Hey everyone !

It has been a while since we have given an update, I meant to do one earlier.. there has certainly been a lot going on especially with this pandemic.

Essentially for us no news is good news 🙏🏼👍. We have settled into Grande Prairie, with new jobs, house, and specialists. We had a couple big appointments done in January , cardiology and her pediatrician in Edmonton. Her cardiology appt included an ECHO ( which can take anywhere from 45 min to over an hour depending how cooperative the child etc) and an ECG. Ava did surprising well with her ECHO, cartoons and distraction was key haha. We sat down with her cardiologist after and he said overall her heart is doing well. It’s showing some thickening all around the heart muscle especially on the left side, and her ventricles and atriums are pumping adequately 🙏🏼. That was a very positive appointment which was wonderful. We had an appt with Dr. chatur her pediatrician and she was happy with avas growth and development. We are closely monitoring her calcium and vitamin D levels with blood work as her digeorges Syndrome is prone to lack Ava in these. We increased her supplements and have her pediatrician in Grande Prairie to help monitor.

While we were in Edmonton we were able to visit with friends and family which meant everything to Ava and us ❤️.

Ava has been doing well in Day care. She got approved for an aid in the mornings, which has been really comforting for Landon and I. She is in a program where specialists come to the daycare and work on the homework her Speech, OT, and Physio give us to work with her. Hey social skills and communication has improved a lot. She still cannot talk, but is able say “hi”, and point to what she needs. She can sound out most of the vowels which had been a huge step. It can be so hard at times when Ava gets frustrated of not being able to communicate what she needs to say. It can be exhausting, but we have found ways to adapt around. Speech had us incorporating an iPad for communicating which we are trying out.

With the pandemic initiated, it broke our heart as Ava was finally getting settled and we got all these services lined up. Day care is closed and we have Ava at home. We video conference frequent with her specialists and make the best of the situation. We were supposed to be in Edmonton for her follow up with Dr. Chatur (her Pediatrician ) but we postponed that to quarantine. We are following up with her pediatrician here for now.

We had to take Ava to the emergency room in March when she developed a high fever and rash all around which was painful for her. She got hand foot and mouth, which completely threw her sleep off. We are thankful it let to nothing more serious or a hospital admission.

As of right now, we are waiting for things to settle down and we will head back to Edmonton for her follow up. We are continuing with her many video conference appts with her specialists to keep her progress. The teddy bear fun run for the Stollery (May 9) which we were planning to attend has been changed to virtual. We are still raising money, donating, and will participate . Anyone who wishes to join our team we encourage! Ava’s army: http://events.stollerykids.com/site/TR/Events/Teddy_Bear_Fun_Run_2020?team_id=2588&pg=team&fr_id=1330

We are doing the best we can with how abnormal the world is right now. Keeping Ava home and protected is our priority. We miss all our friends and family right now. It is amazing to see Ava thriving and doing so well. We are so proud of her and how far she has come and healed. My heart goes out to any medical mom and dad who has their child in the hospital during this.

Hey everyone !

This last month has been so busy, we made the move from Fort Saskatchewan and settled in Grande Prairie Nov 13th. Poor Ava ended up in an arm cast Oct 28. That was extremely unfortunate.. she didn’t have a big fall. Her pediatrician Dr chatur did blood work which showed her calcium and vitamin D were low, which can happen with her condition – digeorges. We adjusted her medications. The cast limited her with things her occupational therapist would have liked to work on with fine motors with both hands, but we adapted and did the best we could. The cast came off Nov 25 and she did very well. She was so happy to have a full/normal bath again.

We had a follow up with her surgeon and he was very happy with how things have healed. Her rectum is stretching and growing while her body grows- which is amazing. The worry was whether or not the scar tissue would be elastic with her growth- thankfully it has shown so far 🙏🏼.

Dr chatur will be her main pediatrician in Edmonton at the Stollery. She referred us to a pediatrician in Grande Prairie to monitor her there inbetween appts and with any concerns. He deals with complex children and will work together with Dr chatur. We are in the process of getting speech pathologist and occupational therapy in grande prairie. She is enrolled in the early intervention program there as well, like we were in Fort Saskatchewan.

We have decided that we will try to put Ava in a Daycare part time. Her pediatricians have recommended regarding to enhance development and communication. All child care options have pros and cons- day care can bring risk catching colds/ flu’s more. This is something we will attempt and monitor. Ava will qualify for an Aid at daycare to work with her, which will be a significant advantage to her health and communication. She is still nonverbal, using sign language to communicate. We have made a lot of progress with her speech in beginning to initialize sounds, just no words yet.

We finally got into a program called FSCD- Family services for Children with Disabilities. This has been a long wait. We had our first appointment of getting a case worker for Ava and building a contract for the needs she requires. Basically this program gives Ava funding and services that will help her. This service will help pay for her aid, speech and OT, that we have been paying out of pocket for. It will also help us with an equipment or tools she may need and when she starts school.

We are finally all settled in our new house in Grande Prairie. Ava loves her new room, play room, and Christmas tree. I had began work at the hospital and Landon will be commuting back to Fort sask till the end of the year while we own that shop till the transfer over to Grande Prairie. We thank everyone for the help and support with our move, and settling in. It is stressful starting with new specialists here for Ava , but excited to start a new chapter and adventure for her. She has grown so much in the last few months. We are blessed to have such a strong, courageous little girl.

Hello everyone!

Ava turned 2 Wednesday!! We can’t believe she is already 2. We had a birthday party with her friends at an indoor play place in Edmonton and she had a blast. Ava has been enjoying all her freedom of play, running around, and just being a toddler 😊. We have had a nice summer enjoying time at the parks and playing with her friends and family.. and of course no hospital visits 🙏🏼.

We see her Speech pathologist every week which has been going well. Ava does sign language to communicate with us. It is extremely helpful to relieve her frustration she has of not talking yet. (For example- eat, more, all done, please, thank you, drink). Speech gives us specific homework that Landon and I work with her.

We have lessened our Pediatrician appointments to every 2 months which has been great. Dr chatur has been so happy with Ava’s growing and development, and especially healing after her surgery in March. Her scars on her stomach are beginning to lighten and smooth out. We are booked to see her surgeon beginning of October for a follow up. He will evaluate how well her rectum is growing with her size, with the large amount of scar tissue down there. So far she has been pooping great. She continues to get a daily laxative and antibiotic for her kidneys.

I am going back to work this Monday! Ah it’s crazy. We have had our nanny start with Ava so she can get used to Ava and vice versa. So far it has been going great. It’s going to be hard with me back at work away from Ava, but we will both adjust to the time away from each other.

Landon and I both have some exciting/huge news to share with everyone! Landon has been offered to take over ownership of the Grande Prairie Fountain Tire Truck Center, which we accepted. This transaction has been in the works for a while due to Ava’s health concerns. Her Pediatrcian and Surgeon have been consulted and have agreed she is safe to go at this point in her journey☺️. We will need to come back and forth to see her pediatrician, surgeon, and many other specialists. We will have a Pediatrician in grande prairie as well to work with Ava that Dr. chatur referred us to in between. Ava will continue to see speech and occupational therapy regularly in grande prairie. This was an extremely hard decision to make as the Stollery was our safety net here in Fort Saskatchewan. But the resources and support in Grande Prairie are continuously growing and improving for medically complex children like Ava.

The transition will take place at the end of the year. It has been a whirlwind to say the least the last few months in the Deley household haha. We are beyond thankful that Ava is doing so well medically that we could make this decision. We cannot thank everyone enough for the love and support that we have received over the past 2 years of Ava. We still continue with this support and we are beyond thankful for it. We will be back and forth many times to visit with our close friends and family here in fort Saskatchewan and Edmonton area. We will continue to update Ava on her progress 😊❤️

Hey everyone!

Finally Ava’s cast came off yesterday 🙏🏼🙏🏼🙏🏼. It stayed on a bit longer than expected- just over a month. Just glad it is off. She started walking on it right away. She got a sore on her heel from her cast that wore right through it when walking, but it’s already looking better today. She was very scared of the cast cutter, but overall did so well. So thankful she could FINALLY have a bath. Boy oh boy her leg needed a good wash haha. Extremely hard to keep toddlers clean after meals without having a “full bath”.

We had a couple appointments this last week. She seen her pediatrician and occupational therapist. We are arranging for Ava to see a speech pathologist. It is common for children with digeorges syndrome to have delayed speech development. Her pediatrician is impressed from how well Ava is doing with all her surgeries and hospitalizations she’s had regarding her development. We are booked to see speech beginning of July and eager to have them work with her.

Ava has been doing so well since her last surgery, the ostomy reversal. Landon and I can’t believe we are finally at the stage of deciding child care for her. It’s so nice to be at this point. Most parents make this decision at 9 months or a year. I have been off work for exactly 2 years now. We have decided to get a nanny that comes to the house and look after Ava. It will give us more comfort and hopefully make the transition of me back to work better. I’ll be planning to go back to work end of summer. This is scary but exciting. So thankful how well Ava is doing right now. We look forward to having a wonderful summer in the sunshine, playing in the water, and running in the grass. We plan to cherish every moment and enjoy all the time we have together before we are both back to work. Landon and I can’t believe how much Ava is growing up. She’s going to be 2 this August. Beyond grateful for her health and all the positives❤️

Hey everyone,

So today we ended up in the Stollery emergency.. and ended up coming home with a cast. Ava broke her leg😩😭. OF COURSE this had to happen. She broke her tibia and fibula- a buckle fracture. We had an accident at home and she fell off the change table onto her side… Thankfully she didn’t hit her head first. She has such a high pain tolerance that it’s so hard to tell how much really hurts! She was such a trooper today with x-rays and when they put her cast on. Of course we needed a ‘pink’ one 💁🏽‍♀️.

She was just getting a good taste of outside, swimming, and running around. She will be able to weight bear once her pain subsides. The Peds ortho tech gave her a ‘Little boot’ to help her walk once she can (gives her some grip). No baths for her😩. Ava after procedures/surgeries does not like the word REST. Will be cartoons in this house hold for a bit till she gets back on her ‘feet’- literally… So proud of her strength and bravery.

Definitely bad luck, and feel guilt of this. Was a complete accident, awful it had to happen to her 😔. No matter how careful and protective you are, accidents happen. Hoping for a speedy recovery and to see her up and walking soon adjusting to her cast. We were told she needs it for 3 weeks. Thank you for all the love and kindness. ❤️

Hey everyone,

The last month has been going really well here. Ava’s abdominal incision is all healed up, all the stitches are finally dissolved. Her bum is also finally healed 🤗. It took till 2 weeks ago ..believe it or not. But man oh man is it nice to just use “wipes” and simply “wipe her bum” instead of all the interventions we had to do. The changing table has become way more positive for Ava. No more distractions needed for procedures. This has been a nice change for our family.

She had a follow up with her pediatrician this week and it went good. She is happy with how things healed up and her consistency in her bowel movements. We will continue to monitor her diet and laxative dosing as she grows. We still don’t need to do dilations right now which is a blessing🙏🏼. Will be more challenging to do it as Ava gets older with fighting it. We see her pediatrician in a few weeks and occupational therapy at the end of the month.

We had a busy month of outings and travelling. This is honestly new for us.. we have never taken Ava to a hotel setting before. We went to jasper during Easter which Ava did really well. We also went up to our home town spirit river to visit family. A normal thought process for us is “what if she gets sick? Do we have everything in our medical bag? Where’s the nearest hospital if we needed?”. It is a slow process changing our thinking patterns, we have needed help from our therapists with this from the trauma and negative situations we have faced. Ava did really well those weekends. So fortunate as Landon and I needed those positive steps to happen.

We are so thankful for everyone who joined “Ava’s Army” and came to participate in the Stollery Teddy bear fun run May 11. We had 70 people join us in the 5 km walk and raised $4446. Landon and I were overwhelmed with the support. It meant the world to us having Ava walk across the finish line with everyone cheering for our little “warrior”. It was such a wonderful day, thank you from the bottom of our hearts ❤️.

Lastly I have to share how we finally were able to take Ava swimming for the first time! 🤗 she loved it. It was so much fun, something we have been looking forward to in a while ❤️. Will keep in touch Ava’s progress. 👍 we can’t thank enough to everyone for the continuous support of Ava❤️

#avasarmy

Hello everyone!

Ava is doing really well right now 😄❤️. She has been cruising around everywhere! She can’t get enough of walking haha. It’s so wonderful to see. We took her to the park a few times already and she loves the swing. Landon and I both said to each other how nice it is to see Ava just have fun outside and “be a toddler”.

Her abdominal incision has healed up. Some stitches are still there, they take 6 weeks to dissolve sometimes. Her bum has had ups and downs. Her rash has improved from a couple weeks ago, but it is still there to where we do sitz baths and blow dry her bum while we can during the day. We felt pretty stuck here at home doing this for a while. It’s tedious and annoying for her, but it helps the most, so we will make it work! We seen her pediatrician today and her surgeon for follow ups. They were both impressed with how well she is doing. Her surgeon said that her scar tissue is stretching appropriately in her rectum when she bears down to poop. He did an exam today which she was not fond of 😩. We are to hold off on dilations and continue monitoring her pooping to keep her rectum hole size patent while she pushes. The next steps is to see how her scar tissue stretches while she grows. This will determine whether or not we will have to do dilations as she grows to assist this or surgical fix. For now, it’s doing what it needs to do 🙏🏼. Her occupational therapist is coming the end of the month.

Ava takes laxatives every day to help regulate her stool consistency. In the last week, we have seen regularity with her stool. We have been able to trouble shoot constipation episodes with diet and tweaking her laxatives. This will be ongoing for Ava for the rest of her life. With being post op a month, she has been proving her continence. However we will only know this more accurately when she grows and we beginning potty training. We will wait some time to continue to let her body adjust.

We have been cautious with germs and keeping clean with Ava. It’s so easy for Ava to get sick, and when she does..she gets really sick. She caught a gastric virus for 24 hours a couple weeks ago and Landon and I got so scared we were going to have to take her in. It’s incredibly scary to us when she is unwell as she deteriorates quickly from in the past. Luckily she passed it and was able to rehydrate at home.

We are so excited to have her outdoors more especially with walking. She loves the fresh air. It is amazing to see Ava play and have fun, especially without her ostomy bag. She was still playful and happy with it, however its amazing to not have to deal with it right now. She jumped over a big hurdle with this last surgery. She really is a true warrior. We are planning to go to jasper this weekend. We have had some play dates with her toddler and baby friends, which is plan to do more of. We will continue to update with everyone on her progress ❤️.

Looking forward to seeing everyone at the teddy bear fun run for the Stollery May 11!🏃‍♀️❤️and thank u for everyone whose donated to the Stollery, means the world to us. #Ava’sArmy💪🏼

It has been a couple weeks since discharge from Ava’s last surgery, it has been busy in this household. We have had our ups and downs.

We had follow ups right away with her pediatrician. Her bum developed a severe diaper rash- and I mean severe…😩 she got open sores to where we needed dressings. We had to take her couple times to her doctor and started to use a steroid cream. We have been doing sitz baths and literally blow drying her bottom. Finally we are seeing healing and improvement🙏🏼 has been a long last week needless to say, couldn’t take Ava out anywhere, and her bum hurt her. She had been pooping a bunch, and has got constipated a couple times. Her rectum occasionally prolapses, something we need to watch closely. Landon and I have been trying to see what Ava’s new normal is with her bowel movements and adjusting her diet accordingly. She is slowly adapting to her bottom by gaining strength with her muscle, as it was damaged so badly last year with scar tissue. She is on laxatives daily, and will most likely be for the rest of her life. But we are seeing positive results from her bum right now 🙏🏼❤️

Her abdominal incisions are healing up nicely. When we got home couple weeks ago, she wanted to just “go go go”. We had to hold her back a bit which is so hard for a toddler. She started to walk a bunch the next day we were home. She’s now cruising around the house. She can’t get enough of it!

We follow up with her pediatrician next week, and her surgeon in a couple weeks.

We are so glad to get over that big surgery, it has just set in to Landon and I that Ava doesn’t have her ostomy anymore.. as we have been so busy with her bum sores. Seeing her stomach without the ostomy makes us so happy. Her poor body is just covered in big scars, but all a reminder of each hurdle Ava has overcome and the strength she has built. This girl is the definition of a warrior. She will be able to show off her scars proud, and not hide them. It is so nice to finally be able to dress her in a “T-shirt and pants”. With her ostomy, we had to use diaper shirts all the time as she would grab it and it would catch on things. This is something people might take for granted dressing their kids in. I also converted our 2 diaper bags (one medical/supply bag) into one big backpack. That felt surreal. Will be so much nicer to take her out. Once we are through the sitz baths with her bum, we will look forward to an outing as a family together.

We thank everyone who has been sending their kind words. If we haven’t been able to get back, just know we truly appreciate each and everyone who has reached out. So grateful for Ava’s army ❤️

Here is a an article that explains a lot of what Ava is going through right now after her ostomy reversal.

https://www.cincinnatichildrens.org/-/media/Cincinnati%20Childrens/Home/service/c/colorectal/treatments/colostomy-closure/colostomy-closure-anorectal-malformations.pdf

We are discharged home!!💜💜 we came home yesterday. Ava had a really good last couple days. She began to poop, eat and drink. Landon and I have never been so excited to see a dirty diaper haha. Her incision is healing nicely. They took the staples out of her large incision. She has one large vertical incision and a smaller horizontal incision where her ostomy stoma was. She’s managing well with Tylenol. She’s such a tough little girl handling pain. She already has a terrible diaper rash and open sores to her bottom as it is not used to poop. This was expected and hopefully will get better with time. As soon as we got home Ava had a big nap and has been cruising around. We have to try and encourage her to rest, extremely hard with a toddler haha. She had some withdrawals from the narcotics and separation anxiety, will take it day by day. Just glad to be home ❤️.

Her surgeon was so impressed how well she recovered. We will have to monitor her poops to make sure she doesn’t get constipated. He explained that because of all her scar tissue in her bottom where it dehiscence opened last year, it will cause more constriction and difficult to naturally dilate because scar tissue is so tough. She may need another surgery if this becomes a problem. Continence may be an issue too he explained but we won’t know this until she is potty trained. We will take it as it comes. One thing at a time. Beyond thankful to overcome this major hurdle and have this surgery be a success. We start follow up appointments this week.

It is so nice to be in our house together as a family. Looking back at this week, we think how did we get through that? We have said that after each surgery and admission.. and we just do it. It’s like survival mode. Ava’s strength and determination amazes us. She has gone through an unbelievable amount of operations that any person should in a lifetime. Her resilience is incredible. Seeing our little girl play, smile, and giggle just melts our hearts and helps heal all the scary things we have gone through as a family. We thank everyone for reaching out to us with the kind words and prayers for Ava. We have an amazing support system. 💜💜

her 2019 Stollery shirt

We are still on the ward in peds surgery 4D. She has been more active and playful. It’s so nice to see her more like herself. It’s been slow and steady, but positive progress with Ava. Last night at 3 am her IV went interstitial (out of the vein) which was very painful for her because of the potassium and narcotics that were infusing 😞. She is a very hard start. Once they got another in she was able to fall back asleep. Her incisions to her abdomen are looking good. We were able to wean her off the dilaudid pain medication today. Will be managing the withdrawals from that. She has been so tough and has been amazing us with her strength❤️. She has passed more gas today🙏🏼 we have never been so excited to hear a “fart” haha. And she even had a small poop smear🙏🏼. Her bowels are taking their time “waking up” from the major surgery. We are still all on our toes and holding our breath waiting to see her bum fully work. The surgeon explained today to Landon and I that Ava will have constipation issues as her bum hole has so much scar tissue and is constricted. But one step at a time.. and waiting for some poop action 🤞🏼🙏🏼. We were allowed to take her for a stroller ride which she enjoyed. She was allowed a couple ounces of pediasure today which she enjoyed. Cartoons such as peppa pig and dinopaws are her current favourite. Will continue to keep u all updated. Thanks once again for all the love and prayers ❤️❤️