Coming home, Today and everything in between.
We came home in March 2013 and as I’m writing this its November 2016. A lot has happened in the last 3 years, Epilepsy diagnoses, feeding tubes, Surgeries and having another baby Sofiya Poppy Koropisz.
We enjoyed the typical family life of having a newborn baby, and for a while we felt “normal”.
May 2013 – stoma reversal
We returned to hospital for Olivia’s Ileostomy reversal which was successful, however two nights later Olivia’s iv came out in the night & wasn’t replaced she became extremely dehydrated. Due to Olivia being premature it was extremely difficult to find salvageable veins eventually a picc line was needed to rehydrate & give her essential nutrients. We ended up staying for an extra 7 days.
May / June 2013 – Absent seizure
We had been told Epilepsy is an accompanying condition when a child suffers from cerebral palsy. However, not all seizures are so obvious. Seizures come in many different forms, especially in babies. Alot of seizures are ONLY detected by an EEG. Olivia was diagnosed with complex absence seizures. I’m not sure on the time frame but a couple of months later a new diagnoses of infantile spasms was our new worry, they can be devastatingly damaging. They can cause intellectual disabilities later in life. Olivia began steroid treatment which wasn’t an easy decision as this can cause more harm than good.
A short period later her epilepsy progressed and she was later diagnosed with tonic clonic siezures this was horrific as Olivia would be conscious & scream throughout the entire seizure which could last 6 minutes and occur upto 7 times a day.
Trying to find medication to successfully control epilepsy is more complicated than you can ever imagine, Olivia currently needs 2 different anticonvulsants which took 8 months to find balance & control.
Dec 2015- seizures under control
Seizure free for one year! There has only been one incident when Olivia had a tummy bug & high temp which subsequently brought on a grand mal seizure that was unlike before & terrified me. It lasted one hour & needed two lots of rescue medicine to bring it to a stop, we stayed in hospital for one week.
July 2015 – July 2016 – Feeding difficulties
Doing research after Olivia’s bowel problems we were aware that feeding could be an issue. For almost 3 years Olivia ate anything and everything with no problems, we progressed from puree to mashed but hadn’t quite mastered lumps. Anything liquid needed thickening as she would inhale her juice which resulted in many hospital visits due to chest infections. After contracting chicken pox Olivia’s eating worsened she soon began to get very distressed. Eventually she completely refused to eat which saw her weight drop to 16lbs .
Oct 2016 – NG tube & G tube
Due to neurological disorders & aspirating when eating children can benefit from a temporary NGtube.
Making the decision to insert a ng tube was honestly the best for her, in just 4 short weeks Olivia had gained 5lbs. Which brings us to today Olivia is steadily gaining weight however her Dr still thinks a Gtube will be the best long-term which we’re currently waiting for dates, this means a return to hospital for another operation.
Almost 4 years, 3 surgeries, numerous hospital stays, countless medications we know we are far from living a stress free life. We live in the unknown, this makes it extremely difficult to plan ahead. Our life revolves around Olivia and her health.
Oliva currently has physiotherapy 1x a month at home and 3x weekly at nursery. Daily stretches & the use of equipment. Occupational therapy 3x weekly. Sensory support (vision therapy) 3x weekly, Speech therapy every 6 weeks. We also see her pediatrician and dietician every 6 weeks.
Even after everything She’s been through Olivia is the happiest little girl with a cheeky personality. She’s my little hero xo