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.
Monday, May 9, 2016
So many of y'all have been asking how we are doing...thank you so much for caring about us and praying for us and taking care of us!
The good news is that we are all infection-free/healthy! Thank goodness. Those sinus infections hang on for.ever.
The bad news is that both Milla and Elle are still not doing well.
Milla continues to weaken. She sometimes isn't able to/doesn't want to bear weight but she is able to other times - although she fatigues quickly. Her tremors have worsened, her eye-rolling seizures are much more frequent and she has developed some spasticity in her wrists and legs. She isn't holding herself up as much as she was which makes getting her into a good position much more difficult. As a result, her spine is staying curved now. We will be seeing an ortho doctor soon to see if there is anything we need to do for her spine/posture. She is choking more frequently due to her secretions and she has had a couple of nosebleeds that have caused a good bit of choking. We will be seeing the girls' neurologist next Monday for a checkup.
Elle is also progressing. She continues to have falling/balance issues. Her absence seizures have been noticeably longer and more frequent. Her checking-out episodes have increased as well. There are times of the day that there is almost no break from seizing and/or checking-out. She has also had a handful of times in the last week that she is unable to get up after falling. A couple of times it seemed she couldn't figure out how to get up and a couple of times it seemed her muscles wouldn't work. She was unable to jump with both feet this morning. She has braces now for her legs that help her bring up her toes as she walks/runs to cut down on some of the falling.
It's a lot. A lot to carry. A lot to do. A lot to process.
Also, please pray for Ms. Melba - Milla's one-on-one teacher at her preschool. She was diagnosed 2 weeks ago with ovarian cancer. Ms. Melba will be having surgery Wednesday and then she will start chemo. She and Milla are so very connected...this is so hard on both of them. I cannot begin to describe how special their relationship is - they love each other so much. Milla cried when I left her at school last week without Ms. Melba being there. Please pray that Ms. Melba will have the strength she needs and that the surgery will not have any complications. Pray for her healing. Pray that Milla will find comfort and understanding. Our hearts are so burdened for them both.
Pray for continued wisdom as Frazer and I have to make decisions regarding the girls. And pray for wisdom for their doctors, therapists, nurses, etc. We are so very thankful for such an amazing team of people God has gathered to care for Milla and Elle medically - people that care so deeply for them and all of us.
Please pray for strength of heart and body for me and Frazer.
Please pray for Ann Carlyle as she sees her sisters' disease progressing. Right now, she is sailing along very well and is being such a sweet and attentive big sister. Her love for her sisters grows everyday and while there are still plenty of sibling squabbles with Elle, she is becoming much more patient and I see her nurturing them and serving them. It's beautiful. Pray that she runs to Jesus for comfort as she sees us run to Him and that He will continue to draw her to Himself. Pray for her little heart.
Thank you all x a million zillion. I am constantly blown away by the little and big and everything in-between things that you people do for us. God is so good.
"When I said, 'My foot is slipping, Your love, O Lord, supported me. When anxiety was great within me, Your consolation brought joy to my soul."