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

14 April 2017

Super Mega Update

Whoops!  I didn't realize its been almost 2 weeks since I last updated.  Even though we've had a bunch of help the last few weeks, its still a bit of a busy mess at home and I've been working more than my 40/week to play catch up on all the things I missed at work while we were out. Most importantly Isaiah has been doing really good!  Big update below, just click on 'read more' below the pictures.

Current front on shot taken 4/13
Current profile taken 4/13 - So different!





















01 April 2017

Back Home

Leaving the Residence Inn
Sorry for the lack of updates.  It's been a bunch more work than we thought at first here, but every day is getting better.

   Isaiah is healing well.  He's still pretty bruised up under his left eye, but the right is almost clear now, just a little yellow in the skin yet.  Where they had his arterial line and iv's on his arms are still bruised as well, but slowly getting better.  His incision on the scalp still looks great and we've had no major issues with where the pins go into the sides of his head to hold the device on. The problem we still have is feeding.  He'll barely eat anything yet, and we have to force him to drink things. He won't touch pediasure, not even diluted half and half with milk.  We've tried Carnation instant breakfast mixes  and a couple other things but all he'll drink is apple juice, orange juice, or milk.  Its better than nothing, but not enough.  We still had the feeding tube in to supplement with pediasure that way, but we noticed it was starting to come out tonight so we pulled it out the rest of the way.   The good thing is he's figured out how to get a straw to work with the dental splint.  Juice box ones work best, but he can use a bendy straw if we cut it down some.  He's got limited sucking power so the shorter the distance the better.  Prayers are still needed that we can find stuff he'll eat or that he'll drink the more calorie laden pediasure again.  We can already see he's lost some weight, but that also could have to do with the fact he never had a transfusion and his body has been working overtime a little more than normal.
Sitting on the couch playing iPad

The other big thing is he's pretty sad about the bruising on his face and won't leave the house.  He barely even go out on our back deck yet where virtually no one can see him.  He just thinks he looks scary.  This is coming from the kid who's never really cared about what he's looked like before.  He's never been self conscious before and its killing us inside.  We knew the day would eventually come, but we didn't think this would trigger it.  It sounds like he's fine with the RED, but the bruising is what bothers him the most.  Hopefully he'll come around soon.






(Click Read More for the rest of the update and more pictures)