Hello everyone!
It’s been a looooong time since we have updated our blog, but we have decided we want to be more active on here now. But first comes the update post..I hope you’re ready for the longest blog post of your life!
The last time we updated you was at the beginning of this year, and how things have changed since then!
I suppose the biggest update is that we now live together! A few miles further than Brighton like we originally planned, in a little 2 bedroom flat that we can now call home. It was a long battle, but we’re living together (with lots of support from live-in and specialist carers), and we couldn’t be happier.
The next thing - I guess - is our wedding; which is only 8 months away..8 MONTHS! How did that come around so quickly?! It’s exciting and daunting and stressful all at the same time, but I hope it’ll all come together in the end and will be the most perfect day that we dream of having. Thats definitely one thing we plan to do; diarise the build up to our big day here.
Health-wise, things are pretty stable, and our carers now play a big part in this having taken over from the roles that our parents played. We have a live-in carer all the time; to oversee our package, the property, and to make sure everything is running smoothly. We also have a specialist carer each, which is a big change for Sam especially, and a waking night carer. We are so lucky that we get on so well with every member of our team, and the care that we receive from them is more than I ever imagined.
Katie has been struggling with her shoulder dislocating on an at-least daily basis; it is so weak that it dislocates during the daily seizures she still suffers from, and from things as small as going down the pavement or over a bump in the car. Although the carers are very well-trained in massaging her arm enough for her to relocate it herself, it means high doses of opiates every day for her acute and chronic pain. She is still waiting for her Urostomy appointment, and since her recent admission for Urosepsis, her seizures are yet to settle, but she’s improving every day.
Sam is very much the same old Sam, but just a lot more confident! With help from everyone and a lot of effort from himself, Sam has made the biggest, bravest step forward in moving here, we’re all so proud of him..(more than he even knows!). His recent appointments still show that his heart is still only working at a very low percentage, but is stable and we are just living our life to the fullest.
We’d like to use this post to thank all of our families who have had a massive involvement in our new lives together over the past 6 months. It hasn’t been a smooth ride, but it’s been smoother than we imagined, and we both can’t imagine life apart again now. Neither of us imagined that in our lives we’d ever meet someone, move out, and be planning our wedding..and without the support from those closest to us, we wouldn’t. So to all of our parents & families; thank you. We’re both so happy and love you all so much.
So, our blog is back in action. We’ll be using it as a diary, for updates, and for you all to have a read if/when you feel like it. No one knows what our future has to bring, but regardless, it’ll be together.
Here are some photos of the past 6 months..enjoy!
