Sam is 7!

Sam is seven! We celebrated with, amongst other things, an egg-free chocolate cake that I whizzed up in our blender and gave to Sam through his feeding tube.

With every passing year I sound a bit more like my mum: “I can’t believe you’re seven years old! I remember when you were just a baby!” But it’s true – I am genuinely surprised that we have been parents for seven years and that Sam is so big and tall.

As with all recent birthdays, James made a Sam-themed video of the past year and we watched it with our family, projected on to the wall. I would recommend this as a way not so much of celebrating the child’s birthday, though Sam and Eli enjoy seeing themselves, but more as a way of congratulating oneself on another year of parenting. It is heartening to see how much children have changed and grown over the year, how much you have done with them, and ultimately how justified you are in feeling so tired (excerpt from birthday video below).

The other thing that we realise when we (James) make these videos is that there is always way too much material. We have done too much fun stuff and taken too many photos and videos to fit into one short film. It makes obvious that Sam is living a full life, with variety and fun, surrounded by loving family.

Just after Sam’s birthday he had an appointment at our local rehabilitation centre where wheelchair services, assistive technology and other helpful services are based. There are always all sorts of disabled people coming in and out for appointments. I was sitting in reception with Sam and Stella, waiting to be called. Stella was a bit grumpy because she hadn’t yet had her morning bottle of milk, Sam was happy watching a screen showing footage from four security cameras. A lady in a wheelchair was pushed close to us (and I have written that in the passive deliberately, because the person pushing didn’t ask her where she wanted to wait). She was an older lady, I would guess in her seventies, immaculately dressed and made up. She smiled at us and after a few moments said (as is common):

“You’ve got your hands full!”

I smiled and we had a brief chat about how old the kids were, how cute Stella was, how much she liked milk. Then the lady asked, as she looked at Sam:

“Is he able to go to school?”

“Of course,” I said. “He goes to a brilliant school which he loves, don’t you Sam. We’re just here for an appointment.”

I could see the pity-look appearing so I was even more positive than normal about both Sam and his school. But as she was leaving she said:

“It’s so hard for these handicapped children. So hard for their families. I feel so sorry for them.”

It was one of those times when I felt like I didn’t have the words to be able to explain to her what our world is like, what Sam’s life is like, how we (try to) treat him. I have no idea how or why she uses a wheelchair, or how old she was when she first used it, but clearly she has lived a different experience.

It’s impossible in passing conversations like this to say all I want to, but later I felt so sad that she assumed Sam didn’t go to school, that his life is somehow unbearably hard, that it’s okay to talk about him like that right in front of him. Clearly being disabled in some way doesn’t automatically educate you in how to treat disabled kids in 2016 (or 2017).

I don’t want to minimise Sam’s challenges – loads of things are tough for him, almost nothing comes easily, and much is really unfair. And as a family we sometimes struggle when Sam’s disability makes things more complicated for all of us. But right now, as a seven year old boy, Sam is having a good life most of the time (and really, which child is having a good life all of the time? I mean every kid has to tidy up or eat Brussels sprouts or go home some of the time). He has loads of fun. He laughs most days. He is loved. He is learning. He is thriving.

By way of illustration, between his sixth and seventh birthdays Sam:

  • Had a baby sister: tolerated Stella’s wailing, put up with a third of our attention rather than half, learnt to deal with her grabbing onto his legs and pulling his hair. And then got a new baby cousin, Ralph, who also sometimes likes a bit of a wail.
  • Learnt to cycle his trike on his own: whizzed round in circles, racing Eli and being unbelievably pleased with himself. He is still working on learning how to steer.

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  • Made really noticeable progress with communication: starting to eyepoint using his communication book to tell us things, more reliably telling us yes and no.
  • Made huge progress on using his eyegaze computer: using it almost every day, knowing exactly what he wants to do, reliably choosing stories and then navigating through them like a pro, using communication software to create messages that were totally appropriate to the moment.
  • Went on holiday to Cornwall and France: first flight for three years, loads of swimming and beach time, hanging out with family and friends, getting tanned (and on one unfortunate occasion burned), getting a new passport.

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  • So many jokes with Eli. So many lovely moments between these two boys.

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  • Started staying at a children’s hospice for the occasional night, didn’t seem to be traumatised.
  • Moved house, again. Visited the building site to review progress and try out his new lift. Before he is eight he should have managed yet another move, his sixth since he was born.

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  • Began to be hoisted (rather than manually lifted) for most transfers between chairs and beds: coped much better with this than his mum.
  • Listened to lots and lots of audiobooks: his bluetooth speaker and ipod have become essentials wherever Sam goes, and there’s therefore been less screen time, developed a love for the books of David Walliams (except the highly emotional ending of Gangsta Granny) and late in the year Harry Potter.
  • Finished his first year at a new school: totally smashed it, participated in a whole school play in his walker, another year of loving learning, fascinated by the Great Fire of London.

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  • Was increasingly contented: Sam has spent the last year less fractious and generally happier. We spend less time flicking though films to find the one he is happy to watch, less energy trying to entertain him in public places so we can finish our lunch. This is probably connected to us having more (paid) help, and Sam getting older and more mature, helped – we think – by his surgery in 2015. As long as we explain what’s what is going on or is about to happen, Sam is noticeably more able to deal with unfamiliar or demanding environments. Long may it continue.

As we celebrate another year of Sam being our son, I am so very proud of this boy (and still so very sad that seven years ago he was still in hospital). He is such a joy to us all, so filled with patience and humour and determination. Happy New Year everyone – let’s all hope we come across more Sams, less pity and more positivity in 2017.

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Making our own fun

It is the Easter holidays and like thousands of parents around the country, we are in the midst of filling the time with fun, Last week I thought we would try a cycling session at a velodrome.

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Wheels for Wellbeing run sessions at the Herne Hill Velodrome where they have a variety of adapted bikes and trikes for people to try, though we actually took our own wheels. The velodrome has a professional track with junior cyclists zooming round at high speed, and a flatter track in the centre where children and adults, with various disabilities or none, were cycling around on adapted bikes or trikes – some hand-powered, some with platforms for wheelchairs, some with two seats.

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There were very friendly, helpful people around. One of whom suggested we try some mittens to help Sam keep his hands on the handlebars. He went and found and gently fitted Sam’s hands into them, and they worked so well that I have since bought some. Then we bumped into a boy from Sam’s school, and Eli, Sam and he did some races round the track. We were there for an hour and it was fun.

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I don’t want to paint too romantic a picture of this outing: because it is actually impossible to co-ordinate the feeding and sleeping routines of three children, Stella was hungry as soon as we arrived so I unpacked Sam’s trike to the sound of her bawling in the car. As the helpful man was fitting Sam’s hands into the mittens, I was breastfeeding Stella under my jumper while walking around and making sure Eli wasn’t crashing into anyone. Elegant it was not.

It was raining for a lot of our visit, luckily not too heavily (not least because I’d accidentally left the car sunroof open) but I refused to let it put us off. If I have managed to get all of us to a velodrome with everything we require and no major meltdowns, we are NOT going home just because we’re getting a bit wet! Even if I have negligently put Eli in a sleeveless coat.

When I mentioned the idea for this trip to James that morning as he headed off for work he said it was a brilliant idea but noted that it was also so ambitious that I might be nuts to attempt it. He’s right, it’s easier to stay at home where everything is familiar, but more fun to go out. Especially to new places, with welcoming people. And lovely for Sam to see a friend from school. A velodrome! Awesome!

I would love for Sam to do more things like this, where he could meet other local kids and make friends. Maybe even without us. But that appears to be near impossible.

A social worker phoned me in September last year and asked if she could come and visit us. I didn’t know what had brought us to to her attention, but she soon came round one day after school. Since she didn’t seem to need to interact with Sam, he stayed upstairs with a carer and I sat with the social worker in our kitchen for an hour while she asked questions and I answered them.

I had never met her before so I described our day-to-day lives. She agreed that Sam needs were complex. She said she could see our lives were difficult, with the tilted head and sympathetic voice that is so irritating. She asked how we were coping, but offered no practical help because I said we were doing okay.

When she asked what help we needed I said I would like some holiday activities, or weekend clubs, or any kind of extra-curricular activity for Sam that was with other kids and not initiated by us. We can find fun things for Sam to do and fill his days, but we can’t create a peer group for him to do it with, and this is what we need help with.

I said that, as far as I know, there are no holidays clubs in our borough for children like Sam and she agreed. I found one last summer in another borough and she said I should keep looking for things like this, and that when I found them I should contact her team in plenty of time and they would see if they could fund Sam’s place. Which was nice of her, because I definitely have lots of time to be tracking down holiday playschemes, liaising with local authority bureaucracies and checking they understand Sam’s condition.

I had heard of an adventure playground in a neighbouring borough that runs weekend activity sessions for kids like Sam, and asked the social worker if he could be referred to this. She agreed that it might be suitable, but warned me that there was a very long waiting list. That is not surprising, because multiple boroughs like ours don’t provide anything like this. Fine, I said. As far as I was concerned, this was obviously the start of the referral process. She had asked what I wanted, so I had told her. She was taking this forward. Right?

Six months later I hadn’t heard anything. Wow, this is taking a while, I thought. But when I called to check, the social worker denied any recollection of this discussion. She said I hadn’t asked for any referral and so she had not done it. She was more interested in telling me that I was wrong than in actually starting the referral. It turns out we need to be assessed, and the assessment needs to go to a panel, and if they approve funding Sam, only then can Sam be put on the very long waiting list for the playground.

I have since had conversations with other members of the team, and am still waiting for an assessment. So we haven’t even got to step one. Meanwhile, each of these conversations has made me feel really uncomfortable – the only way to get anyone to even think about starting this referral is to ask, repeatedly, for help, something I find hard to do. It seems like I am really putting social services out by asking for assistance and I appear not to have the language to make myself understood or to have a conversation without getting upset. I know we are not in dire need, and plenty of people are worse off, but why is it so difficult to access support which other boroughs (and most reasonable people) recognise is important?

I am asked exactly what I want, which I’m not certain of because I don’t know all or any of the options. The whole thing has to be framed in terms of us ‘needing respite’, because presumably trying to help a six year old boy make friends isn’t sufficiently urgent. We probably do need some respite, but even saying that makes me feel like I’m letting Sam down.

So we will carry on organising our own fun, and lots of fun there is to be had. We’ll go cycling again and try to find other welcoming activity groups. Luckily Sam has an enthusiastic brother, carers with energy and initiative, and an easygoing personality, but it would be really lovely, and a huge relief, if our borough showed some interest in helping disabled kids be children rather than ignoring them.

Sam can cycle!

Milestones are a tricky thing for parents and children like us and Sam. Many of the obvious ones from early childhood never materialised and perhaps some never will. If they do, they will be the result of years of hard work on Sam’s part, considerable therapy input and a lot of patience. This is why we start to talk about ‘inchstones’ (as I have done here) which are no less valuable than the typical milestones. Inchstones recognise the scale of greys that we operate in; Sam can’t sit on his own but has worked up from always being held to being able to sit unsupported for two minutes. In our world, this is brilliant progress.

So there we are, pottering along, Sam working really hard on every aspect of his life, accumulating the inchstones. James and I are a bit distracted by the birth of Stella. It’s mid-winter (albeit one of the mildest winters on record) so Sam hasn’t been going out on his trike that much but we have been trying on the weekends when it isn’t raining…

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And then…

He is off! Riding his trike on his own! An unequivocal milestone! Starting with the odd couple of independent cycles with his legs, building up within minutes to confidently pedalling his legs round and round, spinning in circles. I wasn’t there to start with but James sent me jubilant videos by phone and by the time Stella and I got there Sam was happily cycling around the basketball court. We were all so happy it’s tricky to find a video that doesn’t have someone shrieking in it (I’ve muted the sound to save our blushes) but no-one was more excited than Sam himself.

It’s fantastic.

Because cycling is fun.

Because cycling is what six year olds do.

Because it’s Sam being able to move from one place to another entirely under his own steam which he hardly ever does (he can walk in his walker a bit but it takes a lot of effort and is therefore a bit inconsistent).

Because learning to ride a bike is a bona fide milestone (granted Sam can’t yet steer himself but let’s not quibble over technicalities).

Because Eli also learnt to ride his bike in the same week and it’s lovely for brothers to do things together.

Because, above all else, Sam was proud of himself and that is a beautiful thing.

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Just in case it’s a while before another milestone comes along, I’m going to dissect a little how this one came about:

Patience and persistence

We have now had the trike for 15 months. We don’t use it every day but most weeks we have pushed Sam in the trike with his legs getting used to going round. I wrote a blog in April last year about Sam starting to cycle himself but it’s not until now that it’s happened reliably. These things take as long as they take. We must be patient and give Sam the chance to learn and develop the skills – it’s no use expecting things to happen quickly and, equally, just because he hasn’t done something (be it cycling, or learning letters, or using an eyegaze computer) within the arbitrary timescale imposed by some adults, doesn’t mean it won’t happen eventually.

Opportunity

As I wrote about here, we bought the trike privately as there is no statutory funding for such equipment and it was really expensive. Sam therefore had the opportunity to learn how to cycle, little and often, over time with no pressure. Kids like Sam have to be given access to equipment and activities even though things like trikes cost over ten times more than a normal child bike.

Enthusiasm

James and I are pretty good at taking Sam out in the trike but probably the thing that tipped the balance in favour of success was his new nanny/carer. She was with James and Sam the day that he nailed it and was coming to it with a level of enthusiasm which we had probably lost over the last 15 months. Sam really likes her and she was encouraging him to pedal on his own having given him a little push, and off he went. Maybe if James and I had been doing the same old pushing we wouldn’t have realised he was ready to do it on his own. It’s perhaps an obvious point but enthusiastic, skilled carers contribute hugely to Sam’s life.

Self-confidence

Because Sam is so dependent on others to help him with every aspect of his life, it is rare that he can do things on his own or that he can take full credit for them. I love that he was so pleased with himself for cycling, and that all of his patience and determination over the last year has been rewarded. When he went to school after the weekend we recorded a message about it on his communication button and sent video links to his teacher so his whole class watched him cycling. His teacher said he was thrilled when they discussed it and the idea of him sharing his huge achievement with his friends with a big smile on his face makes me feel all warm and fuzzy. The boy deserves a bit of self-esteem.

Siblings

Eli learnt to really cycle his pedal bike the day before Sam’s achievement – he had been getting close for a while but required a hand on the back of his neck at all times which limited progress somewhat. It may be coincidence that the boys did it together, but probably not. They really keep an eye on each other and the interaction between them is great for them both – Eli wants to do what Sam does and learn what he learns, Sam is encouraged to try games and activities that he wouldn’t tolerate at all if Eli wasn’t around. This is the latest in a long list of examples of why having siblings is brilliant for them both.

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Brain surgery

It’s possible that some of this physical progress is down to the stimulators in Sam’s brain. The jury’s out at the moment – let’s wait and see how the rest of the year goes.

So hooray for big orange trikes and small persistent boys.

Sam is 6!

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Sam is 6! Like every year, the actual day is full of mixed emotions. While we are joyful that we are celebrating six years since Sam joined us, on the day I am also mindful that this time six years ago Sam was being resuscitated then being transferred on his own in an ambulance to a different hospital, and that our lives changed forever.

But it gets easier every year, as the memories are less immediate, there is more to celebrate and Sam is more engaged in birthdays.

As is now our annual tradition, James made a video to summarise Sam’s year. I won’t post it, partly for reasons of privacy but also because of self-indulgence; while most parents will happily watch a ten minute video of their own child, no-one I know really wants to watch a long video of someone else’s child, even if that child is the subject of a semi regular blog they read. It’s surely the modern equivalent of being made to sit through someone else’s holiday photos.

So, here’s the executive summary. It is unashamedly positive. Let’s ignore the tiresome stuff for now.

In Sam’s sixth year he:

  • Enjoyed ice-skating and went round the rink quite a lot faster than grandpa;

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  • Had a massive and briefly scary allergic reaction to nuts and had to go to hospital in an ambulance;

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  • Went down a zipwire, swung from a sports hall ceiling and went kayaking at the Calvert Trust;
  • Did a lot of triking;

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  • Was a lovely older brother to Eli, letting him wear his lycra suit and clamber all over him;

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  • Moved house (again – his fourth since he was born);
  • Got a new wheelchair-accessible car (which is great but unfortunately turns out to be one of the cheating VW emission scandal cars…);
  • Got his own eyegaze computer to use at home and used it to tell us knock knock jokes;
  • Went to the House of Commons and met an MP;

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  • Lost four baby teeth, swallowing at least one;

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  • Did a lot of trampolining;
  • Went to a summer playscheme for the first time and made a biscuit the size of his head;
  • Went on holiday to the Cotswolds and Cornwall. Next year places beginning with D. Suggestions welcome;

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  • And last but not least, left one wonderful school and started at another, settling in quickly.

Sam had a lovely birthday. Over the years we have learnt what works and what doesn’t. We are less concerned these days about what a typical six year old birthday party would be like and just do what we think he will enjoy – small family celebrations, lots of presents and balloons, ice-cream cake which he can at least taste if not eat.

If I do say so myself, we have done particularly well with Sam’s presents this year. It’s tricky to think of things he will really like beyond yet more books, but he is really enjoying a puppet theatre where we put on shows for him with hand puppets, a lightbox that we can spell words on, and a teddy bear that will play Daddy’s voice (from Kuwait this week) or anyone else who records their voice via an app. So satisfying when all of the thought I have put into presents he will like pays off.

The coming year will involve more change for Sam, not least with a new sister and another house move. His somewhat relentless life will continue with the usual levels of complexity and endless appointments, but he has continued to prove that he can take it. It feels like he (and we) are more resilient and happier than ever. We will inevitably have some blips. I am certain the arrival of a third child will throw us all off course, he’ll get the usual winter bugs and we will face unexpected challenges. But, but… if I had been able to see how well we are all doing six years on from the awful day of his birth, maybe I wouldn’t have been quite so sad.

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Cycling

In our quest for fun weekend and holiday activities, Sam’s tricycle has been a godsend. We are constantly aiming for variety in Sam’s life; things to do that aren’t us reading him books or watching an ipad, activities that get him out of his wheelchair.

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The trike offers all of the above, whilst also allowing a rare opportunity for Sam and Eli to do the same thing at the same time and pace. Both boys have got orange bikes/trikes, and we have just hit the moment when Eli has worked out how to ride his balance bike for longer than 2 minutes without demanding we carry it. Meanwhile, Sam has hit his stride on the trike.

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This means we can spend fun mornings in the park. Sam is happier, and more active, than he would be if we were pushing him in his wheelchair (and strangely less scared of dogs). The boys like racing each other, and I feel like we’re a normal family. Our boys are learning to ride their bikes together, on sunny days, in parks full of daffodils. We’re living the dream!

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We’re not the only ones who like the trike – people smile at us as we pass, much more than they would if Sam was in his wheelchair. I think a big orange tricycle gives people a way in – even legendarily unfriendly Londoners find themselves saying hello. One woman asked if she could take a photo.

We bought Sam’s trike last year. We got advice from various physios and had trials with two companies. There is no statutory (e.g. NHS) funding for equipment like this, and they are really expensive, so we took our time deciding what kind would work best.

The trike we decided on, made by a company called Theraplay, can be parent-operated from behind, so Sam can ride the trike normally with us pushing and steering. This allows it to be as normal a riding experience as possible, but with us doing most of the work. Sam chose to have an orange one.

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Whenever we consider buying big pieces of kit like this there’s a tension between enthusiasm and caution. Enthusiasm for the possibility of this being The Thing That Sam Loves, that he can use easily and effectively, that he is able to operate independently and generally makes all our lives brilliant and fun. Caution because we’re about to spend £1400 on something that Sam might not like, might not be able to use, and then we’ll have to work out how and where to store a huge white elephant and manage our disappointment.

This time the gamble has paid off. We have been slowly increasing the distance and speed that we push Sam. He now likes us going really fast. So far, we have been doing all the work – Sam’s feet are forced round as we push the trike forward, but we might be on the cusp of him being able to do some of it himself.

He finds holding on to the handle pretty tricky, but he can sometimes push the foot pedals round on his own now. We still hold the handle in order to steer for him but for a couple of metres we aren’t pushing at all – all of the forward momentum is Sam on his own.

This is the moment that I really hoped might happen, but was worried might not actually materialise. To pedal the trike, Sam needs to control his legs separately and time it right. It is difficult for him but, like so much that he does, he is trying really, really hard. Well done that boy! Well done that trike!

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Five years old

Sam has just turned five.

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A birthday means the anniversary of his birth, which is a day we would all prefer to not remember. Apart from the joy of ending up with Sam, few good things happened that day.

But loads of good things have happened since! Each year we make a list of what Sam has got up to over the previous 12 months; achievements noted, developments made and skills gained. Parents of disabled children often talk about ‘inchstones’ rather than milestones. Early on, it became clear that the gross motor skill developments that characterise a typical child’s life were going to be hard for Sam so we had to adjust our expectations and targets accordingly, but success rewards the patient and if you look in the right places there are wonderful things to be found.

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In the year between his fourth and fifth birthdays Sam has done a lot, including:

  • left nursery, started school full-time (settling in brilliantly)
  • learnt to enjoy the affections of his brother and realised Eli can be funny
  • used an eye-gaze computer regularly, playing lots of games
  • learnt to look at Yes and No symbols regularly
  • stopped having any formula milk, eating only home-made food
  • adapted brilliantly to having a night carer
  • discovered his love of the hot tub
  • started getting the bus to school
  • learnt loads of letters
  • reliably recognised the numbers 1-10
  • starting riding his trike
  • met Michael Rosen!

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Sam has really thrived over the last year – he has been healthier than ever and had a lot of fun. We were looking forward to celebrating him turning five with a tea party and a family video of the past year’s best bits…

… and then he really pulled it out the bag!

We have known for a while that Sam recognises most letters and Granny has been diligently teaching him to read. His school has also been working on phonics with him and recently he has been using the eyegaze computer in his classroom to do some work with letters. The day before his fifth birthday, Sam came home with this message from his teacher:

‘Sam used his eye gaze [computer] to independently word build. I asked him to spell out bat and several other ‘-at’ words at the end and he did so no problem!’

If that isn’t a bloody milestone, I don’t know what is. Love that clever boy.

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