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, August 16, 2016
Hospital Visits and Schools and Bearing Up
We were at LeBonheur yesterday with Milla - she was getting her G-Tube converted to a GJ-Tube. She is having some reflux issues when she gets her meds through her G-Tube. The GJ-Tube goes into the small intestine (instead of the stomach), so we are hoping this will help the reflux. It was supposed to be a relatively simple procedure as they use the same G-Tube site and just put in a longer catheter. But it turned into a 7 ½ hour day at the hospital with a few hiccups and issues. She's okay today...sleepy and lethargic but that's to be expected due to lots of meds over the last 24 hours (including extra meds overnight).
Milla is also still having a lot of choking on her saliva. We have increased her dose of a medication that dries her up...but we have to be careful not to dry her up too much as this can cause, among other issues, a plug to form and make breathing difficult. As always, we gotta walk a fine line with these medications. We have also made changes with another couple of meds to (hopefully) help her tremors and tight muscles. She's having a very hard time with this and she has had a few attacks that have gotten so bad that her breathing has become erratic and she has been in obvious distress. I've had to give her 'rescue' versed and an anti-spasticity med to help her body relax. (Such as in the early hours of this morning.) We are still not sure exactly what these attacks are. They could be seizures, disease process, anxiety (due to confusion and not being able to see) - maybe a combination of all three. Her neurologist confirmed last week that her vision is mostly gone.
Elle is still weak and unbalanced and she is napping sometimes twice a day, but I do feel like she's gained a little bit of strength back after her pneumonia. We now have a small, very lightweight walker for her that gives her just enough support/balance that she can run around the house and move around a bit more independently (independent from other humans at least!). She is still having drop seizures so there are still lots of falling risks but the walker is helping a ton. Also, the walker is making her more active which will build up her strength and coordination...or at least maintain it.
Elle will be getting a routine 24-hour EEG this Friday-Saturday at LeBonheur. (Seems to be our home away from home at times.) Thankful it's just for 1 night though! Please pray that she will do her normal thing with seizures so that the doctors can get an accurate picture of what is going on in her brain. And pray that her mama won't go crazy trying to contain and entertain her in the hospital room!
Bottomline, both girls are continuing to decline a good bit day by day. It just doesn't get any easier. God's peace has definitely been ever-present as we go through each day. It is sustaining and I feel like I am being carried through all this. I am, of course, always struggling with my fears and grief and aches and questions and overwhelmed-ness but I feel joy too. Joy and love and...well, we are still standing and functioning (relatively!) so that's something right there, right?! :)
Ann Carlyle started 2nd grade yesterday and of course both yesterday and today we have had to wake her up to get ready for school. 99% of the summer, she was up at 6am and now we are having to wake her up after 7. Why do their little bodies switch over to wanting to sleep-in the minute they need to get up and get ready for school?? So we are having to switch gears for sure but she has a great teacher and a great group of kids in her class - I truly think it is going to be a great year for her. She's come home from school both days full of energy and excitement.
Ann Carlyle's little heart is continuing to grow in love and empathy and nurture with her sisters. She is full of patience and full of grace with me and with her sisters. (She is also full of energy and words, but anyway...) My cup runneth over with these girlies. They are all 3 so amazing and wonderful and special and beautiful and I can't possibly contain my love enough to put it into words. I am so very thankful I get to be their mommy. (Sorry for the cliche but it's just true.)
Frazer and I are hanging in there. Milla's had a lot of nights that she has needed extra medication so even though we have an aide at night, we are still having to get up. So we are exhausted from that and exhausted from the mental and emotional strain as well. Please pray that God will continue to sustain our exhausted bodies and that He will continue to give us the daily sustenance we need for our souls.
Also, please pray for Frazer's dad, Kent...he had a stroke a couple of weeks ago. He is okay...no permanent effects but they are monitoring his heart and had a heart cath today to make sure all is well. There are more than a few other health things going on with other family and extended family - please pray for our clan. Everyone is carrying an extra load of burdens lately.
On a positive note, Frazer's younger sister and her family came down from New York to visit this month. It has been wonderful to see them as we don't see them much and Meg (his sister) had a new baby boy this summer that we needed to meet and cuddle and hold! Frazer's other sister, Lea, who lives in Little Rock, came to visit as well and brought 4 of her 5 kiddos with her. As awful as Kent's stroke was, it was so great that all 4 of Frazer's siblings were in town at the time. And the gazillions of cousins have had a GRAND time being together.
People always ask how we are doing (it's the southern way). And I struggle to say 'fine' (again, the southern way) but also trying to be honest. Some days I guess we are relatively fine...no big changes/drama and floating along in our norm as best we can. Many days I am not fine. I usually say I am 'hanging in there.' (See above paragraph) But I've discovered something new...'bearing up.' (I think it is a common phrase in the UK.) I am bearing up - bearing a very heavy and chronic weight on my shoulders but still standing. And I don't always want to hide the weight of all this and act like all is 'fine'. I want people to know that I am bearing the weight but only because we have a Savior that loves us so and who gives us a reason beyond the broken details of this life to hope and to live.
"Blessed be the Lord, Who has not left you this day without a redeemer." (Ruth 4:14)
May you all have a wonderful week filled to the brim with joy. Much love,