Today is kind of big deal. It is purple day, a day of world recognition of epilepsy. As you know from my previous posts about epilepsy, I don’t feel like it is really my place to go into the facts about epilepsy. You can google that stuff. What I want you, dear readers, to understand … Read More
Advocacy
Purple Day
Tomorrow, Tuesday March 26 is Purple Day: Global Day of Epilepsy Awareness. For more information about Purple Day, check out the website: www.purpleday.org/. Please remember to wear purple tomorrow and tell someone about Ezzy and her friends with PCDH19 Related Epilepsy and other forms of epilepsy. Thanks from Ezzy!
More Fun with Insurance
So, as my dear readers know, Ez is having surgery at the end of this week. The surgery has been a long time coming (see more about the surgery on this post). Since our Children’s Hospital is in another state and the surgery was only scheduled a week ago, I have been sort of wrapped … Read More
Flying Under the Radar
Ezzy’s ability to be so very mobile in her gait trainer has brought with it a whole new set of issues: Visibility. You see, we have been able to “fly under the radar” in many ways with Ez. She is tiny–about the size of a pretty average 12 month-old. So, it isn’t exactly clear that … Read More
Listening
My hubby and I have spent so much time focusing on “listening” to Ezzy. Since she can’t speak or sign, and many of her forms of communication are pretty subtle, we are constantly tuned in. There is the little jig dance she does when she needs the potty. The teeth-grinding when she might want to … Read More
Ezzy on the Move
I am so excited that I don’t even know where to begin. I guess I will start by saying that Ezzy’s new whiz bang gait trainer arrived (FINALLY!). It is darling and so much tinier than I expected. It is the Mini Pacer gait trainer made by Rifton. It works differently from the Trojan Pony. … Read More
Normal
I call it “the other n-word.” Being someone who prided herself on being different, who grew up weird in a rural town (and then weird in a suburban town), I have always embraced my difference different, normal has been something to be avoided. I read it an insult: Ugh, he is just so…so normal! But … Read More
Feeding Tube Awareness Week: Day 7
Today is the last day of Tube Feeding Awareness Week! What a fantastic week it has been. It seems fitting that we wound up our local hospital on Thursday…and it appears as though Esmé is a bit of a celebrity. There were several people who had seen Esmé’s Feeding Tube Awareness Week video thanks to a … Read More
Jayla’s Wings
I am so proud to say that I am on the board of a new organization: Jayla’s Wings. Ezzy and I first met Jayla and her mother Jenn at our Children’s Hospital. We bonded over tubie huggers and feeding tubes. And we carried on some good conversation until Jayla decided the time for talking was … Read More
Feeding Tube Awareness: Day 6
Today’s Feeding Tube Awareness Week Topic is:Outreach: Spread the Word! Before joining the Feeding Tube Awareness Foundation, I saw my role as a tubie parent, especially one who was quite disappointed by her introduction to the world of feeding tubes, to reach out to any new tubies in my area and/or extended social circle. I … Read More