Our little medical mystery…

I always love visits with Dr. Fuchs, Harper’s neurosurgeon.  Naturally, we think he’s great as he worked so hard to save our baby’s life.  But he also has such a calm manner and way of explaining things thoroughly in a way that we can totally understand, which is so helpful given all of Harper’s history.

Today’s visit went well.  Basically, the c/t scan Harper had on Friday was the first “normal” scan that she’s had, so it is serving as a baseline at this point.  Her previous scans were done very close to her surgeries, so her brain was still recovering and reorganizing.  As Dr. Fuchs pointed out again today, Harper is far from a textbook case.  Her condition has been unique and special from the very beginning, and she is still keeping everyone on their toes.  The cysts that developed in her brain were not true cysts- in fact, he still is not able to identify what they are or where they came from.  It’s a total mystery, and that coupled with the hydrocephalus and brain hemorrhage have made for some interesting brain scans and images!

The most recent c/t scan shows that her left ventricle has decreased significantly in size and is much closer to normal than it was initially.  Her midline shift has straightened out… initially her midline was disorganized and all over the place, but now you can actually see a line going down the middle as it should be.  Her right ventricle is still very large and contains fluid.  Basically, the cysts had caused much fluid to back up in her ventricles and that compressed her brain tissue.  The cysts have been drained so that the fluid can flow naturally, but for now the ventricle is still large and hollow.  The goal is for her brain to expand and grow and fill that void, but it hasn’t yet.  Something has to fill that area, so for now it’s fluid.

So what does that mean?  Things are still up in the air, but no more than they ever have been with Harper!  For now, the fluid does not seem to be causing increased pressure- Harper is still active and responsive and interacts with us and is showing signs every day of developmental improvements.  There are no bulges in her skull or soft spot, which would occur if pressure was mounting.  Therefore, there is still no immediate need for a permanent, internal shunt.  That is an option that will forever be on the table for Harper, but right now she’s managing fine without it.  We do, however, have to keep a close eye on her for any indications that pressure is increasing, and she will return to Duke in a month for an MRI under general anesthesia with Dr. Fuchs to get a better idea of what’s going on with her brain growth and development.  No one is really able to predict what areas of Harper’s brain have been damaged and the extent of that damage, and she certainly has proven that she doesn’t follow anyone’s rules or expectations!

As hard as it is, we keep pushing forward, taking it a day at a time, and try to accept that it’s all in God’s hands!  As a mom (and, let’s face it, a control freak), it is a serious challenge to let go of the reins and continue following Him into an unknown future… but for now, thanking God that He gives grace for each moment as it comes, and praising Him for the miracle of every smile, every coo, every giggle, every snuggle…

Which brings to mind this great song… “Miracle of the Moment” by Steven Curtis Chapman

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