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.
Wednesday, June 4, 2014
LeBonheur - Day 1
I wrote this last night (Tuesday) but forgot to post it until this afternoon. I hope to get out an update for today soon. Tuesday 6/3/14 Hey y'all! So it's been a long day...and still going...
We got here at 5:30am but of course Milla didn't go down for her MRI and lumbar puncture procedures until 3:00. I am still waiting on her to be finished, so I thought I'd write a quick word.
Even though nothing has really happened yet (she isn't even hooked up to the EEG - they will do that when she gets back to her room), I feel like I can't catch my breath.
We may be starting the ketogenic diet as early as tomorrow. Breath. Can't catch. Frazer and I will be meeting together with Milla's doctor at 9am to discuss all this and the preliminary results of the MRI and lumbar puncture.
Please pray for this meeting and this decision we have to make - we are not sure if we should go ahead and start the diet or wait a few weeks, come back in-patient, and start in July when we have had time to research and prepare. Again, this diet requires extensive research and planning. It also would be good to be able to prep the pantry (throw things out, hide certain foods), prep her body and prep her palette. And of course, to prep me and Frazer.
I was able to talk to a mom here at the hospital that has been doing the diet for 1 ½ years now and her son is doing great. She was VERY realistic about it and helpful and so sweet - she gave me her email and number so I could call her to talk more about it before and/or after starting the diet. She lives in Nashville and they were discharged today - I feel confident that God placed us here today (instead of tomorrow) and delayed her leaving until we were able to chat. It gave me many answers to questions and a bit of peace about it all.
Milla did so great today - being starved and having to be stuck multiple times for her IV - barely fussed at all. But due to being up super early, as well as having no food and no meds today, by mid-day she was definitely feeling pretty crummy and seizing a lot.
...Just got word Milla is being brought back to the room now and had a bit of a conversation with her doctor. Everything went well with her procedures.
Please pray for her doctor this evening as he reviews all her results and then in the morning as well. Please pray that he will have wisdom and knowledge and clarity. Please pray for our meeting that we will ask the right questions to get the answers we need right now. Answers to ease our minds and also so that we can make a good decision about moving forward.
I have to sign off quickly - but thank you sooo much for all your prayers and encouragements!!!! God has been merciful today in so many ways - even in ways I haven't been able to detail yet.