Saoirse has a very creative mind, she always has a idea of what she wants to paint. I adore her flare and creativity.
This is a lorry rainbow just in case you didn’t know 😉 Her intuitive use of colours works really well.
#asd #painting #art #creativity #lifewithsaoirse #autismrocks #lovemygirl#warriorprincess #intuition#love
Ailbe loves his food.
I am sure we have all had that moment when someone tries to take your plate and you haven’t finished
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.
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.
Ailbe has been feeling poorly over the last few days. We have been quite lucky that we have managed to stay out of hospital so far.
Today Ailbe is feeling particularly rubbish with a cold. As I have said in an earlier blog post “Germ Season” a cold for Ailbe becomes very dangerous and despite every prevention we put in place there is always a chance he could end up in hospital with respiratory problems.
Once older brother and sister are at school, Ailbe gets a chance to have a pj day with cuddles and of course his favourite girls #singinghands #lovedoesntcountchromosones #fireman #chillout #relaxingathome #love #dontcountusout #wcat #dsa #makaton
The wonderful charity #wcat #wouldntchangeathing have been in collaboration with #itv #thismorning #buble to produce another beautiful video #25mums #25days #1specialgift you can find it on their ITV app or here is a link
I sat watching it with Ailbe and I felt proud. I had been into the school beforehand and was feeling pretty rubbish. Then I saw all these amazing parents from my Down Syndrome community/family on the telly fighting to make the world a better place for our children’s future. I realised that with enough awareness raised we can actually make a difference. How cool is that!!!
@wcat @lifewithsaoirse @christmas @letsdothis @changetheworld @iamable @thismorning @itv @buble @dsa