Jake and Darth Gator

Jake and Darth Gator

So, Murphy’s Law is totally in effect tonight! Tomorrow is our first day back to school after break and Jake was falling asleep, sound asleep, at 6:45 so I asked Bridget to put him to bed before she left for the night and I popped some melatonin to help me get to sleep. Believe it or not, teachers get anxious and excited about going back to school just like the kids. Bridget got him in bed and we fed Darth Gator and took some pictures. And Jake woke up! Now my poor son is laying in his bed crying at me to get him back up….this is no easy task and I have already taken the melatonin-so now we wait…and pray my poor boy decides to crash again. This is one of those moments when I HATE SMA the most! Any of my other kids I can pick up and cuddle; have them slip into bed beside me and watch some Disney; brush their hair until they get lulled to sleep. Jake is in his bed with a feeding system hanging over him so he can eat his food all night and not throw up, hooked up to his bi-pap with his pulse ox on his toe and his DVD player in front of him. To get him up would be 10-15 minute ordeal and then I just get to hold his hand because cuddling him could choke him. I am rubbing his hand while I pick and punch out this blog and thank goodness my boy seems to be calming down…silver lining I get to go to sleep too!

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