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 haven't updated in forever, and that's a good thing. Nothing major to report, oh wait, yeah we had another kid in August of 2018 so I guess there's that. (Isaiah's holding Annabelle in the picture above) What I really mean to say is that nothing major has been going on with Isaiah surgery wise which has been good. There's another cranial vault in the next year or two and maybe some finger straightening / bends at the same time, but not imminent. (Famous last words right?) There's been a dearth of updates to this for over 2 years, but I don't know that our daily lives are that worthy of constant blog posts, and anyways who really blogs that much like this these days? I'm just posting for those few who still check in here on the occasion to let you know we're all still here and to keep this thing alive until the next time we need to provide any updates on Isaiah's surgeries. Thanks, BK
We made it safe and sound to Dallas. Drove from ATL to Monroe, LA on Sunday and Monroe to Dallas on Monday. Pretty much the whole trip on Monday was in torrential rain and we saw a number of cars skidded off the road and in the ditch, but we made it through it all. We've settled into our home away from home at the Residence Inn near Medical city where we always stay and today was Pre-Op appointment day. We had a string of appointments from 10:30-3 pm and Isaiah was a trooper We started out with pre-registration so we don't have to deal with it at 6:30 tomorrow morning, then had pictures, and saw the anthropologist, Dr Chan, to register all his current measurements. She was happy with his growth and said we're pretty lucky he's within 2-3mm of being symmetrical across his face which isn't always the case with how much revision Apert kiddos have to their faces. We then saw the intake nurses, child life, and got some labs done. We grab...
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...
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