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
Special Needs Child
Game Changer
So, those of you who are really observant might have noticed the change in our subtitle here at The Cute Syndrome. Strictly speaking, Esmé is no longer undiagnosed. Now, its gonna get a little dense, but promise me you will read through to the end, ok? Like everything with my beautiful girl, that notion of … Read More
Somebody reset the seizure tracker
So, my brain has been programed to run as a seizure tracker. I always know how long it’s been. Even when I think I don’t know, my “guess” is always almost exactly right. I am just programmed this way. Last seizure-free stint was 37 days. Well, we are finally calling this one at 52 days … Read More
10 Days in Photos
March 1: The day of the Alleged Surgery March 3: The night before the Actual Surgery March 4: Surgical ICU March 6: Still hanging in the ICU March 7: Feeling ready to go home…after this nap March 9: Hanging on my belly March 11: Ready to make some art for pcjoni! March 13: Somebody said … Read More
Negativity
This post is one that has been brewing for a long time. In many ways it is the post I have been working on the longest–perhaps even before The Cute Syndrome existed. The problem is that in facing this issue of negativity, I run the risk of falling into the same behaviors I am trying … Read More
Back to Basics
We are home. We finally made it–through a snow storm–on Friday. Watching Ez play on the floor of our living room on Friday night was such a beautiful sight. Our hope with this surgery was that we could get back to basics with Ezzy. You see, all this time we have been playing catch-up with … Read More
Going Home: A Quick Update
The plan is that today we will bring Ezzy home. They will discharge us straight from the ICU. It is sort of funny…I am usually chomping at the bit to get her home, and I feel almost silly still being in ICU with her at this point–she is really doing remarkably well, honestly. But I … Read More
My Joyful Warrior
Esmé amazes me. Over and over and over, she amazes me. Her spirit takes my breath away. I have never felt braver, yet more unworthy, than in the light cast by my joyful warrior. Esmé is full of contrasts. She is delicate, but unstoppable. She is patient and unmovable. She is contemplative, but insistant. As she … Read More
A light goes on
Well, despite being in the middle of a few rough days, Esmé is just blowing us away with her words. Like many low-tone children Esmé struggles to produce sound clarity and variety. She clearly understands a wide variety words and increasingly complex requests. She selects between a variety flashcard images (dog, firetruck, apple, etc) and … Read More
The Alleged Surgery
Yesterday was finally the day of Esmé’s surgery. I have been very apprehensive, but have also been looking forward to this, in the way that one looks forward to such things: that they will soon be over. I have been looking forward to seeing where she will be in a few weeks–to see what we … Read More