Today is World Prematurity Day and for the 1st time in the 3 years since being affected by prematurity I must confess until I had seen Facebook posts reminding me I had forgotten all about it.
Seeing the posts being shared to raise awareness for prematurity made me reflect on our own families experiences. Prior to having had actual experience of being a parent of not one but two children I knew nothing about premature births – they were just things that happened to other people so I didn’t really need to know anything about them. Things started to become problematic in our pregnancy and the only way to give both twins the chance to survive was to elect to deliver at 28 weeks gestation – a whole 3 months early. It was first discussed at our 16 week scan that we would likely have the boys earlier than the usual (for twins) of 36/37 weeks. I can remember telling my sister that it would be OK; they would be small but being on ventilators would mean they could put all of their energy into growing and there was nothing to worry about. Whether this was in some way a coping mechanism on my part or genuine naivety I don’t know. But a few weeks before our delivery date was arranged we had a tour of the NNU (Neonatal Unit) and a ‘counselling session’ with one of the Neonatal consultants and I think it was at that point the magnitude of what we were facing hit us. There were so many hurdles to get over; NEC, infections, just being too small and too weak to fight to survive.
During our time in NNU we met lots of other families (we had quite a long stay of 3 and a half months) and most of them had no idea that they, too, would be becoming “prem parents”. For a long time I couldn’t decide who had the advantage; Mark and I – in knowing that prematurity was in the road ahead – or being oblivious of it until it happened. I don’t think that there is any correct answer to that, but the journey we have taken as a family so far has made us into the family that we are. Although the road has so far been difficult and who knows what lies ahead we have got this far.
Prematurity can happen to anyone but the work that charities such as Bliss do in raising awareness and working with hospitals is amazing; coupled with advancements in medicine, survival rates for even the tiniest of babies are improving!
I don’t know if I believed in miracles until I had two of them!
This is the first review of a book for my blog! As I’m sure I have already said I have always wanted to be part of a book club – but having yet to find one I thought I would ramble away on here!
Fractured is one of the original books I selected from the Kindle Unlimited library – I loved the synopsis and knew it was a book that I wanted to savour and enjoy rather than read whilst watching TV in the evening.
The description for the book on the Amazon website is:
“What would you do if life gave you a second chance?
The night of the accident changed everything…
Now, five years on, Rachel’s life is crumbling. She lives alone in a tiny flat, working in a dead-end job, desperate with guilt over her best friend’s death. She would give anything to turn back the clock. But life doesn’t work like that… Does it?
The night of the accident was a lucky escape…
Now, five years on, Rachel’s life is perfect. She has a wonderful fiancé, loving family and friends around her, and the career she always wanted. But why can’t Rachel shake the memory of a very different life?
Gripping, romantic and heartbreaking, Fractured is a magical love story that asks: can two different stories lead to the same happy ending?”
I found from the first few pages I was hooked. The book is beautifully written and, unlike other books I have read in the same genre, didn’t feel predictable. From early on in the book I must confess I was trying to guess the ending – but my imagination of the conclusion was worlds apart!
One of the most poignant parts of the plot for me was at the point of the fracture in Rachel’s life when she is coming to the realisation that ‘her’ past and everyone else’s since that night 5 years prior are very different. I found myself really rooting for her to make her friends, family and medical professionals realise that there was a mistake; that she didn’t belong in that reality.
I loved the characters and the way that their interactions are portrayed throughout the pages of the book. I found myself truly absorbed within the world of the book; at several points I found myself crying while reading it. But note; not just through sadness! I think this book would make an amazing film – certainly one that would deserve a supply of chocolate, a box of tissues and the obligatory glass of wine!
If you would like to read it for yourself it is available from Amazon!
I would love to hear your thoughts on the book, or if you have any other suggestions of books you think I might like to read next!
The Bath Festival of Motoring’s sponsored charity this year was The Wizzy Bug! As Ethan is a current user of the fabulous Wizzy Bug we were kindly given VIP passes to go along. Bath is quite local to us and it sounded like a fun day out so we were more than happy to attend!
Ethan has had his Wizzy Bug since late January. He is still getting to grips with using it himself and is largely still reliant on Mark or I using the parental controls. Ethan loves anything that is button operated; we purchased a children’s 6V quad bike on eBay for both Ethan and Theo to use and were overjoyed that Ethan took to using it straight away – and given that it has no real back support he was surprisingly stable using it!
Designability (the creators of the Wizzy Bug) had arranged an obstacle course in their tent for children (both Wizzy users and non-users alike) which looked like great fun! Theo had a go on a Wizzy Bug and took to the controls straight away – he just wasn’t concerned by the fact that you are required to steer such pieces of equipment but still had a great time.
Ethan left, Theo right
As well as the Wizzy Bugs on display there were of course a great many classic cars and bikes which were beautiful to look at. And, tucked away in an adjoining field, was a display of remote controlled airplanes which the boys thought were amazing – especially the jet engine ones as they have a fabulously loud roar!
We very much enjoyed our day and the VIP lunch was a huge hit with the boys!
The details of the Wizzy Bug charity on the Bath Festival of Motoring website quote the cost of issuing each Wizzy Bug as being £4,250 which, although is a considerable amount, the difference it makes to children as young as 18 months is huge. The charity issue Wizzy Bugs to families through a loan scheme – a fantastic scheme which I fear is not widely known about.
Go team Wizzy!
I love reading, I can’t get enough of losing myself in the world held inside the pages of a good book. Unfortunately there are just not enough hours in the day to get a lot of reading squeezed in at the moment. It is the one reason that Winter is my favourite season; the days are shorter and you don’t feel as guilty about snuggling up on the sofa with a good book! I say book – I have moved over to using the Kindle app on my Smartphone now rather than reading a proper book! I have found for me the best and most cost effective way of reading is to use the Amazon Kindle Unlimited scheme. For £7.99 a month you can choose from over 700,000 titles ‘taking’ 10 out at a time; there are no late fees and they even offer a 30 day free trial. I have found it to be great and well worth the fee
I am trying to get the boys interested in books from a young age and they adore having Beatrix Potter books read to them at bedtime. “Squirrel Nutkin” and “The Flopsie Bunnies” are the two most frequently selected – I’m sure I could recite them from memory if required!
I have always wanted to be part of a book club but don’t have time to join an actual one that requires you to attend a meeting as such and for a while I was part of one on Facebook that fizzled out after a few months. So I will talk about my recent reads on here and would love to hear your thoughts as well!
I can’t believe that so much time has passed since my last post! Soooo much has happened in that time. Mark and I have had milestone birthdays and the boys are turning 3 in just a couple of weeks.
Since my last post the boys have made such amazing developments; they are still developmentally delayed in comparison to their peers but are so bright and just bursting with energy. A very brief catch-up on the last 12 months: Ethan was diagnosed with Diplegic Cerebral Palsey last year and Theo is potentially going to be assessed for being on the autistic spectrum. Both boys are non-verbal and we are making progress with objects of reference. They are the light and soul of our lives!
We have had a very exciting year with the business which has been great, but more about that later!
Although it may have been a year (or slightly more) since my last post I have been documenting bits and pieces to write about so over the next couple of weeks I will get it all written up and posted!
The main part of Ethan’s Diplegic Cerebral Palsy is that he is unable – yet – to walk. We found that once Theo was a confident walker he would no longer go in a buggy – which suited us – so we went from a double buggy to a single buggy for Ethan to use when out-and-about. In theory the solution worked well, however the reality was that Ethan hated it. Once in the buggy he would become disinterested in his surroundings which was heart breaking – especially as he’s a quieter boy already. So Mark and I took to the internet to see what alternatives were available. The NHS does not consider a child below the age of 5 as requiring a motorised wheelchair – which meant we were going to have to look further afield. During our searching we found Designability who have made the incredible Wizzy Bug.
The first generation Wizzy Bugs were made in the 1990’s when they made and sold 125 before the moulds required significant investment to replace them. This gave an opportunity to redesign them and so it was modified to be more in line with how they are today!
(Image courtesy of the Designability website)
The Wizzy Bug is offered to families of children with conditions such as CP on a loan basis with a deposit of £200 which is returned when the Wizzy is given back to them.
We were initially dismissive of the Wizzy Bug as we felt that it was almost a step too close to Ethan using a wheel chair (he’s only two!), which I think for any parent is a very difficult concept to get their head around. Then by chance we met another family at one of our Hydrotherapy sessions whose little boy uses one – and hearing how it had enabled him to have a sense of independence which we were so desperately seeking for Ethan made us re-think. After our initial enquiry to Designability we were sent forms for our Occupational Therapist to complete and – a little while later – we were accepted! After waiting what felt like forever for a Wizzy to become available we all went along to Bath to get Ethan’s Wizzy Bug. The team we met were lovely and we were soon happy with how it all worked and Ethan had his first set of wheels!
Ethan in his Wizzy Bug!
Ethan is quite a laid back chap by nature and has got quite used to the parental controls being used by Mark or myself to get out and about. Amongst our efforts we have tried everything (including bribing!); we have tried changing the side that the joystick controls sit in case Ethan has a preference to one side over the other but so far he seems to have little interest in controlling it himself. We have been buying joystick controlled toys such as cars – also with little interest shown! Yet anything button controlled he adores. We purchased a 6V childrens quad bike which is operated by a single button on the right handlebar which he took to immediately and adores using. Even though it has little in the way of back support Ethan is so stable using it in terms of balance! Mark is making a series of “micro skills” toys for Ethan to learn (along with other skills) that using a joystick is fun and to hopefully rule out any sensory issues Ethan may have with having something in the palm of his hand.
We are not giving up on Ethan enjoying using the Wizzy Bug – it is an amazing piece of equipment that has the potential to make such a difference to so many young lives! Ethan is exceptionally smart when he wants to do something! We just have to figure out just what will make the ‘Bug interesting to him (but we’ll persevere!).
Ethan and Theo have always had lot’s of hair and we put off getting it cut for as long as possible, but after a few occasions of them being mistaken as being girls we thought enough was enough and booked them an appointment. This was of course after (briefly) contemplating having a go myself, but thinking ears could be difficult to reattach in the event of me getting distracted by the other twin and the scissors slipping, decided against it! We have now been to 2 hairdressers!
The 1st did a lovely job but it just felt unfriendly so we thought for our 2nd haircut we would try elsewhere and what a difference. The 2nd salon had a special chair for children with a horse head for them to play with – but the boys were more interested in bashing the shelf with an array of combs, brushes and anything else they cold reach! It felt much more tolerant of children!
Below pictures of during their haircut! Ethan left, Theo right 🙂 [Note: I actually got this the wrong way around at first … oops!!]
After their haircuts having a little sit down, relaxing together with a real page turner! (Ethan right, Theo left)
All in all, the boys seemed to enjoy casing havoc and left with tidy haircuts!
I think if you have a less than happy experience try another salon! Both of the ones we have tried advertise that they are childrens hairdressers, but there is only one that I would use again!
I saw an advert for SmarTrikes when Ethan and Theo were still quite small and initially considered purchasing them for their 1st birthday (last July) but as the boys were so prem their development was quite delayed so decided to wait. I did however try and research online how other twin parents found having 2 children on SmarTrikes at once – and found little information….
We decided to get the boys their SmarTrikes for Christmas and I have to say they are great, they boys LOVE them! But as a twin mummy I don’t think I would be able to take them out on my own using them. They go in every direction when I try and control both at once! This could just be my inability to stear in a straight line but the fact that Daddy can’t very well either makes me think this is not the case!
One reason I loved the concept of the SmarTrike is that as the boys get older and more independant we can remove the parental controls (gradually!) and they then become trikes that they can race about on!
Ethan left, Theo right!
So as long as we go out together on them it’s great! The perfect excuse for long family walks! 🙂
We thought that the boys needed eye protection from the sun and what is cooler than identical twin boys in sunglasses?! So we did our homework and determined that Baby Banz were the best around, we got the boys the Retro Black style which we thought looked awesome! Typically after making such a purchase we then didn’t see any sun for what felt like forever, but then there was a sunny day and we got to use them! In the photos for the sunglasses the children/toddlers and babies all look happy and content wearing their awesome glasses, in reality this is not the case, at least not for us anyhow…….. Our first attempt at getting them to wear them was horrific; they screamed and ripped them off and in hindsight, probably wrongly we put the glasses back in their cases and thought we would try again another day. This was a mistake as the next time we tried they had learnt that if they didn’t want to they didn’t have to, there were tantrums and crying all round! But after what felt like a life time they kept them on!! And how cool do they look?!
We still have to persuade them to wear them (and they are pretty quick at whipping them off) but they are great and we would recommend them!
Ethan and Theo like nothing more (besides perhaps Peppa Pig) than going out in the buggy for a walk, rain or shine 🙂
We are currently on our 3rd twin pram, we have purchased all of them 2nd hand and including accessories such as rain covers, cozy toes etc have paid between £60 and £80. Each pram has had its pros and cons as with everything in life!
Our 1st prams is the Mclaren twin stroller!
- Reclines nicely and easily for sleeping babies and toddlers.
- Lots of room under the pram in the basket, we used this mainly when the twins were younger and Theo was still on Oxygen and we used to fit our medium sized cylinder under the pram! There are also some great sized pockets behind each seat, these are velcro fastened so easily opened and closed.
- Simple to put up and collapse down, also folds down to quite a small size so easy to get in and out of the car boot!
- Although a twin buggy it is quite narrow so getting in and out of most doorways is done with ease!
- This pram has 12 wheels in total which can be tough to steer, I have mainly only noticed this when I have had to use this pram again after using one of the others!
- It is not great ‘off-road’; living in a rural area we go over fields etc now and then and it doesn’t cope brilliantly.
- I think as the boys have got bigger and are more toddler size they are a little squashed in this buggy.
Our 2nd buggy was the Jane power twin
- Being a tandem buggy we are as narrow as most single buggy designs making more places accessible.
- Nice size storage basket under the pram.
- Being only 3 wheels it was all terrain!
- The buggy has a hand brake which was very useful (as well as a foot brake).
- It also reclined quite easily.
- You can set the front wheel to either be free spinning or locked in one direction.
- We found that Theo did not like being in the back of the buggy and always being in the front meant that he got the most attention. With Ethan being quite shy anyway we felt that this might exaggerate this further.
- No storage pockets.
- We found that occasionally the free spinning front wheel when mounting and dismounting pavements could be a little unstable.
Our 3rd and current buggy is the Out ‘n’ about 360
- This is a side by side buggy.
- It is a 3 wheel all terrain buggy.
- Although a double buggy it is quite narrow still and fits through most doors.
- The seats are almost tub like rather than being flat – probably comfortable but we would prefer flat for posture!
- It only has 2 positions – sat up right or led flat.
- We have found this buggy the hardest of all 3 to get in and out of the boot.
In summary the Out ‘n’ About ticks the most boxes for us having the benefits of being a side by side but all terrain style. But I really like each of our buggies for different factors and I think the perfect buggy would be a hybrid of all 3!
All of the pros and cons listed for each buggy are only my own thoughts and experiences of using them and everyone’s needs in a buggy vary greatly. We for example did not want to use the Phil and Teds double style buggy where the rear passenger is lower down and we felt would not be able to see out easily. We even saw at a car boot sale one family didn’t bother with the concept of a buggy designed for two but had their other child in the storage basket under the pram! (I would not recommend this lol).
I hope you find my thoughts of interest, please feel free to comment your findings with buggies!