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
One little pill
What a difference one little pill has made in our lives. Two weeks ago I lowered Magnolia’s seizure meds. She was taking 3 pills in the AM and 3 pills in the evening of Topirimate aka Topimax. She now takes 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
An Incredible Adventure
We are committed to giving Maggie typical experiences and a life full of incredible memories. She deserves it and it’s one thing that keeps our life feeling typical as well. We have been planning to go on a ski trip Continue Reading
Maggie’s hero
This past week, Maggie needed to dress up for school as her hero or a hero. When I found out, I asked her, do you want to dress up as Elsa or Merida, we have both costumes and they are Continue Reading
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 Continue Reading
