Saturday March 27, 2021

Hello Everyone!,

These past few months have been very well with Ava. Since her emergency air ambulance to the Stollery in September, she has been doing good. She has been at daycare and preschool which she enjoys very much. She has made so many friends and interacting with them which is very positive for her development. The pandemic has made us very cautious of this, sending her to daycare and school. We are fortunate she has an aid at Daycare and school who can be a close eye on Ava with sanitization. We continue to manage her constipation she faces with her many bowel surgeries. So far she is doing well with that. She has been enjoying walks outside, playing with her toys, and FaceTiming her relatives. Her speech has been progressing substantially. Last fall Ava was saying about 50 words and now she can say close to 150. She has speech twice a week and gets speech therapy everyday at preschool. Landon and I are so grateful to hear her talk and try new words. It is such a difference to when she was non-verbal for so long.

We had some appointments in March at the Stollery. She seen her Pediatrician, a Speech cleft palate and Audiologist. With her digeorges syndrome, it is common to have hearing defects-therefore she has hearing tests every 6 months to closely monitor. Her paediatrician was happy with her overall growth and development! Yay 🙂 The reason we seen a cleft palate specialist is her speech pathologist is detecting that certain sounds Ava makes goes straight through her nose. This has to do with her soft palate. The cleft palate specialist had Ava say specific words/sounds and said she notices this as well. She is referring Ava to a plastic surgeon and this most likely requires surgical correction.. We will know confirmation after imaging and do a laryngoscopy to visualize better.

My heart sunk. Another surgery.. And of course with COVID only one of us between Landon and I are allowed in the appts. It was so nice before when both parents could listen in on specialist appts. When Ava was diagnosed with Digeorges I remember cleft palate was a common defect with this condition and we were thankful at the time Ava didn’t have this. It is just so scary learning more defects that come with Ava’s condition and learning to adapt to them. She just amazes me with her strength and bravery. She doest let one thing slow her down or weigh her down. She is just a kid being a kid..and learning to manage many things that other kids don’t have to face.

In June, Ava is booked for Dental surgery at the Stollery. Luckily this is a day surgery. We have never had a day surgery before, they have been all inpatient stays. They need to put her to sleep and fix multiple cavities she has (most developed overtime from her stays at the hospital). This will be a trigger to me handing her off to the surgeon from what we have had in the past. Handing her off when she was septic and had her perforated bowel and her open heart surgery was the absolute hardest thing I could ever do. We have been through so much and will continue to get through it as a family.

As always we thank everyone who loves and supports Ava with her journey. Ava has missed seeing her Aunties and Uncles from Edmonton and all her friends in Fort Saskatchewan. We hope things will settle with COVID soon.

We will keep you all posted of Ava:)