May 11, Friday

This past week has been so busy for our family. We had homecare come twice this week and went to see the surgeon and Pediatric wound care nurse on Thursday for a follow up. They are happy with the progression of her wound to her perineum. We still need to continue the dressing changes every time she pees, but landon and I are getting a routine. The mornings are the busiest because Ava is prescribed a medication for her heart which makes her pee more than usual to decrease the workload of her heart, so certainly increases the dressing changes ( about 11-12 in 24 hours) .

I forgot to mention in the last post, which people have been asking us about her colostomy that the ostomy is to be reversed. We are told she will have the ostomy for about a year. The big debate that the surgeon has with Ava is her new rectum hole that was reconstructed may close over with the healing process. So whether to go in for another surgery to create a new rectum when things are healed or try and preserve as much as possible doing a process called hagyard dilitation.

Ava is getting used to her ostomy. This week we are trialing some different products of what work best for her, all trial and error. She’s doing very well with it so far, continues to play and roll over. She is only allowed sponge baths for now still, so we cannot wait till we get the green light on that which will be a few weeks.

She went for her first haircut Friday evening ☺️. Each day we are doing our best to go outside on the deck, even if it’s for a moment and get some fresh air. Ava continues to try new mushed up foods, her cereal is still her favourite of course.