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 we spent much of the Christmas week cleaning up after bodily fluids. First I was sick Monday night and tuesday, then come Wednesday night Isaiah seemingly got what I had and has almost got it licked. Lets just say from Wednesday through Christmas Day (3 days) Isaiah probably had about 15 changes of clothes, 5 baths (one at 3am on Christmas day) and two complete strip downs of the crib. He's doing much better now and has kept everything where its supposed to be and at what consistency its supposed to be at for almost 24 hrs now. With the bounty of gifts Isaiah got for Christmas taking over the living room I got the brilliant idea of converting our Den / Guest Bedroom into Isaiah's playroom so I spent the bulk of Sunday cleaning the room from head to toe and reorganizing the furniture. Somehow, even though all the same furniture is in the room and the ball pit has returned home to the Den it seems way bigger than before. It is also helpful to be able to contain the toys...
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