Limitless Levi

Last night was Levi's first sleep study!
He was so patient waiting to get all hooked up and ready. ✨💚💙

Muscle juice days are getting trickier the more we have. Levi is understanding what is going to happen and starting to ask why and saying he doesn't want it.

One thing that makes it easier is our medical play set from Grant’s Giants Pompe Awareness Nonprofit. It makes the process easier and less scary having his dinosaur friend to go through it with him. Every infusion and even on random days we go through the process of setting up Mr. Dinosaur with his muscle juice.

Between infusions, therapies, specialist appointments and everything in between; this life is not easy. But there are supports out there to help us through it. There is an incredible community that is always there to lift us up when we need it. 💚💙

Something tells me Levi is ready for spooky season... It's a potion mixing Monday in his standing frame today! ✨🧪💚💙

Levi is very determined to walk and run with his friends, this is part of the work we are doing to help him reach that goal! 💪🏻❤️

Saturday afternoon infusion today.. number 54! I'm not sure how it's possible we are up to 54 already.
This journey feels like it started yesterday but also feels like it's been a million years.
So grateful that we are able to have these infusions to keep our little guy living life to it's fullest!

💚💙💚💙

T'was the night before early morning infusion and not a creature was stirring... Except this mama setting us up for what we hope to be an easy day!

It has been 2 years of Levi being on Enzyme Replacement Therapy. It's crazy to think of where we were then and seeing all that he is capable of now. Oh and this is just the beginning!
I can't wait to see all the wonderful things he will do in this life. 💖

After a crazy busy couple of weeks we are back to our regularly scheduled programing- of course that means muscle juice while at the Eras tour 💖🎉

Levi's infusions are about 5 and a half hours so it's definitely interesting trying to keep him busy! Doing our infusions at home now gives him much more freedom but he still has to bring his IV pole around with him and be cautious of the tubing.


In other news... This little guy will be 3 on Wednesday! You are clever and wild like a velociraptor and even more brave!
Keep shining my little star ✨💚💙

Taylor Swift

It's muscle juice Monday and this little bunny is enjoying a sweet treat while he gets his infusion. 💚💙🐇

https://m.youtube.com/watch?v=ecRCw4NKcJ8&pp=ygUSbm9yZCBwb21wZSBkaXNlYXNl

Here is a great explanation of what Pompe Disease is from the NORD website. 💚💙

Pompe disease - causes, symptoms, diagnosis, treatment, pathology What is Pompe disease? Pompe disease, also called glycogen storage disease type II, is a genetically inherited condition caused by insufficient functioning o...