A good day – Day 3 in Milan
Ella and I started the day at 8:30 at the hospital. An EEG was the first test on the schedule for today. A test that she despises and from what I remember after talking with other kids who have to get them, she is not alone. I’m not sure if it is everything they put in her hair or just the idea of not being able to move much. Thankfully she did an amazing job today with everything and I am so proud of her.

After the EEG she went to meet with the psychologist for a two hour neuro-psych examination. Thankfully she has known Dr. Francesca for years now, so it was not anything she was nervous about. She did a great job and then it was time for a break to eat.


Ella chose pizza again 🤣
After lunch we went to see the dermatologist, followed by the cardiologist. Everything could not have gone any better today and we are glad to have another day in the books.

While we were at the hospital, Eli had the day off, so Hut took him to breakfast and lunch where he had his first chocolate croissant and yes, another pizza for lunch. He actually ate the whole pie!!


Tonight we had a wonderful dinner at the Chinese pizza restaurant by our residence with some amazing friends that have welcomed us in Italy with open arms from day one, ten years ago. The gratitude I felt tonight looking at these kids filled my heart so fully that there are not enough words to describe. The pictures tell a beautiful story of friendship that has made many days brighter here in Italy.





Today when I took a walk to get some alone time, I saw so many turtles in the same place sunning themselves and of course the fish that we have enjoyed feeding over the years. I did get yelled at in Italian to stop feeding them though. I think they are getting too big 🤣maybe that’s why.


I received an email today while at the hospital, and we were invited someplace very special tomorrow which I will share tomorrow, but it will be very meaningful to us.
All in all, it was a great day and no real complaining except from Eli who is ready to be home in his own bed ASAP.
They are finally falling asleep as I finish writing and as they were, Eli asked if we could pray. It was simple prayer of thanks for Chinese pizza and a beautiful day. I love his heart so much and I hope to continue to appreciate the simple things, just like Eli!
~ by Rebecca on April 18, 2023.
Posted in Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: appreciation, changes, clinical trial, day by day, eli and ella, Eliandellasprayerwarriors, family, friends, gene therapy, gift, God, gratitude, growth, happiness, healing, Hero, hope, hospital life, journey, learning, lessons, life, live, memories, metachromatic leukodystrophy, Milan, miracles, MLD, Mother Nature, never give up, past, purpose, rare disease, special needs, spring-ford, strength, struggle, thankful, warriors
What can I say. Eli has such a kind heart. He can inspire all. What I love about day 3 is all the pizza you ate. Definitely must be a family thing. There was a time in my life I could eat a whole pizza, now I just look like I eat whole pizzas. Prayers always for all your family!
Aunt Anne
He is having so much acid reflux from it, I think we need to take a break tomorrow 🤣
Becky I love hearing about your days in Italy and how the kids are taking all the tests and prodding. They have certainly been troupers! Despite it all, you do have many blessings to be thankful for and the MLD community owes you all a lot of thanks and gratitude for helping to advance gene therapy. I still remember the first time we met you all so many years ago. My heart has been with you all on this 10 year journey. I did have to smile how much Ella and Eli love PIZZA! Prayers continue for you all! Hugs!
Thank you so much!!
I do agree at how lucky we are in such an uncertain situation.
They are handling things so much better this time around.
I will never forget your kindness Teryn and your support !!
They love their pizza here for sure 🤣