We got to see Dr Lamb today. I’ve been so worried about Lia, worried that the HIPPS had returned. She’s been crying for hours every single night for the past two weeks. I sent a message to Dr Lamb and he arranged for us to come through, but first we needed to do another EEG. With the previous EEG Lia was still very unresposive and didn’t even notice the other two ladies in the room, this time she was alert, kicking and laughing and she kept on looking up at the lady who was putting the EEG on. It was amazing to see and they loved seeing her like that. 45min later they said that no HIPPS was detected. So much relief!
Dr Lamb said “You have to feel my love today, because I need to pray and think about her medication”. So we sat in silence for about 45min, Lia fell asleep in my arms. He has started weening her off of most of her meds and only keeping her on the Keppra (for epilepsy) and added dopaqual to help her sleep. It is very important to get her off of the Sabril as quick as possible as long term use can damage her sight and the high dose steroids can cause the lack of sleep at night. So it’s good news.
We have about occupational therapy sessions left this year, but she is working very hard with Nanna every day to make her neck, arms and legs stronger and she is doing well. For the first time she wears the same size as Nélius.
I wanted to create a Whatsapp group for her, but decided against that, incase you were confused about that.
Thank you for all the love and support, I can’t do this without all your love.
Lia and Liézel
