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, June 21, 2016
Hey guys! Things never really slow down around here!
Elle had an EEG last week which was pretty much unchanged since her last one. This is not great news because it means that she's not having an increase in seizures but that her disease is progressing. Also, we are seeing a noticeable increase in muscle weakness.
We seem to have gotten a grip on Milla's muscles tremoring and increased tone (aka muscles flexed). She still has times that she's pretty locked up but her med cocktail is working. But she has also been pretty tired and out of it lately. I'm sure some of it is due to her medication. This is hard because we don't want to sedate her but we also don't want her muscles contracting all the time. Please continue to pray for wisdom and peace with decisions we have made.
Frazer and I were (somewhat last minute) able to take off to Cancun for a few days weekend before last. It.was.amazing. It was super hard to leave our girls but it was so very wonderful being there. We had family and friends that gave of themselves tirelessly so that we could go. Big shout out and a big THANK YOU to them! We could not be more grateful for this getaway. :)
Those are the highlights from the past couple of weeks. Also, there are many, many things that I can't really talk about on the blog yet but that are up in the air for our family...we are not sure where everything is going to land...or when. But please pray for us with all this. Lots of big and heavy and complex stuff. I will fill you in when I can.
Elle started her new school today - she did ok when I dropped her off. Please pray for this transition for her...and me.
Ann Carlyle is at an art camp this week. She is the resident artist of our family - her creativity amazes me!
Milla is doing well back at her school. They are taking wonderful care of her! By the by, Mrs. Melba starts chemotherapy today - please pray for her strength and peace of mind.
We are definitely in the just-do-the-next-thing mode. When I try to take it all in at once, I come close to imploding. So I have to constantly remind myself to do the next thing and trust God's plan for our family. My fear is unfounded as the paralyzing fear is only when I take my eyes of Jesus. He hasn't left me yet...and I know He won't ever let me go. His love and His power and His beauty are boundless.
Much love and a huge thank you to all for everything!
We went swimming with Mrs. Melba!
Stylin' in Auntie Dawny's sunglasses while we were in Mexico