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[…]

What a crazy month!

October is Rett Syndrome awareness month, but apparently so is February for Team Magnolia’s Hope. Wow, just wow! I am speechless with the amount of support, love, community, awareness and fundraising we just received this past month. It almost seems as if it was planned, but it wasn’t. The good deeds and love just kept pouring[…]

Soupergirl

If you don’t know, this past month there have been some amazing gestures of kindness and generosity towards us. A few months ago, a mom from Washington DC, Sara, contacted me. Her mom, Marilyn had forwarded her an article I wrote about surviving a disaster with Magnolia. Sara and Marilyn felt compelled to do something.[…]

Diagnosis day – four years with Rett Syndrome

Maggie was diagnosed on  12/17/2013. This day is known as D-day in the world of Rett. Diagnosis day. This will be year 4 since diagnosis. Maggie is now 7 years old. Life is different now. Four years ago, Maggie hadn’t lost many skills. She had slowed in development but regression hadn’t fully begun, yet. The[…]