Wednesday, August 24, 2022

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 ❤️

Saturday, July 16, 2022

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 ❤️☺️

Monday February 21,2022

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. ❤️

The Stollery gave Ava a bear at her appt ❤️
Pediatrician follow up
At pre-school

Monday, September 20, 2021

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😊.

Tuesday, June 8, 2021

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 .

Thursday, May 6

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.

Tuesday, May 3, 2021

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

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:)

Thursday September 24,2020

Hello everyone,

It’s been a while since we did an update. I’m sure majority of you heard we had a set back with Ava and she got sick. We were flown to the Stollery from Grande Prairie Early Tuesday morning. Basically starting Sunday she got a stomach virus, which led to a partial bowel obstruction. She was flown to Edmonton to be closely monitored by her surgeon and Pediatrician there who know her best. Thank gosh she was able to overcome the obstruction quickly and didn’t require surgery 🙏🏼. This was such a blessing and a big break for us. This definitely scared Landon and I, as we have had such a good streak with Ava. We’re so happy she’s doing well and happy. Ava got pretty traumatized from in hospital and you can tell she remembers all the scary things and procedures that happens. It’s going to take her a bit to make her feel safe and remove those scary ideas. We are finally discharged from the Stollery and on our way back home. We are all pretty exhausted. We want to thank each and everyone for reaching out to us with thoughts and prayers for Ava- means so much to us❤️.

Over the summer we had some follow up appts, we seen her surgeon in Edmonton and Ava has a small hernia on her abdomen that we will have to monitor overtime. It will eventually need to get corrected but for now it’s not bothering her, so we will leave it. She had her audiology appt at the Stollery in August and she had some abnormal readings on her left ear that we will need to get reassessed again (some fluid build up that doesn’t drain easily). Other wise it was a good appt overall. Her growth and development has been coming along well. It’s amazing how she can say some more words and is trying so hard to talk more.

She has started the PUF program at Pre-K (Program Unit Funding) where speech and an aid works with her right in school. She absolutely loves her school to socialize with all the kids. She has started daycare again in September and enjoys that also. It’s finally some normalization for her.

Basically Ava is prone to bowel obstructions in the future, from all the adhesions from the several bowel surgeries she has had. When she gets a gastroenteritis virus, it can develop more serious than another child her age without a complex medical history. We as parents have to find the balance to be cautious with Ava and let her continue with school and play with other kids for her social and development which is so important for her. We will take each day by day. So thankful this scare was resolved quickly and she was so resilient. It blew my mind Ava’s strength and bravery and how quickly she recovered.

Thank you again for all the love and support. ❤️ Ava’s army.

April 21, 2020

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.