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, March 22, 2016
Mostly Much of the Same...
So I may just start doing the date as the subject line. Boring but coming up with a title is brutal. :) Not my thing.
Anyway, quick (I think) update...
Not much has changed. Milla's tremors are still super bad. We had our appointment with the girls' neurologist a week ago and also got an EEG last Wednesday to make sure she was not having a ton of seizures. Sure enough, her tremors and muscle contractions are due mostly to her disease and not seizures. As I've said before, this is pretty hard to process (not that seizures are good) because this confirms that her brain is further degenerating and her disease progressing. We are entering a new phase of this with her. Disheartening to say the least.
We are increasing Milla's valium, with hopes that it will calm some of the tremors, especially at night, so that she might sleep better. Her whimpering at night has been a bit better, but she is still waking up a lot. And some mornings, like this morning, she is up at 2 or 3am for the day. Lack of sleep can exaggerate all of her symptoms, so, of course, we want to combat that.
We are also adding another drug she has been on before to help decrease her oral secretions. She has been choking, mostly between meals and at night because she can't manage her saliva...hopefully, this will help without causing pooping issues, dehydration, etc.
Another way we see progression is just her body not being able to handle stress. Sunday night around 10pm, she woke up with a massive nosebleed. It took a bit of time to stop it but all in all, it was fine (the nosebleed part). However, it took about 2 hours and 2 extra doses of valium to get her body to relax enough to go back to sleep. Her whole body was contracting and shaking. It was awful.
Also, Elle continues to check out and seize and fall and get bruises and bumps. She's about the same as the last time I updated, I guess, but we have since increased her depakote (seizure med) a good amount. Just like with Milla, we feel that we are moving into a new phase with Elle and we are trying to adjust to this new norm.
Let's see, what else...
Atlanta was great - exhausting but it was so good for my soul to be with my sister for a couple of days and we were glad Lucy and Ann Carlyle could be together too. :) By the by, if you ever have the opportunity to go to the aquarium there, you should go!! It is wonderful!!
Oh and I have had 3 consecutive nights of good sleep!!! I am feeling sooo much better. Still processing and dealing with very hard things, but I feel more stable at least. Oh how I love sleep!!!
Praying for a meaningful weekend for us all, as we reflect on and celebrate our Jesus, Who died on the cross for our sins and rose from the dead! How amazing.
As usual, songs fill my soul...and these words struck me especially deep this past week from How Deep the Father's Love For Us...
"How great that pain of searing loss,
The Father turns His face away."
Oh how He knows our pain.
"I will not boast of anything,
no gifts, no power, no wisdom,
But I will boast in Jesus Christ,
His death and resurrection.
Why should I gain from His reward?
I cannot give an answer.
But this I know with all my heart,
His wounds have paid my ransom."
(The whole song is wonderful and beautiful. I encourage you to look up the lyrics and/or listen to it.)
He is alive!!! Much love to you all!
Cozied up with Milla for her EEG
Milla getting some hugs and love from Sissy (Ann Carlyle) - how I love this picture!!!!
Ann Carlyle, Auntie Dawn, Lucy and Dana at The Georgia Aquarium