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!
Home at last!
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By
BK
-
It's late, but we made it home safe and sound! Isaiah is
cuddled up on his favorite spot on the couch while Mom and Dad unpack
the car.
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...
We're in his room with him right now! He's rather puffy right now and his bandages come down to the tip of his nose, but he's here with us. Everyone says he's done very well. His bandages almost make it look like he's just got a big white winter cap on pulled low on his head. He's pretty quiet right now since he's still sleeping off some of the anesthesia. He's got an IV going to give him some extra fluids and he's on oxygen for the time being. Both of us are rather hungry since we could barely eat anything this morning and now that its all over we're realizing we haven't really eaten much of anything since 6:30 this morning and its just past 2pm now. We're still trying to figure out the lay of the land here in the PCA section of the hospital, but it sounds like one of us should be here at all times to watch over him, which puts a little monkey wrench into our plan of getting Rachel out to the RPA 15th anniversary party on Friday ...
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