Monday, July 30, 2012

The Scoop on Selah’s Skull Lumps

Selah saw her reconstructive surgeon, Dr. Harshbarger, today regarding the fluid-filled lumps all over her skull.  He said this can happen post-surgery, usually 9-15 months post-op.  Selah is 11 months post-op.  Our biggest concern was the largest lump that was red with a white center, which appeared to be infected.


Dr. Harshbarger wants to watch it to see if the infected mass gets better on its own without antibiotics and/or lancing it.  He wants to see Selah next week to inspect again.


Dr. Harshbarger explained that Selah is having an exuberant inflammatory response to the biodegradable plates and screws in her skull that might take up to 3 months to resolve/disappear/lessen.  Her skull is literally covered in fluid-filled lumps that are about the size of a penny, but only one of these is infected.


Selah’s lymph nodes behind her ears/in her neck are massive, about the size of a small egg, which indicate her body’s inflammatory response.  The body apparently thinks there’s infection at the site of the various plates and screws, so it’s sending white blood cells there to fight “infection”, resulting in these pus pockets all over Selah’s head. 


Luckily, Selah’s crazy curly “fro” conceals the majority of the lumps, except for the one that is infected.


And, as you can see from the blurry photos, the girl won’t sit still for anything!!!  In fact, the nurse who was trying to take photos of Selah’s skull gave up after 15 minutes of trying, and this was with Selah contained in a Bumbo seat that was suspended in the air on a tall stool.


Which brings me to another prayer request for Selah.  Her brain is literally always on overdrive.  She must move at all times, more than even “typical” hyperactivity.  All of the doctors and specialists who see her say they’ve never seen a child like her, which is coupled with the fact that they’ve never dealt with a case like Selah’s miracle story.  No one knows what to expect with her because they don’t have data on a situation like hers since she shouldn’t have survived birth and was expected to be stillborn.  So, Selah’s neurological issues are novel for all involved with her case.


What we know is that Selah’s brain isn’t able to self-regulate and calm down, even with physical and occupational therapies that would help a typical brain to regulate.  She is off-the-charts-always-in-overdrive mode at all times, including sleep times.  I have to say that while we marvel and rejoice in the miracle of Selah, we all need some down time.  The longest Selah has ever sat still is 8 seconds.  Literally.  5-point harnesses are her enemy, like a straight-jacket to her spirit.  It’s horrible.  Selah MUST move, as in physically move AT. ALL. TIMES.  She doesn’t quietly play with toys or dolls or look at books or watch movies or anything.  She is constantly moving and climbing.  She won’t stay in our arms either.  If she sees something she could possibly climb, she must do so.  Like, for instance, climbing the cabinets using the cabinet pulls like it’s a rock climbing wall.  Climbing into a chair, not to sit, but to climb to the back of the chair like it’s a step to the next highest place.  It’s never-ending excitement with Selah without an iota of down time or “off” time.


Selah’s neurologist can’t see her until November 13.  She will have her sleep study August 28.  In the meantime, everyone is stumped at how to help Selah’s brain regulate.  We’ve found Daddy’s tractor is the only thing that helps her, which involves the loud diesel motor and lots of jiggling.  We try to emulate this in other ways, but it never works.  So, tractor time it is when we all need a break. :-) 


We praise God that there are many hands on this team to help supervise Selah.  I know none of us could do it alone.  Even with sheer exhaustion, we always ALL agree that Selah is one of the greatest blessings on earth.  Thank you, Jesus, for sending this little miracle girl to us.  We are always grateful, even when we’re exhausted.

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