The morning consultation: quite whispers outside the door, a peek in, a glance in our direction. Same questions every day, can you open your eyes, can you move your foot, checking of swelling, checking of fluids, checking, checking, checking…. BUT today is different today they say he can move upstairs! It is a small step to some but in my world right now it is huge! It means he is improving. It gives me hope that MY AIDEN will return the witty, smart and strong boy who questions everything with his inquisitive mind. Although he is tentatively booked for a surgery Wednesday for a permanent shunt to regulate his spinal fluid it is not 100% that he will need it. He took his feeding tube out again somehow last night (4th time) so they are going to push to get physio in here to start working with him on swallowing and hopefully sitting up. He is a fighter and keeping the surgeon on his toes. The surgeon says he goes to bed with one plan for the morning but then gets here and Aiden surprises him with something new! Yes that is my boy! They say Wednesday at the earliest we will find out the “name” and things might change again but for right now it is a WIN!
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. If you follow Aiden’s Voyage on MamaOutpost please consider making a donation to help with medical expenses and daily living expenses for our family. December 2017 we were given a life expectancy of a couple months. We are now in year three and fighting everyday to beat this awful disease but with that I have been unable to work and at this time have exhausted all funding sources. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)