4 out of 6 ain’t bad!

On Friday the 18th of August, Me and Rory were sharing a bath, something we haven’t always been able to do because of the risk of splashing / water entering Rory’s tracheostomy tube.

(First bath back together 14.8.17)

Mummy and Daddy were both sat on the ‘sideline’ enjoying our family bath time, which happens every night except Monday when Daddy works late, only this time, rather than taking a twin each and tackling the baby washing, teeth brushing and tidal wave preventing….Mummy and Daddy had a cute little hug with shiny eyes. They reminisced about the past 4 weeks and how amazing it had been, They said it was up there with the best 4 weeks of memories EVER and that it was the summer that we all deserved, that we should have had last year.

So, its taken a while in writing, but what did we get up to in those 4 weeks? And what happened to the final two? We have been rather quiet haven’t we?!

It didn’t start well. Mummy had arranged for us to go to Playmania with our baby buddy friends for Breakfast and soft play, to mark the start of the hols. It was the first time we had been to Playmania, EVER and so we were very excited.

(Rory with Mummys friend Faye. He doesn’t take to many unfamiliar people, but he loves Faye)

 

So….We have never been to Playmania before but we had lots of fun, climbing across the rope bridge, climbing up the stairs and going up and down the slides in the toddler zone, but that morning whilst Mummy was getting ready (having mastered a rare morning shower) her hairdryer stopped working. nightmare! Luckily mummy had dried the front of her hair and she couldn’t see the back 🙂

The fascinating thing is, when we returned from Playmania, there was a hairdryer, all boxed up, on our doorstep. Mummy took it in, in awe that someone would be so kind, but wondering who would be so thoughtful. She opened the door later on to go out, only to find that not long after, there was another. Two hairdryers from two secret saints. True meaning of Random Act of Kindness. If you are reading this…..ThAnkyou!

Anyhow…..

Mummy began to plan our Summer in the final two weeks of term before Daddy finished work. She used the ‘Mummy Diary’ that Daddy bought her and copied our Bucket List over into the Summer section.


We were so very lucky to have so many thoughtful days out gifted by family and friends at our Baptism and Birthday Party and we are STILL working through them. Thank you so very much to everyone, we have had a ball and will continue to have a ball thanks to you!

Week 1

Of course we were pleased to welcome Daddy home for the holidays….


Our first day of the holidays began with Mummy and Daddy taking us for our hair cut, and us spending the morning with Daddy whilst Mummy stayed for some pampering that she well and truly deserved for surviving the half term. However, Mummy needed more than a pampering with Kylie at Luxe, Barnsley (Check them out on Facebook) when we had finished because I was so not impressed about having my hair cut. In fact, 90 minutes of fighting with me made Mummy so riddled with guilt that she tried to pay Kylie more than double (which she refused) and Mummy sent me home with long bits. She has now decided that we will grow a mullet until we are old enough and wise enough to be reasoned with.


Whilst Mummy was having her hair done, Daddy took us to The Furnace sports day. As soon as Daddy saw it advertised, he said that he wanted to go. He loves a good competition and likes to think he is relatively fit and good at most sports. So….guess what….he took part, Nannie looked after us on the side line and Daddys team won. He took part in the three-legged race, sack race and relay. No injurys either. I say that because Mummy always tells him off because he insists on winning the Teacher race at sports day and usually comes home with an injury because he would rather be injured than lose.

Mummy met us at The Furnace and we went for a Pizza Hut.

In line with tradition, the Mates of Milton Gala that Mummy and her ‘mates’ organise is on the first weekend of the holidays and so final preparations were underway for this, Mummy and Daddy took us onto the field and we crawled around charming the dog walkers whilst Mummy and the other MOM volunteers measured and marked out the pitches on the field according to Mummys site plan. Well….that was the plan, except just like every year, it never goes to plan. Mummy spends hours planning and mapping it out to meet everyones needs and requirements as well as the councils health and safety indications and still, when it comes down to it, she might aswell chuck the plan in the pond!

So, just like last year, and the year before, regardless of how busy Mummy is, how difficult her life is at that time, (2016 gala organised whilst pregnant and poorly in a hospital bed, 2017 gala organised whilst at home with two poorly babies) she still finds the time to recruit and contact stall holders, book them in, organise the logistics and manage the social media and communications. Complete the risk assessment, council paper work and site plan and so on. Truth is, she absolutely loves it. She is so proud of our community and loves having such an active part in it.

Last year at the gala we had just made it home from hospital, Mummy knew that we were going to be surrounded by people wanting to meet us, although she didnt expect it to be as crazy as it was, we couldn’t actually move for people wanting to say hello, I think it was the point that Mummy realised how many local people were reading the blog and rooting for us. This year, it was still crazy but much more relaxed because we have met many people along the way and we are always at the park, visiting the ponds, walking around Milton and so most people see us often.

So Mummy helped Daddy with morning routine before jumping in the giant transit van parked on our drive and driving across the Forge to help set up for the day. (I daren’t include the part where Mummy knocked over our garden wall on her way off the drive….Calm down Joshy (if you are reading this) it was only with the wheel….no damage, well, to the Van, the wall was on its side, like a piece of lego! 

Anyway….Daddy walked us to the ponds after breakfast to see if we needed any help and me and Rory ended up sat on the entrance with Mummy collecting stall rent and diverting cars to their designated spot. Something tells me that we will be doing this for many more years to come.


We watched the Walk Tall dancers and had a go on the Mini Soft Play at the end when there was nobody else on it. We played with Princess Milton (2017) and Nannie Di bought us two giant inflatable hammers (standard fun fair behaviour). Mummy had hoped that we would walk at this years gala, we were standing and crawling, but hey…..we are still here and that is a massive milestone in itself, its easy to forget where we have come from.

Although having said that, for us, it isn’t easy to forget at all because we still have the daily battles, the hospital appointments, the realities. Day 3 of the holidays and we were right back in our second home. I (Austin) was having a scan at The Sheffield Children’s Hospital to check that I had two kidneys. Because we are identical twins and Rory only has one kidney, it made sense to check that I had two healthy ones….luckily it was just fine and so between us we have a spare.

The rest of the week we attacked the bucket list;

We visited the Wildlife Park again. This time we went in the Wallaby Walkthrough and took a picnic. Mummy made us wear our Mickey mouse hoodies that Auntie Mandy & Auntie Chloe bought us but we hated them. We felt ridiculous with big ears on our head. Some Turkeys were hanging around our picnic, screeching, Mummy was worried but me and Rory scared them off.


We took Daddy to Playmania for the first time. We had lots of fun in the ball pool and stayed later than we would normally because we had our tea there. Rebels!!


We also took Daddy to Music Bugs. Mummy booked us onto the Summer sessions because Mummy insisted that Daddy experienced the groups so that he knew what Mummy did with us, on her own. She wanted him to understand why she is so tired at the end of the days. We have never been to Music Bugs though and Mummy didn’t really know what to expect. She was disappointed because it wasn’t really anything like the groups that we normally go to. It was chaotic. A little boy kicked Rory for no reason, he was a bigger boy too because of the mixed ages with it being the holidays. Mummy thought that she might ‘lose her shizzle’ when she had thought ahead to moments like this but actually she was really laid back, she checked that Rory was ok and was really understanding. All children are still learning and i’m sure the little boy had his own reasons, besides, its not Mummys job to parent every child in the group, she can’t parent us some days, maybe the Teacher in Mummy is slowly becoming retired too. Or maybe she just has no energy left to adult!


We also went to Wigfield Farm. There were some big horses being mucked out and they were tethered to the fence outside of the stable, Daddy held us up close and I was a bit scared. Rory loves animals though and happily stroked the Horses face. A first!

On Saturday, we went to Matlock with Kerry, Tim and Jonah. We walked around Matlock Bath and went on some rides with Jonah. We went for some dinner at FCoffee and made lots of mess. Daddy had a huge Freakshake with Tim.  The staff were really accommodating making room for our double buggy, Jonahs pram and 3 high chairs. We really did take over the place. Afterwards we walked into Matlock and went to the park, except Jonah and I fell asleep and so Rory got a boat ride with Daddy and Tim…

The above picture is especially annoying for Mummy because Mummy decided that because Daddy was home and she had an extra pair of hands, she was going to hammer the healthy eating and gym time, because when Daddy is at work, she has less time and so she cracked on with healthy eating, and even found time for the gym on a night when we were asleep. Mummys friends said she is mad, when they are all sat with a cuppa getting ready for bed or watching soaps, she is going back out…


 

We went swimming at Mummy & Daddys Gym. This time, Daddy held Rory and walked the full length of the pool. It is only 4 ft deep all the way across and so he can go anywhere in the pool with Daddy holding him and making sure his trachy is clear of the water. It means we have so much fun chasing eachother around the pool and Rory doesn’t have to sit on the side feeling left out. We always get so much attention and lots of questions because of Rorys machine at the side of the pool and because I jump in and Rory doesn’t. Daddy let Rory jump in like me, but caught him before he went under. We had lots of fun. Mummy and Daddy are much more relaxed although still very risk averse because really, he shouldnt go in at all. At the end of swimming a lady came over and said hello, she follows the blog and wanted to meet us. We get this a lot. Hello to the lady from swimming. 🙂


To finish off our first week we walked to Elsecar Park with Beau to buy Ice Cream with the £2 that Grandad Malc gave us. Whilst we were at the park a storm came and everyone got really wet. We all huddled inside the cafe. We had lots of visitors too, Auntie Mandy, Auntie Chloe, uncle Craig, auntie vic, Uncle Pete & Sue Sue and both Nannie’s and Grandads.

Other pictures from Week 1:

We were unhelpfully helping Daddy fold the washing…


We were also helping ourselves to the content of the cupboard (yet Mummy still hasn’t caved and is sticking to her ‘no catches on cupboards’ plan)…


We got some new handles for our milk bottles so that we learned to feed ourselves milk in a morning in transition from bottle to cup…


Daddy read Tom Thumb to us (our choice) although it took him 4 sittings, we really enjoyed it…


Week 2

We had our development review with the Health Visitor. Mummy had already been tracking us against the milestones since 6 weeks. We get a yellow if we have done it once and then when Mummy is confident that we have done it at least 3 times, she makes the milestone green. Mummy knew that we were on track with our development but she wasn’t quite expecting the meeting that we had. All of Mummys friends spoke of an half an hour informal chat at home, maybe its because of our journey so far but we had over 2 hours in a conference room. At first we were fast asleep in the pram. The Health Visitor asked Mummy and Daddy lots of questions; how do you think you are doing? How are you? How do you feel about not going back to work? Would you stay at home Ashley? What routine are the boys in? What can they do independently? the list goes on….

Mummy and Daddy felt like they were in marriage counselling, especially when Mummy started saying how grateful she was for Daddy being so hands on and Daddy being put on the spot with questions about his feelings.

Eventually the questions turned onto me and Rory and we woke up and Mummy entertained us on the carpet with toys from the box. Although she carefully chose them because they needed a good dettol!

The Health Visitor said that she couldn’t believe how well we have done considering our start in life and that clearly it is mummy and daddys input that has enabled us to still meet milestones. She couldn’t believe that even Rory, who doesn’t have a voice, is on track with his communication milestones because he can do everything else that doesn’t require a voice.

Mummy and Daddy left feeling very proud of themselves and most importantly, of us.

The only things that we needed to achieve to have met 100% of milestones, was walking and three spoken words.

We spent 43% of our first year lay up in a hospital bed and so have had only half as much time as your average one year old to build gross motor skills in order to walk, and although Rory can’t physically say three words, I chose not to because sometimes, according to the grown ups, I get confused because Rory doesn’t speak, I don’t think I have to. Mummy was a little concerned about this but because we have met ALL OTHER milestones there isn’t a concern.

In the afternoon we had an appointment with Dr Raavi about Rorys trachy so I went to Nannies for the afternoon. Mummy and Daddy were on cloud 9 anyway because of everything we had achieved despite expectations but when they came out of the appointment with Rorys consultant, they were absolutely over the moon. In previous appointments with Raavi, Rory has been riddled with infection, and struggling with his breathing. He hasn’t had much of an air leak, if any at all and Dr Raavi’s opinion when we saw him last time alongside Dr Ugonna in Respiratory, was that Rory is one of the worst presenting trachy patients that they see at Sheffield and his stenosis was 74-99% close, and of the upper end, which means he is very very lucky to be with us. However, today….Rory was breathing fine, he was standing up, jumping on Daddy’s knee, active and not out of breath, he was smiling and not sleepy, he had no infection and had gone since April without a hospital admission, and just to be a complete show off, he shouted ‘Aaaa’ at Raavi, just like he did with Grandad on the video. He catwalked his air leak and Raavi had to pause and think. His plans for Rory had just changed dramatically. He looked at Mummy and Daddy and said ‘I think we can try and get that our next year’…….the shock was the only thing holding back their tears, they couldn’t believe it. But then the questions came…when, how, will he need a reconstruction, why the change of plan etc etc.

Raavi was impressed that he has stayed out of hospital for 4 months, he was impressed with his huge weight gain, he was impressed with his air leak and his energy, all good signs of a stronger windpipe. So the plan is, that in April next year, he will go to theatre and they will have a look at what is going on in his airway. Then they will make a decision, either to wait a bit longer, plan a reconstruction of his windpipe with his rib over the summer months, or if by some miracle he doesn’t need a reconstruction, plan a decannulation…..AKA take the trachy out. How exciting.

Mummy and Daddy were so proud of Rory. He just amazes them every day. He has overcome everything thrown at him so far. He smiles through every single day.

When we got him there was a huge rainbow…


Mummys friend Lucy came to visit the next day, she has a baby in her tummy. We can’t wait for him/her to arrive. Mummy was giving her the lowdown on parenthood. Rory took to Lucy and went to sleep on him and then I slept on Mummy, it was safe to say they were bossing it!


 After Lucy went, we drove to visit Auntie Chloe at her fun day at work. We met Toby Tyke and ate popcorn chicken. It was fun.


Mummy and Daddy had arranged with nannie & Grandad for them to look after us, one morning/afternoon/day a week during the holidays so that mummy and Daddy could have a bit of a rest and get jobs done around the house, especially if they are to survive another Winter and then the Spring/Summer in hospital with Rory. They hadn’t caught their wind back from a really tough first year and so it was important for them to catch up with themselves, its amazing they havent cracked under the pressure already. Mummy and Daddy say often that the outside world has no idea what they do day in day out caring for us with our medical challenges, never mind what they have been through so far, but how could anyone understand the emotional, physical, mental challenges if they haven’t gone through it themselves. Just one night in hospital is tiring, but to spend half of a year in hospital, and the other half sleeping for 4 hours at a time, suctioning Rory through the night…..and still facing every day with the energy of a CBBC presenter and a smile as wide as the Thames. Even they don’t know how they have done it. Mummy always says its because of how much they wanted us and how many times they nearly lost us, they treasure every moment, no matter how hard it is.

So….we went to visit Grandma Jean with Nannie & Grandad and we went to Elsecar Park on our trikes. Nannie & Grandad stuck to the routines and made sure that our sleep pattern wasn’t broken. We had lots of fun.  


Meanwhile, Mummy & daddy hit the gym and then went for lunch at Jamie Olivers in Leeds. Lots of Mummys friends have scoffed at her choice to spend the only child-free time they get in the gym, but actually, its a really good way to wind down and Mummy & Daddy both want to go, the fact is, the amount of time they get without us is so little that they have to do the things that they want to do be it gym, paint the garage, tidy the loft etc……and don’t have time to fit the luxurious stuff in aswell.


We went to the Forge Family Foundation ‘Walk on the wild side’ and Daddy met us there. Lots of our friends were there too, we had lots of fun testing out all of the different activities. Mummy laughed because Daddy took us straight to the activity that Mummy usually avoids, painting! Auntie Nat was there and Daddy said that he enjoyed watching us with our friends, even if it was chaotic. Mummys friend said that all of the other Mums were watching daddy and swooning over how good he was with us. I don’t think there was another man there, just lots and lots of mums.


We went Pram shopping because Mummy decided to sell our Bugaboo Donkey, we use our trikes lots now and only really need a little buggy and so off we went to test drive them at Babies R Us. Afterwards Mummy and Daddy took us for our first EVER McDonalds, and we are more real food than ever before…..what is it about mcDonalds that kids love?


It was also Noah & Ethans Party. They had the toddler zone that we had at our party. We had lots more fun now that we are a bit bigger. Daddy was chucking us down the slide. We had lots to eat, including a bun and then we were sick all over the toddler zone, multiple times. So many times that mummy ran out of baby wipes. The joys of acid reflux eh? Still struggle now, even though we are fully weaned. That is why Mummy gives us a dummy after food, but obviously we couldn’t have the dummy on the bouncing castle…..anyway….that is what we remember about Noah and Ethans party, but it was lots of fun.


We went swimming again and had a lovely walk to the park, we even visited Uncle Craig…


Other pictures from Week 2:

Standing up, having a conversation in our cots…


Mummy reading to us…


Visiting Mrs Hardy next door to Nannies (lots of Hardys where we live)..


Early morning walks…


family snuggles in bed…

Daddy love…

Stars of the day…

Our new Trikes to Nannies…

Grandad fun…


Week 3

We had a play date with our favourite twins, #awesomefoursome at the park. It was so much fun with Mummy and Liz. Noah & Ethan even pushed us on our trikes and we tried to play Pooh Sticks. We played on the band stand and Noah and Ethan tried to wake Shrek up (the door at the side of the band stand)….Mummy and Liz were in hysterics because they were trying to trick Noah & Ethan into thinking Shrek was banging back and despite Liz’s efforts, where she almost caused herself injury…..the boys sussed her out.  It was really funny.


We went to Eureka. It was so much fun, we can’t wait to go again….


Although on the way home we called in for a Pizza Hut. They only had one high chair free, so Daddy had to have Rory on his knee until one was free. #twinlife

Rory had another hospital appointment, this time with the Respiratory consultant. Auntie Chloe had booked the day off work, because this was just another one of those rubbish milestone / Armo anniversary days and unfortunately Mummy couldnt make the spa day as planned, because Rory had an appointment and it was an important one, So, to keep Auntie Chloe smiling, I went to visit her and even took her to Wentworth Farm Park. Shes a lucky girl!


Meanwhile, at the appointment, the consultant was super impressed with Rory and decided to take him off one of the antibiotics that he has. So now he has one antibiotic on a monday, wednesday and friday, all of the time. Its difficult because using antibiotics in this way can mean that your body becomes immune to the drugs, but actually, as Rory is so vulnerable to infections and suffers so greatly when he has them, it is worth the risk. So he has antibiotics all of the time to try and keep bugs at bay.


Another milestone, Mummy said it just felt like we were bish bash boshing away the negatives every minute…..

Nannie & Grandad had us again, only this time only for the morning because we had another appointment in the afternoon. Mummy and Daddy managed to persuade Nannie & Grandad to take us to music bugs, Grandad wasn’t really looking forward to it, but it turned out it was just his thing….


Again, Mummy & Daddy hit the gym and got jobs done whilst we were out with the grandparents. Whilst they were out, Daddies car said the engine was poorly and so he had to book it in the garage, Beau Jangles also had an appointment at the vets, there is always something to bring us right back down to earth.

In the afternoon a lady from Speech & Language came to assess us. She was following up a referral made by Sheffield Childrens Hospital in October last year, for feeding and communication. The lady watched us eat, play and communicate with eachother and with Mummy. She discharged us both for feeding and said that neither of us were a concern for communication, but that they will keep in touch and support with Makaton and any future support for Rory once his trachy (hopefully) is out.

She was very impressed with our telephone role play, our non-verbal communication cues, Mummy and Daddys pro-active attitude and how we already did lots of the things that they would usually suggest. We are well on our way as we are, Mummy and Daddy were again, super proud!

That night, Daddy went to the vets with Beau and whilst he was out, we were both really unsettled and so Mummy was struggling when he walked back in the door, he came straight upstairs and told Mummy that he had booked Beau in for an operation tomorrow because she needed some teeth out. Mummy panicked, besides the fact that Mummy hadn’t prepared herself, thought about giving Beau the care she needs whilst me and Rory are no doubt causing chaos and not even checking the ‘mummy diary’….Mummy insisted that we cancel and rearrange. So we did.

On the Friday, we had an appointment with the nurse for Nannie to do her final trachy change with Rory. We have a new nurse now. She apologised on behalf of the team for the lack of support we have had and the poor communication and the fact that it has taken the best part of a year to get nannie & grandad trained, resulting in Mummy designing and delivering her own training package and letting Nannie care for us ‘illegally’! Anyway……our nurse is really good, she was very helpful and has started the ball rolling for a care package / training for when we start nursery next September. That’s right!!! We are going to nursery next September. Mummy and Daddy spent ages researching nurserys, reading Ofsted reports, scouting websites and pictures and asking around. Fingers crossed we can get into the one we have chosen and they can accommodate us with Rorys medical needs.


SO…..Nannie & Grandad are now fully trained and signed off and can help look after us, Officially!! They have to be together for Rory-sitting because he needs 1:1 for his trachy cares and so it does limit the amount of time they can help, but still, every little helps.

Mummy and Daddy took us to Safari nights at the wildlife park, Auntie Chloe came too, it was so much fun. We sat outside in the sunshine watching the shows, visited all of the animals and then went to the main stage and sat out on a picnic blanket watching the acts singing and dancing. It was our first festival experience. Mummy and Daddy broke routine massively to take us, but it was a one off. We loved it, crawling around the field and dancing to the music. We were so dirty by the end of it. Mummy couldn’t wait to put us in the bath.


On Sunday we went to Locke Park Gala, we had another picnic and soaked up the gala atmosphere….mummy took this pic because it made her laugh. The realities of our family picnics….


And then it was Lexas party. It was so much fun playing with our friends. I couldn’t get enough of the water slide and the pool, Rory really wanted to join in too but he had to be careful. We are really lucky to have lots of friends already and we are only 1!


Other pictures from Week 3:

We did lots of playing with daddy and I got in a sticky situation…


Week 4

We went swimming again, I have become so confident that now, when Mummy or Daddy sit me on the side, I chuck myself in face first and i’m not scared.

We had our first trip to the dentist and went on the Rockin’ Horse that Mummy and Uncle Craig used to play on at the Dentist, it must be 30+ year old….


We drove down to visit Dez and our friends Paisley and Lenka, we also met Linda & Les (Dez’s Mum & Dad)…..shes an avid blog reader (Hi Linda) and couldn’t wait to meet us in real life. Mummy is really proud of Daddy and Dez because they are  such amazing Daddys, so hands on and genuine. Mummy said it was so nice seeing them all together. Nannie Newborough came for a quick visit too. We don’t see her and Grandad Malc very often and because they were going on holiday, it would have been 6 weeks since we  last saw them and so Daddy invited her over to Dez’s because she only lives around the corner. At first she said she was in her PJs and packing for her holiday, but she couldn’t resist for long so she came and had ten minutes with us which was nice, although we were having far too much fun in Paisley and Lenkas play room with all of their toys to even bat an eyelid. Daddy said Grandad Malc would be jealous that she had seen us without him.


On Wednesday Daddy took us out for the morning, all by himself. He does this lots and is really quite impressive, but this time he took us to Cortonwood to collect the giant tunnel he had pre-ordered without telling Mummy (who would have questioned where it was going to live in our house full of toys) and then he took us to Elsecar. We had a walk round the park, went on the swings, explored the Heritage Centre and he even went to see about booking onto the santa steam train for Christmas. Mummy nearly cried when he told her this….how thoughtful. Something so poignant of our local heritage, the steam train, and our first official santa meet, because last year we were too poorly and housebound, although we did meet santa at the mates of milton light switch on, we didnt really experience anything else ‘christmassy’. Daddy also took us to McDonalds for our dinner, all by himself, even Mummy wouldn’t challenge a double buggy, two high chairs, an happy meal and two hungry toddlers in the summer holidays, in McDonalds at Cortonwood. Brave, Brave Daddy!


Nannie & Grandad spent the day with us again, the third of the holidays, Mummy can’t even recall what we did this time, all they know is that we had lots of fun. It was, however, the day that Take a Break was published, the edition that we are in. Mummy had lots of messages from people who had spotted us in the magazine and the stats on the blog went up, lots of new people were reading about us.

Mummy isn’t a huge fan of the Take a Break write up but she couldn’t really turn down the opportunity. Even though she didn’t want to ‘sell our story’….she couldn’t turn down the significant payment as a donation for Jessops. She always said she would do anything for them and this is something massively out of mummys comfort zone……and she did it for them. Mummy found it interesting how the story changed though from the first writer, to the next editer and so on, all from the first initial interview. She wouldn’t do it again, Mummy likes to write herself and in a very different style.

We weren’t able to have a ‘family holiday’ per se this year because our health is still so up and down that we didn’t want to book anything huge in advance and of course we can’t really go far in case we need hospital treatment, I mean, can you remember when Mummy and Daddy took us to nannies caravan for the first time and Rory’s windpipe collapsed and he nearly died, well who would blame them if they never went on holiday again?? Anyway, Mummys friend Sara who she lived with at university, invited us all over to Wales. So as this would mark the first time that we have left the country, mummy dubbed this our summer holiday and we were all very excited. Initially the plan was to go Friday – Sunday, however Sara had to work and then Nannie had double booked and couldn’t Beau -sit, and Uncle Craig could only do Saturday and Sunday because of work, so Friday became household chore day and we were to set off on the Saturday for one night in Wales.

Mummy took us to do the shopping at Morrisons. We have done this a million times. Only this time, as soon as Mummy put us in the trolley we started to head butt eachother, bite eachother and generally just fight and cry. Mummy was left with no choice but to carry one of us and push the trolley with her one spare hand, obviously she had the dickiest trolley in the car park that didn’t go the way she wanted it to, and so she struggled her way around. Her arm and back got really tired so in the end she put Rory in the trolley itself with the shopping, but that didn’t end well either, she professed to NEVER tackle Morrisons on her own again!

Mummy spent the afternoon packing all of our things (for one night)….she text Sara and warned that we might need a trailer or even an HGV, the amount of stuff to pack for one baby is ridiculous, never mind two, and all of the medical equipment.

When Saturday came, we packed up the car and set off super early on our adventure. almost 4 hours of travelling in the car, with a short stop off at the services. Wales proved to be no different to England, we still got stopped by 3 separate people in the services and we were only in there for 15 minutes.


The drive to Anglesey was so beautiful. We went in lots of tunnels and drove the coastal road for ages. Mummy said that we would like it more when we were bigger, it would feel like a real adventure. When we arrived at Sarah & Rich’s house, we were greeted with super smiley faces at the door, including Sara’s Mum who was ecstatic to meet us in real life.

Sara & Rich have worked extremely hard for a long long time rennovating their house. It was a chapel and a school house and they have created the most astonishing home from the two. The original features are many but the finish is just impeccable. We were all so impressed. So well thought out, so homely, so charismatic. We met Wil, their puppy, he was lots of fun but he went on holiday too because us two and Wil was just far too much for the grown ups to handle.

Mummy made a ‘things from Yorkshire’ hamper and when we arrived Sara & Rich fed us welshcakes and tea before we put our things in one of the guest rooms and set off on our first adventure.

They took us to a little pub for lunch (where we made lots of mess throwing our food on the floor – standard A&R behaviour) and we went to Beaumaris, which was one of the cutest places we have visited. We went to the castle to fight the dragons…

Rory ate muck!

That about sums up our visit. The pictures say far more than words ever could.

We had ice cream too…

We went back home and Rich & Sara made the most delicious meal. We had a Beef Dinner (including Yorkshire Puddings) and then Sara’s Mum baked us chocolate cake and we had pink custard too. Mummy has been dreaming of this moment since sara’s mummy made a victoria sponge for Sara to bring back to uni back in 2009.

We had a bath but we didn’t want to go to sleep. Mummy and Daddy tried everything. In the end we joined them for dinner at their beautifully laid table. We ate all sorts of food (Mummy kept feeding us to that we were good whilst the grown ups ate) and I was sick, ALL. OVER. SARA’s. TABLECLOTH!

 

NO WORDS!!!!!

 

Anyway, after dinner Mummy and Daddy decided to take us out in the car because it really had got that bad. Sara lives about a two minute drive from the beach so we drove down the winding road and found the beach, we drove onto the edge of the beach with the headlights shining over the sea and watched the waves crashing for a moment. We were fast asleep by this point so Mummy and Daddy enjoyed a moment before driving back home.

When we pulled up on the swishy drive Mummy had to task of getting us out of the car seat and into our beds without waking us, she did it one at a time and managed to get us down. Eventually Mummy and Daddy managed to sit down with a cup of tea and chat quietly with the grown ups. Mummy said that she really enjoyed chatting with Sara and Rich, they were great company and fantastic hosts, Mummy and Daddy felt really bad that they abandoned them as soon as they had been fed and not really helped clear up and so she insisted on mopping Sara’s dining room floor.

The following day, we woke up really early, well, to be honest we didn’t get much sleep at all, we ended up with 4 of us in the bed. We were really unsettled. Maybe the new environment, I was a little snotty but we had been outdoors all day and I do get a bit hayfevery. Mummy and Daddy snook us into the living room and we played quietly until Sara & Rich woke up.

Rich made us the most amazing breakfast and then we all ran off again to have a nap in the car!

Sara & Rich took us on a whistle stop tour. We went to a lighthouse with breathtaking views, we walked the cliff steps and played on the park. We went to the Beach and had our lunch by the sea and then we went to a place with a super long name and into a shopping centre where there were lots of welsh things. We were absolutely shattered and I was super snotty and so we thanked Sara & Rich for everything and set off on our way……they sent us home with two little Sheep gifts too, how thoughtful.

The car journey back was super long and not quite as exciting, we called off for a McDonalds on the way home to keep us happy…. here are pictures from Wales…

Beau had fun at Uncle Craig’s too…


Other pictures from Week 4:

Messy food resulting in Austin having a bath…


Thanks again to Blake, Kirah & Bobby who got in touch with Mummy and wanted to raise some Money for Mr Hardy’s (Our Grandad who teaches them PE) Grandsons Hospital….


Week 5 & 6

So it turned out that we had caught a cold. Both of us woke up poorly. The following days were spent in the house, we had to clear the diary completely and stay home. Mummy and Daddy were suctioning Rory lots and both of our breathing was poor. Mummy was back to monitoring our breaths per minute and watching our chest struggling for every breath. She was back to syringing milk and water into our mouths to keep us hydrated. They were back to suctioning Rory through the night and therefore having very little sleep. In fact all 5 of us, Beau included were camping out in Mummy & Daddys room because that is the only way anyone got any rest, all huddled together, Mummy & Austin on the camp bed and Daddy & Rory in Mummy & Daddys bed.

Mummy probably won’t be able to re-create the tough times in words so that you can imagine it because she still hasn’t got her wind back to find the energy to write it, but in short, Mummy rang the respiratory team at the Sheffield Children’s Hospital and a decision was made for Rory to go in and get tested because if it was a bacterial infection then he could have more / different antibiotics to the ones he takes every day. However, if we can confirm that it is viral, then we know it is a case of monitoring breathing and going in for oxygen if we need it.

Mummy and Daddy were so deflated. We had done so well. So. So. Well! Everyone was away, Grandparents, Uncles, Aunties, Godparents, literally everyone who could help was on holiday or otherwise engaged. Mummy & Daddy were well and truly exhausted. Our breathing became a worry and the Consultant advised that we went to the hospital for oxygen, however…the tired, limp, out of puff Rory came to life when Grandad walked through the door. Mummy and Daddy had packed for a few nights in the hospital and all of sudden questionned if they even needed to go. They decided they would see what the night was like, however Rory soon tired again. The following day the Drs rang to say that the test results showed positive for RSV.

RSV is basically just a cold, but a certain strain of it. It is highly dangerous to babies like us who have Chronic Lung Disease and often need oxygen anyway when we are poorly. Last year in the winter, we received funding for injections which didn’t prevent or cure (because there is no such thing) RSV but it meant that if we caught it, we were less likely to end up on the ventilator. However, as you know if you have read previous blogs, we still ended up in hospital. Following on, this year, our plan was to hide from bugs again between September and March, even though we don’t have the funding again for the injections, we are still extremely vulnerable, but all is irrelevant really because we caught it in AUGUST!!

By the time we got the test results back, we were on the up with our breathing and didn’t need to go to hospital, and so Mummy & Daddy took the results and were shocked. really shocked! Had their 26 week, less than a kilo, little fighters managed to fight off RSV with no Palvizimab and no oxygen. WHAT A MILESTONE!! However, due to being poorly, our routines were completely out, we were still not feeding properly, or sleeping and so Mummy & daddy were completely on their knees.

Mummy couldn’t see the light at the end of the tunnel. She sees all of her friends with their children, enjoying sleepovers at Nannies, weekends away, holidays….Mummy felt like she couldn’t manage another day, and the big black cloud called September was just too much to handle. It was hard enough facing the last week of the holidays on our knees when Mummy had hoped to feel rested, having had Daddy home and lots of family time, but she was facing an 8 week term without Daddy, looking after us by herself when we are so much bigger now, so much more demanding and also, facing the winter months where we will no doubt be poorly and if this nightmare fortnight taught us anything, it taught us that when we are poorly, it is still as scary, still as serious and still as important to have Daddy home with us.So…Mummy literally was close to the edge. There were many tears and many conversations. Daddy offered to quit his job so that Mummy could go to work and he would stay at home for a while. Mummy said that she didn’t even want to go back to work yet, she needed a rest. The thing is, Daddy needed a rest too and both Mummy and Daddy acknowledged this, except this time Mummy had nothing left to give. Luckily Daddy found it from somewhere and held us all together long enough for Mummy to come back fighting and taking control of the situation.

Mummy cancelled EVERYTHING. She said we needed to get our house in order and get rested before Daddy went back to work. She was taking control!

We were even supposed to be going to the caravan with Kerry, Tim and Jonah but Mummy decided that as much as she didn’t want to let them down, our priorities were getting our routines back and getting some ‘me’ time and rest for mummy and daddy. So that is what they did.

Beau had a hair cut.

We did lots of sleeping on Mummy & Daddy.


Eventually the black cloud began to lift and we eased our way back into the world. We had two baby classes booked in on the Thursday, Mummy cancelled the morning one but Mummy felt that we had perked up enough to go to Hartbeeps in the afternoon and Daddy came along. We all (including Daddy) loved it…


We had a ‘dog day’ because Beau Jangles was going to be put to sleep to have 9 teeth out and so we had a day in the garden playing with Beau and a lovely picnic. We are so lucky to have such a big garden that if we picnic at the bottom, nobody can actually see us and we could be anywhere, it was like a little adventure…except because we are ‘toddlers’ now we are so much more mischievous and really enjoyed eating stones and crawling up concrete.

We drove to the caravan for a few hours with Nannie and grandad, went on their boat…


We had a morning at The Painted Teapot Dronfield. Mummys Twin-Teacher friend bought us a gift voucher, so along we went. Mummy thought it might take ten minutes, if that, because we weren’t quite ready for painting with a brush and the plan she had was to make a dog bowl for Beau Jangles and to use our hands and feet. However, almost 3 hours later, we were finally on our way home. We had lots of fun, Mummy and Daddy too….


On the way home we called for a carvery and I fell asleep, so Rory sat in a highchair, Mummy held me whilst i was sleeping and Daddy had his carvery and then we swapped and Mummy had her carvery. Just another example of our crazy twin life.


So, for above a month now we have both been doing our ‘first steps’, Mummy and Daddy discussed if this should be a ‘woohoo we have two walkers’ moment, however we both still prefer to crawl, we get up and walk, and then sit down, million of times a day, we manage the full length of the kitchen when we need to but Mummy says we are lazy and too clever, because we have realised that it is much quicker to crawl.

Here are some pics of us on our feet, Mummy bought us lots of toys to help us but we have only just started playing with them when we can walk on our own already, Mummy and Daddy don’t understand us sometimes.

​


We’ve learnt how to climb too. We climb the stairs to bed every night…


We went to the wildlife park with Louie & Jake…


Mummy & Daddy took us to Morrisons. This was the straw that broke the camels back…

Mummy thought it would be ok because Daddy came with us, how wrong was she. We went for something to eat first. We had some snacks whilst we were waiting for our food, but it took ages and all of the snacks ran out and so we were getting bored.

There were a few old dears sat on the table next to us and they were smiling and coo-ing at us, giving us the attention we needed to just flick our switch and turn our mischief on! So, because we had an audience, we gave eachother the nod (we really did, Mummy and Daddy looked at eachother and thought…shizzle my timbers, shiz is going down in Morro’s) We began launching our water bottles down the aisle of morrisons cafe, the old people were ‘oooh’ ‘little monkey’ ‘aww bless them’ giving us the attention, so Mummy and Daddy (after picking it up a million times) took it off us. So we had a paddy. All of the Mummy & daddy’s behaviour training, understanding of the principles underpinning this situation….went out of the window. Our paddy had an audience. we were thriving. Mummy (rolling of eyes) gave us the water bottles back. no prizes for guessing what we did next…..threw the water bottles across the cafe. again. Twins 1423424 –  Parents 0!

Then the food came…..we swished our arms across the table like a roadsweeper….over and over. Food everywhere. We were giggling as we did it. Mummy and Daddy hung their heads in shame. Oh. My. Days.

There has only every been one child that Mummy has struggled in her many years of working with children and young people, across many challenging communities. She has always had a very strong behaviour management skill. Some of the children Mummy has managed to work with harmoniously, have been extremely challenging…..and we are absolutely walking all over her. She is baffled.

So Mummy and daddy ate their food as quick as possible before dashing for the trolley to putting us in it and scurrying off to do the shop. IF ONLY!! Twin 1 in trolley. No problem. Twin 2 in trolley…..hair pulling, headbutting, kicking, biting…..OKAAAAY then!! So Daddy carries Austin and Mummy pushes Rory. Except, I didn’t want to be carried. I arched my back and kicked my legs and Daddy struggled on with me, whinging and screeching and alerting everyone in Morrisons that my parents were the worst parents in the world and I was not happy with life. Mummy and Daddy gave me bits of shopping to hold to divert my attention and it made me really happy to launch it down the aisle. Daddy put me on the floor to walk at one point and I chucked myself on the floor before attempting to help myself to the contents of Morrisons. We were only on aisle 3 when Mummy & Daddy laughed hysterically (rather than crying) with Daddy stating that he had ‘had enough’ and Mummy not being able to hold back ‘Imagine, I did this on my own last week’ and then trying the….’come on, at least we are doing it together’…..Mummy & Daddy even put me on the Peppa Pig ride…..even though Mummy and Daddy both know that this is rewarding my rubbish attitude towards shopping in morrisons.


Parenting hey…….who knew it would be so challenging.

Rory summed it up….


The next day, Beau went down for her op and we went to visit Mummys work friends Ami & Claire and Ami’s Baby Josko. Claire bought us a giant bag of Quavers and some giant chocolate buttons. Heaven!! 3 adult teachers and we ran rings around them all…


In the afternoon we went to the park with Daddy for a picnic, yet no sooner had we ordered out food from the cafe and set up our blankets that the rain came, so we turned it into a car picnic…


On Thursday, Rory stopped at Nannies for the first time. This was such a big deal because caring for Rory through the night is very different to caring for him through the day. It is such a big responsibility. Auntie Mandy & Auntie Chloe offered to have me on the same night so that Mummy & Daddy could have their first child free night since we were born 17 months ago.

This was really hard for Mummy. She knew how desperately Mummy & Daddy needed the rest but equally, she found it hard to give up her responsibilities. It wasn’t that she found it hard leaving us in the way that normal mummys would, she had to leave us every day for 99 days when we were born, but it was feeling guilty for letting someone else look after us whilst Mummy and Daddy had a nice meal at Prezzo and an early night. Everyone told Mummy and Daddy that it was well deserved and their friends said they don’t know how they have gone this long, they have at least one night a week off to recharge. It did Mummy and Daddy the world of good and Nannie said that she found caring for Rory scary, but that she would quite happily do it again. I kept Auntie Chloe and Auntie Mandy up, so in the end I shared Auntie Mandys bed and I think she secretly liked my cuddles, especially when I woke up in the morning and gave her a huge smile.

Here are the pics sent to mummy and daddy…


Just that one night of sleep and being able to get on top of things meant that Mummy was confident that she could face life again and WIN!

The next day we had a day at the park with Dez, Paisley and Lenka. Paisley was showing us how to keep the grown ups on their toes running around the park. Mummy says that Uncle Dez is like Daddy, he is a really good Dad. Very hands on. Quite easily parents a 1 year old and a baby on his own, days out, nights in. We are very lucky to have such amazing Daddys.


We finished the school holidays off with a visit to Elsecar by the Sea. We know how lucky we are to have so many lovely things on our doorstep, but there is a great sense of community too with lots of galas and events. We saw lots of our friends and had a really good time….

 

Daddy bought us some Rugby Posts….

He’s also been teaching us press ups and planks…


Sunday came, our very last day. Mummy was in a really bad mood because this big black cloud called Monday was hanging over her head and she really didn’t know how she was going to do it. We went to jaylah’s naming ceremony, except because we were asleep in our new routine, we didn’t made the ceremony. We had fun at the party afterwards though…

 

Typical family photo! Never looking same way…


And then Nannie & Grandad visited…

 

So in short, we had a fantastic 4 weeks, with a difficult 10 days yet pulling it back at the end, to face another winter, another stint of Mondays to Fridays were Mummy is flying solo except this time, she will be pulling her hair out.

Mummy posted this because this extra long blog took forever to write….



Mummy didn’t know at the time of writing that post but when she came in to suction Rory she found this in our light box…

Positive thoughts!! Here are some of us smiling to end…


 

 

 

 

 

 

 

 

 

 

 

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