Bodhi was born full-term and suffered an unknown complication resulting in a severe brain injury caused by a lack of oxygen. This injury nearly took his life and we may never know what caused it.
This type of injury is commonly known as HIE. Hypoxic (lack of oxygen) Ischemic (restricting blood flow) Encephalopathy (affecting the brain).
Bodhi spent the first 4 months of his life in hospital and we spent our first 4 months as parents by his side. When Bodhi was first born he could not breath on his own and was ventilated. We wish we could tell you for how long but those days are such a blur we can’t be certain. Early on it was determined that Bodhi did not develop his suck reflex and was unable to swallow. This meant that the very first meal he was given was via a Nasal Gastric tube and Bodhi is now fed via a port inserted into his stomach. To be able to safely take Bodhi home with us we needed to learn a lot of medical skills such as suctioning to keep his airways clear, feeding via a pump, how to administer medications and oxygen when required. These tasks are now second nature to us and we forget how foreign they seen to other people.
The HIE event Bodhi suffered has led to significant limitations in his abilities including Spastic Quadriplegia Cerebral Palsy (all four limbs, trunk and head control), with Bulbar Palsy (mouth and throat), Epilepsy, Hearing Loss, Visual Impairment (CVI), Dystonia, Severe Global Development Delays, PEG fed with Dysphagia (an unsafe swallow) and Failure to Thrive (difficulty gaining weight and below 3% for his age).
At just 5 weeks of age we were told Bodhi may never walk, talk or eat. What Bodhi has taught us is that he can do all of these things, and more, they just look a little different to how other people do them. Bodhi is now two and a half and in spite of all the obstacles he has and is yet to face, our little boy is a fighter. Every day we are inspired by his strength and reminded how determined he is.
Intensive therapy is a huge part of Bodhi’s rehabilitation so that he can have the best possibly quality of life. Bodhi actually loves his therapy sessions, telling his therapists to do more and giving the biggest smiles. He is doing so well at the moment and surprising a lot of people with his recent achievements. Bodhi attends up to 5 therapy appointments a week which don’t include his medical appointments. During therapy session Bodhi is learning how to communicate, how to swallow, how to use his body to move and play, how to sit, hold his head up and stand and that there is a big wide world out there that he can be a part of. We can’t wait to see how far our little guy will go – taking us along for the ride.
We believe that during our journey we have been fortunate enough to be supported by remarkable people that have become part of our community. We are so grateful to everyone who has reached out and are especially grateful to the SRBF for providing Bodhi with the intensive therapy he desperately needed.