Where does the time go?

A month since our last diary blog, a whirlwind of emotions, some really really tough times for Mummy & Daddy and some really cool memories too.

March 7th – April 7th 2018!

We began to see the world with fresh eyes. The sun shining and March arrived – we are no longer held back by damp weather, winter bugs and chronic lung disease rules. Well – not all the time, we do have some rubbish weather still, but in the grand scheme of things, the world looks brighter outside.

Mothers day – no fancy gifts, a home made card which was a fundraiser for Sheffield Children’s Hospital and a trip to the seaside. We had a great time running up and down the beach, we can’t wait until the weather is better and we can enjoy the beach properly. And even more so when my trachy has hopefully gone and we don’t have to worry about the risks.

We also called in to see Auntie Claire and Uncle Kieran. They held a little tea party for all of the mums in their family, we saw Nannie Newbs and Great Nannie T. We ran around and around and tied everyone in knots.

Auntie Lynn, Auntie Joy and Lyndsey visited. They brought us lots of chocolate for Easter and fed us some too. It was really nice to have them all round playing with us in our playroom.

Mummy bought us some water drawing mats because she was worried about how much crayon and paint we were trying to eat. It didn’t really work for her, because we just sucked the water out of the pens instead..

Uncle Craig came to visit and we had a walk to the park…

I found lots of new places to climb…

We visited Bunnings with Daddy and found a space perfect for us on the shelf…

We called into to Nannies for a quick cuppa and did some playing…

Nannie and Grandad came to play with us too, and Mummy was talking about a game she used to play called Frenchie, Daddy had never heard of it so Mummy grabbed some tights, tied them together and started playing Frenchie with Nannie, we even joined in. We all had a giggle.

Mummy and Nannie took us to Clever Tots, Mummy is really eager to get out and about with us now, but finds it really difficult on her own because we are so mobile and so unsocialised, and not used to staying close, keeping ourselves relatively safe, we are so used to having our playroom as our safe place. We had our dinner and played and had lots of fun, we especially enjoyed the sensory room…

Austin learned to take his trousers off all on his own. Daddy says he can’t wait until we decide to do this in the middle of tesco. I have begun to know when I am having a wee, Mummy says that these are the beginning signs that we are getting ready for potty training. Mummy is NOT looking forward to this, especially when she witnessed her friend go through this with our twin friends. It wasn’t easy, in fact it tipped mummys friend over the edge.

We had a big change to our bath time. I have always had a special seat because having a bath is literally a threat to my life. It is so important that I don’t get water near my trachy and stoma site. Having the chair was always a safety measure, except I had massively out grown it and had to be squeezed in every night. Mummy and Daddy bought a mat and tried to teach me how to sit still safely, except I was so excited to be free. Mummy literally cannot cope with the risk, and so daddy holds me the whole time. Bath time has ALWAYS been a two man job but now more than ever. Mummy says my face when I got in the bath without the seat was priceless and Austin loved it too.

We had a play date with our friend Louie at his new house. We had so much fun playing with his new toys, checking out his big boy bed and eating hobnobs with Peppa…

Mummy & Daddy decided that whilst Daddy was home they would try to do all of the things that Mummy struggles to do with us when she is on her own. We did some painting – except actually, I ate the paint, Austin found it more entertaining to climb on the easel and Daddy got really stressed. Mummy says that even though daddy is the most hands on Daddy she knows, and does equal jobs to Mummy when she is home, now he is trying groups and painting etc, he is beginning to know the challenges Mummy has attempted all by herself. After painting we did sand, and Voile…Austin made a chair…

Mummy then read my favourite book but hid the animals in the tuff tray and eventually, with lots of patience, we managed to find some of them…

We did a sock sorting tray with Austins favourite book Socks.

Then we had our diggers in it…

There is something about putting our toys in the tuff tray that makes them more exciting than just having them on the playroom floor.

Mummy & Daddy took us to Play Valley. Daddy finished his job early so we were able to have an hour before the after school kids arrived. We had so much fun. We learned new things too…

Mummy took us both to Baby Buddies again, on her own. It was mental.  We are both very different and like to run around trying all of the different toys, but don’t operate together, we split up, so Mummy is torn between two sides of the room. She struggled to suction me and so held a rice cake between her teeth, which meant we both stood there trying to steal it out of her mouth. Whilst she was stood there with the rice cake between her teeth, she was able to suction Rory. Whenever Mummy & Daddy take us out and I need suctioning, they say it literally is a 3 man job and can understand why the community nurse team offer a carer. But instead, they struggle on. Mummy lasted an hour and then we were ready to go.

It was our hospital room and fellow preemie friend Louie’s birthday so we visited him…

Daddys new business has took off to a flying start, so much so that it hasn’t really worked out how Mummy & daddy planned because he is super busy and at home possibly less than he was working at school. Daddy says that he can’t turn work away when he is trying to get his business up and running, and rightly so, but mummy has found it harder than ever and so even though they have managed a few hours here and there of an afternoon when he has finished jobs slightly early, they have decided to book some time out in April for birthday celebrations, long weekends away and certain groups that Mummy thinks we would benefit from. And they have started to see the benefit of this, except the jobs are still coming in and Daddy is still squeezing them in. He even had to take Grandad Hardy to work two days to help him get the jobs done.

It is all great fun though and he really is loving it. It can only get easier. As with everything new it takes time to settle in.

Mummy & daddy took us to a new group at Hoyland Common, it was fun. Austin enjoyed playing with the sand and a little dolly with no clothes on and I liked playing with the bricks and books. We both painted an Easter egg and Grandad came to peek because we were only 3 rooms away from his office at work. He was teaching in the afternoon but managed to come and peek, he said that he and some of the ladies he works with were watching us and laughing at us been the only kids not sat down at storytime and Mummy and Daddy run ragged. It was a much smaller room than the usual baby group we go to and it was still a challenge, Daddy said that he has no idea how or why Mummy would tackle this alone, but what choice did she ever have? Mummy is stubborn and holding on to her independence as long as possible.

We had some Easter fun.

Mummy and Daddy struggled to make an easter bonnet, even with superglue from the garage, nothing would stick. So Daddy had an ingenius idea..

And we went to the Easter Party with all of our playgroup friends…I didn’t like the singing at the end!

We went to Pizza Hut with Auntie Vic and Uncle Nath to wish them on their merry way to celebrate their birthdays in mexico and although we didn’t know, get engaged…..woooo!!!

We had another trip to the seaside. We had an absolutely awesome day, we played football with a bigger boy and we dipped our toes in the sea for the first time. We spent the full two hours that we were there on the sand and we absolutely loved it. Mummy and Daddy were totally blown away by the memories made, in the really tough times, Daddy said it was hard to imagine there would ever be times as good as this, when we are in our little bubble and loving life! Obviously it is a risky place for me, I shouldn’t really be around dry sand, so we had to find a spot where the sand was dry enough to play with, but still damp so that it was less risky around my stoma. We also had to be careful near the sea in case I was splashed or fell in. Mummy and Daddy are really good at managing the risks though, I think when I am old enough to realise, I will be really grateful for having a Mummy and Daddy who have embraced trachy life and not allowed it to stop me doing things.

Mummy caught me trying to attach a catheter to the end of the suction machine. I see them doing it all of the time and thought I would have a go and try to help.

Mummy got poorly with a really awful gastro bug, she was in lots of pain with her tummy and spent a day in bed, Daddy got it next. Nannie and Uncle Craig came round to help though, and then we were a little off  and we were sick too, but we managed just fine.

Mummy and Daddy found this week very hard, they were already rock bottom, arranged a sleepover at Nannies three weeks ago and it was cancelled, firstly because Nannie & Grandad went to open the caravan up with good weather arriving, and secondly because we were ill. By the second day Mummy & Daddy caved. They couldn’t cope any more, and so we went to Nannie & grandads for the night but Mummy and Daddy put us to sleep, they were litrally just at home, and they picked us up early morning. It was fine and Mummy and Daddy got some rest. Daddy said for the first time ever how hard trach-life is. It is harder than hard. Yet there is no other option than to just survive. And so that is what happens, Mummy might not text her friends back, they might not have a social life or be thinking ahead more than tomorrow, Mummy may not be as organised or thoughtful as she used to be, because she just doesn’t have the time or the energy. Caring for a trachy child is difficult alone, but to have an equally as challenging child of the same age as well, with little helping hands around, life is extremely difficult at times.

So much so that on one particular day that week they couldn’t handle it any more, put  us in the car and drove. They drove and drove and drove, we were quiet in the back, content with watching the world out of the window, and then snoozing, Mummy & Daddy had a sneaky KFC and Greggs meal deal and talked about how they were going to tackle the future, what changes they needed to make and why they were struggling so much in the first place. It is safe to say that when they returned from the long car journey, they had a plan, we’d had a nap, Mummy and Daddy had been fed and we faced an afternoon with less stress and lots of positive thoughts for the future!

Easter came, and mirrored the above thoughts. Mummy didn’t buy us eggs, arrange a treasure hunt, decorate the house, she didn’t do anything actually, Easter was just another day, yes she felt guilty, but in the grand scheme of things, we were all alive and well and that is all that matters and Easter isn’t really about chocolate eggs and bunny rabbits, it is about a celebration of life (in an abstract sense) and so Mum just kept us all alive and survived the day. We did however eat chocolate that other people had bought for us (and the grown ups helped a little).

We were so fed up of being stuck in over Easter because of the weather that we managed a quick farm trip..

Mummy caught Austin having a poo in the tipi with his book…

Our friend Frankie visited…

I had a consultant appointment to review my respiratory distress issues. It wasn’t my usual consultant, it was a new one, except he wasn’t new at all, he helped to fix me when I was extremely poorly over a year ago, Mummy and Daddy really rated him and it was great to see him in his new consultant role, another Dr that we trust completely looking after me. He couldn’t believe how well I had done and even joked about the trachy coming out – thats got to be a good sign hasn’t it?

We had a walk to the park with Auntie Nat Nat…

We also took our car to the park with daddy…

Ad then this happened 🙊

Mummy and Daddy had a crazy plan to drive to Wales for Sara’s surprise 30th Party, the day before our party. We had to wear ridiculous costumes and sit in the car for a very long time (Mummy got us TVs for the car with DVD) and watch Peppa on repeat, the whole way! We coped really well with the change of routine and had the time of our lives playing with Wil & Louie (dogs) and schmoozing the other guests at sara’s parents house.

Sara’s Mum Ann struck a deal with Mummy. Mummy was going to bake our cake Saturday, the day before our party but we wouldn’t be home until late and so Ann baked the cake and Mummy just had to decorate it when we got home. She was up until 1am making buns and cakes for our party…

Our party was great. It was construction themed. We had so much fun being independent, wandering around and exploring. We especially loved being able to help ourselves to the buffet table, again and again and again. It was great to see all of our friends and family, we love having one big party with everyone together, even if it is a little crazy. Here are the pictures…

We had lots of fun opening our presents which we saved until our actual birthday. Thank you to everyone for all of your cards and gifts, we really do appreciate each and every one of them…

Unfortunately we were poorly on our birthday and it was a little bit worse than the last few colds we have had, it began to affect our breathing. Mummy had the monitors out and was watching us suck in with each breath. Daddy stayed up with me (i’m a daddy’s boy when i’m poorly) and suctioned me 42 times throughout my 11 hour sleep. Safe to say, he didn’t actually get any sleep himself. Luckily our birthday was the worst day and today, Nannies birthday, we were feeling much better by the afternoon, and so we went out for a Frankie and Bennys (later than our bed time – Mummy and Daddy thought sod it for once) and we had fun….

Tomorrow (13.4.18) is a really big day and Mummy awaits with baited breath to blog about it!


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