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.
PREGNANCY
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
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
Dear Misty,
ReplyDeleteThank your for sharing Haven's journey with the photos. It must have been so heartbreaking to know something was wrong with Haven and not be able to receive the right answers.
Please tell Haven that I'm sending her big hugs and that I hope she had a good Saturday and that tomorrow will be even better.
Keeping Haven and family in prayer.
With caring prayers,
Wylene