Dun Dun Dun

 The blog is back,  and you know what that means, another surgery.  I rarely update this anymore as the day to day is pretty much the same and very busy with my work and 4 kids.  Rachel doesn't like to write here but I still like to do this from time to time to update people who've been following along with Isaiah's story we may not be facebook friends with, etc.  

The whole crew squinting in the sun

   First a little game of catch-up. Since the midface 4 years ago Isaiah's been doing pretty good.  He's been breathing much better overall, even had a sleep study with no apneas! We still have ups and downs, but most issues have been relatively minor and not surgical.   One of the bigger things we've been dealing with behavior issues mostly as of late.  Some of it is the autism and some of it is related to the scarring he has in his frontal lobe from his first cranio surgery at 7 weeks old.  We've been on a carousel of different meds, been through countless hours of ABA therapy and switched schools in the last year plus all with varying results.  The frontal lobe is where the behavior centers are in the brain and its possible that no amount of meds or therapy will ever reverse those impulse behaviors.    His impulsivity rules his life (and ours) sometimes, and since the midface surgery his behaviors have really become the main driver of his care over the physical issues he has, until now, that is.

   During COVID and even back a bit before he's been having sinus infections and headaches on and off, and nearly constant drainage from the nose.  He's been on low dose antibiodics and nasal sprays for more than 6 months which has mostly managed the infections, but the headaches persist and the drainage just doesn't stop.  We get yearly MRI's and sometimes CT scans for his surgeon in Texas to monitor his growth and development and on this years they noticed something a bit troubling, a Basal Encephalacele.  I'm probably over simplifying this wrong, but basically he has a hole in his skull where bone should be and the dura mater around his brain is poking through this hole and putting constant pressure on his sinuses which is likely the cause of all the sinus issues and if not dealt with in a timely matter he could get Meningitis which could be life threatening.  We've dropped most of our summer plans this year and are now heading to Texas next week to get it taken care of.  After a year plus of COVID we've extended much of our quarantine type practices to keep him healthy until the surgery.

   We leave Sunday for the road trip to Texas and the actual surgery is 7/21 and we hope to be home that weekend sometime.  Rachel's parents are stepping in to take care of Christopher, Elena, and Annabelle at home while we're away.  Thoughts and prayers are appreciated.  We'll be updating here and on facebook more around the surgery.