Saoirse & her art

 

img_2140After posting about Saoirse and her artwork this week, I wasn’t prepared for how popular it would be. Not because I don’t believe her talent is any good. I do, I think her natural talent is amazing. I love her choice of colours and use of abstract, and intuition. So here is another piece of her work.

Back in the summer, Saoirse found one of the large art boards in the art & crafts area of the house.

Yes I love art & crafts…especially when I can allow the kids to be creative. So I always have a selection of crafts, paints, and all things arty available.

So Saoirse was left to her own devices and I was so blown away by her art work I had to take a photo of it.  She drew a picture of me “her mummy” and I love it.

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#art #freestyle #imagination #autism #love #artwork #becreative #inspire #proudmummy #wildwarrior #lifewithsaoirse

 

 

Special moments

img_2139Days out can be tough on us as a family. With Saoirse everything can change in a moment. Everything depends on her mood, the environment, and our ability as a family to keep everyone happy & safe.

Last summer a day out ended up with a call to 999. Why?  Saoirse had gone missing (it turns out on that occasion someone had tried to walk off with her) but that’s a story for another day. It wasn’t the only time where Saoirse has run off and gone missing. One sunny day a zoo was on lock down for 15 minutes trying to locate her. They found her in the reptile house completely unaware of the chaos and trauma she had caused me and the staff. You might be thinking how can a parent loose their child?

When that child is determined and has no real understanding of the dangers + doesn’t listen + small and fast = lost child 

So when we go out anywhere we plan it like a military exercise. We make sure we know our environment.

Is it safe, how many exits, any steep cliffs or water nearby, how noisy or child friendly will it be,  if we need a fast exit are we close enough to our car. Lastly, make mental note of what she is wearing or take photo of Saoirse on the day to show anyone looking for her if she does get lost. 

We had a tour booked since last month at the national headquarters for #rnli. It’s really worth a visit even if it’s just for the restaurant and views across the harbour. I had been the previous month and felt that it would be a good day out for our family.

Our days out can be dominated by the many moods of Saoirse. This doesn’t always go down well with her older brother Conor.

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Our day hadn’t got off to a good start. By 9am I was on the phone to the ambulance with a choking Ailbe. Thankfully he coughed up what ever the little monkey had managed to eat. With that drama over we were ready to go out.

Going out with all three children can be hard work at times. Not because we have naughty children (even if that’s what others might perceive from how they behave) but due to all of them having different needs. Like any family trying to keep 3 different aged children happy….it’s not easy! The kids really enjoyed the lifeboats. We all got to take a ride in their lifeboat simulator and they even let Conor & Saoirse steer the boat.

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The tour guide did an amazing job, she did look a little nervous that Conor was walking around with a clipboard and pencil !It turns out that was her first official tour.

After our little trip out we got to spend more time with Nanna Sandra. The kids love her. They get to do all sorts of fun things. Most of the time we don’t get any respite with the kids as we don’t have a support network close by.  So when we get to spend time with our friend it’s lovely on many levels. We realise that all three of our children together in the same room can be hard work. Due to all their different needs and risks we won’t/can’t leave them with anyone else.

It’s the little things that make the difference, creates those special moments.  Having someone out with us who loves and can manage our children. Just being able to distract one of them or chase after them so the other children can still enjoy an activity. It all means a lot. Probably more than Sandra realised. We all appreciate Sandra and the support she has given us time and time again. Even though she has her own life and family she has never made us feel like a burden.  

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The kids were all happy. Saoirse was in such a good mood when we got home she actually wanted to play hairdressers with me. Today was a win!

 

#rnli #homemade #lunch #familytime #wouldntchangeathing #happy #timewellspent #lifewithsaoirse #lifesaver #support #lovedones #happydays #daysout #familymatters #family #siblings #lifeboats #harbourviews #autism #wildwarrior

It’s a numbers game

What a 72 hours we have just gone through. 1 Out Patient Appointment, 1 admission, 2 hospitals, and 1 ambulance transfer!

If there is one thing I have learned from all the previous admissions is;

Being discharged is all about the numbers.

They came to the conclusion that Ailbe had viral pneumonia which was slowly getting under control with lots of nebulisers and inhalers. What was keeping us from being sent home was, every-time Ailbe fell asleep his oxygen levels would drop to around 84. This was established the first night when 30 minutes post nebuliser Ailbe finally fell asleep and within seconds his oxygen levels were dropping; 98-96-93-90-89(at this point the numbers change colours on the monitor and start beeping) 84 and there are now three nurses all around Ailbe checking his nasal prongs and probe are on properly, the nurse panics saying she can’t increase his oxygen flow as they are already at maximum. Ailbe numbers keep dropping. It’s around 10pm and it’s really dark, it would be funny if it wasn’t such a serious event. There are nurses everywhere with little torch lights shining all over the place. All the time the numbers flash and the machine beeps. Then the nurse realises that despite Ailbe being connected up to the oxygen the oxygen lead has come off the valve. Slowly the levels start rising and calm returns to the ward.

So at our local hospital everything is going well with the exception of Ailbe sleeping and his oxygen levels still dropping.

Today on the ward, Ailbe and I are exhausted. He sleeps for a long time and we trial taking him off oxygen. It’s a tense time as I watch him sleep and watch the numbers.

So Ailbe passes the number game, the doctors have said he can go home.

It coincides with daddy coming to visit with Conor & Saoirse. We finally have some good news. Conor comes up to me and says “mummy I thought you wouldn’t be home for Christmas” then gives me the biggest cuddle.

Another admission

Today I took Ailbe for his follow up respiratory appointment. Granted he has been quite poorly all week with a cold. However, what I didn’t expect was an admission straight from the out patients appointment.

We had such a bad 2017 with repeat hospital admissions, with his last one being Christmas Day for 2 weeks. So as we had managed to cruise 2018 without hospital admissions, this hit me quite hard. I don’t want to even get started on why the palms of his hands and feet have turned orange!

To make things worse we are at a hospital that isn’t our usual one. Making travel longer for Kyle and the kids to come in or for Kyle and I to swap shifts if he stays in for longer than a night.

Ailbe currently can’t keep his oxygen levels above 84 when asleep without the support of oxygen. He has had hourly nebulisers, blood tests, medicine shoved down his throat and sadly all over his face, & he has to have an nasal prong mask force oxygen up his nose. Ailbe has gone on strike! He is like a restless tiger lurching around his cot unable to settle because he has cords all over the place. Looking at me in sadness and disbelief that I am allowing it to happen to him. It’s a totally pants week.

The only great thing that happened this week was Conor sang a solo in his nativity. Best of all he sang like an angel ❤️

So Conor and Saoirse have to contemplate another Christmas without their brother at home, whilst Ailbe fights off another respiratory infection.