out there and I absolutely loved every second of it. I've always been a big kid at heart and a huge Disney fan. Years later, when I was at Drama school in Edinburgh I even got a holiday job at the Disney Store on Princess Street , selling tartan clad Mickey Mouse's to Americans in town for the Festival ;-) Luckily I got out just before hearing Disney songs on loop and having to stand by the entrance wearing a terrible uniform and Tigger ears and saying 'Have a nice day!' to every customer took it's toll and threatened to ruin my love of Disney forever. So, to be taking Elin to Disneyland all these years later is a dream come true and something which I didn't actually think would happen, with her travelling issues.
Luckily. some clever soul decided to replicate Disneyland in Paris. Much nearer to us! Then, another clever soul decided to create a train that gets you from London to said Disneyland in two hours flat!! THANK YOU!! Elin tolerates trains. She can sit on our knee's on trains and we can get up and walk around with her if she is upset. Hello Eurostar!! In a handy twist, passengers in wheelchairs must travel First Class on Eurostar as there is no provision in Standard class, but the family will only be charged standard class rates. Boom! I was excited going from Edinburgh to Wrexham on First Class in Virgin once (mainly because there was free water and mini-toblerones) so I'm guessing First Class Eurostar will be AWESOME.
We have booked through disabledholidaydirectory.com and they were really helpful. Our hotel is 10 minutes walk from the park, but there is a land train if we need a lift, or free adapted taxi shuttle services. We have an adapted suite with a wet room and lots of space (the booking form says two double beds, one single and bunk beds!! wow- anyone want to come with us???) Caitlin has been before so we will have a reliable tour guide and I just know Elin is going to love it- the fireworks, the light shows, the music, the colourful parades, the shows and all the noisy kids around. I can't wait for her to meet the Disney Princess's - they will be in extremely good company after all :-) So here's to Princess Elin and the holiday of a lifetime for her. "Disneyland-where dreams really do come true" :-) Have a lovely weekend all!


Elin's first holiday (Porth Madog) Wearing pink crocs and a pink wetsuit, ready for all the surfing with Daddy :-)

IMAGINE Elin's face when she see's this and much more besides. Can't wait.


xxxxx
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Wednesday, 21 May 2014

I'm in the mooood for dancing....

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Standard post-school shenanigans! Caitlin takes a break from showing Elin endless Beyonce/Miley Cyrus/One Direction clips to expose her to a bit of old-school disco. I think she's a fan .... ;-) xx
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Monday, 19 May 2014

The Sun has got his hat on!

Firstly, thanks to those blog readers sending best wishes to Ellie. I am pleased to report that she has rallied and though still ventilated, things are really looking up for her! Please keep wishing for her and her lovely family :-)

Elin had a lovely weekend. The weather, of course, was glorious and despite her somewhat grumpy week last week, Elin was in a great mood. We spent the majority of Saturday in the garden, under a makeshift tent made of scarves which amused Elin greatly! Her little buddy Megan came round for a splash in the paddling pool, and though Elin remained unimpressed with dangling her feet in the water, Megan took great delight in splashing us with several 'cannon ball' jumps, which Elin found pretty funny! She also loved the sound of the hosepipe filling the pool!
On Sunday Elin attended a party for a school friend, which was pretty moving since the birthday girl was turning 18, an age which her Dad explained, had sometimes seemed unlikely she might reach. Another amazing child, who has proved her strength time and time again, with the help, love and support of family, friends and not to mention a certain little wonderful school :-) A joy to help celebrate another miracle and another inspiration to us all. Happy Birthday, Tori, the sun shone for you today and may it continue to do so for many years to come  xxxx





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Friday, 16 May 2014

Throw- back Friday

I had something in my mind for today's post but then I got some sad news and there was really only one photo that came to mind appropriate for today.
One of Elin's little friends in extremely poorly in Alder Hey. Her name is Ellie. Her Mum and me nicknamed our girls 'The Cosmic Twins' because they are so similar. Ellie has C.P and Epilepsy like Elin. They even look a little alike (I thought Elin's hair was wild until we met Ellie!) though Ellie is a couple of years younger. We were put in touch by a mutual friend when Ellie was born in Chester and her parents were experiencing all those horrendous emotions and struggles we had experienced after Elin's birth, and have been in contact ever since. There is something inexplicable about talking to parents who have been through the same as you, as I have said before. It's an instant bond, because so few people you meet can truly understand.
Ellie is strong, beautiful and doted on by her family.
Here in Holly Cottage we are hoping for a miracle for  Ellie. She is already a miracle after all. If blog fans could say a little prayer or make a little wish for Ellie tonight, I would really appreciate it. Thank you.


The cosmic Twins.


The proud Mummy's


Ellie. 


xxxxxxx

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Sunday, 11 May 2014

Weekend

Elin's had a very busy weekend! She's had a fringe cut (she absolutely loves going to the hairdressers, the snip of the scissors never fails to make her laugh!) . Then she planned something VERY exciting with Mummy and Daddy for next year (but that's for another blog post I think!) Next Aunty Karen came over with her friends who were staying with her for the weekend and who kindly wanted to squeeze in some Elin cuddles. Then, we went to town to look for some Summer school shoes. We didn't find any. No surprises there. They have to fit over the strangest shaped splints ever. We looked at about a billion pairs and the shop assistant was lovely- she even remembered us from our Autumn visit (she calls Elin a little star)- but it was just too difficult and Elin was starting to get 'humbugged', so we left. We are hopefully having new splints soon anyway so I'm not too worried- but the issue of shoes does get to me like few others. The beautiful red patent leather dolly shoes, the funky trainers, the pretty sandals, the cute flip flops and jelly shoes. All of which my baby just can't wear :-( Of all things I don't know why I find shoes so hard. Just because I suppose- it just brings things home a bit. Anyway, Elin was very good all things considered and pretty good in her chair given it was late on in the day. She also found a renewed love of her standing frame this weekend which was lovely, as she hasn't been too impressed with it for the past few weekends :-(  This meant that  Elin was able to enjoy 'helping' Caitlin do some GCSE revision with Daddy on Saturday morning and on Sunday she had stories from Nanny in the morning then helped Daddy make a chocolate cheesecake in the afternoon- and even had a cheeky taste!! Hope you blog fans had a good weekend too. Monday will soon be over! xxx


Pretty pleased with new fringe. I look awesome (and I can see again).

Saturday morning GCSE revision club! Think I have nailed Hitler's Germany to be honest!!


Me helping Daddy! " You take a great big spoon, You take a great big bowl, You put the sugar in and you stir it all around...."


"Oh! Sticky sticky sticky!!"
Yes, it's 3:00pm on Sunday and I'm in my onesie with chocolate cheesecake around my mouth- don't judge me!!

xx

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E.D Phone home...

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A new favourite of Elin's ..the phone!! Oh, how it amuses her! This is a short video of her having a chat to Aunty Karen :-)

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Friday, 9 May 2014

Throw back Friday...

This week's throw-back is one of the first photo's we ever took of Elin when she got back from her month-long hospital stay after being born.  As blog readers will know she was unable to swallow and fed through a tube in her nose, which went into her stomach and which I had to learn to pass. I hated doing it. More than that, I hated the permenant tube dangling from the side of her beautiful face, a large plaster across her cheek keeping it in place :-( However, occasionally she used to pull the tube out. If a feed wasn't imminent (they almost always were, she had to feed every two hours as her stomach would reject big feeds) then we would take the opportunity to take copious photograph's, before I had to pass a new tube. So this is one of those. It is framed on the wall upstairs. I always loved it, because she looks happy and so many of those hours in the first few weeks/months were unhappy for her. She cried almost continually, in pain from acid reflux. It agonised us day after day to see her like that. So I treasured this photo, because my baby looked happy, and it's all we wanted- for her to be happy. Fast-forward almost six years and we definitely got our wish. Friends of Elin will know that despite all of her issues the one thing you can say for certain is that she is most definitely and absolutely, happy :-)

To prove a point, a very happy Elin returning from school today having been awarded a special sticker for having a great week. Happy Friday all!


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Wednesday, 7 May 2014

Leaving on a Jet Plane

Well the sun is starting to emerge and we can cast a clout 'cos May will soon be out. I might break out my Birkenstocks and sunglasses asap- yeeee ha! Now that another Winter of discontent is gladly behind us it's got me thinking about the Summer holidays and a realisation has really started to hit home. Wow. I'm doing something reckless, guilt-inducing, terrifying, exciting, incredible, wonderful and unthinkable.

I'm going on holiday.

Abroad.

Without Elin.

I can't tell you how much I agonised over this, but if you know me at all you will already know that. However, I didn't need to agonise for long because I am a lucky, lucky girl.  I have friends who are amazing and wonderful and supportive.  I have a husband who is the same.  So when one of my oldest friends insisted she was taking me abroad for three nights to Palma (she gave me no choice, she knew the answer would have been 'I can't') so I could 'just lie by a pool and read a book', it seemed like the deal was already done. Paul said I should absolutely go-as I knew he would (he is the most selfless person in the world) So did my sister and my Mum, who both promised to help Paul with childcare while I was gone. So did just about anyone I spoke to. So I thought about my sad neglected bikini lying in my drawer, who hasn't had a decent airing in over seven years and I thought, who am I to deny my bikini another glimpse of the continental sun and daily dousing of highly chlorinated water? Maybe the bikini has missed feeling a splash of cocktail or sangria as it stretches out by the pool. It didn't ask to be bought after all, leaving its shop floor counterparts to look forward to endless summer fun whilst it withered and died in a dark drawer in my bedroom. Poor sad bikini. In short, if everybody thinks I should go and the bikini is ready and willing to be revived, who am I to argue??
Pro's
Relaxation.
Sun.
Sunbathing.
Quality time with bezzie pal.
Excuse to shop for 'holiday clothes'.
Excitement.
Fun.
Sleep.
Possibility of faint tan on current corned beef- like limbs.
And....
It's only three nights.
Con's
Feeling like I abandoned Elin and Paul.
Missing/worrying about Elin and Paul.
Need to get body bikini-ready (Gah! as Bridget Jones would say)
And...
It's three whole nights.

Now, though the cons are pretty significant, in my book if a list involves more pro's than con's, it's worth doing. With strict instructions from my travelling companion to take hand-luggage only (I am already having palpitations about this, my hair care alone normally takes up a case by itself. Not because I want to or even like doing my hair but because in the absence of serum, hairdryers, industrial brushes and straighteners I look like an electrocuted Diana Ross) and the reassurance that 6am is not too early to start drinking wine on the plane..I'M GOING.  Just don't tell Elin yet, don't ask me how I feel the night before I fly...and pray thanks to the gods of technology for Skype and FaceTime :-)

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Saturday, 3 May 2014

Goodnight Irene...

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Elin enjoyed a little live music this morning! She always responds so well to music, she might be the only person in the world who enjoys Paul's Ukelele playing! (Yes, he plays the Uke and when I say he plays the Uke, I mean he has a grand repertoire of three  songs which he's been playing on repeat for the past million years ) Her face literally lights up as you can see here, such a pleasure to see I thought I'd share it with all you lovely blog fans :-) Elin seems a lot brighter today but she has a little cough and what looks like the start of impetigo on her cheek, must be due to weakened immune system at the moment. But she's happy to amuse herself today which is progress from last week and when Caitlin dropped by this morning to say hi on her way to town, Elin couldn't believe her luck! She was so happy to see her big sis I just had to get a photo (of course). We are having a very special visitor this weekend, my good friend from University in Edinburgh is making her annual pilgrimage to Wales for red wine, coal fires and Elin snuggles. Can't wait. Happy Bank Holiday folks, have a good one!

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Friday, 2 May 2014

Throw back Friday...

I came across this in a file on my old computer when I was cleaning it up the other day. It made my heart ache a little, and made me smile too. Taken in 2010 it shows Elin with her little buddy, Harvey. Harvey was the first child I ever met with Cerebral Palsy, or severe disability of any kind actually. Elin wasn't even one year old when the hospital first put me in touch with his Mum. They lived close by and we thought it was a good idea to speak to someone who had first hand experience of what we were going through (Harvey was just a year older than Elin). I remember I fell in love with Harvey and his lopsided smile and big eyes instantly and how suddenly everything didn't seem so scary. He was the youngest of four children, his house was busy, noisy and full of life. Nobody apologised for him, or felt sorry for him, he was simply the nucleus of the home and the love there and his happiness was tangible. I became a friend to his Mum and of course Elin enjoyed spending time with a handsome young fella! It was amazing to talk to someone who had been through it all already, could advise and understand.  I will never forget what meeting Harvey, and spending time with him and his family, did for us in those first couple of years. We were also delighted to discover that when Elin started school, she would be travelling on Harvey's bus. It felt right, their friendship was cemented and they would go through their very special school together.  However, at the start of 2011 and right before Elin joined school permanently after her induction, Harvey unexpectedly passed away at home in his sleep. I still remember the grey January Monday afternoon that I got the phone call, refusing to believe it was true but knowing it had to be. The instantaneous grief took my breath away, and my legs from under me. Since that day beautiful Harvey has remained very much in our thoughts, never far away. Once you had met him, it would be impossible to forget him. He radiated joy. We never will forget you Harvey and what you meant to our family and how you played a part in our acceptance of what our life was to become. Beautiful, gorgeous boy, forever three years old, forever an inspiration to us all.
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