This is a somewhat infrequent look at our journey of raising a child with Apert Syndrome. We'll be including updates on Isaiah's surgeries, and growth progression, and whatever else we feel the world should know!
14 May 2017
Ready to be done...
Getting ready to leave home
I had meant to update things earlier, but we've had a little too much drama the last few days. Isaiah fell on Thursday and Friday and knocked his halo loose a bit . Besides the temporary pain he had a good amount of blood oozing out of the pin sites on the sides of his head and it sent us into a panic thinking we got so far along and then messed everything up. We called the on call physician and they talked us down a bit but Rachel and I have been in a pretty stressed out state since the falls and will be until the halo comes off on Tuesday and we know everything is okay. Everything should be pretty much set by now, but we can't help but be sick to our stomachs about the whole situation. Isaiah's acting fine for the most part which is good, but your prayers are appreciated for calming our nerves and that all is still well with Isaiah.
In Vicksburg, Train in the background
Tonight I'm writing from our hotel room in Shreveport, LA. We left home about 9:45EST and got here just before 6. The trip out has been pretty uneventful so far. We did make our normal stop at the rest stop in Vicksburg, MS overlooking the Mississippi River and this time Isaiah got a treat and got to see a train lumber its way out of a tunnel, up a small hill, and over the river. It really made his day. I think we've got about 2 and half more hours to go to get to Dallas tomorrow in time to see Dr. Peters his Dallas ENT to determine if he'll need new ear tubes put in when they take off the RED. We're just ready to be done with this all. We've been so scatterbrained and running on such a high level of stress since Friday on top of all the worry and anxiety we've had around this the past 7 weeks we're just wiped. At least Isaiah has been handling it all like a champ...