Week 1 is done! We all (eventually) got over jet lag, Keira has been a trooper through all of her pre-screening tests, Eva has met many animals in the lake, and Livvy went on a swing for the first time in a long time and loved it!
The entire 1st week at the hospital was all about pre-screening tests to ensure everything came back normal and that there were no signs or symptoms of MLD (Olivia didn’t start showing symptoms until around 18 months old).
It started with a neurology and physical therapy evaluation, followed by audio/visual tests, an EEG, an EKG, an echocardiogram, an MRI, bone marrow aspirate and blood work. As well as meetings with the doctors to go over each test and the upcoming gene therapy treatment.
She handled it like a champ! She LOVES all the amazing nurses. And so far all tests are coming back great! 🤗❤🙏
Eva & Livvy’s Week:
What a change this has been for all of us, but as the oldest of our kiddos 5-year-old Eva has had the biggest transition. She doesn’t really get why we are living in a hotel currently and not in a home but is enjoying walks around the lake, has named the swans (Flute and Toot), and loves feeding the turtles and Koi fish. She also still joins her Kindergarten classmates at home via Zoom when they log on for their morning meeting (which is usually around dinner time here).
Livvy has regressed quite a bit in the past month and can no longer walk with assistance or crawl. Her speech is also limited to words like “Hi” and “ya.” So for her it’s all about sitting and playing with her sisters, us holding her and having dance parties in the room and laughing at her big sis while she feeds the animals in the lake. Despite her limitations the smiles keep coming and that’s what keeps us going!
Another major blessing is having my Mom and Dad here with us. It would be impossible without them! And it also helps give the girls another sense of home and normalcy that we are all here together. ❤