I have posted on here before about my process of “mourning.” I say “mourning” in quotations because that is what I have been told it is. But increasingly I feel there is something about that word that just doesn’t fit. It rubs me the wrong way. Yes, I feel sorrow for some of the things … Read More
Why I have a doctor headache this week….
At this point we have dealt with a lot of doctors. We have an appointment with her 21st doctor in a bit over a week. In addition to the specialists that follow her now, we have had several that, um, didn’t work out for us and many many doctors that have overseen Esmé’s care when … Read More
TinySuperheroes
Remember a few months back when Ezzy was featured as a tinysuperhero on tinysuperheroes.com? Well, Robyn and Puddles, who are in charge of empowering all the tinysuperheroes out there in the world, have been doing such a fantastic job…and people are really starting to notice their amazing work! Recently they have been featured on the … Read More
The Helpers
Of course you have all seen the Mr. Roger’s quotes circulating on facebook about looking for helpers in tragedy. Sure it’s a bit cliché. But the thing is that it is true. You see, when the unimaginable happens you can focus on that–on how everything is different. On how it is too scary to be in … Read More
Confessions of a Blenderized Diet Feeder
I have been spending a lot of time thinking about something lately: the potential of discussions of the benefits blenderized diet (BD) tube-feeding to make those tubies among us who cannot or chose to not go the route of blenderized diets feel somehow inadequate. In reading my friend and colleague’s post on her blog, Feeding … Read More
Bubbles!
It seems these days my favorite thing is bubbles. Ezzy has always been motivated by bubbles. One of her first object related sounds was a blowing noise for “bubble.” She started doing it around Christmas. At first I thought she only did it when we were playing with bubbles, you know, to ask for more. … Read More
To hear words…
We are coming up on an appointment I have been very excited about. It is with the Augmentative Communication Program at our children’s hospital. This program helps develop ways for children with disabilities that affect their language skills to better communicate, using the skills they do have. There are all sorts of interesting tools out … Read More
Our list of doctors
The other morning I tasked myself with listing all of Esmé’s current doctors. I have an old list but I needed an updated one. The list only includes doctors she still sees, not the handful I have “fired.” Some we see as often as every few weeks. Most we see every few months. There are … Read More
Today is an important day
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
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!