Birth Story"There is nothing scarier then going to the hospital having contractions and then they tell you that you are dilated and in labour. I was then transferred to kingston Hospital and ben was born 36 hours later after they tried to stop labor and a placenta abruption. He was then instantly rushed to the NICU where they hooked him up to a ventilator and many other wires to monitor him. we weren't able to hold him for 3 days. But I tell you...when we did, it was the most amazing feeling. After 3 weeks they had found the build up of fluid in the brain and he was then transferred to Sick kids in Toronto by helicopter."
Hello everyone! For those new faces following bens journey, this is Ben. He was born at 25 weeks (3.5 months early). He had two large brain bleeds on each side of the brain at birth which caused hydrocephalus. Hydrocephalus is an extra build up of fluid on the brain. Spending his first 6 months of life in hospital and undergoing 11 brain surgeries in the first year of life at Sick Kids in Toronto. He was transferred from kingston to Sick kids because they were the only ones who would do the surgery on such a small baby. He now has two shunts that drain the fluid from his brain to his stomach where it absorbs. Ben also has Hemiplegia Cerebral Palsy caused by the brain damage, which affects the right side of his body. He sees Physio and OT once a month to help. We were able to get a walker last year for him thanks to our local lions club. He had a feeding tube put in a year ago to help him gain weight as he wasnt eating enough to gain the weight he needed. Ben also has some damage to his eyes from the pressure on his brain as a baby so they want to correct them with an eye surgery at cheo.
As you can imagine we have a lot of appointments, some in ottawa, cornwall and toronto. Along with many things that ben will need to help him as he grows. Despite all of this he is a very happy kid, always laughing. He doesn't walk on his own but he does well in his walker and he scoots around on his bum. He is also talking a lot now which they told us he may never do! Proving these doctors wrong! He may be developmentally behind but he has overcome so many things and we are very proud. We are hoping to get help.
We take Ben to a private physiotherapy in Kanata which we pay for out of pocket to Make sure he is able to go at least once a week. The government funded therapies will only see him once every two weeks. And that is not enough. We also took ben to Smile Therapy for Kids in toronto that specializes in helping children with Cerebral palsy. Its not covered and we have to stay in Toronto while he attends the therapy for three weeks at a time. But the results have been amazing. We want to make this happen for him a few times a year but we really need your help.
Ben will also need braces and equiptment throughout his life as he grows.
Its a very hard thing to ask for help but we want the best for ben and to give him the best quality of life that we can. He is one amazing kid and inspires many. We appreciate you all.