I want to start by telling you our story! This is my first blog which you can find at the below link.
For those of you that don't personally know me my name is Danica and I live in the beautiful North Queensland. I married my teenage sweetheart and have gone on to have two beautiful girls Abigail 3 and Hazel 1.
Now let me say this, advice from other people gives an insight to parenthood. Nothing can prepare you however for the heartbreaking news that something is medically wrong with your child.
I will gloss over the milestone events and will post later on about specifics. Basically Abigail was born at term, delivery was so bad. I had a super long early labour so had been awake with contractions from the 13th of March, so as you can imagine by the time it got to active labour I was already stuffed. After a complicated labour I finally got to hold this beautiful quite chunky baby girl. We settled into parenthood like you settle into a lounge made of cacti, I was healing running off no sleep and cranky and hubby had just witnessed me push a small human out of my vagina so lets just say we were both adjusting.
Day 3 I was holding Abigail and she did this weird full body jerking for about 5 seconds, of course first time mum I freaked out. From here we were continually brushed off by medical professionals and told it was nothing to worry about, however I knew something wasn't right, but agreed to wait and watch like the doctors said. It wasn't until she was about 18 months old, she had what I now know to be a seizure that lasted about 30 seconds, Abigail was so distraught and it broke my heart. I literally lost my shit went to our then amazing GP and asked for a referral to a paediatric neurologist for an opinion.
In October of 2018 at 20 something weeks pregnant with my second we made the 17.5 hour drive to Brisbane to see this specialist. He was hesitant to go against the other doctors but after one cranky hormonal pregnant lady lost it in his office he agreed to one more test which was an overnight EEG. We spent 24 hours in hospital with Abigail hooked up to the EEG and I shit you not she had not one turn, I spent the trip home basically in tears because we had spent all this money to see this specialist and I just knew answers were not coming.
Well low and behold was I wrong. We linked up with the specialist via video link on the 29th of November 2018, instantly I knew something was seriously wrong he had this look on his face that I honestly cant describe. I started crying and said whats wrong with our baby, in an instant my perfect family dreams were shattered with the words "Multi-focal epilepsy". Little did I know those dreams would be shattered just a little more in 8 months time with an additional refractory diagnosis and a little more with a kidney disease diagnosis earlier this year.
Currently Abigail has commenced a new treatment called a ketogenic diet due to medications not working for her, she is part of the 20% of patients worldwide with a type of epilepsy that doesn't respond to pharmacological treatment. She is currently a combination of tube fed and oral fed due to sensory differences.
This is an overview of the life I have become to accept and embrace. The days are hard and long and challenging and you need to be prepared for anything.
My hope is that by sharing our story we can raise funds for rural epilepsy information workshops to help families just like ours.
