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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)


Wednesday we packed up the car  and left Dallas at about 9am.  Some 750 miles, 13+ hours, and one burned out portable DVD player later we finally made it home.  We stopped a few times for meds, gas, and to stretch our legs, but Isaiah only left the car once about halfway through the trip to go to the bathroom, and only after pretty much everyone else was out of view at the rest stop.  He would slink down in his seat every time we would stop, and barely played his ipad.  We could tell he was depressed, but he never really complained.  Still broke our hearts.

Elena just wants to say hi!

Rachel was the big hero of the trip.  We took my Mazda 6 sedan for the better gas mileage and because the SUV needs new brakes and she sat crammed in the middle seat between Isaiah and Elena the whole way home to help with both of their needs so I could just keep driving.   That's 13 hrs of limited legroom and being pinched between a car seat and a booster seat.  To me that was a real sacrifice.  When we finally got home it was around 11:30pm here in Marietta.  We got the kids in bed, unpacked the car and I maybe got to try to decompress around 1am before finally going to sleep at 2.

Thursday Rachel's parents brought back Christopher and my Mom arrived from Florida to help with the initial few days here.  Both sets of our parents have been great help.  Rachel parents in watching Christopher and cleaning our house while we were gone (that was a happy surprise!), my Mom being here for these first few days at home and my Dad covered the surgery deposit in the weeks before the surgery that he should hopefully get back when insurance pays Dr. Fearon.  And we can't forget about the huge help my sister Rebecca was with the baby and everything in Dallas.

Grandma Kolis w/ Isaiah, Christopher, & Elena

Once home we quickly realized how little food we had and that we hadn't gotten someone to set up a food train.  We've just been so focused on getting Isaiah through the surgery we didn't think about the back end.  I made a huge Costco run, Rachel got some staples from Kroger and we made it through the day.  Friday  we got our first food delivery from a fellow special needs mom and friend Robin Breault who cooked us 3 meals!  Our neighbors the Trunks, brought us a Publix meal deal today and my cousin Walt and his wife are bringing Lasagna tomorrow.  I think we're set for food through Tuesday which is great, and leftovers will likely last another couple days.

Having all three kids has proved to be pretty challenging.  Christopher is into everything as usual and while its great his potty training is going well, its pretty time consuming with everything else going on.  Elena has been melting down since we hit Birmingham on the ride home because she's finally cutting her first teeth ans she's been crying and crabby for the past two days.  Isaiah has actually been the easy one  right now, but we need to get him to be a little more active and eating more.

There's plenty more to write, but this is looking pretty long right now.  Big thank you to everyone for following along on this journey with Isaiah and us

He's returned to his 'perch' in the Breakfast Nook