Hi everyone,

We’ve had a really nice summer so far 😊 Ava has had some follow ups and also another surgery.

On Aug 1, she had bilateral myringotomy and tympanostomy tubes ( which are ear tubes). Ava has been getting hearing tests ever since she was almost a baby as it is common for children with digeorges to have hearing deficiencies. The last few tests have been flagging fluid in both ears. The ENT suggested tube placement and luckily we only waited about 4 months. This is Avas 11th surgery. Luckily, this one is minor and quite common. However, the following day after surgery was quite hard on all of us. Going back into the OR is quite a trigger emotionally. For Ava, myself and Landon… entering that OR room is traumatizing. The pre-op questions, IV starts, pre-op meds. Immediate PTSD from her emergency surgeries .. the lights, noise, smell. Handing your child off to a stranger to put to sleep. She starts to cry in fear, I start to cry leaving the room. These emotions stay with us. But we got through. She’s noticed her ears feel “clear”, but they’re just sensitive in water, even in the tub.

Ava had an ECHO in August at the stollery. This was her yearly ECHO checkup with the cardiologist. Overall, her heart is functioning well🙏🏼. He said it’s common for her age with her repair to potentially deal with tachycardia (a racing heart beat). So something we need to watch for.

Avas planning to see the SLP at the stollery in October, Loredana who specializes in palate surgery. this is a follow up from her posterior pharyngeal flap surgery in January to see progress how her speech is with the surgical corrections. Throughout the summer, ava had speech about every week still at our house to continue her progress. With school started, she is doing speech there twice a week.

At school, Ava has an aid who supports her with her academics and also her toileting. She has come such a long way with her toileting. She is still learning her own interception with toileting, and getting better control and independence.

This fall, Ava is so excited to start dance (tap class), begin piano lessons, and do swimming lessons.

Avas had an exciting opportunity with the Stollery this summer. She has become the Stollery “mighty kid” ❤️🥹. She did a photo shoot with a photographer, and a videography commercial with us as a family. Her picture is seen throughout the Stollery elevator doors, campaign posters, and at the Mighty million house. We got a picture of course with Ava beside her picture 🥰. She’s so excited. On October 24th, Ava and us get to be on CTV morning live to help promote the stollery at the mighty millions house. We are so proud of her 🥹.

One more exciting thing is Ava has been granted a wish from “Make a wish Foundation”. She was told this just after New years. We were blown away! Make a wish met with Ava via zoom and asked her all what she would like for her wish, and got to know her. She was granted to go see Disneyworld, including Landon Charlie and I!❤️ They were amazing and asked what timeline worked for us. Ava loves Christmas, including all of us. We decided the beginning of December. It gave us enough time to get both of Avas surgeries complete that she needed this year, and he cleared to fly. Avas never been on an airplane or left the country before. So this will be SO exciting for her and all of us to experience together 🥹❤️.

Thank you everyone for always thinking of our little girl ❤️❤️

Hi everyone ,

Avas about 6 weeks post op since her surgery January 31st. She’s done so well recovering and tolerating the pain quite incredibly. She had a posterior pharyngeal flap which is where they grafted a chunk of the bottom of her throat and used it on her palate. So essentially her entire top and back of throat was all cut open and had stitches.

At 10 days post op, a section in the back of her throat had opened up, which gave us quite a scare.. we’ve encountered a major dehiscence with Ava after her anoplasty surgery which haunted us. When we noticed this opening, we immediately called her surgeon and Pediatrician and they said to come to Edmonton to have it looked at. Ava and I drove while Landon and Charlie stayed back. I must note- travelling with Avas pureed diet was not easy and definately challenging. As the only thing we could order at a drive thru was essentially smoothies. But we packed as much as we could and got through 🙏🏼. When we got to Edmonton, we were fortunate that the opening in her stitches was superficial , meaning that it was quite close to the surface and the stitches behind it were still intact and already starting to heal 🙏🏼. We were to monitor closely and continue with her pureed soft diet.

On march 1, we went for her 4 week follow up and everything went well. Avas throat is healing very well and that opening we seen couple weeks prior closed on its own 🙏🏼. Ava has been cleared to resume her normal diet and activities 🙏🏼. She was so excited to get a cheese burger haha. She’s been back at school and enjoying being back with her friends.

The surgeon said that we may not notice a difference in the sounds from her speech till 3-6 months. We have started speech therapy at school everyday and at also at home. We are in the rehab stage which will just take time. We go back to Edmonton mid April to see the surgeon and also the SLP Loredana who specializes in palate surgery.

Thank you to everyone who has reached out asking how Ava and us have been doing ❤️ it means the world to us ❤️

Hi everyone,

We are 1 week post op from Avas surgery. We seen her Pediatrician monday morning and he said the stitches that he can see are healing good 🙏🏼. Avas been better with initiating fluid intake and is more interested in some food. She is on a pureed diet for 3 weeks after surgery.

We drove home after her doctors appt Monday, we are so glad to be home. Ava right away grabbed a costume from her playroom and put it on and started to play. She is definately more “herself” especially in our home environment.

This surgery Landon and I wasn’t sure what to all expect with Ava, as we were used to her being little (3 and younger) with our other admissions. Some positive things is Ava can talk and tell us what hurts or what she needs. It’s not a giant guessing game on our instincts for Ava. She also was ambulatory and wasn’t pushed in a stroller. It was hard juggling Charlie as well, but we were so thankful for my sister to help during the day care for Charlie so Landon and I both could be with Ava at the hospital 🙏🏼🙏🏼. I got to do her medical beads with her which was really special❤️ this is her 10th surgical bead chain.

This week, we are just focusing on hydrating and oral intake. Avas eating is much slower with all her incisions inside her throat and is eating small meals throughout the day. Patience and taking her time will be the key these next couple weeks. We will be working on some school work to try and catch up once she’s feeling up to it.🙏🏼

We see her doctor here in Grande Prairie next week for a follow up, and then in one month see her Pediatrician and surgeon in Edmonton. For now, we just take it is and let things heal 🙏🏼🙏🏼🙏🏼❤️

One more thing I wanted to share is Ava has been granted “a wish” from the Make a Wish Foundation 🥹❤️. This is such an incredible honour to Ava and us. This week we have a virtual meeting with the wish granters to start the process. This is a great distraction for her to focus on. Ava has been through so much as a child, and we are so grateful to have this amazing opportunity given to her.

Thank you everyone for checking in on Ava after her surgery. We appreciate all the love and support for our little Ava❤️.

Hi everyone,

Last night Ava had a better sleep🙏🏼. Some rest gave her some more energy today. Her surgeon and Pediatrician did their rounds this morning and both agreed she needs to drink more today. Ava got a bunch of sluff around the incisions which was expected post operation and was uncomfortable to wash out 😩. We tried some more sips of water and popsicles. Movies on her iPad has been essential for distraction 🙏🏼🙏🏼. We took her to the playroom in the morning and afternoon. It’s amazing what a change in setting from the hospital room and toys/games can do for a child undergoing hospital care. She was excited to see the other kids and see sunlight through the big windows. We unhooked her IV and gave her some freedom.

Her surgeon came by late afternoon and said that he thinks she would be ok to go home tonight. 🙏🏼 We need to keep up with her fluids, slowly introduce more pureed foods, and give pain medicine. We have to stay in Edmonton till Monday just in case any concerns and see her Pediatrician Monday morning before we head home.

We are all settled this evening, it’s been a big day. Ava and Charlie were both so excited to see each other 🥹. Charlie started to recently crawl and immediately crawled up to Avas leg and held her. Ava complained of a lot of pain this evening and didn’t have any interest in food. Her pain tolerance blows my mind from what she has all been through in her life. Hoping tomorrow she will drink more and have some more to eat. 🙏🏼 We are thankful to be all together tonight.

We have a long road ahead with Avas healing. She misses going to school and all her friends there. We will take each day by day 🙏🏼 thanks everyone for keeping Ava in your thoughts and prayers. We really appreciate it ❤️🙏🏼

Hi everyone,

It’s been a long 36 hours, as Ava had her surgery yesterday morning. Last night was pretty rough 😞. She was in quite a bit of pain to the incisions in her mouth and throat. Getting any sort of oral intake or medications was extremely tough. From the surgery, the completed work has essentially “sealed off” the hole that needed to be grafted. So this creates an excessive amount of snoring. So on top of her pain, she would wake up to her “new breathing” and be startled, then swallow and start to cry… it was a long tearful night. This morning we took a positive turn. She tried some frozen pedialyte freezies which she was able to tolerate slowly🙏🏼. Then she took a spoonful of pureed toast. Throughout the day Landon and I encouraged as much as possible fluids. She tried some mashed potatoes.

She had the energy this afternoon to go to the playroom and make slime with child life- which brought the biggest smile to her face 🥹. We were finally starting to see our little Ava be more herself. ❤️🙏🏼She did a couple walks, went to the healing garden, and got to go pick a toy from the gift shop. She is still on IV fluids to keep her hydrated as her intake is still not sufficient enough, but we have come a long way since last night 🙏🏼.

Avas strict diet for the next 3 weeks will be puree. She will need to protect her incisions in her throat and mouth.

Let’s pray for a better night tonight for Ava and a good nights sleep 🙏🏼❤️

Hi everyone,

Ava had her surgery today here at the Stollery, the Posterior pharyngeal flap. She was so brave coming in and did really well pre-op. She tolerating going to sleep very well in the OR, me of course had eyes filled with tears. It is so hard to hand your child off to the doctor in the OR and leave them.

We got admitted and are on 4D , the Peds surgical unit (we are quite familiar with it unfortunately). It’s been a tough afternoon.. Avas been complaining of a VERY sore throat from the incisions. It’s like knives for her to swallow and drink. She’s had little to no fluids and is mainly relying on the IV today to hydrate. There’s been lots of tears 😢. We are hoping she can get a good nights rest and have a better morning. 🙏🏼

The surgeon and her Pediatrician have both assessed her this evening and will see her tomorrow morning again.

Child life came by and brought ava some games and toys for when she’s feeling up to it. 🙏🏼

We will keep you all updated how she’s doing. Thank you all for your kind words and prayers for Ava ❤️🙏🏼

Hi everyone,

We got a new surgery date for Ava 🙏🏼, January 31st, 2024. We just found out and are eager to get her operation done. It’s been a rollercoaster of emotions for our family. Being mentally prepared to take on this surgery for Ava, get to Edmonton and then was cancelled. Over Christmas we were told from the surgeon that it was likely Ava wouldn’t get scheduled till the spring. Landon and I sat with just sadness and frustration as our lives are essentially put on hold till something comes up. It’s impossible to plan anything as a family with a known surgery and no date. Luckily we are going sooner than expected 🙏🏼. We will be leaving Jan 29th to Edmonton as we will need to do the pre-admission clinic again prior to surgery.

We are pulling Ava out of school a week and a half prior to us leaving so she can isolate from the viruses and stay healthy. We will be essentially doing all we can. She will be missing about a month from school for this. We will be eager to get back home and heal once she’s discharged from the hospital.

We will keep everyone up to date once she goes into surgery🙏🏼. Thank you all for the love and support for our little Ava ❤️.

I can’t even believe I’m writing this, but we got a call that she’s cancelled this morning. The doctor did swabs yesterday, and they came back with Rhinovirus. She’s had this for over a week and and is significantly better, but the surgeon and anesthesia said it’s honestly too risky with her airway and history.

We’re devastated as we are here already and we’re already packed up to head to the hospital, but are thankful the doctors made the call for Avas ultimate safety.

We are on the priority list to get her surgery again, but will be unfortunately going home this morning.

Avas devastated , we’re all devastated.

We will keep you all updated. Thank you for all keeping her in your thoughts and prayers this morning. We appreciate all the love and support for her as always ❤️ we will be back again and try this all over again.

Hi everyone,

We just got to Edmonton yesterday, Ava’s surgery is finally tomorrow. The posterior Pharangeal flap. We’ve been on the wait list for so long.

We are all settled at the Ronald McDonald House. We are close by the stollery which is so nice 🙏🏼. This place is really amazing. It’s just what families need who have her kids in the hospital. It’s incredible what they all provide and help out with. They had arts and crafts for the kids, amazing meals, and presents for them all. She loved looking for the elves this morning, as the house has their own🎄🎅🏻.

Today we had Avas Preadmission clinic appt at the stollery. She unfortunately caught a cold last week. She’s had a cough and congestion what has not been ideal. Luckily we’re on the tail end of it as it’s been a full week now. Anesthesia said she should still be ok for surgery tomorrow. It makes us all anxious as her throat is the area they’re operating on. We are hopeful she will be strong with her recovery post op.

We are second case tomorrow. We have to be there at 730am, and OR at 9am. It’s a 2 hour operating time. We will be so eager to see her once she’s out.

This is Avas 10th surgery. 8 of them being extensive ..

It’s never easy walking your child down to the OR table, handing her to the physician and watching her fall asleep, I always leave in tears.. this brings back so much trauma our family has gone through.

Avas been through so much. She’s so brave, kind hearted, and resilient. Seeing her today in the preadmission clinic made me think how far she’s come. Please keep her in your thoughts and prayers for tomorrow morning. We will keep you all updated .❤️

Hi everyone ,

We wanted to give an update we have on Ava. We got a call from the Stollery recently that she has a surgery date! It’s Dec 6th ,2023. This is the Posterior Pharyngeal Flap done by the plastic surgeon at the Stollery. A Posterior Pharyngeal Flap is a surgery done to help correct velopharyngeal dysfunction, or VPD. VPD occurs when the soft palate cannot properly separate the back of the mouth from the nose during speech. We’re excepted to have a 4- 5 day admission stay. We will been seen at the Pre- admission clinic before her surgery date.

Landon and I are both anxious and scared. Surgeries with Ava open many traumatic doors for us from her past history. We pray everything will go smoothly for us and we can be home as soon as possible to recover before Christmas. Ava will be sad to miss most of Decembers school, but we will watch every Christmas movie possible 🎄. We will keep everyone updated once we’re admitted and let you know how she is. Keep Ava in your prayers for her upcoming surgery.

Thank you everyone ❤️