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'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...
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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