My dearest friends.
I know many of you have wondered hoe Lia was doing, but I really didn’t have an update to send.
Through one of my best friends, the genius paediatric neurologist, Dr Lamb (with a waiting list of 500 people), heard about Lia’s Lissencephaly tipe 1 (malformation of the brain) and we got to see him for close to 2 hours yesterday.
He is an incredible doctor and I now understand why he is fully booked into next year. He looked af her previous 3 EEGs and was rather confused that there were so many. He asked me a few questions, looked over mu shoulder at Lia, picked up his phone and booked her for an emergency EEG. He said he just as a feeling that this needs to get done now.
We drove to their lab and they hooked Lia up. She fell asleep (which was exactly what he wanted, without sedating her). 45 Min later, we were on our way back to Dr Lamb. The feeling he had was right. Lia’s type of epilepsy is not the kind we know and see with the naked eye. Her epilepsy goes together with HIPPS or known as West syndrome. Her brain keeps on having seizures all day and all night, an incredible noise in her little head making living very hard for her. This has to be treated immediately. He took her off of epilim and added 5 other medications. One of them is to calm the noise in her head and one is cortisone as her brain is swollen from all the noise. This type of epilepsy is the dangerous one that damages the brain and he was well upset that the previous Doctor didnt pick it up on the previous 4 EEGs.
He showed us her MRI, and you can clearly see her brain is most affected at the back and he therefore said she will never have good eyesight and that we dont have to put her glasses on. He stopped all therapy, until the extreme noise and irritation in her brain stops, she will not learn anything new. We have to go back for another EEG in 3 weeks and see him in 4 weeks.
As she is refusing to take a bottle, we have to go see a feeding specialist in Potch. Dr Lamb works with a team af the Potch NWU campus.
We will repeat the EEG in 3 weeks and see Dr Lamb in 4 weeks. He is about 90km away from Alberton near fountain circle in Pretoria.
The pharmacy didnt have all the meds she needed yesterday. So hopefully they will have everything today.
He is an incredible doctor with a beautiful heart and soul, he gave my mother and I a hug and told us “this is the first day of the rest of your lives”.
Whether she’ll sit, walk, talk.. we wont know. Her milestones can only start to develop again as soon as the noise in her brain stops.
I’m shocked and heartbroken about his diagnosis regarding her sight, but we’ll keep trying the glasses and definitely the patching for the lazy eye.
Thank you for your support and love. Its been a massive juggle trying to juggle work, Nelius, Lia and myself and it has caused a lot of stress and tears as I can only do so much. Please be patient with me, pls send prayers for Lia and our family and strength so that I can maintain a good reputation at work and still be a good mother to Nélius and Lia. I feel like a bit of a failure. Work-wise, life-wise and mother-wise, so please send strength.
Much love
Lia and Liézelt
