Thursday November 15, 2018

Hello Ava’s family and friends,

It’s been a busy couple months since after her last surgery. Many appointments to her Surgeon and Pediatrician. She has grown so much, developing in gross motors and fine motors. She can pull to stand and move side to side while holding onto something. She loves to babble and giggle. Her favourite place to be is her playroom. She has been teething like crazy, has about 12 teeth. Many popped through just recently all at once.

Landon and I have had to continue the dilations every day to her bum hole to maintain the size. She has been tolerating them better each day, and we have reached the goal size.

Her ostomy has been ok, manageable with the prolapse complication. Her incision to her bottom has healed up, except a small hole that reopened right after last surgery in September just above her rectum. She had so much scar tissue from the dehiscence that the skin was difficult to close back. The big worry in the last while was whether or not that hole would be a big problem, like a “fistula” (which would be a connection channel to her bum hole). She got a test done Tuesday November 13 called a Colostogram which the surgeon and radiologist inserted dye inside a catheter into her stoma to her bum to show whether or not a fistula was there. It showed there was not 🙏🏼, so all positive so far. The next big step will be to reverse her ostomy, which is booked this Monday, November 19. The surgeon will also attempt to fix the hole as well. She will most likely need another surgery when older to fix the hole once she grows more.

Now to prepare for Monday. Landon and I are so thrilled to have this ostomy done with…Both terrified and stressed to be back in hospital and have Ava go through another major operation. This will be surgery number 5.

Almost a year ago, November 18,2017 was the day we got admitted to the Stollery Emerg where our lives got turned upside down with Ava’s diagnosis, and little did we know the journey we would have. It has been emotional for both of us with flash backs approaching these dates.

We have her cardiology appointment tomorrow (Friday Nov 16), which includes her ECHO, ECG and full check up with the cardiologist. We have pre admission clinic in the afternoon. Will be a big day.

We will try and update here how Ava is post surgery. We appreciate all prayers and thoughts towards her. She is one brave girl. Will be eager to get back home and be by our Christmas tree.