It’s been almost 3 months since we first met Dr Lamb the paediatric neurologist. Thus 3 months on her current cocktail of medications. There has been such an improvement in her “awakeness” – its like she woke up for the first time in 6 months. She hasn’t had an epileptic fit since the 25th of June, the night we were admitted to hospital, which is fantastic. I am very worry that the HIPS (epilepsy while she sleeps) may have returned as she wakes up screaming every single night. I have this heavy feeling on my heart and stomach and I’ll have to wait until 6th of December to found out if that is the fact. This year has been incredibly difficult and some say they don’t know how I do it… and you know what? I don’t either and some days, I don’t manage. I fail, I fall, I cry… like today. My dreams for her were so big, but I’ve had to scale down as the goals and dreams are now things that came naturally to Nélius and any other baby. The occupational therapist is positive giving good feedback, but a part of me wonders if she is just entertaining my feelings, hopes and dreams. I wish I could do more for Lia, but I have Nélius who is very attached to me (and started saying MAM-MA), full time work with big expectations and hectic deadlines. I try my best to give her the best shot she’s got. Some days I feel I fail all three of them. Her next EEG will be at the end of the month and that report will be sent to Dr Lamb and then we’ll get the result on the 6th of Dec. It feels forever away. So for the next few weeks, I’ll be walking around with this pain on my chest and knot in my stomach. Please keep us in your prayers. We are fighting (most days), the fight of our lives.
Miracles for Lia
Lia's story
