Reactivating...

Oh, hi! It's us again. I won't lie, it sure was nice to let this blog go dormant for a while, but we're back.

Abby has made such amazing progress lately and has had so much fun getting to just "do life." We welcomed her baby sister, Joanna, in January, watched as Abby started walking independently, and cheered as she completed her first year of preschool. She made some wonderful friends this year and has been the best big sister ever, always ready to give "Baby JoJo" hugs and kisses. She asks about her sister first thing in the morning and wants to see her right before she goes to sleep each night. It's been amazing to see her take on this new role in our family.

We have been so happy with how well the last couple of years have gone, and we are looking forward to celebrating Abby's 5th birthday in August! But before we get there, we have at least one big hurdle to jump.

We found out last week at a routine ophthalmology appointment that Abby's optics nerves are swollen again, which means that her intracranial pressure is on the rise again as well and will require surgical intervention. After a quick MRI and a long discussion with her neurosurgeon here in DC, we've decided that the best course of action right now is to attempt revise her shunt in case it's starting to fail. If you'll recall, Abby had a VP shunt placed in Feb 2017 to reroute cerebral spinal fluid out of her brain ventricles after her intracranial pressure didn't go down enough post-cranial surgery. Unfortunately, shunts are prone to failing, and when they do, CSF starts to back up into the brain again.  The size of her brain ventricles didn't make it undeniably clear that this is what is happening, but there is enough fluid collecting on the surface of her brain to suggest that it *might* be the issue. The alternative is that she's outgrowing the size of her skull again. As this would require another extensive expansion surgery, we don't want to start there. If after the revision there is still evidence of high intracranial pressure, then we may have to cross that bridge, but we're going to hope that getting her shunt in a good place will be enough to at least buy us time. She'll have a venogram soon (CT with contrast) to give the neurosurgeon a visualization of the veins in her head, since this was a huge point of complication last time around. Surgery will take place mid-July.

Thankfully, Abby has continued to be her sweet, happy self through everything, though she has definitely picked up on the serious tone of the last few appointments. We're planning on having a fun 4th of July and hope that Abby's recovery will be smooth enough to not interfere with her birthday or the start of school.