25 April 2017

The New Normal...for now

Ready to help open birthday presents
See I promised it wouldn't be two weeks!  Only 11 days this time.  Everything is still going well.  We got word from Dr. Fearon to stop turning the distraction screws on Wednesday last week.  The final number of turns was 63 and at 0.5mm per turn that means his midface was brought things out  31.5mm or about 1.25 inches.  Its really an amazing difference overall.  Right now he's wearing the device for 3 more weeks so everything can heal together properly and we're now scheduled for removal on May 16th at 7am back in Dallas.  It can't come off soon enough!  We've learned to live with it, but we all want it off.  Its become the new normal for now.

This past week my mom was back in town to help with the kiddos so Rachel could try to get some work done.  On Saturday we had a nice family birthday party for Christopher who turned 3 on Saturday and we'll have another one down the road some with all of his friends because we just didn't want to have to explain the device on Isaiah's head to fifteen 3 year olds or exclude him from the party.  Saturday night Rachel and I also got a much needed night off.  Once we had the kids pretty much ready for bed we left them with Grandma and headed off to a late dinner at Soho in Vinings and then a night in the nearby Hotel Indigo to actually get a full night's sleep without worry of the kids waking us up.  It was nice to have some time to just ourselves and try to relax a little.  Too short of a break, but definitely was nice.
Christopher's Birthday party Saturday

Isaiah's also gotten a number of cards and care packages from fellow Apert families as well as our family and friends too and he's loved them all!

The biggest thing we need prayer about now is that our health insurance is playing games with paying the surgeon.  They apparently pulled the Letter of Agreement we had between insurance and Dr. Fearon while Isaiah was IN surgery and had been for like 2-3 hrs.  We haven't seen the EOB yet, but we're livid and we were given no notice to even contemplate postponing or cancelling the surgery since he was already under anesthesia and in surgery for hours at that point. That's just not playing fair.  Its not like we hadn't checked literally the day prior to make sure we were covered.  Everything else was covered in network, every other provider, even the PICU doctors, which are never in-network, so this is just frustrating.  We're going through the normal appeals process first, but if it has to get to lawyers it will.  Dr. Fearon's office is working with us to help fight this, but if it doesn't work out we could potentially owe multiple 10's of thousands of dollars and it does make the removal surgery financials a little interesting as well. We're pretty confident we have a good case, but its just an exhausting and frustrating process to load on top of everything else going on.

Isaiah with the hair dye bottle he's been using to drink from

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