Dr's just do not know how to treat our poor princess skin, it is so bad and the itching, frustration and pain is taking over her life, skin infection after skin infection all over her body, we just feel so useless.
Evie-Anne had her NG tube removed on a trial basis while we weaned her onto solid food's, so far it is going very well.
Evie-Anne has been diagnosed with Monosomy 1p36 Deletion Syndrome.
Evie-Anne has been losing weight & we decided it was best to replace her NG tube to help her feed, she has been gaining weight since.
Evie-Anne has started to suffer very badly with severe reflux (GERD, gastro-esophageal reflux disease), reflux is what happens when your baby's acid stomach contents come back up into the food pipe (gullet or oesophagus) causing severe vomiting, acid indigestion and severe heartburn. It also causes her many chest infections as sometimes the acid aspirates onto her lungs causing lung & chest infections. Even with medication it is causing her a lot of discomfort, pain & distress
Evie-Anne has currently been experiencing anything from 3+ grandmal seizures & 40+ absence seizures EVERY day. After trying many combinations of anti seizure medication's with no improvement, we was referred to a professor who specialises in epilepsy at Birmingham Children's Hospital, who prescribed Evie-Anne a new medication which now has her seizures under control!!
Because of how severe Evie-Anne's reflux is & after much discussions with the nurses, doctors & specialist we have decided to agree to there suggestion and recommendation of a fundoplication and a gastrostomy.