Cerebral Palsy

On the day Jesse arrived I noticed that he was not using his right arm and hand. I hadn't been told that he had a problem with this but as I had for many year worked in early intervention I recognised he probably had a right side hemiplegia.
The day he arrived it was very hot over 40 degree Celsius. He arrived along with all his equipment which all needed to be unpack and sterilised. He was 4 months old and in congestive heart failure.
He struggled to feed taking 10 -15 mls at any feed. He would sweat profusely and had extreme difficulty breathing. I was very concerned about his right arm and hand in particular that day. I took him straight to A & E for assessment on the first day. I had been told by his paedatrican that he would need cardiac surgery when he was 4 years old and that for the first year he was at high risk of sudden infant death. So wasn't so concerned at that stage with his heart condition. I had worked with David and felt comfortable with cyonotic conditions.
His right arm and leg I thought might have been a result of abuse or neglect. The A& E doctor was very suspicious of me and thought I had abuse the child even though he had been in my care less than 4 hours. He was discharged with no diagnosis and with me feeling annoyed that I had been considered a child abuser.
It wasn't until he was 3 years and 3 months that a doctor finally recognised that he had cerebral palsy. But nuch had happened in those intervening years.

Congenital Hearts

I first entered the world of congenital hearts when working with David. He was a child with Downs Syndrome and an inoperable heart condition. He was such a beautiful soul. I worked with David for may years as he lived way past his expected life expectancy. He loved music and dancing. The latter he tried to do but he couldn't manage for long. He would turn a deep shade of purple so he got his enjoyment watching others. I escorted David to hospital many times as his condition deteriorated. Each time was such a trauma for him.I admired his love of life and valiant attempts to participate in all he could. Love him I tried to ease his fear and hold his hand as his passing time came closer. I was sad but relieved when he finally passed as I knew he wouldn't suffer any more.
Several years later became a foster parent. I was unable to have children and really enjoy their company. I longed to be a mum and ache to hold a child in my arms. I had love to spare.
I met Jesse before he was put into my care. He was a beautiful 6 week old baby with the most amazing blue eyes. His parents both had disabilities and used to attend a group I was facilitating.
Jesse has a very complex range of conditions. Today I'm just going to post about his heart condition. His congenital heart condition is called pulmonary atresia with an intact ventricle septrum, hypoplastic right ventricle, atrial septral defect, tricuspid valve incompetence and patent foramen ovale. This condition is very complex and life threatening. Jesse had surgery when he was 2 days old to put in a modified blalock shun and pulmonary valvotomy. This shunt allowed blood to flow to his lungs to be oxygenised and began the process of recreating his pulmonary valve and saved his life.
Jesse was 4 months old when he put into my care. Here is a picture of him of the day he arrived.