Hey everyone !
It has been a while since we have given an update, I meant to do one earlier.. there has certainly been a lot going on especially with this pandemic.
Essentially for us no news is good news 🙏🏼👍. We have settled into Grande Prairie, with new jobs, house, and specialists. We had a couple big appointments done in January , cardiology and her pediatrician in Edmonton. Her cardiology appt included an ECHO ( which can take anywhere from 45 min to over an hour depending how cooperative the child etc) and an ECG. Ava did surprising well with her ECHO, cartoons and distraction was key haha. We sat down with her cardiologist after and he said overall her heart is doing well. It’s showing some thickening all around the heart muscle especially on the left side, and her ventricles and atriums are pumping adequately 🙏🏼. That was a very positive appointment which was wonderful. We had an appt with Dr. chatur her pediatrician and she was happy with avas growth and development. We are closely monitoring her calcium and vitamin D levels with blood work as her digeorges Syndrome is prone to lack Ava in these. We increased her supplements and have her pediatrician in Grande Prairie to help monitor.
While we were in Edmonton we were able to visit with friends and family which meant everything to Ava and us ❤️.
Ava has been doing well in Day care. She got approved for an aid in the mornings, which has been really comforting for Landon and I. She is in a program where specialists come to the daycare and work on the homework her Speech, OT, and Physio give us to work with her. Hey social skills and communication has improved a lot. She still cannot talk, but is able say “hi”, and point to what she needs. She can sound out most of the vowels which had been a huge step. It can be so hard at times when Ava gets frustrated of not being able to communicate what she needs to say. It can be exhausting, but we have found ways to adapt around. Speech had us incorporating an iPad for communicating which we are trying out.
With the pandemic initiated, it broke our heart as Ava was finally getting settled and we got all these services lined up. Day care is closed and we have Ava at home. We video conference frequent with her specialists and make the best of the situation. We were supposed to be in Edmonton for her follow up with Dr. Chatur (her Pediatrician ) but we postponed that to quarantine. We are following up with her pediatrician here for now.
We had to take Ava to the emergency room in March when she developed a high fever and rash all around which was painful for her. She got hand foot and mouth, which completely threw her sleep off. We are thankful it let to nothing more serious or a hospital admission.
As of right now, we are waiting for things to settle down and we will head back to Edmonton for her follow up. We are continuing with her many video conference appts with her specialists to keep her progress. The teddy bear fun run for the Stollery (May 9) which we were planning to attend has been changed to virtual. We are still raising money, donating, and will participate . Anyone who wishes to join our team we encourage! Ava’s army: http://events.stollerykids.com/site/TR/Events/Teddy_Bear_Fun_Run_2020?team_id=2588&pg=team&fr_id=1330
We are doing the best we can with how abnormal the world is right now. Keeping Ava home and protected is our priority. We miss all our friends and family right now. It is amazing to see Ava thriving and doing so well. We are so proud of her and how far she has come and healed. My heart goes out to any medical mom and dad who has their child in the hospital during this.