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Today, November 8th, is Aicardi Syndrome Awareness

Today, November 8th, is Aicardi Syndrome Awareness Day. Ellie was diagnosed with Aicardi Syndrome when she was 18 days old Aicardi Syndrome is an extremely rare neurological disorder that was first described in 1965. It affects about 1,000 kids in the US and at least 4,000 worldwide No one girl is the same. No one treatment or medication or surgery will work the same. No girl’s prognosis will be the same Most girls will have moderate to severe developmental and intellectual disability. Survival is highly variable and dependent on severity of seizures and other organ systems involved, particularly the respiratory system. Average lifespan is 8-18 years This is all numbers and facts. And this was a lot of information to take in and process 2 years ago when Ellie was diagnosed Today, this means countless doctors appointments, hours each week spent doing therapy, meds upon meds with oral syringes littered on our kitchen counter, gigantic equipment in our house to help Ellie sit and stand. It’s daily seizures But it’s also her complete and total innocence. Her eyes lighting up when she watches her brothers and sister. Her big cheesy grin when she sees mama or dada. A little girl who works so hard to sit on her own. She’s so relaxed and goes with the flow. She loves to be outdoors and on hikes with us. In fact, there’s pretty much nothing she likes more than being with her family. Love you, Ellie 💜💕 #aicardisyndrome #aicardisyndromeawareness #aicardistrong #epilepsyawarenessmonth #epilepsyawareness #endepilepsy #infantilespasms #raredisease #legallyblind #neurologicaldisorder #neurologicaldisease #specialneeds #specialneedsmom #specialneedsfamily

Happy Halloween from a ninja, mummy, Cinderella, a

Happy Halloween from a ninja, mummy, Cinderella, and the cutest baby yoda there ever was 😉

Is it a fall 🍁 porch or a Halloween 🎃 porch?

Is it a fall 🍁 porch or a Halloween 🎃 porch? Who knows at this point 🤣 Either way I swept the front porch off for maybe the 3rd time since we’ve lived here (3.5 years 😂) so it needs to be documented Also, Ellie looking cute af with a cast 😍

✨ Built in Bunk Bed Progress ✨ Did the ‘ole

✨ Built in Bunk Bed Progress ✨ Did the ‘ole “dad shake” to make sure it wasn’t going anywhere It’s basically uncontrollable. You build something. You shake it to see if it’s sturdy. Then you say “that’s not going anywhere” 😂😂 Do you give your projects the dad shake?

✨ Built In Nook Progeess ✨ Finishing up the t

✨ Built In Nook Progeess ✨ Finishing up the top and doors today!! I’m loving the fluted trim detail. But mostly I’m loving that I’ll have a place to throw some of their toys that is hidden from view 🙌🏻🙌🏻 Are you a fan of fluted wood trim? Would you put it in your house??

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