We’ve been off the leads for a while, but the 25 gluey electrodes are coming for Rhema’s head again.
It’s EEG time.
For those who may not know, Rhema was diagnosed with a rare seizure disorder at age 2. Landua Kleffner Syndrome is notoriously hard to treat, and Rhema has endured numerous hospital stays for long-term monitoring, countless EEGs and a myriad of anti-epileptic medications.
Last year it was determined that she was not improving on a high dose diazepam protocol. In fact, her EEGs were getting worse with tests showing her brain spiking 58 times a minute. We decided along with her neurologist to take her off all anti-seizure meds and just see what happened.
What happened was God’s amazing grace. Instead of regressing, Rhema has made tremendous gains this past year – emotionally, socially and academically. Perhaps more importantly she’s been able to retain what she’s learned – that has not always been the case. Many children with LKS suffer seizures during sleep. But she has had more nights of great sleep than ever before – a huge cause for rejoicing in our household! There have been very few outward signs of seizures of any kind. For a whole year! Gone is the girl in a fog.
So, friends, my prayers as we head into this 24-hour EEG:
1) That the technologist, Brandon, Rhema and I all survive the 90-minute EEG hook-up. It’s at least a 3-person job. Even though she’s been through it many times, Rhema gets so upset and scared – she fights us with everything’s she got. When she’s frightened she turns into the Incredible Hulk and can break out of those straight-jacket papoose things no problemo. Once a technologist nearly gave up mid-way through applying the leads and asked me to try another hospital. Today I plan to bring cupcakes for the EEG team, oh yes I do.
But it’s torture for my girl. The glue, the vacuum, the gauze, the sights and sounds, the lying down, the handling of her head. Torture. I’ve tried talking her through it, singing to her, kissing her hot cheeks, never knowing if I’m helping or hurting. I just hope she feels a little comfort knowing I’m there.
2) That we would get a good result. We desperately want to avoid another cycle of endless EEGs and drug trials.
It dawned on me while writing this that I’ve never really asked for prayer outright on this blog. People have just prayed for us without me even asking. So many children and families have touched my heart through blogging; I’m praying with you, too. So comforting to know we can lift even the simplest concerns to the Father, and He hears.