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.
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
It's so weird to me that school is out and summer has started. May just seemed to fly right on by me. We are settling into a few weeks of life with no real routine, which is nice for a minute but it also has its challenges, as many of you know!
All 3 girls will be going to VBS this week...I'm so excited for them...I think they will all truly love it. Then Milla and Elle will be back, mostly, on their regular schedule with PDO and therapy appointments, etc.
Elle will also be starting a new school that serves disabled and non-disabled kiddos. She will go there twice a week for half day, along with going to her regular PDO school on the other days. We are hoping this new school will provide structure, socialization and skill-practice that she just can't get as consistently at home. For awhile now, I have been very overwhelmed trying to give the best attention and care and teaching and therapy (working on speech, occupational and physical therapy goals) to both Milla and Elle. Often, just getting through the day keeping everyone fed, safe and surviving is how we roll. And/or I am able to accomplish some work with one of the girls but I feel that I've neglected important activities with the other one. It is so important to keep working with both of them so that they retain their physical and mental skills for as long as possible.
Also, Elle just needs stimulation and constant attention. When those things lapse, she gets into trouble and/or gets hurt. And with caring for Milla, I have realized the Elle-trouble is happening a lot. Keeping Milla stimulated and physically moving is so, so important too. On and on. Bottomline, we feel like both girls will benefit from this and I will be able to rest a little easier knowing both girls are getting what they need.
So we will see! Elle will start her full-time schedule the week of the 20th. Ann Carlyle will have some day-camp things this summer. Milla will continue to go to PDO as well.
Speaking of Milla and PDO...we are so very thankful that she will be able to continue there this summer! And so, so thankful to God that her teacher, Mrs. Melba is doing well! Her surgery went great, her recovery has been relatively smooth and she has gotten some wonderful news from her doctor. Her doctor really feels that they got all the cancer and the cancer has not spread anywhere else in her body. However, she will get a few rounds of chemo just to be on the safe side, so please continue to pray for her - that her body and her spirit will be able to endure that difficult road - that she will be able to find comfort physically, that she will continue to be cancer-free and that she will make a full recovery.
Mrs. Melba and her daughter came by to see Milla last week. And, as they have not seen each other in 3 weeks or so, it was so wonderful for both of them! They love each other so much! We are making some plans to get them together often as the summer goes on. :)
Physically, both Milla and Elle are about the same. They are still struggling in the same ways I detailed in my last update. We carry on - praying always for ways we can help them.
Also, please pray for my body, which is decidedly beginning to show signs of wear and tear. I have had severe shoulder pain off and on (in both shoulders) the past year+. About 6 weeks ago, I found out the pain is from tendonitis in my rotator cuffs. I've just had round 2 of a steroid injection to help with the pain. Also, my lower back is all messed up. I'm not sure yet what is going on there (I have an appointment on the books to have it looked at) but I have shooting pain that runs down my leg all the way down to my foot. Sometimes the pain is on both sides and even includes my upper back and neck. No rocket scientist needed in order to realize why this is happening. Milla is 50lbs and cannot carry her own weight (and has legs for miles) so she's a very, very heavy and awkward 50lbs. Elle is 37lbs and is always throwing herself around and many times I am not grounded in a helpful-to-my-back position to catch her/save her/hold her. And I can't NOT hold them, carry them, catch them. It is what it is. But between my doctors and PT, maybe we can figure out some things to help the pain and prevent further damage.
So that is the scoop this week. Thank you again (a million, zillion times) for prayers and for help and for feeding us and for loving us in so many ways - all those ways, big and little, are important and we store them away in our hearts.
Oh one more thing - just because. I want to specifically say how thankful I am for Frazer and how he leads this family and goes to work day in and day out to provide for our family. And somehow he is able to do his job well in the midst of incredible stress and difficulty. He's amazing. Please pray for him as he carries a heavy load - some of the loads are the same for me and him, but some are very different. He is my rock, physically and emotionally. He is a fun and awesome dad. I love him so. Pray that he is able to persevere and sustain and that he will continue to be able to balance everything. Pray for wisdom and pray that he will not get discouraged and that he will feel God's powerful hand holding him up.
May the Lord bless you and keep you as you go through your week as He has certainly done with us!