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Wednesday, 29 June 2016

Great British Tennis weekend - join in! #GBTW

I'll have to admit that I've been known to go shopping rather than watch tennis. That was in Madrid, a couple of years ago. Whilst I may not sit glued to the television when Wimbledon is on however, I do love hearing updates and rooting for the British stars and underdogs. There's something about these two weeks that always reminds me that summer is here - strawberries and cream, Pimms.... and rain.

Tennis is a sport which I played on free courts with my brothers when I was younger. More of a gentle knock-about than a full-on competition always suited me fine; I'm definitely not gifted in the sporting department. I blame it on my small lungs. Seriously, that's a thing, I've been tested for it.

Anyhow, despite all of this, I was actually quite interested in the news that tennis sessions and fitness-oriented activities are being offered for FREE in many clubs and leisure centres on Saturday 16th and Sunday 17th of July this year as part of the Great British Tennis Weekend. Here's me, having a quick go on a court during the BritMums Live conference last weekend:

Wedges are not necessarily advisable for playing tennis...
Even though I know I'm no Annabel Croft (showing my age now), I've booked the whole family in for our free session at our local centre to see what's on offer that weekend. In various locations there will be Family Time, Free Play, Cardio sessions and Highland Spring Mini sessions on offer. Apparently there will be coaches on hand to help us at our family session, which is probably just as well. It could be an interesting morning...

You can find out where your nearest events are on the Great British Tennis Weekend website. What's not to like?! Go on, give it a go, and let me know what you thought of it!



I'm working with the Lawn Tennis Association on their #GBTW campaign. Sign up for your FREE tennis activity here

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Monday, 27 June 2016

BritMums Live 2016 round-up

So this weekend I attended BritMums Live, a conference for around 500 bloggers (mums and dads, and even non-parents, as it happens) which takes place annually in London (here's my review of last year's event!). It involved a full agenda of sessions to help us all improve our blogging, everything from writing workshops, creative inspiration and travel blogging through to understanding SEO, Google Analytics and innovative ways to make money. I honestly wish I could have gone to all of them - even after six years of blogging, there's always more to learn.

A large group of some of the editors who write monthly round-ups for BritMums on varying topics - mine is SEND (thanks to Kirsty from Hijacked by Twins for the pic!)
What made this weekend's event special for me though, was the people (oh OK, the cake and drink helped too). After six years, I know quite a few names and faces, but only get to see them in person once a year. I can honestly say though, that the vast majority are the some of the friendliest, loveliest people I've ever met, and it's so fab to be able to catch up with them all at events like this. Although it was busy in terms of the schedule this year, I didn't find it crowded; I love the venue the event is held in every year (The Brewery in London) and enjoy being able to move around and have lots of hugs (yes, I'm a hugger, sorry folks who aren't!).

BritMums is all about the people! Just sorry I didn't get photos of everyone, but here's a few of the lovely ladies I got to see...
With so many old faces to greet, my only slight regret is that I didn't get chance to talk to many 'new' faces. I'd had great intentions of finding people who were looking alone and seeing if they fancied chatting, but I got side-tracked. I totally hope nobody felt alone though and that they couldn't come and talk to me/us - remember we were all 'newbies' at one time or another. Next time I'll make more of an effort.

There are far too many people to name check and include links of here, so I've decided to be diplomatic and not include a list. Thanks though, to everyone who talked to me on the Saturday - and especially to those I spent lots of time with on the Friday evening - I definitely enjoyed the 'Fringe' event held at the Holiday Inn Camden and hope that'll be a regular feature now. A special thanks to my lovely roomie Clare who writes at Sons, Sand and Sauvignon - so kind of you to let me drop in at the last minute!
Me and Clare from Sons, Sand and Sauvignon enjoying the Friday night 'bash'
BritMums run the 'Brilliance in Blogging' Awards alongside the conference, and I'm still quite shocked that so many of my lovely readers voted for my little blog to help make it reach the Top 5 in the Inspire Category. Wow, just wow. It was amazing to see our name up there on a big notice board! Thank you all so much. I didn't win, but I never expected to as all the others in the group have amazing blogs - the winner was lovely Michelle, who writes at The Joy Chaser (and that's two links now, I am definitely stopping there!).

Brilliance in Blogging Awards Finalists 2016
So much went on at BritMums Live that I can't possibly blog it all (no, not like THAT, I just mean it was a very busy weekend!) so instead I decided to upload a photo slideshow so you can see just some of the lovely blogging friends I met again and shared hugs with. So much more to say, but I'll stop with a huge thanks to Jen and Susanna and all the organisers for giving us this opportunity to learn and socialise. Let's do it all again next year!


Oooh and here's the video which the fab Colette from We're Going On an Adventure put together, which gives you an even better idea of what went on this weekend!



Linking up with:

Life with Baby Kicks
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Saturday, 25 June 2016

Finalist in Inspire category

Thanks to a little hospital trip (update part 3 still outstanding, coming soon...), I don't think I really had chance to say Thank You.

Thank You to everyone who supported me over the 10 days I was in hospital to our youngest girl; social media kept me going and all of your messages helped get me through each day. Sometimes, just knowing someone is caring is all that matters.

Another huge thank you to everybody who voted for me in the Brilliance in Blogging Awards. I can still hardly believe that I made it through to be a Finalist in the Inspire category. Up against some amazing blogs, and a great bunch of ladies who all have much to say and who try to do good in the world. I'm currently at the BritMums Live event in London, and the Awards ceremony will be taking place later on today. Just to know that many people appreciated my blog enough to make the effort to vote for me warms the cockles of my heart, so thank you all! Not expecting to win at all but I have taken many photos today and no doubt there will be a future post summarising my experience... 😊


(This photo is not one I have taken today funnily enough. I obviously need more lessons on how to blog on a mobile...)
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Friday, 24 June 2016

48 vs 52: Let's not forget

Gutted, so gutted.

What have we just taught our children? That it's OK to throw your toys out of the pram when you're not the biggest player? That we think we are better than 'them'?

Not my children. They know that I think it is better to be open and work with everyone; to look at all sides of the story and not assume you are the best or that you know everything. To be tolerant, and inclusive, and not always think that the grass is greener.

I can already hear the Leave voters - 'ah, the economic drop is only temporary', 'oh, now we get chance to decide what our country will do, it's much better'.

How do they know? How do they think they are capable of steering this country in the right direction - and more importantly than that, who do they think is going to steer it? The picture of Farage with his hands in the air made me feel physically sick this morning. Or maybe they'd rather have Boris in?

There is no strong leader of our country. That's just another reason why we were better off in Europe.

How do we think all the foreigners in our country feel this morning? Let's not forget, many of them save lives and help us in all sorts of ways. What happens if they decide to leave to 'go back to their own countries'? Do you want to be operated on by someone who wasn't quite so dedicated at their studies? We have much to learn from other countries still, and there were many ways they could have helped us. I'm guessing their doors are not going to be quite so open now. They're busy. They don't need us, they learned how to speak English some time ago.

My first thought was that I'd like to jump on a train and go to Europe, visiting as many people as I can to tell them I voted in, to try and somehow stop the bad feeling. Do you think anyone over there is ever going to remember that 48% of us wanted to be in?


I think not. I think what they'll talk about for a while, is how we want to tighten our own front door to stop the terrorists and immigrants getting in. Let me tell you people, those terrorists are already here. The London bombings? Those guys didn't just pop over on the Eurostar for the day. Immigrants? We pretty much all are, apparently.

After a while, they won't even be talking about us anymore. What exactly do they need us for? Do we have an never ending supply of oil that no-one else has? Do we have the cleverest scientists?

I'm sad that my girls won't get to experience life as I did when I grew up. The excitement of being able to visit other countries, and of being welcomed everywhere. These are new scary times we are entering into - who's to say whether they will be better or worse? If I was a betting person, I know where my money would go....
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Sunday, 19 June 2016

Siblings ~ June 2016

It has been a very busy couple of months for us; roll on the summer holidays! I can't let the month go by without my usual siblings update though. I love the fact that I can document here the changes in my girls over the years, and there's usually more than one photo of the two of them together that I can choose from every month.

This time, I seem to have 'lost' some photos which were taken on the actual day (it's the 15th of every month). I'm living in hope that I'll somehow find them again, but in the meantime I'm going to use a couple of others: first, a photo taken today on Father's Day, so it includes their Father which is quite fitting I guess! We were over at our new house, having loads of fun in the garden with some water balloons....


The other one I'll use is one which cheered me up massively when Sasha and I were stuck in hospital. Sasha was obviously missing her big sister lots, and each time Tamsin came in to visit it was lovely to see them close together:


Oh, and see now I've started, I just can't stop. There have been lots of happy sisterly times since we came back from hospital, so here's a few more:






That's all for this month folks, I'm already looking forward to next month's!



The Me and Mine Project
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Deliveroo: Food to your door! (Review)

There's a new food delivery service in town, called Deliveroo. We tried it out at the weekend and we were very impressed with the ease of ordering and the super quick delivery.

Deliveroo prides itself on working with a carefully selected number of good quality restaurants - places like Pho, Pizza Express, Wagamamas and Zizzi amongst others. So not the usual takeaway places, but great eateries who otherwise might not offer delivery. We had four well-known local restaurants to choose from when we ordered; Greek, burger, pizza and healthy nutrition type offerings, so a good range of meal options. We chose pizza:



The website is very simple to use - just tap in your postcode and you will be shown which restaurants deliver locally, with their 'asap' order/delivery time shown right up front, very helpfully. You can also select a specific time for delivery later today or tomorrow if you're good at planning ahead! Our options all showed between 35-50 minute wait, but when it came to it we got our food even quicker than that, about 30 minutes after ordering. It was delicious too. Great customer service is always about under-promising and over-delivering I think!


The average order takes 32 minutes to be delivered apparently, and Deliveroo can also deliver to offices - lunch for the team for example. You pay for your food up front by credit card, and there is a small delivery charge (£2.50 for us). You can choose whether to leave the driver a tip by adding it to your shopping basket as you order online (but you can also hand the driver a cash tip if you prefer).

Steph's Two Girls

If anyone would like to try this food delivery service, comment below (or email me directly on stephstwogirls@gmail.com) with the email address you would sign up to Deliveroo with. I can then provide a code to give you £10 off your order, which you would place yourself and get delivered locally.

Why not try it today? If you have any other questions about how it all works, you can visit their great FAQ page.


Disclosure: we were given credit to try the Deliveroo service. All comments and opinions are ours and we haven't been asked to write anything specific.


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Wednesday, 15 June 2016

Autism is here to stay; where are the appropriate schools?

At last, the 'news' which we've been waiting for has come through. Most, if not all, of the Local Authorities (LA) who had been previously using the scandal-stricken law firm Baker Small have now released statements stating that they are terminating contracts and not using them for any future business.

If you've missed the news of late, you can read my last post Why Baker Small (BS) should be out of business tomorrow. One man, who should have known better, got carried away with his gloating tweets about cases involving parents of children with special needs. He obviously didn't realise what a strong community of SEND (Special Educational Needs and Disabilities) parents we are...

I mean, cute cat and all, but you can hardly say any of this was a laughing matter....

There's a great article in the Guardian in which it is suggested that any work which BS has lost representing LAs will be replaced with them representing parents.

I had to stop and read that part again. Seriously? A lawyer, who has openly shown his contempt for parents, now wanting to increase his work by representing those very parents? Even if his offer was to work for free, who in their right mind would want to work with him, knowing how little regard he has for the rights, moral and otherwise, of others? Can a leopard change its spots?

Here's the man himself talking on a radio show he phoned into.

LBC Radio Show chat with Mark Small

Contrived, much? What it does show, is that he has great knowledge in this area of SEND - shame he didn't use it for the good cause. It is all too true, as he says, that 'there is an absence of good quality autism provision'.

This is only the start of wider discussions to make the system fairer though. Maybe we should be a little bit thankful to Baker Small for making this whole issue so public. This system which leads to families of children with additional needs having to go to Tribunal, and face both emotional and financial breakdowns to secure appropriate provision, obviously needs a major shake-up. This is where the hard work begins to ensure that happens.

It's vital now that we go back to the start, to look at what the true needs in each county are, in order to ensure that there is appropriate educational provision for every child. Our county currently pays for around 259 children to be educated in schools outside of this county - a shockingly high number, which begs the question that if a school elsewhere can work with these children, why can't the schools we have in county? What makes those out-of-county schools different/better? Are they smaller, do they have autism bases attached, are they specialist autism schools? What needs are they catering for which aren't met here? I am pretty sure that if I thought our girl could face the travel, I'd be going to Tribunal to fight for her to attend the amazing Limpsfield Grange school. It's not an option for us however. Why can't that type of establishment be offered in our county?

It doesn't seem like rocket science to me; we all understand that there is a finite amount of money and resources but maybe there should be an admission that the money is not currently being spent in the right places. The money saved from this contract not being carried forward should not simply be transferred to another solicitor's firm to carry on dragging families through Tribunal. It should be redirected to making sure that there are appropriate establishments for all, including those children who cannot cope in mainstream.

Most people accept that big changes will not happen overnight, but there do need to be clear plans in place to make sure that EVERY child is catered for and that there is no discrimination. Watch this space.

As a sideline, the last few days have clearly shown that parents do have power when they unite for a common cause, and that social media can be a great benefit for those who use it in a good way. Take note, BS.
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Sunday, 12 June 2016

Why Baker Small (BS) should be out of business tomorrow.

Sometimes, life throws things at you that you desperately want to write about (the EU vote) but can't, due to a lack of time. Other times, you feel you have to make time to write, no matter what.

Most people involved in the world of SEND (that's Special Educational Needs and Disabilities) will probably already be aware of the Twitter storm that went on last night. The first I knew of it was when the following popped into my timeline:



Trib is short for Tribunal and ABA refers to a certain method used with autistic children chosen by some parents which is much discussed and debated. That's not the issue we're discussing today.

The attitude in this tweet is that although parents think they've won the case, the solicitors are happy with their work and with what the parents had to concede. Hardly professional, is it? To be honest, that one tweet should be enough to close this despicable company down. However, there were more tweets, several more, showing no remorse for what they had said.







For those who don't move in these circles, let me tell you a story.... except it isn't a story, it's real life. It's the sad truth that many parents of children with disabilities have to fight to get their child an appropriate education. 

Yes, fight. This firm of solicitors, Baker Small, is employed by several Local Authorities to be the LA legal representation against parents of children with SEND. Cases go to Tribunal when parents do not agree with the contents of the Statement or EHCP (Education Health and Care Plan, which determines support needed for a child with additional needs). This can include which school is named for their child. Judges then determine what provision is suitable for the child. 

We haven't yet had to go to Tribunal personally, because we were lucky to find a school which has worked hard and been flexible to accommodate Sasha's needs. We are well aware though hat Tribunal may be necessary in the near future, at the point of transition to secondary schooling (something I've written about previously on my blog here), as a child with PDA (Pathological Demand Avoidance) doesn't easily fit into the currently available options locally. However, through working with many parents in this county, I'm already aware of the process, and of how painfully stressful, and expensive, and ultimately unfair this is on families who already have extra challenges in their lives.

Most children without special needs or disabilities automatically receive an education in school, where their child learns enough to make their way in this world independently. They can be taught in a traditional manner, in a class of 30, following a set curriculum. This sadly doesn't work for all. It's not the child's fault, it's not the parents' fault.

Let's be clear, it can be more expensive to educate children with special needs. There's often a need for more individual teaching or support, and of course there's a cost attached to that. This firm prides itself on reducing costs for LAs. I have no issue with money being spent in the right place, and law is in place quite rightly to uphold that. I'm sure however, that most parents are not looking for the diamond standard of education; they're not looking to see how much money they can get out of a LA, they are simply trying to fight for the right to education which is suitable for their child with needs. We could also talk about the extortionate amount of money which the LAs have spent needlessly on the services of this firm - when I say needlessly, there have been many examples of parents 'winning' in Tribunal, so the law is clear about what is right for the child. Money wasted, which could have been spent on providing appropriate education for these children in the first place. Many children have ended up out of school for months and even years, stressed to the point of breakdown (along with their parents) and left with serious mental health issues - and we wonder why the instances of mental health and costs of treatment are rising in this country? Why not get it right in the first place, and ensure there is appropriate provision for all?

The tweets clearly show that they do not have the child's best interest at the forefront. Something which Edward Timpson MP made very clear was at the heart of his SEND reforms, In his own words:

'Like any parent, I want the best for my child. Every parent should expect people who provide support for their children to make sure that support is the best it can possibly be. And every child and young person has the right to expect a good education, and the support they need to become independent adults and succeed in life. The system for supporting children and young people with special educational needs and disabilities is changing. For far too long, many families have had to fight for the support they need. That has to stop. I want to see a system where families are at the heart of things. A system where decisions taken by those who provide support for children and young people with special educational needs and disabilities really do put those children and young people first. The most important people in any child or young person’s life are their parents. You know your children best of all. What you as parents think, feel and say is important. You should be listened to and you need to be fully involved in decisions that affect your children. That’s what the new system is all about.'

What we are asking for is some morals, a fair playing field, and the child to be put first. Accountability everywhere.

Baker Small. No empathy, no morals, no understanding. Hopefully as of tomorrow, no business.


To follow me on my other social media channels, you can find me here:

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Saturday, 11 June 2016

Magformers Magnetic kit review

Not sure if I've mentioned it before, but I used to be a Toy Buyer (sounds like a dream job, huh?!). A few months ago, I was invited to visit Toy Fair to take a look at a huge array of brands and products which many children will find in their stockings this year.

One product which stood out for me was Magformers. Billed as an 'intelligent magnetic construction set', I could instantly see the appeal for boys and girls alike.


We were sent the Inspire 30 set for review. It contains (funnily enough) 30 magnetic pieces; 12 triangles and 18 squares, all in pretty pink and purple colours.

Both girls loved playing with the Magformers and they found the colourful booklet included very helpful to start them off. They managed a 3D pig/cat (?!) and a heart in minutes and were very proud of their creations!




Personally I love the creativity that stems from this construction set, and the knowledge that it's giving them a bit of hands on science learning with the magnetic function. This product has won awards - certified safe for under 3s, the magnets are encapsulated in tough plastic and pieces are not too small so swallowing is not an issue. There are lots of different sets and colours available, and retail prices start at around £16.99. There's a great video on their website which shows some pretty impressive builds - check out magformers.co.uk/about/creativity/


Disclosure: We were sent the above product for the purpose of this review. All the views expressed here are our own.



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Tuesday, 7 June 2016

TEP portable wireless unit for easy WiFi access (review)

Now I have to go off at a tangent in amongst my hospital update posts, to tell you about a bit of kit called the TEP wireless unit that was, quite literally, a life saver.


Oh OK, maybe I'm exaggerating just a little bit, but this unit was extremely helpful to us whilst in hospital. I'll sort of gloss over the fact that we had ordered it because we were in fact meant to be away on a holiday in France over half term (*sobs quietly into the Pimms*) and just get straight onto telling you what it's all about so you can plan ahead for summer. Or for your next hospital stay, maybe.

The TEP unit is a wireless modem that connects any WiFi enabled device to 3G internet. This means you can hook up laptops, smart phones or tablets - yes, I know it's slightly sad that we wouldn't consider going on holiday without these, but Sasha is our excuse for this. Whilst we could all cope without for a week (*coughs*), Sasha uses her iPad to switch off from the outside world and de-stress. I think lots of us like to do that if we're being honest....


So the unit comes with all you need in a compact soft pouch. Included is the unit itself, a user guide, a nifty little plug for charging which covers all 3 and 2 pin sockets, and the lead for when you need to charge it. Also included is the pre-paid postal envelope so you can return the unit at the end of your rental period - my advice would be to keep this in the pouch at all times...

It was so simple to use - just switch on and the unit finds the best signal, then you locate the passcode on the TEP unit, check under the wifi settings on your device to link up with the TEP, enter the code and press start! It resets the connection every 24 hours but you don't need to go through the whole process again, you simply choose yes to confirm another 24 hours use.

Up to 5 devices can share one TEP pocket wifi at any one time, but bear in mind the more devices which are hooked up, the slower the download speeds will be. We had three devices on the go off one unit at once though and didn't notice any problems, even with the girls watching YouTube.

I'd never have thought of using it in hospital, but the first hospital we were in had limited wifi, meaning Sasha could only watch videos rather than YouTube for the first 4 days. When we were transferred to the Royal Brompton, it felt like a luxury to have full wifi access there, but that posed a problem when we realised we were about to be transferred back to the original hospital and full wifi would be lost! So the unit came in very handy as we plugged in as soon as we got back to the original hospital and Sasha had virtually uninterrupted YouTube viewing (but ssshhh, don't tell anyone...).

We found another great use for the unit once we'd left hospital too. In our new house, which is currently 'awaiting renovation', there isn't any wifi yet - or at least there wasn't, until we took along this portable unit! So not just suitable for holidays, it can be a lifeline in other situations.

The order process online is so simple, and it can be delivered direct to your door a day or so before your rental period, or direct to your destination, or you can arrange to collect from London Heathrow or Paddington station. They cover everywhere you might want to go on holiday, Europe, America, Australia etc. Great service, really couldn't be simpler. For more details and answers to all your questions, check out the TEP FAQs. If you'd like to order one, visit their website!

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Sunday, 5 June 2016

Hospital Stay: Part 2

So poor old Sasha spent Sunday hooked up to a drip of fluids, dozing on and off in her hospital bed inbetween regular temperature, blood pressure and oxygen level checks, whilst also having antibiotics pushed in a few times via the cannula in her hand. On the plus side it had only taken three of us to hold her for the cannula insertion and bloods this time (see my post from 4 years ago) - I think she was just so shattered seeing as it was around 2am when they did this in A&E. Sasha also had a chest X-ray in A&E, which showed an effusion on one of her lungs and which led to the initial diagnosis of pneumonia.

(If this post isn't making much sense to you, try the first part of our story at Post Streptococcal Glomerulonephritis)

My Sunday involved frantic early phone calls home for the taxi service to bring food that Sasha would eat, and clean clothes for both of us. When Dad and big Sis arrived, it was just in time for the breakfast round, and Sasha sat up eagerly to eat her toast as she was obviously feeling hungry having eaten nothing the previous day.

Sasha on Sunday morning; puffier but hungry and smiling bravely
She looked much worse, but actually seemed fairly bright and we were amazed to watch her gobble down two slices of toast - amazed mostly because she is generally so fussy about how her toast is done at home, and about what spread is used etc, and this was nothing like that.

Sadly it was less than a minute after eating it when we saw the toast again, if you get my drift. I think that's the point at which I accepted we had to be there. The night before, I had been gutted that the A&E doctor had made me break a promise to Sasha, as that's something I very rarely do. I'd told her that if she took the liquid medicine, we would be allowed to go home, as that is what the doctor promised me. I hadn't made any allowance for the doctor changing her mind, or for the fact that Sasha was very ill, and it was very difficult having to go back on my word to Sasha. In all of this extended stay in hospital, one of the most difficult things to try and explain to Sasha was how the hospital was helping - as far as she was concerned, she hadn't even felt that bad when we ended up in A&E, and all the hospital was doing was making her feel worse!

So Sunday passed by in a bit of a sleep-deprived blur until it got to the evening, at which point a new patient was shown into the same room as us. Happened to be someone we already knew, and that was not good news. He and his mother proceeded to make lots of noise in the room, playing shooting and driving video games and having phone calls - on speaker phone! - until late in the evening (930pm) and at that point I had to beg the nurses to switch Sasha to a different room. It was only next door, into another room with 4 beds, but for that one night it made all the difference. We'd had such little sleep after being in A&E for 5 hours and then follow up testing the next day, that nerves were very frayed. The next night a teenager was shown into our new 4 bed room, and her mum also proceeded to have a very loud, long and late phone call by her bedside, but with no other free rooms we were stuck with her. Two nights after, when the teenage girl went, we had two young boys plus a teenage boy who left his phone on vibrate on top of his cupboard after he'd gone to sleep at a decent hour. It was buzzing away, keeping me awake still at midnight. That and the 'disturbance' coming from the other boy in our initial room next door... and by disturbance I mean the sound of furniture being overturned, shouting, and running up and down the corridor. Oh, the joy of a hospital stay.

I felt very relieved that I'd asked for the room move on the first day. Luckily Sasha slept through most of the disturbances, but on the Wednesday night her oxygen levels had started to fall significantly and so they hooked her up to a monitor which set off a loud alarm (and woke her) every time her oxygen fell below 90% - which felt like every 30 minutes. Eventually they decided she needed the help of some extra oxygen, so they set a mask up in front of (but not actually on) her face. This helped a bit, but the alarm would still go off every time she moved, or if the mask slipped. That was probably the worst night of our stay. The feeling of being unable to help your own child, being helpless, is very stressful and isolating. At the same time, a small part of me couldn't help thinking that if they'd just turn the noisy alarm off, Sasha (and everyone else in the room) would get a decent night's sleep and not be so stressed in the morning. But hey, what do I know, I'm no nurse...

Now I'm not exaggerating when I say that by this point we'd seen at least 20 different faces - doctors, day nurses, night nurses, sisters, food and cleaning staff, play specialists, radiologists, porters, nutritionists etc. It was probably closer to 30, thinking about it. All very confusing for Sasha, who struggles with new people and new situations.

The doctor who spoke with us on the Tuesday and Wednesday was a lovely lady who explained that they no longer thought it was pneumonia, as Sasha wasn't poorly enough (!). We'd been for an ultrasound of her chest and stomach, and although it had shown extra fluid, the levels weren't particularly worrying. The blood tests were showing low protein, and the puffiness was still unexplained at this point. The doctor drew this picture on a napkin, trying to help Sasha understand what the issue was:


Sasha was definitely not in a mood for listening or understanding though, and I asked the doctor if we could talk things through outside the room rather than in front of Sasha. That in itself posed its own problem, as of course Sasha wasn't keen on me leaving her side, but she seemed to accept it and from my point of view it was much better than the idea of Sasha being stressed out by lots of big words and things she wouldn't understand. It took four days for me to be awake enough to realise that I needed to try and be a shield for Sasha, and make sure that there was the bare minimum, and only very necessary, contact. I'm a big believer in the fact that there is always a polite way to ask, and it seemed to work OK luckily.

Sasha trying to put a brave face on it as we waited for the CT scan; possibly just as well she really didn't know what was coming...
By the Thursday morning there was still no decision about what Sasha's diagnosis was, and the doctor asked for a more urgent heart ultrasound. Then a CT scan was requested as they were getting concerned about what might be going on that they couldn't see. We made the mistake of telling Sasha about the CT scan before they were ready to take her, and as we'd been told in a bit of a rush, we hadn't thought to ask what it involved - neither of us have had one before. This caused extra anxiety for Sasha and she then didn't want me to leave her, so Dad had to go off and talk to the doctors alone, which was frustrating for me as I needed to hear their thoughts myself. Luckily Sasha calmed enough for me to go and join the end of the 'chat' with the doctors, but then I kind of wished I hadn't. 

We were informed that the heart scan had shown 4 leaky heart valves - a rare occurrence apparently. If there's something you don't want to hear in hospital, it's that a) they are not sure what the problem is and b) that it's a rare problem.

So we were told to go ahead with the CT scan and while we did, they would be trying to transfer us to a specialist hospital, preferably Great Ormond Street. The CT scan was probably the worst experience for Sasha - what they hadn't warned us about was the fact that they needed to inject more medicine very quickly before scanning, and this caused her considerable pain. We decided not to tell Sasha about the possible move until we knew for sure ourselves. When we got back to the ward at lunchtime, we were told that GOSH didn't have any beds free, so our hospital were talking to the Royal Brompton in London instead - a specialist heart and lung hospital. A couple of hours later, after assessing the case, they agreed to take Sasha, and it then took an hour for ambulance transport to arrive before we were 'whizzed' off to London. Luckily with no blue lights, as I think that would have scared Sasha (and me) even more, but it did mean the journey took 2 hours as London traffic is so bad!

Sasha on her stretcher in the ambulance, looking quite terrified. Luckily she slept for most of the journey.
I'll break here as there's plenty more to the story yet (sorry, hope you're not all as bored as I was...) but I'll end this post on the happy news that they did manage to find us a single room at the Royal Brompton, which made such a huge difference in terms of Sasha's anxieties and helping her rest and improve.






read more "Hospital Stay: Part 2"

Friday, 3 June 2016

Post Streptococcal Glomerulonephritis

Sometimes, there's so much to say that it's difficult to stop typing. Other times, there's so much to say that it's difficult to know where to start. The latter is how I've felt for the last couple of weeks.

Post Streptococcal Glomerulonephritis.

That's what the doctors eventually settled on. The good news is that we left hospital on Monday after a unexpected nine day stay, and boy was it good to get home. We did have to go back on Tuesday for some follow up tests, and we now have community nurses coming to visit us twice weekly for the foreseeable future, but for now, Sasha is improving every day.

It's a long story, and although I'll try and keep it brief, I will forgive you if you go to sleep half way through...
Sasha at home on the Saturday; just looking slightly puffy but nothing too concerning
May 2016 will not go down as one of our better months. Sasha had been poorly with a cough right at the start, and didn't eat food for four days. We saw a doctor, who suggested it was just a cough virus, and as Sasha started eating again we assumed she was getting better. Her temperatures kept going up and down, but nothing extremely alarming so we just assumed she was 'under the weather'. After another week of being in and out of school, and Sasha waking up on a Wednesday looking a bit puffy, we visited a doctor at a new surgery (you can read why here). This lovely doctor informed us Sasha had an ear infection; quite a bad one as it happened and we could see it oozing (TMI, sorry!) even though Sasha hadn't complained of any pain. So we gave the prescribed ear drops and thought that would do the trick.

By the Saturday morning, there didn't seem much change, and I set off early for a planned day at BlogCamp in Birmingham. When I checked in back home, I heard that Sasha hadn't been eating again, and whilst I was on my way home in the afternoon, she was actually sick. She did feel like eating again immediately afterwards though, so we thought it was one of 'those' bugs. When I eventually got home, I realised that the puffiness had worsened.

So I called an out of hours doctor, slightly concerned at this stage, even though Sasha herself didn't seem to be. We got an appointment for 930pm; Sasha didn't want to go but I persuaded her and we set off with very little apart from her beloved Terry turtle and a bucket and towel in case she felt sick again. I left the bucket in the car but fortunately took the towel with me as we went in to see the doctor... lucky because no sooner had we sat down than Sasha threw up again, into my towel covered arms. The doctor looked non too pleased, but also slightly confused because all her indicators were reading typical - no raised temperature, blood pressure OK, breathing OK etc. When he heard how long she had been 'off colour' for, he decided the best course of action would be to send us straight to A&E at Watford.

So Sasha was fairly calm and resigned to the 'adventure' as I drove her there, and I tried to say as little as possible as chatting is not her thing. The next five hours felt like days as we waited first on a chair but then thankfully on a bed as they tried to establish what was wrong - an X-ray after the first couple of hours showed her chest to have an effusion (gathering of fluid) so they decided antibiotics would be good. Cue me trying to give our girl, who absolutely never ever takes any medicine, some very strong flavoured white 'stuff' in a syringe at around 1am in the morning. I honestly think she was just too tired to resist; that, coupled with the fact that they told me, (and so I told her), that if she took the medicine they would send us home with the rest of the bottle.

Sasha in A&E, shattered at about 1am, with her beloved Terry Turtle
I managed to get the medicine down her, unbelievably, and spent about an hour rejoicing silently whilst wondering how long it would take them to discharge us. All of a sudden though the doctor returned, saying she thought it may be pneumonia so she needed to give more antibiotics and fluids via a cannula/drip and then transfer us to a ward. That's how we came to find ourselves on a ward at 330am, luckily alone in a room of four beds, and we managed just a brief couple of hours sleep before nurses came to top up the IV antibiotics, test blood pressure and take temperature and oxygen levels.

At this point in the story, I'm already thinking that it's just not going to be possible to keep it brief, sorry, so instead of boring you all in one go I'm going to stop here and keep you waiting for installment number two.... am sure you'll thank me for it later ;)

In all this, I just want to highlight two things; first that our NHS is totally brilliant and we are very grateful for the fantastic care we received (from many doctors and nurses, as it happens), and second, that the combination of autism and hospital brings many challenges, not least in terms of sensory issues and being prodded, poked and spoken to every couple of hours. For any autistic child this situation would be a nightmare so I am so super proud of how well our daughter coped with everything thrown at her. Children are amazing.

read more "Post Streptococcal Glomerulonephritis"

Num Noms: Review

A little while back, just before our recent drama, we were sent a package of Num Noms to review.

Stephs Two Girls

Both my girls had heard of Num Noms long before me, thanks to the wonders of YouTube and 'unboxing' videos. Eldest daughter had great fun producing her own unboxing video (although lucky me, I got to edit the full 18 minutes down to 5....), so of course I'm going to share that here:


Num Noms are a new cute collectible craze following hot on the heels of Shopkins. They are scented, mini food dishes to play with - ice creams, cupcakes, waffles and various other food items. The Noms are hard, base characters in the form of either a mini motorised item or a lip gloss case, and the Nums are soft, squishy shells which stack on top of the bases. In the sets you also get accessories such as various ice cream dishes, cones or scoops.

The idea is that you mix and match them to create your own delicious treats; the website offers lots of inspiration with recipe ideas. They are now on series 2 and apparently there are over 5,000 combinations!

Stephs Two Girls

The motorised Noms are actually quite amusing as they roam the floor in a haphazard fashion. Tamsin loved the scents of these items and thought they were all very cute looking.

Stephs Two GirlsThe starter set we were sent retails at around £8.99, and the 'blind bag' idea has been cleverly turned into a yoghurt carton for this range - they retail at around £2.99. There are deluxe packs including 6 with an accessory for around £14.99 and playsets at £24.99. Beware, these Num Noms are highly collectible; once you start, you just can't stop! On the plus side, at least half of them don't hurt your feet if you tread on them at least...

Disclosure: We were sent the above products for the purpose of this review. All the views expressed here are our own. 
read more "Num Noms: Review"