Chaotic and fun summer travel

A recipe for a crazy but fun summer vacation. Ingredients One crazy independent toddler One amazing and strong kid with Rett, One busy, multitasking and exhausted dad One overwhelmed but happy mom Directions Knead all ingredients together.  Add in a dollop of seizures, a dash of minor accidents to taste.  Layer in flights to two[…]

It gets easier.

I remember talking to some families when Maggie was first diagnosed who would tell me “it gets easier, though it may not get better.”  I didn’t fully understand what that meant at the time, but I’m starting to now. When Maggie was first diagnosed, it was traumatizing.  The idea that she would have incredible difficulties[…]

Gastrointestinal meds are working but….

Magnolia has been on her GI medication for 7 days, this is day 8. She doesn’t like them. She seemed to tolerate them the first few days but now she revolts when we have to give her the medication. Yesterday, I was working and Shelly brought Mags to my office (upstairs in our house) she[…]

Monday, GI specialist. Tuesday, IEP. Wednesday….

Some weeks we cruise along, other weeks seem so crazy,  and crazy just seems normal.  This is one of those weeks. Monday, AJ met Maggie and I at the GI specialist for her appointment. If we can, we both like to be at the doctor appointments, at least the first appointment with a new doctor.[…]

A seizure rollercoaster ride….

I’ve learned a lot of things the past few years dealing with Rett Syndrome. First, every time I write Rett, it gets auto corrected to Rest, which is hilarious. I wish she had Rest Syndrome  A syndrome where everyone is well rested, sounds amazing. Secondly, Magnolia’s perseverance is unwavering. Every once in a while, I’ll[…]