We are Frazer & Dana Gieselmann - we have 3 girls, Ann Carlyle (8 yrs), Milla & Elle (5 yrs). In Aug 2013, Milla had her first seizure just before turning 3yrs old. We started this blog primarily to give updates on Milla's condition. In Oct 2014, we learned that Milla has Batten Disease, a rare & fatal brain disease. A few weeks later, we learned that Elle also has this disease. Milla passed away Nov 26, 2016, just 3 weeks after her 6th birthday.
Tuesday, April 14, 2015
Just wanted to send a quick update and ask for prayers for us - Elle and I are at LeBonheur in a room and she is all hooked up to her continuous EEG (also being continuously video monitored).
She was a bucking bull getting her EEG leads placed but about halfway through, she calmed down. She’s been curious about her ‘ponytail’ of wires and her turban but she’s really been generally okay with it all. She does keep saying, “Go,” but she’s hanging in there with her toys and videos so far and right now she is napping. (Yay!!)
Please pray for seizures while we are here!! I know it feels weird to pray for seizures but that’s what we need her to do while we are here.
Also pray that she stays content with all those wires, with being confined, etc. There is a playroom we can visit that is set-up to monitor her, but other than that, we are stuck in this room. We can’t even wander around in the hallway. I remember worrying about this with Milla’s first EMU stay - we were here for 6 days - and she was so busy and boisterous back then. But she really did okay…praying that Elle is okay with all this for a few days.