Monday, September 20, 2021

Hi everyone,

Ava has just turned 4 and is growing up so fast 😊 she has had fun this summer enjoying outside, playing in her backyard, and her friends at daycare. She is back in pre-K at Harry Balfour in the PUF program. It has been a busy/exciting start to September.

We are on our way back from Edmonton as Ava had an important appointment with a plastic surgeon and cleft palate specialist. Early spring, Ava was detected of having a possible soft palate defect which may indicate the need for surgery. We had a scope done by the plastic surgeon this morning and they confirmed she has a defect of her soft palate. So what this means is we need an MRI angiogram done with sedation first to determine if there is any anomaly or defect to her carotid artery in the back of her throat. With her condition digeorges syndrome, it can happen that organs/arteries are misplaced or located slightly off to their intended space in the body. Therefore we need the MRI to give that confirmation to go ahead. Without this surgery, Ava will be unable to make certain high pressure sounds correctly like “s” for instance. This is not a simple surgeries, it’s grafting muscle behind her throat to close the gap. It’s called a Posterior Pharyngeal Flap done by a plastic surgeon. It’s a 3-4 admission stay at the Stollery. We will have quite a wait, thanks to COVID, for the MRI and surgery 😞. For now we will continue intense speech at school and twice a week at home with our speech therapy team. It’s been tough to digest “another major” surgery for Ava… just hard.

In the last 2 weeks we have been working on potty training with Ava. She had started to show interest seeing the other kids at school go on the toilet. We went into this unsure Ava’s continence potential due to her rectum and Sphincter being complete reconstructed snd compose entirely of scar tissue. So far she is doing really well and is currently in panties during the day 😊 we are SO proud of her and she is so proud of herself. We have some poop accidents , but so far HUGE progress. We are thankful for the aids at daycare and school who are so patient with her.

We are doing our absolute best to keep Ava safe with COVID. We are trusting the school with their protocols to keep her safe. We are taking it day by day, for now school and the safety protocols is helping her develop with her speech.

We will follow up with our Pediatrician in a few months again and see if any update with her MRI to come. She had a hearing test a month ago which went well and so far normal 🙏🏼 as hearing is a common concern with digeorges.

Will keep in touch😊 for now will continue to have fun on the potty😊.