Jesse's cardiac health started to fail when he was 2 and a half. We noticed he sweated profusely day and night. He was struggling with his mobility both because of his chd, physical disability, lack of diagnosis of cerebral palsy and no early intervention services. He was increasingly blue and breathless. Late one night I could hear him coughing and when I went into him he was very cyanosed so I call an ambulance and he was admitted to two hospitals that night and assessed to be in cogestive heart failure. He was listed for the nextstage of his right ventricle overhaul.
In hindsight I can say that this was the calm before the storm. At the time all hell broke loose. Waiting for open heart surgery is so stressful. Our emotional stay was in anxiety panic mode. Jesse was calm, quiet and blue.

Time to meet another member of the four surname family. Jesse's foster dad C is the gorgeous dad in the photos. I met him in the USA and he travel to live in Australia. We fostered Jesse and although initially unsure about living with a child with a chd he became a besotted dad in a very short time. Here is a photos of their first bonding session.

The beginning of the wild child

With intensive early intervention using the Hawaii Early Learning Programme (HELP) I work on Jesse's gross, fine motor, expressive and receptive communication, cognitive, and self help skills. Using the HELP workbook I programmed each day with activities to teach him developmental skills. He gradually began to make gains in his development. The most significant delay at that stage was his physical development. He had a right side hemiplegia with his right leg and foot most effected by the cerebral palsy and he struggle to weight bare, sit, crawl and to finally walk. Jesse's fine motor was very delayed. He had poor balance and would topple when he reached across the midline on his body.
I needed to go back to work and had to place Jesse into child care. Almost immediately it was observed by the centre that Jesse need one to one due to his global developmental delay and behavioural difficulties. There were numerous safety issues in the home, child care and in the community. Once he started walking independently he became increasingly difficulty to manage with risky behaviours and frequent temper tantrums if unable to do what he wanted although a behavioural norm his behaviour put other children at risk of injury.
We attended the Infant Health Service and he was graduated from this service with no skills development or at home therapy ideas or assistance. He was referred to Children's hospital physiotherapy and occupational therapy service but suspend at the age of 3 due to his challenging behaviour. We were referred to the Psychology department of the hospital but this never referral never produced an appointment despite frequent follow up by me. This was an early taste of what was to be a frequent pattern in the inability to access services.
I made numerous attempts to find services and have assistance with his physical disability. He had significant problems with his right foot and leg resulting in many falls. Finally after giving up on the infant help and children's hospital I self referred to the Cerebral Palsy Association where we final started to get the help we were needing.

Where have I been? Goodness what a book this would have been if I had started earlier and could keep it up. I will try and write again and see where it goes. Here is where I am in my return to better shape.