Riley Eve Casey

At every single appointment we have had with Riley's cardiologist Dr Justo without fail he would say "The plan is that we will let Riley have her fourth birthday and then after that we do her Cardiac Catheter Procedure and then we will do her surgery". Well Riley's birthday was this past Tuesday and guess what we got a call about on Thursday? We finally have a date for the Cardiac Catheter Procedure. It's going to be on Tuesday February 13th. For some weird reason I always had a feeling it would be mid-February. We happen to have one of our biggest weekends at Church around that date and I just somehow knew that out of all the dates it could possibly fall on; it was bound to be then. The game plan is that we will need to be in Brisbane that Sunday so we can be there for pre-admission on the Monday. Like I have said before; this is not the Fontan surgery. This is an exploratory procedure that involves inserting a thin hollow tube into an artery or vein whi...

A lot has happened. The last time I sat down and typed away at an update on Riley; we were still living in Mount Isa. That feels like a lifetime ago because so much has happened. Firstly we have settled into Mackay quite comfortably; we have been living here for 8 months and to this day I still have people ask us the question "Are you settling in okay?". The answer I want to give most times is "Yes we are all settled in; like the eight other times you asked this question before". But usually I reply with "Yes all settled in". The girls love it here too; they request to go the beach fairly often which is quite a feat considering that both of them had periods where they were deathly afraid of sand. Maybe the texture freaked them out? Jess even got a job as a nurse in the Cardiac Care Unit of the Hospital which was something she had dreamed of doing ever since she discovered Riley's condition. Mount Isa didn't have a unit like that for her to wo...

It's been a year since I have written anything on here. Blame it on lack of material I guess which is most definitely a blessing. When your kid has gone through two open heart surgeries and the best you can come up with to write about is her obsession with the Trolls movie soundtrack then you know you are leading a pretty good life (except for having to listen to the Trolls soundtrack on repeat EVERY.... SINGLE.... DAY...). I guess the reason that I am writing this now is because it's Riley's birthday on Monday and she is turning three. Over the past month Facebook has been bringing up Facebook memories (you know the ones where it shows you embarrassing photos of yourself from years ago that you would rather not see again; maybe it's a reminder service to delete them); and it keeps going back to three years just before Riley was born. I remember being nervous, unsure and just holding onto my faith believing that God has got this. That everything would be okay. That Ri...

Today is Riley's 2nd Birthday; that means we have had two years of this awesome little girl in our lives. It also marks at least a year since I have written in this blog; I lost a bit of motivation I guess due to a couple of reasons. One is that I get the opportunity to speak in my Church every other week and she provides me with an endless amount of material to work from; I am always sharing some crazy or funny thing she has done (I am sure when she is a teenager one day there will be plenty of eye rolling and groans from Riley every time I say "My daughter did the funniest thing the other day"). I guess because of that; the idea of sitting down and writing down Riley's experience just feels a bit like I am reheating leftovers because I have already shared so much about her. Though I do realise that not everybody goes to Isa Community Church on a Sunday so that's not a great excuse really (However I do realise my Instagram and Facebook is almost like a shrine to ...

Riley turned one recently and she gave us two presents. The first one came out of the blue as Riley finally decided that flinging herself forward in body slams wasn't her ideal mode of transport. She finally got her co-ordination together and realized she has these things called "knees" and started crawling properly on them. We let out a huge sigh of relief because people kept telling us  that maybe she missed her "window" to learn how to crawl. In the grand scheme of things we weren't extremely worried because I can't imagine that Riley was going to become an adult who had no idea how to crawl; somewhere along the way she would have figured that one out. But it's nice to see your baby do the normal things. So now our days consist of being unable to escape her. You use to be able to just set her down near her toys while you went about your business but now she is following right behind you. I went for a shower the other morning which is all the w...

We are fast approaching Riley's first birthday in just a few weeks time; what an unbelievably crazy thought!? It feels like a lifetime ago that we were anxiously waiting in Brisbane for her arrival. I even remember when we were in the theater and I was sitting next to my wife holding her hand; very nervous because I was about to be a dad and also the fact that the day was not turning out the way we had planned. The doctor lifted Riley up into the air to show us and it finally hit us that we were parents. I have photo's of the event that I don't think I have ever really shared with anyone because Jess and I would look at it and say "Aww look at her" whereas everyone else would look at it and say "Eww look at that!". Needless to say a freshly newborn baby does not look the way that you would expect from Movies and Television. But she was ours and she has been ours for almost a year. What can I say about our little girl since I last shared on thi...

It's the dream of every Heart Kid parent to take their child back home and experience a somewhat normal life; a dream that we are currently in the midst of. The idea of taking Riley back home with us to Mount Isa was both scary and exciting. Exciting because we could finally just take care of her without the worry of a surgery looming on the horizon (or at least not any time soon) but scary because we were completely responsible for her now and that includes paying attention to any changes in her behaviour/health. I had all these ideas about what I would be like such as constantly using hand sanitizer, keeping everything pristine clean, being very wary of who held her simply because they might have a cold. So what is life really like on the other side of hospital? Completely different than what I expected. Somehow from the moment we brought Riley home everything just felt normal. We didn't stress out or worry over her concerned that something may be wrong. It was just easy ...