2025 has not been kind.
So much is happening and yet it feels like nothing is happening at the same time.
The return of Lia’s seizures due to HIPPS has been the final blow on a terrible cake.
She had her second EEG on Wednesday and the results confirmed that she is still in HIPPS. Dr Lamb said epilepsy patients with a history of HIPPS can move in and out of it at any time and there are almost no explanations for why it happens. He told me he would never give up on her and that I should not give up either. We fight.
There was a slight change in medication to attack HIPPS the way the Springboks would. With Eben Etzebeth please. A very strong front row with Asepilone which is cortisone in a very high dose, nine bottles in a month. I have been bleeding money for her medication.
She had a full seizure on Friday. It was frightening but I just held her tight and kept whispering “ssh ssh shhh it is okay.” Today she woke at five in the morning, moaning and crying. I picked her up and noticed immediately that something was wrong. She was floppy and every few seconds she would have these kicks that looked like little shocks. Prof Lamb said to try to stop a seizure when I see it coming. I grabbed the medication. It tastes disgusting. She was crying with no strength. Her body was almost paralysed. I picked her up and held her tight with her sleeping on my chest for the first time since she was about eight months old. I kept watching her breathing. I held her and kissed her and cried over her.
I know I need to be patient with the medication but it is so hard to see her like this. She is sleeping peacefully now and I hope tomorrow will bring a better day.
If you would like to donate to help cover her medication, please use this link. I appreciate you all.
L & L
