Hi everyone ! It’s been a while since we’ve done an update on Ava. We’ve been sure busy with our new addition, Charlie ☺️. Ava’s been so excited to have a sister. It’s amazing watching her bond with Charlie and be so caring and protective of her. It’s been incredible seeing Ava learn all these “big sister jobs”, like helping changing her diaper and feeding her ☺️❤️.

Ava’s started grade 1 in September and she’s been doing really well. She loves school. The structure, support, and social time with her friends has been amazing for her developmentally. Her speech/ vocabulary has come along way. She still does speech 1-2 times a week at home, and has speech support at school. We are unfortunately still waiting for her upcoming big surgery- posterior pharyngeal flap. This is to correct her velopharanheal insufficiency (VPI), which is when the sphincter between your oral and nasal cavities doesn’t close completely. It can make your voice sound nasally and cause speech problems. Luckily Ava hasn’t suffered swallowing difficulty , which can occur with this. We met with the plastic surgeon in July and his plan was to complete Avas surgery this fall, however we were just updated that it will be planning for January. There’s been a lot of delays with surgery bookings at the stollery, which is so disheartening. It’s hard to try and plan and prepare for, as we have Charlie now. We of course will take it as it comes, like we always have as a family. This surgery is about a 4-5 day inpatient stay at the stollery, and she will need to be out of school recovering for 2-3 weeks. This will all depend how her recovery goes. For now, we just wait..

We are booked to see the ENT at the stollery end of November for a consult for tubes in her ears. Ava gets hearing tests every 6 months as it is very common for children born with digeorges syndrome to have hearing issues. So far, her tests have been ok with just showing fluid build up.

In the upcoming year, Ava will be due to have her ECHO for her heart, post heart surgery. We have those every 1-2 years and following up with her cardiologist.

Throughout the summer, we’ve needed to monitor Avas iron. She’s had low iron throughout her life, especially post heart surgery. We’ve been noticing she’s had restless leg syndrome during the night, and has been very tired. Her iron results were extremely low beginning of the summer. It takes months to bring this up with kids, so we are just continuing with that. unfortunately this has been a rollercoaster with her iron.

Ava has come along way with her continence. She’s had extensive surgeries to her bowel/ rectum. She’s had significant improvement with interception. Before, she wasn’t able to realize she’s had an accident with stool or be able to vocalize it to us. She has gotten so much better with letting us know if she’s had an accident. This breaks my heart as this is something Ava has been struggling with essentially all her life which is out of her control. She has extensive scar tissue which makes it very challenging. She’s learning to strengthen this and get better control. She has amazing support at school to help her with this. Their priority is making her Ava has as much independence, and are discreet for her confidence. We continue the same at home, and are so proud of how far Ava has come ☺️.

Ava’s started dance class this year and is continuing gymnastics. She loves doing some extra curricular activities. She’s learning the days of the week and is understanding which days have activity’s.

We are looking forward to spending the upcoming holidays together as a family. Ava loves experiencing the new milestones Charlie is reaching. As parents, Landon and I feel Charlie is like “another first “ for us. This has been a completely different experience than Ava. We are enjoying making all these new memories as a family ☺️.

We will continue to update everyone on Ava. As always, thank you so much for your support ❤️

Hi everyone,

It’s been a busy last few months. Ava has been doing really well growing and developing. We took her for an eye appt and was told she needed glasses. Landon and I were both taken back as she never complained of her vision , she had just accustomed so well and that was “normal” to her. She adjusted really well to them and keeps them on all the time 🙏🏼 .

Avas been doing speech 1-2 times a week. She has shown significant progress with her vocabulary and sounds. She is in kindergarten 4 days a week, and day care on fridays. She absolutely loves school. The school is so amazing working with Ava, they are so patient with her. They work with her toilet routines and try to give her as much independence as possible.

We announced in the fall that we are expecting another baby. ❤️ We are beyond blessed. This was a big decision that involved a lot of consults and dr appts. As many of you know, Avas digeorges diagnosis was not detected in pregnancy. When Ava was in and out of hospital, surgery after surgery, it was not even a possibility to look at extending our family… our focus needed to be her and only her. Carrying another baby with fear of another diagnosis, or carrying another with “normal” ultrasounds and check ups was so scary for us. We met with geneticists and consulted OBGYNs. Last year we had moved forward, but had a miscarriage.. After almost a year, we were pregnant again. We have done extra genetic testing, and gone to the Royal Alex for ultrasounds. So far we have had negative results and everything looks good 🙏🏼 we also found out we are expecting a girl ❤️Ava is beyond excited. She is SO excited to have a sister. We are very blessed to be extending our family, as for the longest time we didn’t think this was going to be an option for us.

We were told initially that Avas palate surgery, posterior pharyngeal flap, would have been done before Christmas. The timeframe unfortunately continues to be bumped back .We were hopeful it was going to be before baby is born, but we were just updated that it is spring or summer… this devastated us.. to encounter another Stollery surgery is stressful as it is- but to juggle a newborn and on Mat leave.. we will take it when it comes- just like we always do🙏🏼. For now, hopeful we will get a surgery date soon.

An update with Avas hearing is that she is waiting a consult with ENT for tubes in her ears. We were told this is typical with her condition. Overall Her hearing continues to still be ok- which we are watching closely as it’s known to have abnormalities with digeorges syndrome.

Ava continues to love riding the bus to school😊 she’s made a lot of new friends in kindergarten. We have had her in gymnastics as her first out of school activity. She’s been having a blast, and we really enjoy going to watch her as a family 😊

As always, thanks everyone for the love and support for Ava. She’s been having a wonderful year and is really looking forward to her baby sister soon ❤️

Hi everyone,

We’ve had a nice summer together. Ava has enjoyed playing in the backyard in her pool, and going to daycare with her friends. We had some big appts and procedures recently.

First, she had her dental surgery july 18th at the Stollery. She did really well, and had healed up nicely. She had her 2 front teeth extracted and 2 more caps put on her bottom teeth. She was out under general anesthetic at the Stollery.

We had some time off together as a family since august 15th. Many of it was appts for little Ava. She had her MRI on the 15th at the Stollery, where the test was done with conscious sedation. she did really well, except it was delayed till 1245 that day and she was quite hungry and thirsty 😩. We met with the plastic surgeon the following week over ZOOM to go over the results. The MRI showed her carotid arteries are in the correct spot, not deviated anywhere, which is great. We are now in the green light to move ahead with the big surgery, posterior pharyngeal flap. This will help her velopharangeal insufficiency (VPI). The surgeon is hoping it can be done before Christmas. We’re just waiting for a surgery date for this. In the procedure, they graft a piece in the back of her throat to repair her palate. She will need to be admitted on the surgical ward for 4-5 days.

Ava also had a hearing test done at the Stollery. She really likes the audiologist Margot. She’s so good with Ava, and always gives Ava a toy after every visit ☺️. Both of Avas ears are showing some fluid in them that isn’t draining out sufficiently. We are to go back for another test in 4 months. If we are seeing the same results, then ava will need to get tubes in her ears.

We seen her Pediatrician in Edmonton , Dr. Chatur. She was overal happy with Avas development and her progress. Big step next is to have the posterior pharyngeal flap completed.

Lastly, we had an eye appt for Ava. We wanted to get her eyes checked before starting kindergarten. Ava needs glasses😕. She was excited to pick her glasses colour at least and try them on. Their ordered and should be here in a couple weeks. The eye doctor said she definately needs them, as she’s quite far sighted and has a high stigmatism. She never complained about her eyes. He’s got her on a high prescription. We are glad we got them checked, and are hoping this will help her in school 🙏🏼

She’s really excited to start kindergarten. She is also excited to take the bus 🚌. The bus comes right in front of our house, for pick up and drop off. The teachers meet her right at the bus at school and he’ll escort her in. Ava is set up with an aid for kindergarten. Shes so excited to see her friends again from preschool ☺️

She just had a big birthday, she turned 5️⃣. Can’t believe Ava is 5 now. She has come so far.. Landon and I are so proud of her and everything she has overcome ❤️

Hi everyone,

We are preparing for Avas dental surgery at the Stollery that’s this Monday morning. Due to her Digeorges syndrome and her cardiac history, she is requiring more extensive dental work.. has more cavities 😩. She is getting her top 2 front teeth extracted, and possible 4 more caps done. She is getting fully put under general anesthesia. Hoping she does well and recovers quick. 🙏🏼.

Her MRI of her carotid arteries is on august 15th. Once this done, we meet with the plastic surgeon to plan for surgery of her palate, which is a posterior pharyngeal flap. We have no date for this one yet. We are eager to have this done and over with. We are so discouraged ava has to go through another complex surgery again. It does not get any easier.

We had her ECHO at the Stollery recently which went really good. Ava gets scared coming into the hospital initially. Good distraction of cartoons and toys luckily help🙏🏼 her ECHO showed her heart is doing great, her bicuspid valve we are monitoring, and she has some small stenosis (narrowing). Overall was a great ECHO result.

Overall, she has been developing really well. Her speech has been progressing great. She has speech about once a week. She also sees her occupational therapist, which we have been working on potty training.

Ava loves going to daycare to play with her friends every day. We look forward this summer to play with friends in the sunshine and splash pool outside ☀️. Her 5th birthday is coming up August 21st. She’s growing up so fast ❤️☺️

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. ❤️

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😊.

Hello everyone,

We are in Edmonton and getting ready for Ava’s surgery tomorrow at the Stollery. She’s booked to get dental surgery done. She has about 7-8 cavities that need filled and caps on. She will be put under general anesthetic on Wednesday and we have a consult with the Pre-admission clinic with the Anesthesiologist this afternoon. We will go over Avas complex medical history. Unfortunately this is nothing new to her, or Landon and I. One thing that will be different is with COVID, only one of us can be in the surgery ward and OR waiting room. We were thankful with all of Avas previous surgeries that both us parents could be there as support for her and each other. We will do our best tomorrow🙏🏼

We are so happy to finally get her teeth fixed, she’s developed these cavities from her many surgeries in and out of hospital. Digeorges Syndrome also has deficiency in calcium which is linked. The dentist is hopefully we can fix her baby teeth and sustain till her adult teeth.

The plan is for us to take her home in the evening after her surgery 🙏🏼 this is our first day surgery and looking forward to cuddle in our own bed. This is Avas 7th surgery.. and she’s 3.5 years old. We will collect our Stollery treasure beads and add it to our keepsake ❤️. Keep her in your thoughts tomorrow. Will keep you all posted .

Hello everyone 🙂

We are finally discharged home as of this afternoon 🙂 We are so happy to give this update. Ava is doing much better and is eating and drinking well. We are all exhausted from the week and will try and catch up on some sleep this weekend. Her blood cultures came back negative after 48 hours. She had more blood work drawn this morning and it was all improved. The Pediatrician looking after her in hospital was happy with her recovery. Her Pediatrician in Edmonton, Dr. Chatur and her Pediatirican in Grande Prairie were both following her results while she was in hospital which was comforting. The doctors think this was a bad virus that got to her. She has been hospitalized from viruses a few times already, can be easy to catch. It’s hard with complex kids like Ava that a virus on one child can act very different on another.. like Ava, She amazes us with her bravery and strength. She is definitely traumatized from all the PPE and scary “pokes” and “prodding” that happened… At least we are home now and in our safe place. She was so excited to go to her room and play room. All her toys were exactly as she left them waiting for her to come back. She was so excited to see her dog and cat waiting for her at the door.

We are booked for a follow up next week with her paediatrician in Grande Prairie and then going to Edmonton Middle of May to see Dr. Chatur (Her primary Pediatrician).

We thank everyone for all the thoughts and prayers for Ava. We appreciate all the comments from her blog, and all the wonderful care she received at the hospital from the staff. #

#Avasarmy.

Hello everyone,

We had to bring Ava to emergency on Monday in the afternoon. She had developed a fever for over 24 hours and was lethargic and dehydrated. We got admitted to the Pediatric ward in isolation. Her COVID test and RSV was negative 🙏🏼 however unsure what was causing this. My instinct was Ava has a history of severe UTIs with her urinary reflux, however she was clear. For now monitoring her fever, antibiotics, and fluids.

She’s doing so much better today. She keeps saying “mommy daddy, home ?”. And wants to go back to “preschool”. She was very traumatized from all the poking and assessing yesterday. This is heart breaking to see her scream “don’t want it”, especially from what she has gone through. None of this was her choice. However we are getting through, together as a family. Hoping to go home soon. Miss our animals, our beds, and bathtub.

We are so careful around Ava, extra cautious with sanitizing and keeping clean. I am fully COVID vaccinated and Landon just got his first dose Monday as he qualified as a caregiver for a child under 11 who has chronic conditions. Avas immune system has been getting stronger, however when something hits her, it hits her hard. 😞 eager to be back home.

Thanks so much for all the love and support. Will keep you updated Xoxo

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:)