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.
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 😊❤️
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. ❤️
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.
Hey everyone, Ava went into surgery yesterday at 11:30 am and she came back from recovery at 4:30 pm. The surgery reconnection went well, he cut out another chunk of bowel, and she needed 2 blood transfusions due to the large amount of scar tissue she has inside that bled. The surgeon said her bum hole is a bit on the smaller side so will have to watch carefully and probably continue dilations. Last night was a bit rough, we had a hard tome getting her pain under control. She came back on a dilaudid infusion for pain which wasn’t doing enough for her. She became so agitated in pain they needed to move her to a close observation room for the night. After more pain medication she finally settled and was able to sleep in our arms. We are back in our own room as of this afternoon.
The next step is waiting for her to pass gas from her bum. Her bowels essentially shut off after that surgery. So she can’t have anything to drink or eat yet which is extremely hard for a toddler 😩. Distraction and comfort has been key. She’s such a tough girl. All the nurses and doctors just think she is one of the toughest girls around from everything she has gone through. We are thinking positive thoughts for her to pass gas and see some action in her bottom. Thanks for all the prayers for our little girl. We will update again soon❤️.