The lead up to surgery was stressful as we had one cancelled surgery date before getting to the actual initial surgery date end of June 2024. Harvey was 14 months when the time came. The surgery itself went well, a long wait for my husband and I though. The first night in ICU and days after were tough. Harvey’s pain was not controlled well for the first day, he then tested positive to Rhinovirus and developed pneumonia. It was so hard seeing him so bruised, sick and sore. We were in hospital for 6 days. Over the next few weeks, things were improving, the swelling was easing, the scar was healing but then Harvey got a staph infection and things just continued on a downward spiral.

The end of July, 4 weeks after his initial surgery, Harvey had a 20 minute seizure at home and was taken back to Hospital via Ambulance. Another surgery was done that night for a wash out as his craniofacial doctors thought he had a deeper infection. The next day an MRI

confirmed complications from the initial surgery. Harvey had a dural tear in his initial surgery which was repaired, but had now torn open and part of his frontal lobe of his brain popping through. Another emergency surgery was done to repair this dural tear and unfortunately, part of his frontal lobe had to be removed. We spent another 2 weeks in hospital with an EVD drain, more complications of swelling spots on his head and lots of seizures (lost count maybe 35?). It was not a pleasant experience for our family, actually quite traumatic. We were discharged but Harvey still had 2 swelling spots on his head so we had to keep his head bundle on until we were

reviewed. Fun times - trying to keep a head bundle on a 15 month old was near impossible, every time I would leave him alone he would rip it off!

Review time came and the neurosurgeons were not happy these swelling spots had not resolved and recommended yet another surgery for a VP shunt. An MRI showed Harvey had enlarged ventricles which were not getting smaller. So a diagnosis of hydrocephalus was given. We headed back into the hospital for the shunt surgery start of September 2024 which was meant to be a 2 night stay, but again we stayed longer. After 5 nights, Harvey was discharged.

It has not been easy the past few months since his 4th surgery, with two more hospital stays for infection and more seizures but finally Harvey is doing well. His head swelling has reduced significantly, the scar is healing nicely and his hair grown back thicker than before! Harvey has regular Physio, OT and Speech to help with his high risk cerebral palsy. His hospital checkups are now spacing out to 6-12 monthly. Harvey is not out of the woods yet due to a new diagnosis of epilepsy, high risk cerebral palsy and his cranio history but

even with his long medical history…. he can still laugh and smile.