This week has seen T have his first major emotional reaction to his medical conditions. As a family, we have had many emotional responses to the ever unfolding events, however, this has been the first time it seems to have significantly hit T. And hit him it did. Like a HGV. We were getting ready … Continue reading Black Thursday.
Today was our check up with T's cardiologist. Every appointment we go to now starts with the same questions from young Mr T: "Do I have to have any tests?" "Which Dr are we seeing today?" "Will it be the electric shock test again?" The past year has been particularly tough for our dude. He's … Continue reading The boy with the big heart.
So its been all change in the Riley household this week; and I don't mean with us as a family, I literally mean the house itself. Up until 5 years ago, we seemed to move every year or so for one reason or another. We were in the wrong city for my career, our landlord … Continue reading Home Improvements
I thought I was going to end up writing this live from Ward 130 today; but luckily that is not the case. Just my living room as normal. Which, looking around it, could do with a hoover. T has had a rough few weeks on the whole. His symptoms have taken a bit of a … Continue reading Just put butter on it. Put butter on EVERYTHING.
Today, I feel like I made a somewhat epic parenting fail. A few weeks ago I noticed (on the source of all knowledge - Facebook) that a new inflatable park was opening close by. Now T loves a bounce. He is a firm fan of a trampoline park, even if he can't bounce for quite … Continue reading Bouncy Castles do not make stable walkways.
We're on holiday! We love to travel. We have a giant blackboard in our kitchen with a list of all the places in the world we would like to visit. Each time we think of a new one, we add it on. It's called 'The Riley Family Travel Wish List' (I think I need a … Continue reading Sun, Sea and ‘Special Assistance’…
So today marked my first solo venture out with T and the Mean Machine. I have been a little worried about this. Nothing to do with T as such; more my confidence and coping (driving) abilities with our new 4 wheeled friend. But I really really wanted today to go well for us both. Now, … Continue reading Bumps in the road… or loose paving slabs.
Had a bit of a tough morning today. We've been to see T's Paediatric Neurology Nurse to discuss his progress. It is clear to all who know T, that he has deteriorated a bit of late. He has become much more unsteady on his feet and we now have the 'Mean Machine' (a.k.a the wheelchair) … Continue reading Labels do not define us.
I think all in all, we've been banging the diagnosis drum now for about 7 years. Even as a toddler, T was unsteady and clumsy. Not unusual for a toddler I guess, but when he woke up one morning at about 18 months old and couldn't place any weight on his legs, we knew something … Continue reading The road to diagnosis…
So, I'm a 33 year old mother of one, a wife and a secondary school teacher. I'm ambitious, love to laugh and fighting a constant battle between wanting to look like the 6th member of Girls Aloud, and needing carbohydrates and wine. Not gonna lie, the carbs and wine win 98% of the time. In … Continue reading The start of the journey…