I have never been so relieved and excited as I did when the medical transport team carrying Hannah and I drove up to our house to take us home. I couldn’t get out of the van fast enough to get the door open. I needed Hannah to be home, and now she is here. Finally. […]
[Continue reading...]Balancing Medications
18 Oct by
Even though I know our overall decision to keep Hannah ‘comfortable’ is the right one, I find myself constantly actively reminding myself of this when she is asleep most of the day under sedation. She is so peaceful, so angelic looking. I love to snuggle with her, caress her face, brush her hair with […]
[Continue reading...]Comfort Care
16 Oct by
After Daddy and I made our decision on how to treat Hannah’s care from this point out since she is now considered “end stage,” we decided to just bring her home and spend the rest of her time with us. It was really important to me to have her home so we can just give […]
[Continue reading...]Decisions
15 Oct by
When we sat down with Hannah’s doctors a couple of days ago after her neuro, intensivist, and NIH pediatrician all concluded this was likely “end stage” of her disease, we were forced to make decisions on what to do next. It took them 4 days, but they finally got a drug combination that sedated her […]
[Continue reading...]“Tremendous”
15 Oct by
I have never hated a word so much in my life. I never knew I hated this word so much until just two days ago. This was the word Hannah’s neuro used to describe Hannah’s condition to her NIH pediatrician. “Tremendous amount” of white matter loss in her brain, according to her latest MRI. […]
[Continue reading...]My baby
14 Oct by
Hannah’s condition is continuing to deteriorate. We are working towards figuring out what is best for her at this point as well as what is the best way to help Ethan and Abby. To my family and local friends, please don’t talk to Ethan and Abigail about it – right now, we want to let […]
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