The Gieselmann5: Finally! An Update!!

Frazer is awesome and wrote a loooong overdue update for us... :) See below...

Wow, Dana has not provided a long update since April and only a couple brief ones since then! I hate to disappoint, but this is not one of the famed updates from Dana. I wanted to provide a brief update on the family and I hope to follow up with a few additional and more general thoughts in a day or two.

Since Miles 4 Milla in May, we have cruised through the summer and are rolling in the new school year. We love you all and will follow with more details in the future.

Just kidding.

Seriously, the summer was good and bad, like much of life is for all of us, right? I tell people that it seems like the dust has been kicked up in the air and never settles.

- We went to the BDSRA conference in July in Nashville and it was great to be there and see many of our friends in the Batten community. We were thankful that Dana’s parents were able to join us.

- We tried a beach trip, but the first day, Elle got a fever of 103 and high heart rate and generally was not well. We decide to bail and came home the next day, which was the right call. Traveling is so hard on Elle Belle and this trip really drove that point home.

- Ann Carlyle did a camp for a week, her first away from home, and LOVED it!

- Dana, Ann Carlyle and I got to go to Camp Good Grief for an afternoon in June and serve snow cones to the campers and volunteers, that was a lot of fun!

- My work has been good and no big news to report there, which is a great thing.

- AC has started 4^th grade at CMDS and is loving it so far…except for homework, which no one loves.

- Dana is in a good place. She would not tell you this and I am not saying things aren’t hard, but she really is coping and moving through our days, weeks and months with strength and peace. There are a number of reasons, some known and some unknown, but at the end of the day, she is placing her foot down for the next step with boldness and the whole family benefits from this gift given to us!

- We had a trip to Ohio to see Dr. Emily for a six month checkup. No big news, great to have her team see Elle.

- Elle Belle, well, that’s a hard one. In some ways, she really is doing good and in other ways, we see the disease progressing. The effect travel has on her or when she gets sick, reminds us how fragile she is. Her seizures seem more frequent and lasting longer, so we are considering changing one of her meds later this fall (waiting on an FDA approval of a label). The disease progresses, slowly, but not slow enough. It’s amazing how much more she looks like Milla Willa every day, and sounds like her from time to time (see pics). She is generally a happy kid as long as you are not bathing her or changing her clothes. Night help has been better and more consistent and we are grateful for that.

We are cared for, provided for and loved well by so many and we thank you for that!

Please consider joining us on September 30 for the Good Grief 5k at Memorial Park. Here is the website: https://campgoodgrief5k.racesonline.com/home

Lastly, We have been blessed to have AC and Elle to receive horse therapy sessions from our wonderful friends at Southern Reigns through a scholarship they provided for us. Elle and AC love the horses and the time, but we have recently come to the conclusion that Elle is just too weak in her core to continue doing this right now. We are on break and maybe someday down the road, we can rejoin. Southern Reigns is such a wonderful organization and horse therapy is such a blessing to those fortunate enough to have it. May I ask that you consider supporting their “Hay for a Day” campaign? Info is below and following that are a couple of Elle pics from our Ohio trip.

Fraze