Our little lion cub Logan has just turned one, and has already had to cope with more than most adults have to in a lifetime.
He was born at 37 weeks without any major concerns, although he was very small at birth. Over the first five months, he was slow to gain weight, but did so at his own pace.
Then suddenly and hugely unexpectedly, Logan had a massive 25 minutes seizure just before he turned 5 months old in August 2013. This remains one of the scariest moments of our lives as he stopped breathing and we honestly thought we had lost him.
Although doctors initially thought this horrendous seizure was a one-off, Mother's Instinct told me differently and proved to just be the tip of the iceberg.
Logan's seizures became more and more frequent, and he has been in Status Epilepticus several times. At their worst, he can have 100+ seizures a day and are best described as relentless.
Heartbreakingly, his development regresses during these times.
He is now fully NG fed and we are awaiting him to be fitted with a Gastrostomy. A General Anaesthetic is very risky for him, so we are very anxious about this.
His care is currently spread over 4 different hospitals, and we have appointments most days. We spend an awful lot of time in hospital, which is very difficult when we have a 2 year old too.
Logan has recently been diagnosed with having Migrating Partial Epilepsy in Infancy (MPEI). This is a particularly catastrophic but very rare form of Epilepsy and the prognosis is very poor. This is in addition to an even rarer Chromosomal Deletion of which there is just one other similar case in the world.
We are heartbroken but want to make our time together as a family as happy and positive as possible. We couldn't be more proud of Logan and he is just an absolute delight. He smiles through everything and has the strength and courage of a little lion.
We love him dearly.