Tuesday, January 8, 2013

Rough night, sad day

Last night was a really bad night for our girl. She fell asleep and was asleep only for only an hour or so when she woke up screaming! Mike went in and tried to soothe her but the screaming was relentless. I went in only to find her wild eyed and thrashing back and forth with each scream. I don't know if it was "night terrors" or just some other neurological manifestation, but it was scary and it lasted 30min-1hr. When she finally settled down, she was still very tense and had the crazy laughs again. Mike was able to get her to fall asleep, but every time he tried to get up, she'd wake back up! Finally he thought he had her asleep and came to bed, but she was awake by the time he laid down. She was OK though and she just laid there awake until morning. Ryan also had a rotten night, waking up twice before I ever got to bed and another 4 times afterward. Needless to say...we had a rough night last night. Thankfully, my girl woke up this morning and was a little more calm. Overall, today has been a better day than yesterday. She's still had the occasional crazy laughs, but she's been more calm and quiet today. She was a little nauseous this morning, but I think her throat just hurts from all the crying last night! She's got this deep throaty voice today, so she's definitely a little hoarse. She's still tense and having some temperature regulation issues (and holding her urine tonight)...but sweet and cuddly and super precious (and missing another tooth...Daddy finally yanked her front upper right tooth out...the one she knocked loose on Saturday). I'm definitely holding her a little tighter tonight. Today I found out that precious little 8yr old Kyle passed away after a long fight against mitochondrial disease! So sad. So sad. And little Lucy is in a fight for her life as well...please say some extra prayers for her tonight as she is going under anesthesia tomorrow for another procedure! Two more reasons we so desperately need to raise awareness and money for mitochondrial disease research!

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