December 16, 2018

We have been home for 2 weeks now, and it has been so nice to be all together in our home – especially by our Christmas tree . We are still so thankful and blessed to be home for the Christmas holidays. It is something we don’t take lightly or for granted, as this changed our perspective on things in life we can and cannot control. Looking back one year ago where Ava was in the PCICU feels like yesterday in a strange way. It is still so fresh in our minds where our journey started at the Stollery and how far she has come. Landon and I both the other day at supper looked at each other and both said how we can’t believe how much she has grown. It’s amazing. How her heart is working well- something so simple yet so vital. To gain weight and eat and drink on her own is absolutely amazing.

It all gets overwhelming and has been difficult at night as parents.. when u are trying to settle to sleep it’s like your mind is set on a tape recorder and plays over and over the traumatizing things Ava has been through and thinking about ahead of the future. It’s hard to control. She has spent months at the Stollery admitted; a total of 6 major surgeries and still requires more. She has so many scars… We both get angry, frustrated as why she has to go through this. It is just not fair. No baby or child should have this “unfairness”.

We just look at her and think how lucky we are to be her parents. She is such a blessing and miracle. Ava is one of the strongest kiddos I know. She shows pain whose “boss” and doesn’t let anything stop her. She constantly has a smile on, truly amazes us.

She has been doing really well here. She passed her withdrawals of the narcotics. She is getting better with her separation anxiety.. and eating and drinking well. She is cruising around and playing with her animals. She is using her walker more and more to walk with assistance.

We took her last week to go get her picture with Santa – at Kingsway, which was a lot of fun. It felt so “normal” of what a toddler should be doing. It was nice to be out as a family. Landon and I both really enjoyed it. Thank gosh for some ideal ‘family washrooms’ as it can be challenging to manage an ostomy while out- and with a second medical bag full of supplies. It is our goal as a family to go out more, do more outings.

Ava had her Pediatrician follow up a week and a half ago. Her stitches on her bum where the surgeon had fixed last procedure did not heal closed as there is too much scar tissue, so we will look at next steps of what to do. We are doing the dilations twice a day. Overall her doctor was very happy with how she has been post op. We see her this week again.

She seen her ENT doctor (ears, nose and throat) last week for a follow up and he checked her vocal cord. He does this by putting a camera scope down her nose into her throat while awake- definitely not a pleasant procedure. She is sure tough.. It showed her left vocal cord is permanently paralyzed. We were hopeful some nerves came back over time but hers have not. It currently is causing her no difficultly as she can swallow and drink well. This would be the main concern. Will just continue to watch and monitor as she grows.

We thank everyone again for all the love and support for our Ava. She is blessed to have such an amazing support group. We are thankful to be home together. She was excited to help wrap presents as I’m sure she is going to be more excited to open the ones Santa got her 🎅🏻❤️.