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...
Its been a busy day for all of us. Brian went to work today for almost the full day. Rachel fed Izzy a couple bottles today and spent most of the day at his side. We also had a fair number of people come by the house this evening. Isaiah's is doing well with his feedings now that he's on the pigeon nipple. He's got a high palette so they put him on the nipple designed for kids with cleft palettes and its working quite well. He took 7 bottles in a row of 50-60cc's which is great. There are some worries about his nasal cavities being a bit constricted so they're observing his oxygen intake overnight tonight and if he does come home tomorrow or Friday with us he'll most likely be on a ECG/Respiratory monitor for a little while since he may be prone to Aepnea. I'll be able to catch up more this weekend hopefully since we're both supremely beat from our days and just want to head to bed. I promise there will be more to read here very soon. Its just a m...
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