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!
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 ...
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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