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.
Thursday, May 26, 2016
Not too much good news this week, I'm afraid.
Milla continues to have more seizures and tremoring during the day and the worst of it is at the end of the day and in the night. The seizures are making it very hard for her to fall asleep and once she is asleep, she will typically wake up multiple times because her body is so tense/seizing. She's out of it more often and her interactions are less frequent. She will have good spots mixed in during her days, but those times are becoming shorter as she fatigues so quickly.
Also, she ended up getting hand, foot and mouth over the weekend. While she only had the sores/blisters in her mouth, it was awful and so painful for her - and she was so very lethargic. Thankfully, she turned a corner Sunday and started to improve from there. Everyone is healthy this week! Yay!
Not much good news on Elle either. She looks like she's been beaten black and blue - everyday more bumps and bruises. Tuesday morning, she fell hard and nearly bit through her lower lip. She had a huge, gaping gash inside her lower lip but fortunately she didn't have to get stitches. Her front teeth have darkened and her gums are all bruised. But, surprisingly, it hasn't affected her desire or ability to eat!
Also, Monday afternoon, I had a little wreck. Fortunately, no one else was in the car but me and fortunately, it wasn't my fault and fortunately, the man that hit me has good insurance. It was pretty minor but my car still had to be towed and will be in the shop for awhile.
So, we are going to play with Milla's meds to see if we can't control at least some of her seizures. And we increased one of Elle's meds last week and then a bit more this week - hopefully we will see some positive changes for her. As I've said before, it's always hard to balance the quality of life between seizure activity and its effects and being too drugged out. Please pray we find this balance for both girls quickly - without having to go through too much trial and error.
I'm feeling a bit better the last couple of days, but please pray for my heart. I have been struggling with a lot of sadness and anxiety lately - more than the usual that is always creeping in and out of my heart as we go through all this mess. Seeing Elle and Milla struggle so much and seeing Milla so lethargic over the weekend just flatlines me.
Please pray that God will continue to comfort and sustain all of us. An old but wonderful hymn...