Blisse was born at 34 weeks my emergency C section as I was very ill with Swine Flu. Blisse was poorly with pneumonia when she was born and had to be ventilated and stay on neonatal for 2 weeks. I was so poorly I didn't get to see Blisse till she was 8 days old.
At 2 weeks Blisse was allowed home and docs told us scans etc were normal and we had a healthy baby. Life was great for 16 weeks, then Blisse began to twitch. The GP sent us to hospital and Blisse grew gradually worse on way there having lots of seizures. As her neonatal scans were okay docs thought it might be meningitis, so did a CT and lumber puncture.
Our lives have never been the same since we were told the results. Her brain was very abnormal. Blisse stayed in hospital for 5 weeks, seizures growing with intensity each week and her skills disappearing. She was given a peg as she could no longer swallow. Blisse then had an MRI scan and the results were that she suffered from the brain condition Periventricular Nodular Heterotopia and Polymicrogyria.
The doctors haven't seen someone with the two conditions together before so couldn't tell us an outcome except take each day as it comes. That's what we do now, take day by day. Blisse has become worse, seizures are not controlled. We have tried 8 epilepsy meds and ketogenic diet with no success. She can't sit, crawl talk etc.
But as a family we focus on the positive she smiles, laughs, claps and loves you to sing Twinkle Twinkle Little Star. She touches everyone she meets, and continues to amaze us every day with her determination to try and do things even though she has daily seizures and rescue meds continually.
Blisse's nickname is Blisse Bluebell as her eyes are sparkling blue. Although Blisse has a life limiting condition we make every day count. She would love your quilts as she loves to roll and a quilt thats big enough for her to do that would be great with special meaning.