I haven’t posted an update from Olivia’s MRI/MRA and appointment with her Neurosurgery team yet because it took me almost a week to process. What we hoped for was a clean scan, no progression, no new strokes. What we got was not that.

Olivia’s MCA arteries that started with MoyaMoya are completely dissipated in those areas. Her disease progressed FAST and HARD. We also found out that her MoyaMoya has progressed and begun to narrow her ACA, which supplies blood to the front of her brain. When I tell you I’m so frustrated that’s an understatement. When Olivia’s previous MoyaMoya began in her MCAs they went from 0-60 in no time, so the expectation and concern is this will again happen in her ACA. This is also worrisome because her brain already doesn’t get enough blood from the MoyaMoya affecting her MCAs, and the bit added with her previous bypasses is not enough to supply multiple areas of the brain.

So guess what that means? We are on surgery watch….for another Brain Bypass Surgery on her ACA. Especially as she is growing and will be going through growth spurts soon, as the MoyaMoya progresses, and the assumption is it’ll progress fast like the MCAs did, it won’t be enough, and will require surgery.

How is it that we have to be in the same situation again?! How is it that what was supposed to help her last time nearly took everything from her, and we are expected to do it again, and face that possibility again?! How do you recover from that again?! Without the surgery Olivia’s brain will face serious complications, so when it gets to it, not doing it isn’t an option. How do you prepare to face doing the last 3 years ALL over again?! How do you bring yourself to face that stroke damage like that again could be 10x worse?!

As if that wasn’t enough, due to her seizures and required blood thinners she has micro hemorrhages in her frontal lobe, which is where the ACA feeds so it’s an entire circle of issues. AND as if that wasn’t enough she has a pocket of fluid and swelling in her frontal lobe as well.

When I tell you I’m exhausted, stressed, mentally tapped, I mean it. When you know the likely outcome of a surgery that has to save her life, very well changes it for her entire life, how do you bring yourself to be at peace with that?!

What does this mean? Increased brain scans, increase in seizure meds, more precautions and restrictions, frequent check ins with her Neurosurgery team at Boston Childrens Hospital, and monitoring headaches. With how fast her MoyaMoya progresses, it’s a matter of time before surgery has to happen.

We are going to get her fitted for her wheelchair tomorrow to help with her mobility, and pain with her feet, legs, and hips. Her stability isn’t super great, and she tires and is in pain easily. So, we are hoping to raise enough to cover the approximately $8,000 it will cost for the type of wheelchair they want Olivia to have. This is the cost after insurance

we are hoping to celebrate Olivia with a trip for her birthday before her life very likely changes again. And with the previous strokes, and three years of hard work, we are not sure what she will be after surgery.

Hug your kids right, tell them you love them. Because life changes SO FAST.

Thank you for supporting Olivia!

#MoyaMoyaStrong #PediatricStroke