Our Limbo Year

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 work in so when she discovered Mackay did; she applied straight away.
Besides it being interesting to her; it obviously could benefit our family in the long term. If your kid had a complicated medical condition; wouldn't you like somebody in the family who was specialised in it? Of course it is a bit different right now because Jess is working with adults and hasn't really come across any congenital heart condition patients but she is picking up things here and there which may be useful one day.

We even got to share Riley's story at our Church this past Sunday which was nice to reflect on how good God has been to our family and the miracle we have seen in Riley doing so well. We had to go back over our blog to remember all the significant moments; there were so many that there was a lot we had to leave out.
You can listen to it if you want to here: http://www.newlifechurch.com.au/jess-seans-god-story/ or you can hear it on the NewLife podcast. Unfortunately it gets cut off before we can talk about Riley's future but you can read all about that down below.

As for Riley she is doing really well. She has become more outgoing across the year and even dare I say it a little more adventurous (emphasis on "little"). She has encountered so many new people and when we relay to them that she has half a heart they are all shocked to say the least because if you didn't notice the scar; you would just think that she was like every other little girl. Though she is starting to wear herself out a bit more. If she decides she wants to dance around the room to Taylor Swift or Disney music then after a little while she needs to sit down and catch her breath. Her favourite saying is "I'm a little bit puffed". She says it whether she is playing outside or going for a little ride on her bike. I have this theory that she knows this too because sometimes I suspect she uses it to get us to carry her because she can be a little lazy. There have been times where she has taken three steps and turns around to tell us she is puffed whilst immediately raising her arms as if to say "Now you need to pick me up". Don't know how much longer that is going to work for her because even though I have been hitting the gym as of late; she gets quite heavy. She's not the little toddler who was a breeze to carry; she's growing up.

I say all of this because we are barreling towards the next stage which has always been so far away. Never completely out of our minds but not something to be concerned with just yet. It use to be "Well her next surgery is still years away" and now it has changed to "Her surgery is months away". We had an appointment with her cardiologist Dr Justo today who once again reiterated that she is doing well but it is getting close to needing to do her third surgery. He said that when he goes back to Brisbane he is going to put in a booking for her Cardiac Catheter which is an exploratory procedure that helps them to get a better internal view of how the heart is functioning. This gives them all the information they need to prepare for her open heart surgery. From there they will do a conference with all the key people (surgeons, cardiologists etc) and pick out a date for her surgery.

He said we can expect the Cardiac Catheter procedure to happen in late January/February (we'll receive a letter in January to confirm the date) and then it will be up to what the conference decides for the date of the Fontan surgery. It could be up to six months before it happens after the Cardiac Catheter but he said that is usually not the case and happens fairly soon after. Jess also recently went to a conference in Brisbane which is all about the Fontan Surgery and was surprised to hear from some parents who have been through the whole process that their surgery date kept getting knocked back. They arrived in Brisbane prepared for their child to have surgery and then an emergency surgery came in that moved their child to the following day. Then another emergency surgery occurred so the hospital sent them back home and had to rebook another surgery date for them. My hope is that will not be the case for us but it is a good thing to be aware of.

So with all of that in mind it is becoming clear to us that we will be in a bit of limbo in regards to what next year looks like for us.

Thankfully my Church is incredibly supportive and is happy to release me to go whenever it happens and Jess has a lot of leave saved up from her work. So it's not a question of how are we going to do it because we feel like that is taken care of; it's just a waiting game of when. I also feel a bit bad for Riley because she is very excited for Kindy next year and this is going to be a bit disruptive for her. She will need to go for a short stay for the Cardiac Catheter early on. There will be her surgery which could have her in hospital from anywhere from 2-5 weeks (or upwards) then she is cleared to go back to Kindy two months after that. I am hoping she makes friends really quick so she is able to slide back in easily when she goes back. Meanwhile Maya will be along for the whole ride; hopefully on her best behaviour...

We just ask that you keep Riley in your prayers as we look toward this next stage. Even though we will probably have our emotional moments as it hits us once again what our daughter has to go through; Jess and I have every confidence that God's got this and seeing how Riley has journeyed over the past few years instills us with so much hope that everything will work out well.