Monday February 21,2022

Hello everyone,

We just got back from some follow up appointments at the Stollery this past weekend. We seen Avas Pediatrician Dr Chatur and the cleft lip palate speech pathologist Loredana at the Stollery. Each time we go to see dr Chatur we check on Avas development and do a full physical. Ava loves Dr Chatur and has such a good rapport with her. She is happy with her growth and development and progression with speech. We closely monitor Avas bowel routine and diet from her previous bowel surgeries that affect her day to day with constipation.

Loredana at the Stollery did a follow up with Avas speech. Biggest focus is we are waiting for an MRI with sedation at the Stollery and her upcoming surgery (posterior pharyngeal flap), but still have no dates. Biggest factor has been COVID when services shut down. We have been on the list since September. We have to do the MRI first to make sure Ava’s carotid arteries is not defected to where the surgery needs to happen (as this can occur with Avas history of anatomical defects). Ava was diagnosed with VPD (Velopharangeal Dysfunction), with results in abnormal air leaking through the nose, and is related to Avas digeorges syndrome. This needs to be closed surgically – which is done by a plastic surgeon at the Stollery. . It’s a 4-5 day inpatient stay.

This surgery makes Landon and I both nervous to go through, as airway is a “new” area for surgery. It brings a lot of anxiety to try and protect Ava from any pain or stress, as she has been through so much already. Once we know an MRI date, which hopefully soon.. we can prepare for this next big step.

Overall, Ava is doing really well with her speech sounds and growing. She loves her speech pathologist and therapy assistant who work with her 1-2 times a week. She has her occupational therapist who is working on potty training. Avas potty training has been slow and steady- but overall progressing really well. We are working to improve continence – as she has had extensive Reconstruction surgery to her rectum and sphincter. She wears liners all the time, which is part of her routine going to the potty. Her favourite – paw patrol panties- are a must LOL.

Ava really enjoys going to daycare and school to play with her friends during the week. It’s amazing how much she has progressed even in the last 3 months of her vocabulary. She loves to play with her paw patrol toys and her dinosaurs – from The Land before time. She is beginning to do more imaginative play like dress up, or pretend shopping at grocery store. Landon and I are so proud of how far she has come ❤️ will continue to update you all. ❤️