My heart broke, but not for Magnolia

Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark go away.” It wasn’t cruel, it was honest. She has been fundraising and hoping for[…]

Chaotic and fun travel Part 2 TEXAS

The stars at night are big and bright….(insert 3 claps) deep in the heart of Texas. Since Magnolia was 2 years old, we haven’t gone to Texas in the summer. First it was too hard to travel because of sensory overload, then her body couldn’t regulate heat, then we had Gray and then she started[…]

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[…]

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.[…]