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!
Boba Fette
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BK
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Yes that is Rachel under there, but apparently she's a peaceful bounty hunter lurking in the shop after the Star Tours ride at Hollywood Studios
I've still got to pour over the code for the date problem with the new look, but I've got less time to do it now since I've found a new job! Only 3.5 weeks fully unemployed, with one of those being Isaiah's surgery week. I'm actually working today already at a nice small architecture firm 5 miles from home. Isaiah's been super crabby lately and we're trying to figure out why. He's gotten used to the casts again, and his separation anxiety, while still there sometimes, has diminished some. I'm wondering if his teeth are bothering him since he has yet to cut one. Its hard to tell if he's running a bit high temp from having the casts on right now, or from teething. Soon enough though we'll get it figured out since the legs come off monday next week and the arms are off on thursday. I can't wait to see his little fingers and toes. Got to get back to work
Today has been one of those roller coaster days. First you're up, then you're down, there's a few twists, a couple loops for good measure, and then you're right back where you started and asking yourself 'was that it?' Well I hope so for now. We had some fun insurance things today regarding Isaiah's surgery scheduled for Tuesday next week. Apparently somehow Coventry thought we were doing it here in Atlanta which is not the case. This after yesterday we were alarmed to find out that Medical City in Dallas was going to be out of network for us. After many frantic phone calls, a bit of anxious wait and see, and a couple bouts of crying (some sad, some happy) we are fairly confident that almost all the providers will be covered as in network for his surgery come tuesday. Our last hurdle is getting the okay from Dr Leonard tomorrow that he's healthy enough for surgery. So yeah, there were times today I thought I was going to have a heart attack. This...
So I'm stuck at a gas station waiting for them to turn on the pumps since the corolla is nearly on E and ATL is still admist a gas shortage due to Ike. They said about a half hr about 15 minutes ago, so hopefully we can get some gas soon. As for the hydrocephalus the CT scans came back negative today, but it was still enough to stress both Rachel and I out beyond belief. We still need to watch out for it and I think we'll be going back for another CT scan in a couple weeks, but for now at least we don't have to worry about them sticking a shunt into his brain to drain the fluid. I mean c'mon can anything else go wrong? We're finally coping better with everything after the surgery and then this scare happens. In other news rachel called while I was waiting here and said Isaiah swung at some of his toys unprovoked today! We've usually had to show him first and then he'll copy, but Rachel saw him concentrating real hard and then taking a swipe at one of his...
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