Poker Face

Exactly a year today, Mummy published a Facebook post to let family and friends know that I, Rory George, had managed to wake up and be taken off the ventilator after a very trying couple of months. I don’t know how well-read you are with regards to the past 18 months, but a general cold that Daddy brought home from school resulted in both me been ventilated and Austin back on oxygen, with me gaining my tracheotomy and a roller coaster ride every since.

Its difficult. We look so well on the outside. Inside we are still those super fragile premature twins who battled every odd to be here. Whilst on the inside of our family life, those close see how this is still a huge reminder every day, with every medical procedure, each and every anti-bac bottle littered around our home, Mummys raw hands from the chemical burns from the constant cleaning, Daddys nightmares and the guilt Mum will ALWAYS feel for not cooking us long enough! Yet it is really only when we are poorly that we are both grateful for the good stretch that we have had yet in awe of how the hell we all managed to live like this, for so long last year, managing 4 days at a time at home before hospital for the entire winter. Last week we were poorly, just a cold, but it took us right back to this time last year, its like we forgot how bad the bad times were, yet actually when we are in the thick of it, we forget the good times and it feels like it has always been this way.

Lets paint a picture. When we have a cold this effects us hugely. We don’t have the same immune system as other kids our age, for two reasons; 1) we were born immuno-compromised, we didn’t have the right make-up in our blood. that part of us wasn’t developed when we were born. 2) because of number 1, we haven’t mixed with other kids to build up the immune system that we should have at this point. So we spend most of our life avoiding bugs and missing out on life in general, sad, but a common cold can become a life threatening issue for us, take this time last year on the ventilator, for example.

When we have a cold, it affects us massively. Our major organs weren’t developed fully when we were born either, and we both have chronic lung disease, once we have a cold, we very quickly struggle to breathe, we show respiratory distress, sucking in as we gasp for air and nodding as our body is working hard. Mummy and Daddy have to check on our oxygen saturations because we very quickly become oxygen dependant. None of this takes into consideration that my tracheostomy bypasses my nose and so i don’t get a runny nose (although I did a bit this time and Mummy got excited about it) and instead I get increased secretions from my tracheostomy and Mummy and Daddy need to suction me 90-120 times per 24 hour period. Which averages out at every 12 – 17 minutes, which also means a trained adult has to be with me 24 hours a day, awake, so that they can keep my airway clear and suction me through the night. As you can imagine, this keeps me awake and often Austin awake too because of the noise. It also causes Beau jangles great stress, and yesterday she had a fit. Just a cold can have a huge impact on our family. We become a family of 5 sleeping in one room, across Mummy & Daddys bed and the sofa bed, surrounded by medical equipment, white noise and subsequently two very tired, worn out, sleep deprived, worried, anxious parents who because are run down, catch the cold themselves.

So, it has been, a VERY difficult week, all hands on deck to keep us out of hospital, but we have managed it. We have managed it because we are getting stronger, and Mummy and Daddy have the right attitude and experience and medical equipment to manage it at home until we get serious and need support with oxygen and IV lines.

We haven’t blogged for a whole, since the 22nd October actually. So what did we get up to before we got ill? We had lots of cancelled plans because other people were ill and we didn’t want to catch their colds. Ironic.

We had a full week at home playing…


aside from a pram walk around newmillerdam with Oscar and his Mummy…

Daddy brought us home two plastic builders helmets, we had crazy fun with them…

We attempted a cute Birthday message for great Uncle Peters 50th…

Mummy became concerned that we have been feeding carrots to the horses far too often, because she caught us feeding eachother…


We went to have a ‘Selfie with a Soldier’….and captured some hilarious pictures of Mummy completely failing at parenting…

Daddy went out with his friends back home where he grew up and so we went to the Wildlife Park with Auntie Chloe & Auntie Mandy…

then had a cheeky McDs with Uncle Craig…

Then Mummy trimmed up for Halloween. She had us some t-shirts made, tribute to the trach-life we live…


Auntie Chloe stayed the night so that Mummy didn’t have to spend the night on her own. Its a well-known fact that Auntie Chloe likes her sleep, she didn’t like the 5:30 wake up call because of the clock changes…

We got our new pram. We absolutely hate being in a pram these days, we like to walk but it is impossible for Mummy to do on her own, so Mummy thought that a different pram might help, here we are in our new wheels…

Mummy had a spa day with Auntie Chloe, just what mummy needed after about 6 months without ANY time for herself. it was Mummys birthday present from Auntie Chloe and she only just managed to fit in time to go…


Auntie Vicky visited…


Mummy attempted the #bumpkin photo, think the pictures alone tell you how difficult it was to get us both to stand still….


We went to Blackpool for the illuminations. I could write a blog alone about that. Especially living in the upstairs of a backstreet B&B with twins and a double buggy. Trying to child-proof everything. We had towels draped over the front of cupboards to divert our attention from opening and closing everything and trapping our fingers amongst many other random DIY child-proofing techniques that Mummy & Daddy adopted, including parking the pram up the side of the bed as a bed-guard. The things you do eh? We survived. 



Nannie & Grandad had us both all day and night for the FIRST time, at 18 months old. Only the second time we have both stayed out. They took us to the park, we played a wierd game where Nannie let us put kitchen utensils on our head and Nannie showed how little she knows about Toy Story…


We went shopping for new coats and Mummy finally let us have something different, although we have worn them once and it already drives her mad that people now ask if we are twins!


Mummy FINALLY attempted the obligatory spag bol weaning photo, about a year too late, she couldn’t handle the mess but finally allowed it. It wasn’t that bad really….

We got new socks and pulling eachothers off was so entertaining…

Auntie Chloes 30th Birthday/ Neurocare TEAMDEAN Charity Ball finally came around. So that Mummy and Daddy could go, they had a plan. They hired a hotel room at the same venue as the party so that they could put us to bed and Auntie Vicky & Uncle Nath could watch us whilst Mummy & Daddy were downstairs at the ball and could pop up and check on us, or run up if there was a problem. Auntie Chloe arranged for a meal to be sent to the room for auntie Vic & Uncle Nath and they sat in silence, in the almost dark room proving what amazing friends they are to Mummy & daddy, doing this so that they could celebrate Auntie Chloes 30th in honour of the legend that was Dean Armitage, and raise some money for the Neurocare charity.

So that Mummy and Daddy could guarentee we would be asleep for 6, so they had 30 minutes to get ready before the ball started at 630, they took us all to the hotel early and had to somehow entertain us. We helped Auntie Chloe and the team as they were setting up, we had dinner at the resteraunt, and drinks and snacks later on, it was a battle because there was only one spare high chair, we attempted to chill out in the ‘again DIY child-proofed hotel room’ and when things became really bad, they broke every rule in the book, anti-bac’d our hands and took us in the soft play (for less than 10 minutes) because it was germ-infested. visibly. So, here is Mummy, with a full-face of make-up and her hair up ready for the ball, in the soft play…

Comedy moment. Girl (clearly over the age of two, but in the 0-2 soft play area) says to Mummy ‘i’m 6 you know, I shouldn’t be in here’ Mummy said ‘thats right’….meanwhile Austin is climbing up the slide. Girl says ‘you shouldn’t climb up the slide, its naughty’….’that’s right’ Mummy said. ‘She is’ said the girls, referring to Austin being ‘naughty’ and climbing up the slide. He, is a boy explained Mummy. ‘Are you its Sister?’ asked the girl. (Austin had clearly gone from being a girl to an object)…Mummy took the compliment! Happy days!

Here are some pictures from the ball, everyone had a fantastic time, we were perfectly behaved for Auntie Vicky & Uncle Nath although when Mummy returned to the hotel room, 30 minutes after Daddy, Austin was wide awake in Daddys arms when he opened the door. Safe to say it was a sleepless night for all of us.


The next morning we were little monkeys at breakfast, entertaining the old people who just wanted a quiet sunday morning breakfast, we were so excited to have woken up somewhere different and banged our cups on the table in sync, because the cutlery jumping was hilarious and then chucked our entire FULL ENGLISH on the floor, whilst eyeballing the old people.


we went to help tidy up with TEAM DEAN, and gained a few neurocare themed balloons…

then went home and crashed, like most people, the morning after a big night out…

That night was the main night for bonfires. Unfortunately I am still not ready for the change in air at bonfire night (the log burner is more than enough) and so we had our own indoor fireworks with the multi-coloured sensory light, log burner and then put blankets and cushions on the floor by the patio doors and watched all of the fireworks over the hills, including Wentworth Woodhouse, The Fitz and the neighbours up the road. Hopefully next year we can attempt our first proper one.


Monday came and we were under the weather, Mummy & Daddy knew that the next few days were going to be tough. We slept a lot…


Nannie fetched us a new toy. I fed the horses and the donkey whilst Austin jumped on the box it came in. Mummy took a picture of me and didn’t even notice Austin in the background until after, it just about sums up our different personality…

Each day that came, we got worse, we lived in our PJS, slept alot, and played nice with our new toys. Nannie even brought us some Pudsey bear ears…
Daddy and Austin went to bed one day because Daddy hadn’t been to sleep in the night for caring for me and Mummy told me that Grandad was visiting after work, so I used all of my energy to lay on the floor by the gate and wait for him, he came and cheered us up. We love Grandad. He does this funny thing where he runs on the spot and we copy him. Mummy tried to video it. She is going to post all of our videos on Facebook and Vimeo.

We are probably at the ‘normal child with a cold’ stage now, a bit chesty and a bit of a runny nose but life is slowly returning to normal. Well, normal as we know it. This weekend we have had some fun with Nannies bubblewrap catwalk – video to be posted on Facebook and Vimeo.

We managed a morning at Tropical Butterfly World with Nat Nat and Big T! Big T had the time of his life making bird calls and talking to owls and Nat kept screaming because she thought the animals were touching her,  on one occasion it turned out it was a ladies coat that brushed passed her by accident. Shes really funny.


We finished our weekend with a visit from Uncle Peter with breakfast treats, Nannie & Grandad Newborough came for the afternoon and then the fab 5 went for a local walk.


After a week stuck in the house, the small wins this weekend were a welcome blessing.

High 5 for surviving the worst of our cold without a hospital visit. 7.5 months without an admission! YAY!

 

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