You will be in my thoughts and prayers, for sure.

He eats orally but has started to go mad when sitting in his squiggle chair, so now is back on our laps!!! Far too big for that and killing our backs but cant get him in the chair. he also screams alot of eating!! Going into hospital on Monday for tests on reflux, he is meds for it but i didnt think it could all of a sudden get worse!!!

I struggle to cope with our lives. He has to have all his food mashed up, so cant just go out for the day without planning it all. Also kicks off at every meal so not good in public!! (still not use to people starring)
Kai is unable to sit unaided, can not talk or walk. He does have a standing frame but seems to go to one side and stay there!!!

I have so many friends with children the same age as kai, so that still breaks my heart seeing them. I have not met anyone in my situation so no one I am close to knows the loneness i feel daily.

Have you met anyone in your situation, there seems to be nothing in my area to help us as a family!!!

Hope the twins are doing well.

The infection was the subject of a contentious debate between the hospitals that cared for her. One felt the brain lesions were consistent with haemorrhage, whilst the other felt it was possibly fungal in origin. At the time, Ella had some spots on her skin which were scraped and cultured to reveal Aspergillus growth. Aspergillus is rare, but at the time it was better to act quickly, and so treatment with Amphotericin B commenced for 6 weeks. The lesions (whether Aspergillomas or bleeds) cleared and didn’t progress any further, but the end result was the same in either case – cerebral palsy.

If it was infection, the source could have been a cervical cerclage (suture operation) that my wife had 2 weeks prior to birth (especially given that Ella was head down in the pelvis). That, coupled with the fact that fungus is slow growing, it almost definitely would have been in utero exposure (inside the uterus) to have seen the lesions when we did.

If it was a bleed, I don’t believe it happened in utero because the original ultrasound of Ella’s brain was normal 3 days after birth. If it was a bleed, then it was made worse when her kidneys failed and she became so oedematous that her blood pressure became uncontrollable. This may account for the numerous lesions she developed on her brain.

However, the lesions didn’t result in a lack of oxygen, they resulted in the damage/destruction of the affected parts of the brain. In Ella’s case (if I can remember correctly), there was one on the periventricular anterior lobe, head of caudate nucleus, basal ganglia and cerebellum (there were about 7 in the end).

Hope that helps.