May 18, Friday

Another busy week in our household. Had a few appointments at the Stollery, follow ups with Ava’s Pediatrician and surgeon. So far they are both happy with the healing to the wound on her perineum. She is so resilient, it truly amazes me. We are to continue with the dressing changes every time she pees for at least a few more weeks. It is about 11-12 times in 24 hours we end up doing the dressing changes from the amount she pees due to her heart medication which makes a busy morning. Her ostomy is working very well so far. We are still testing some different products to see what will work best for Ava. Home care comes twice a week to help me change the appliance if need and bring me supplies for her dressings.

We met with the immunologist and found out Ava’s immune system shows improvement post heart surgery, which is so great. We were on some isolation for certain things for Ava to help protect her. Essentially her immune system is about 80 % effective , (used to be 60%). The immunologist is not sure if we will see any more improvement due to her digeorges syndrome. But at least this is more manageable now.

Last Saturday, we went to the Stollery teddy bear fun run. We are so glad we were able to go and bring Ava. She did so well being out, enjoyed the fresh air and some sunshine. That was the first time since birth she has had the chance to be able to be outside that long ( 4 hours). Landon and I got quite a system with her dressing changes and ostomy needs for travelling and it worked good. The event was amazing, a bunch of Ava’s baby friends were there as well as more friends and family, “Ava’s Army” 💪🏼. Will definitely make it an annual event .

It was so nice to be out as a family other than at the hospital at appointments. Landon, Ava and I all enjoyed it.

Ava’s been learning to sleep throughout the night which has been so nice, and her ostomy holds up well with that.

This last week my Dido passed away. It has been hard, and we aren’t able to attend his funeral with Ava’s needs here right now. It breaks my heart to not be able to be there.

Ava is continuing to grow and develop. She now weighs 17 lbs 5 oz , 65 cm long. She loves tummy time and playing with her toys. Her favourite word is still “mum”. It also looks like more teeth are coming in!