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[…]

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[…]

Soccer season success! Buddy included….

Warning! Cute post alert!  Maggie played soccer and had the time of her life. We became a soccer family and it really brightened up our Saturdays. To be able to go to the soccer fields and have Maggie play and be incorporated into a game that AJ played, and almost all of Maggie’s cousins play,[…]

Celebrity Campaign for Rett Syndrome!!!! #reverserett

[embedyt] https://www.youtube.com/watch?v=6QRk1fgEuRU[/embedyt] Today, a celebrity campaign launches to invite the world to help Reverse Rett. A long list of stars including Sofia Vergara, Matt Lauer, Sarah Silverman, Casey Wilson, Paul Scheer, Billy Eichner, Kristen Schaal, June Diane Raphael and Nick Offerman participated in a PSA video and many more will be part of a social[…]

Back to school on April 11

We have been homeschooling Maggie this year, for various reasons – mostly, because she had a rough year last year.  She was constantly getting sick, which in turn caused more Rett symptoms, and though she has fought so hard to gain back her strength, balance and walking ability, being at home has allowed her to focus[…]

Palm Springs

A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures.  It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body temperature.  The last one was a new discovery.  She’s always run a little hot, but[…]

Hand over hand battle

For the longest time it has felt like we were losing the battle with hand function.  Stopping any more loss of functions for Maggie has been yet another one of our primary goals, since the diagnosis.  We spend most of everyday, watching what she can do, discussing what we saw that day and figuring out ways[…]

The Houston Report

This trip to Houston was a little different than the last one.  At the last one we were nervous and everything turned out as good as could be expected.  This time we weren’t nervous and we didn’t feel like it turned out quite as well. We didn’t get to see her GI doctor since she[…]

Back to Houston

After a really great and relaxing week spent with family, swimming every day and getting eaten alive by mosquitos, we’re going back to Texas Children’s Hospital in Houston today – the mecca for Rett research.  We’re going to see Maggie’s neurologist and gi doctor as well as meet a new physical medical rehabilitation doctor.  It’ll[…]