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Alex & Aidan




Alexander (Alex)


Alex was born in December 2016 normal term and normal pregnancy. He decided to arrive on Boxing Day rather than his due date in January 2017 (2 weeks early). He spent one night in NICU due to some respiratory issues but was discharged the next day with the all clear.

Alex’s growth and development were on track, however he had problems with his legs (they wouldn’t straighten). He didn’t like tummy time, wasn’t crawling or pulling up to stand. He would sit on the floor and pick up his right leg while turning in a circle. After Alexs first birthday he still wasn’t walking or crawling, I began to worry that something was wrong. In the summer he began to regress. I sought out help wherever I could find, family doctor multiple times asking to be referred to Edmonton or Toronto to the Childrens hospital, physio but then we were seen by a chiropractor, and she noted that Alex had no reflexes below the waist. Saskatoon at this time had limited pediatric resources. In October we finally were able to see a neurologist. Dr Crone met us and Alex at the beginning of the month and instantly knew what he might have. She sent us for blood work and further testing. Late October we found out we were expecting again! 3 days later Dr Crone diagnosed Alex with Spinal Muscular Atrophy Type 2 (SMA2). Alex was diagnosed as a type 2 because his highest motor function was sitting independently. Immediately where were seen by genetics for further genetic testing.

November Alex was approved for treatment for SMA called Spinraza. The pharmacy company Biogen sponsored us for the drug (each injection costs around $125,000). We began with weekly treatments for three weeks and then biweekly injections for December and now are in the maintenance phase where injections are every 4 months for life. The first few spinal injections Alex did great, he was so weak he wasn’t able to put up much of a fight. As Alex became stronger each injection procedure began to be more difficult. In 2019 we started having the injections be done under fluoroscopy where Alex would be fully sedated under general anesthesia.

Alexs's treatments are every 4 months, he has gained in a few areas and seen no further worsening in other areas. We lost Biogen coverage for Spinraza because SK health care took over. It's still great that the drug is covered and Alex is seeking the benefits of this medication. Downside is that we have to show that Alex is gaining in his motor function (hammersmith scale) in order to keep receiving treatments, we do while working with physio and OT at Alvin Buckwald Child Development Center (KCC). In addition to his frequent injections, he had developed hip dysplasia and underwent surgery to have this corrected.

Alex has always been different and since we finally had answers for his fine and gross motor function, we needed answers for his behaviors. Prior to Alexs autism diagnosis he would be distracted when it came to play, repetitive speech, inability to focus on one thing and noises where issues. Earlier when Alex was nearly 3 years old we seen a developmental pediatrician, but no diagnosis then. Summer 2021 Alex was formally diagnosed with autism. We began to access resources to support him through this journey. We found a private OT to work biweekly with him for his autism needs, in addition to his regular PT and OT for his SMA needs

August 2022 Alex’s weight became an issue where he wasn’t gaining but rather losing weight. Mealtime for Alex has always been a struggle. We decided to have a g-tube inserted to assist with his feeding needs. Between his autism and his SMA feeding is a large struggle.

This year Alex has begun to gain weight, he is excelling in kindergarten. We still see our PT, OT, private OT monthly. He gets spinal injections every 4 months that help with his SMA, it slows the progression of the muscle atrophy and allows him to gain movement that he never had before.





Aidan


Aidan was born June 5, 2019 with his twin sister being born 2 minutes before him via c-section. The twins were born 3 weeks early with no complications. Aidan had pooped right after being born. We stayed 3 days in the hospital. From the start Aidan had issues feeding, he had to be finger fed which was frustrating because he wasn’t getting enough nutrition. We were discharged from the hospital and had further feeding issues at home, the nurses would come daily to weight and check his bilirubin. We ended up back in hospital in less then a week after he was born for jaundice where he needed the bili light. Because Aidan is a twin we felt that he needed his sister by his side and so Megan stayed in hospital with us.

Aidan still wasn’t taking in enough nutrition so he ended up with a NG for feeds. We were discharged from the hospital again once his weight began to increase and we had the NG feeds down. By September Aidan was gaining weight doing well drinking from a bottle but a new problem developed with his pooping. Aidan barely if at all could have a poop on his own. I had taken him to the emergency room a few times before because he couldn’t poop and the doctors would just say he was constipated and gave a suppository. The only thing that would allow Aidan to have a successful poop was rectal stimulation. However doing this the poop literally would explode coming out of him. We were able to find a pediatrician Dr Brusky, she took my concerns and fully listened. She sent us for extensive blood work to figure out what could be wrong. We were referred to gen surgery.

In October 2019 at 5 months old Aidan had his first surgery for biopsies of his colon. These biopsies came back with a diagnosis of Hirschsprung Disease, part of his colon (approx, 1 inch) didn’t work, the nerve cells were missing. December 2019 Aidan had surgery to remove part of his colon that was not working. Dr Millar did an amazing job and Aidan began to poop normally. With frequent follow ups and dilations of the colon the surgery to remove the part of the colon was a success.

However, Aidan started to have complications due to the surgery. He would poop with extreme pain, have constant diarrhea and his poop would cause ulcerations on his buttocks that would then bleed. In 2020 we were referred to GI. With frequent visits to GI and no real diagnosis of why this complication was happening more blood work was done. The GI doctor was thinking enterocolitis and other mentions of possible causes but nothing was certain, a gastroscopy and colonoscopy were done with limited results, mostly indicating inflammation of the bowel. We were on a consistent rotation of antibiotics every 2 weeks for nearly a year Aidan wasn’t improving. He was nearly 2 and a half, wasn’t potty trained, wasn’t gaining weight and traumatized with having his diaper changed due to the pain from the ulcerations and still having diarrhea. We were being seen by dermatology for the sores on his bum, dietician to try and increase his weight and physio for his toe walking because when Aidan would pee or poop he would have increased pain and would go rigid due to the pain.

In February 2022 Aidan developed a fever, he wasn’t eating and had a large hot red spot on his bum. I took him to the emergency room where they determined he had a perianal abscess. he was put on two iv antibiotics, and we were admitted. The next day the abscess opened and began to drain, we stayed in hospital a week to get the infection under control and was discharged home on more antibiotics. Dr Milbrant was now involved in Aidans journey and was determined to fix him.

After 2 months since developing the abscess Aidans bum wasn’t healing and the opening the abscess had caused would drain sometimes. We seen Dr. Milbrant in clinic and it was determined that Aidan would go to the OR to have the abscess examined and cleaned out as it could be a fistular or a sinus track. Aidan was also re scoped. His abscess has caused a fistula, however fixing it posed a problem as the fistula was tied to Aidan rectal sphincter and cutting this would cause permanent incontinence. Dr Milbrant recommended we come back weekly to have a stich placed to slowly close the fistula. May 2022 for 3 weeks we attended clinic weekly to have a stitch place to close his fistula. As one can imagine this treatment was traumatizing to Aidan and he because more traumatized with having his bum touched or diaper changed.

September 2022 another scope was done. Aidan was still on rounds of alternating antibiotics. His fistula was healing and he was getting better. Finally we had received a possibly cause for Aidan's bowel issues, hirschsprung enterocolitis caused from his initial surgery to repair his colon.

December 2022 new year eve Aidan developed another peri anal abscess. I took |Aidan to the emergency room again. Thankfully we were not admitted but stronger and larger doses of antibiotics were ordered. A few days later we got into the see Dr Milbrant for general follow up. The new abscess had opened up into the healing fistula. It was recommended that Aidan have a temporary ostomy to allow for complete healing. A week later Aidan went in for ostomy surgery.

Since mid January and Aidans colostomy surgery we have a thriving, happy little 3 year old. Aidan is eating, gaining weight and we are currently working on potty training. His bum has healed, he has zero ulcerations and thus far his abscess and fistula have healed entirely. We have follow up with Dr Milbrant in 2 months to see when the ostomy will be reversed. However, the doctors do not know if once reversed all the bowel issues will return and cause Aidan to have problems again.




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