June 1, 2018 Friday

Hello Ava’s Army,

The last couple weeks we had many appointments at the Stollery. Her cardiology appt. was last week and went very well. Her ECHO of her heart showed very positive results. Her cardiologist discontinued her heart medications! Will monitor this for the next little while. Ava continues to grow and grow, in fact too quick. So much that now we have to “cut back” on calories, diluting her formula. (Sooo opposite from post heart surgery). Need a happy medium haha.

Her perineal wound is continuing to heal. The incision is almost completely closed, including her rectum. We met with the surgeon this week and the plan will be to go to the OR within 1-3 months and surgically re-do/create a rectum. Then let heal for 3-6 months. Will get more definite plans in a few weeks. We still have to do her dressing changes every time she pees through out the day and will for while yet. The skin will need to scar and toughen up. Her ostomy is still working well. Homecare comes twice a week to help out if needed. She loves to roll front to back/back to front constantly which doesn’t stop her with having an ostomy. We are finally allowed to let her sit in her bath tub, will do this in gradual steps and very brief periods. She sure misses her bath time.

With Ava growing, her sleeping schedule has been changing, she is sleeping throughout the night, giving mom and dad a break 🙏🏼. She sure loves the fresh air outside. Those hot spurts however were a bit too hot for Ava, especially with her ostomy appliance (thank gosh for air conditioning).

We are trying out different foods for her to taste and different textures to try. So far her paralyzed vocal cord is handling the consistency’s. She loves her fruits and vegetables. Her two teeth and coming in nicely ☺️.

Physio therapy came to our house last week and gave some more tips to help her gross motor skills. Her muscle strength is getting stronger, why we need to cut back on her formula concentration so it’s not too much- too quick. They were overall impressed with how well she is developing.

Our goal is to enjoy time outside as a family while we can with the nice weather before her next operation. Thank you to everyone who continues to think of us ❤️