BiographyIvy is 2 Years old. She was born in January 2015.
We first found out that Ivy was going to be special during my pregnancy when at 20 weeks pregnant they noticed she had numerous problems showing up on scans. We were then referred to a feotal specialist who after lots of scans and a pregnancy MRI confirmed that Ivy had polymicrogyria (many small folds of the brain). This condition had replaced the whole surface of Ivys brain with smaller folds and also meant her brain hadn't grown to its full size.
We were told before we had her that due to the extent of the PMG it was likely that Ivy would be born unable to breath or eat for herself and there was a high chance she wouldn't survive. We decided then and their that we still loved this girl no matter what problems she may have.
Ivy was born via c section due to them wanting a neonatal bed on stand by. But from the day she was born she proved them all wrong and breathed fine by herself and fed well, so was able to come up on the ward with me.
On day three, Ivy had a CT scan which confirmed her PMG and also stated she had microcephaly (small head!) due to lack of brain growth. It was also on this day Ivy failed her newborn hearing screening... At the time I remember thinking I don't care if she can hear at least she is with me (and that will never change). Ivy had hearing aids at 3 months old after tests proved she had no hearing at all. After a year and a half of wearing them (due to lack of development so had to wait longer for them to be able to do any behaviour tests to see if she would have responded) she was still unable to get any sounds whilst using them and in February this year had surgery to have a cochlear implant which has meant Ivy has finally responded to sound :). We are still unsure of whether this will give her speech due to her brain damage but at least knowing she can hear us say I love you is more than enough.
At 8 months old, Ivy started having strange jerking movements which got stronger and stronger and more distressing for her. She was immediately started on epilepsy drugs. After an EEG it was confirmed she had infantile spasms (a form of epilepsy). She was put on a course of acth injections which managed to stop the spasms but we were told that she would always have chaotic brain activity due to her problems so is always going to have to stay on her epilepsy meds. Unfortunately around 22 months Ivys spasms returned. After messing around with med increases etc it was decided we would start steroids again. (They have lots of side effects so not an easy decision to make). And she is currently still weaning off them and touch wood, currently the spasms are back under control.
Due to her problems and her constant epilepsy activity this has caused Ivy to have cortical visual impairment which is where the brain struggles to process what the eyes can see, due to this Ivy cannot focus or track and we are unsure of how much she is currently seeing but she is slowly improving.
Ivy's problems were always assumed to be genetic but at around 19 months old and retesting her new born spot and redoing MRI's, we discovered Ivy's problems weren't genetic and were actually due to a virus called congenital cytomegalovirus (CMV). I was shocked to find out this virus is actually very common and up to 80% of adults have caught it by the time they're 40. It is mainly carried around by preschool ages children (but can be passed through adults or older children) and is passed like any other cold through bodily fluids like saliva or urine etc. To most people you would never know you had this virus, it would just seem like you had a common cold and their wouldn't be any effects but unfortunately if you happen to catch it for the first time when your pregnant and it passes onto the baby then it can cause significant disability or miscarriage. It is also the leading non genetic cause of deafness in children.
Ivy is very developmentally behind, she can't sit, stand, crawl, talk or hold toys etc but she loves life more than anything. She is the happiest girl I've ever known. She never stops smiling and giggling. She has had some rough years with lots of chest infections and her cochlear surgery but she comes out fighting. She loves meeting new people, tickles, visiting different places (especially farms or anywhere with animals). But most of all loves swimming -lol.
She is my crazy little princess who never fails to make everyone around her smile and laugh. Although she may not be able to do what others can that will never stop her enjoying herself. She has always proved the doctors wrong and I hope continues to do so in the future :)
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