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 Continue Reading
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 Continue Reading
Life can change so quickly
Life can change at a moments notice. We try to take each day as it comes and make the most of it. There is no other way to put it, some days are just wonky. Sunday was wonky. Both of Continue Reading
Better belly happy mommy
If your doctor ever prescribes you Flagyl, know that you are about to imbibe a nasty liquid. Everyday for the past two weeks we had to basically hold a pep rally in order for her to take her belly medication. Continue Reading
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, Continue Reading
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 Continue Reading
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 Continue Reading
A few months changed everything.
Our son Gray just turned 2 years old. He is energetic, talkative, smart, loves his sister and a blast. When Maggie turned 2 years old she was energetic, smart, loved her mommy and daddy, she was a blast and she Continue Reading
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 Continue Reading
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 Continue Reading
