For the past seven years, we've been supporting and raising awareness of the pink and blue ribbon in October, in honor of Arianna and all babies who were ripped from their families arms from SIDs, stillbirth, etc.
Starting this year, we are supporting and raising awareness for the grey ribbon for brain tumor/brain cancer awareness month in May, obviously in honor of Sierra. No more ribbons!
Sierra continues to trudge through the okay moments and the awful moments of this recovery. We hold on tightly to the okay moments, but they seem to disappear before our eyes after such a short time. She is struggling, on every level. Physically, emotionally, mentally, this is hell. Our other kids are struggling emotionally. Ken and I are at a loss. We listen. We cry with them. We hurt with them. We encourage them all to share. But the sadness of watching their sisters physical and emotional health deteriorate is impossible to ignore. As parents, we would die or kill to protect our babies. They are our world, our main priority over anything else in this world. And yet, reality is, no matter what we do or how hard we try, what we do right..... we can't make this pain go away. We can't keep them blindfolded to what is happening around them. We can't shield them from the heartache and fear.....and that reality is beyond crushing.
So, I don't know what the next step is, to be honest. She had her EEG this morning, and an appointment with the neurologist. Thankfully, no seizure activity was found. They will recheck in 2 weeks. No evident seizure activity is great. No answers on what to do with her symptoms, is overwhelming. Wish there was a quick fix. For now, we're going to change up her medications. She was in the hospital last night for a bloody nose and vomiting of blood so severe that it made our bathroom look like a crime scene. There were no injuries or dryness in her nose, so the only thing they could think of was maybe the combination of meds that she's on, as some can act as blood thinners.
She sees a cardiologist next week for her heart rate and murmur. And now, an ear, nose and throat doctor is getting on board. We're getting a counselor on board. Looking for a support group for kids going through this. Keeping up with the frequent MRIs, regular kidney ultrasounds, regular appointments with every other doctor. It's a lot, and I don't know how to always keep up. As Sierra said the other day, 'this just sucks!'.
Pray for us. As a family. We all need some kind of supernatural strength to get through these days.......they feel impossible.
