Double Emergency

What a week!

Monday was fairly straight forward, documented in our last blog Searching and then  Tuesday was fairly easy going too. We did lots of playing with Mummy in the morning, Daddy left super early that day because he was on a course in Chesterfield and needed to leave earlier than normal. He can now install Electric Vehicle charging points, so if you want one, our Dad is your man, check out his Facebook page or website! We played with our Melissa and Doug See and Spell puzzle, which is one of our favourite Christmas gifts. Rory in particular has a photographic memory and he LOVES jigsaws and puzzles. So this way, he is learning word association and letters and sounds through something that he loves. He will also remember how to spell each of these words through the image he creates in his mind and the experience of doing something he loves. This activity is aimed at 4+ but is accessible much younger with adult input, although both of us do choose it and happily play independently. There are also lots of ways you can extend the learning using the letters and sounds. You can purchase here! It is also available at Argos & Amazon amongst other places.

We played with our Duplo, Thomas & Friends trains and other jigsaws too.

Rory is really starting to wake up and has grown developmentally, just like Austin did almost a year ago. There are lots of other things going on in the background which will be documented elsewhere in future blogs, look out for them, but for now, we are just celebrating, Rory being alert, making more eye contact, playing with others and interacting more. He has also been so noisy – which can only be a good thing that he has got an air leak around his new bigger tube. His airway must be growing. let’s hope so!

Whilst Austin was at nursery, and this day, he really didn’t want to go, completely opposite to Monday when we walked in, all by himself and sat down to his lunch, today he was crying and really didn’t want to go in until Norah came over and took his hand and instantly, he smiles and skipped off happily into pre-school. She is such a lovely lovely lovely little girl.

Rory had a bit of a park -tour with Mummy & Nannie, enjoying lots of local parks and enjoying the outdoors before picking Austin up with Nannie as well as Mummy. What a treat!

Wednesday was our first day back at nursery together. We were so excited to get dressed knowing there were two uniforms. Rory even tried to put Austins socks on for him, another great milestone, Rory interaction is growing daily. Both boys had an awesome day at nursery, the nursery boss said that Rory had been ‘so much more alert, making lots of eye contact and sounds and playing with others, choosing resources’ and it really made Mummy feel hopeful for the future.

When we got home, we tried on our new trainers ready for Mini Kicks (now known as Kixx) which Mummy & Daddy have signed us up to for Sunday mornings. Find out more here! We had so much fun running around testing them out. Daddy says they make us run faster. Mummy was just grateful there was no drama, because she knows that we don’t usually cope well with new stuff.

That night was a bit dramatic though, the grown ups had been struggling to clear Rory all day, even Claire had used lots of irrigation at nursery which is unusual, and it transpired that the suction machine wasn’t suctioning as strong as it should have been, mean whilst, Mummy was trying to sort out the machine, I still didn’t have a clear trachy tube and in the end, the grown ups did an emergency tube change, and collected the back up machine from the attic, which isn’t mobile, and is 3 times as big and heavy.

Thursday Rory went to nursery with his back up machine in a bag for life, because there wasn’t anything else big enough to carry it around in, and it had to be plugged in at nursery. Luckily we now have a loan machine whilst the customer service team fix ours. He had another good day, however today Austin got his first telling off for pushing another child. The nursery boss did explain that it wasn’t malicious and that he was just wanting to play and often children with communication difficulties, they struggle to get other children’s attention but mummy & Daddy were cross and wanted to stamp it out straight away.

Friday – he didn’t do it again although Rory was equally as awesome, wowing everyone with his new skills, even if he would rather play in a storage box than with any of his new toys after nursery!

Nursery is going really well at the moment in that we have had a good run of 3 days last week. We have full nurse cover this week. Rory settled straight back in whereas Mummy worried that he wouldn’t after such a long break. Rory had a new key worker who is really positive and making a huge effort with Rory to understand his needs and build a relationship with him. Mummy is going in to train her up next week too.

Mummy had a bit of a wobble on Friday when the lady who commissions Rory’s care package for nursery called. Mummy gets really angry that she has to fight her best fight every single day just to get us the same opportunities that every other child gets naturally.

On Saturday we had a road trip to Chesterfield to visit Mummys friend Tracey so that Daddy could quote her for a job, and during lunchtime, Rory did something else new, he engaged in pretend play, pretending to feed his happy meal toy a chicken nugget or chip. We don’t usually play with food but in celebration we went along with it. We went to Elsecar Park afterwards and then visited Uncle Craig & Uncle Calum.

Today has been one of those days with lots of highs, great memories made, but also stressful situations, the grown ups are glad to see the back of. We had our Kixx debut, and we were all ready in our Nike tracksuit that Uncle Craig bought us for Christmas, our new trainers we so joyfully tested out  earlier in the week and everything medical carefully packed, ready and there we were eating breakfast, relieved that Mummy’s plan of putting our clothes on earlier to give chance for the meltdown to settle before the big rush to get to mini kicks on time when Rory decided to slide down off the chair, no biggie, except his tube got caught on the table and as he went down, the tube was forced up and out and we had a medical emergency on our hands 25 minutes before kick off!

We grabbed the bag and emptied out the medical equipment. Rory was hysterical because it had shocked him, he was grabbing his neck, it must be such a strange sensation when you rely on something to breath and then its gone and you are fully aware of it. time was ticking and the pressure and the adrenaline was flowing. Austin began crying too because Rory was crying and he could sense something was going down!

Daddy was having to restrain Rory because he was really distressed, and hold his phone over Rory’s face with Ben & Holly playing to try and calm and distract him, but hold it at the right angle to make his head tilted and at the right angle to get the breathing tube in his neck, pressure, as always, was on Mummy to get it in safely and quickly whilst Rory was still pink and breathing. She managed it. She secured his tapes with a triple knot and then began the work to re-do the tapes around his neck properly, and then trying to push the stoma pad under the tube without pulling it out as Rory was still fighting it.

We abandoned our breakfast which was now cold, jumped in the car and pulled up at Greenacres, ready for our mini kicks session. We didn’t see Coach Nathans message in time and so we had parked right by reception, and then had to walk all the way around the building to the sports hall, but it was fine because the fresh air and the walk gave us all time to relax, compose ourself before attempting to walk through the door, with Rory pulling backwards to leg it back out and Austin throwing himself on the floor. Coach Nathan said hello and explained that we were just having a warm up session for 9 minutes, to settle in and wait for any later comers (like us) and to be fair it was great because we were able to settle in with familar things like tunnels, lots of different types of balls and bean bags. We got stuck in. Mummy & Daddy were both surprised.

The 40 minute session was very fast-paced which is great for toddlers, keeping them active and interested, our communication delay meant that we didn’t quite understand the instructions we were given straight away, but Mummy & Daddy and Coach Nathan and Zack were quick to model it and help us to try and copy. Austin was watching all of the other children and taking it all in, laughing, jumping and trying to follow and Daddy was great with Rory, helping him to take part, and giving him time out when he needed it, but he did so much better than we imagined for a first session and Mummy only had to suction him once. Even though Daddy was basically carrying or guiding him around the room, he was smiling the whole way through, apart from when he had to sit still, he was in a big open space and just wanted to run. At the end when the team had to shoot for goal, both of us chose not to get involved, Mummy & Daddy didn’t force us, and then when the group of children had gone, Austin made his own choice to go back and have a go when there wasn’t a big group. For the last 10 minutes of the session, we were ready for going. The session was right on the cusp of nap time and no sooner had we got in the car, than we had dropped off, and Mummy & Daddy went for a Costa in the car and chatted all about it. Here are some pics of us all ready to go, walking in to the session and the. A couple I magpied from the MiniKicks Barnsley Page, obviously cropping out other children for safeguarding reasons.

We called at Nannie & Grandads on the way home, Rory grabbed a pear from the fruit bowl and we were telling Grandad all about our morning before he went to footy training himself.

When we got home, Daddy got some cones out of the garage and we have played with them all afternoon, practising. We have been hiding under them and collecting up the treasure, even though we know next week will probably be different, at least we are getting familar with the kit and the language that Coach Nathan uses. We are really looking forward to our Kixx journey and hopefully over the coming weeks we will still be as excited about it, and we will have grown in confidence and got stuck in to the session, if not, then at least we have tried, because it would have been so easy to say ‘we aren’t ready for it yet’ or ‘we can’t access it’ ‘Rory shouldn’t play sport because of the risks’ when actually, there are so many benefits to be had from taking part in something like Mini Kicks, that we should push out of the comfort zone and give it a go!

This afternoon, Nannie & Grandad Newbs and Great Nannie T visited. We were playing with the cones and the trains and reading with Grandad.

Then, we went for a Carvery with Nannie Di, Grandad, Uncle Craig & Uncle Calum, Mummy & Daddy and we were super stars. Mummy took a photo of me laughing at my reflection in the window when it went dark outside!

Here’s to another week, a full week with both of us in nursery, a new opportunity, lots of interesting research, lots of unpublished blogging and hopefully no more emergencies!

One Reply to “Double Emergency”

  1. Perfect, beautiful, exceptional little family, you are all my inspiration. Much love always xxxx


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