Diet and Growth

Diet and Growth

One of the biggest hurdles Littlest has faced in life has been eating. Anything mouth based, really, is a struggle. He didn’t start speaking until he was five years old, he hasn’t been able to swallow anything since he was breastfed, and he has a pretty...

Waiting

So much of life with a terminal diagnosis is waiting. Waiting for the next diagnostic procedure to help the doctors treat. Waiting for insurance to cover (or deny) whatever treatment or care plan the doctors agree upon. Waiting for the next step in the progression of...
Allowing for Help

Allowing for Help

I just got off the phone with a nation-wide home nursing company. While answering the questions the recruiter had for me, about Littlest’s health, our family’s needs, days we need covered (and nights!), and all of that, the recruiter mentioned in passing...
Remembering Memories

Remembering Memories

Have you ever had something happen, and in the moment you didn’t realize exactly how big the thing was? That was me five years ago today. Littlest was struggling with Failure to Thrive (ftt) post-decompression surgery. He had a regular weight check at his...
Rainy day thoughts. 

Rainy day thoughts. 

#Littlest had one of his annual radiology exams today. Good news, for the most part, but the radiologist did recommend we talk to orthopedics about his spine and hips–which we were planning on per neurosurgery from the hospital stay in Dec., we see neuro next week and...

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