So I've been working on a little project in my spare time! After talking with someone last week and go over everything we've been through for the past 6 years I realized it's a lot to remember. She kept asking questions and I kept digging in the back of my head about what had happened and what we'd been through. It's really best to see our life through photos. So I made an online time line. You can click each link below to see the different years and affects of ROHHAD Syndrome and Neuroblastoma Cancer and our daughter's life.
BIRTH TO AGE 1
AGE 1 TO AGE 2
AGE 2 TO AGE 3
AGE 3 TO AGE 4
AGE 4 TO AGE 5
I'm still working age 5 to age 6 but last year was an insane year of isolation and tooooooo many doctor visits. We spent about 180 days at Hopkins in some form. So that leaves me with lots of photos to sift through to tell the story.
I hope you enjoy our first five years as we have many more to live. I can't say how hard this has been for me to work on. To look back and remember the pain, anxiety, worry, and how we are still living with this horrible disease and still have no more information about it than we did 2 1/2 years ago at first diagnosis.
Love to all