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 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
Memorial Day weekend
We had a packed weekend, which I love. Saturday, Magnolia was to have gymnastics in the morning and Gray asked to go climb a mountain. So Mags and I had fun going to gymnastics while AJ took Gray to hike 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
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