Wednesday, December 17, 2008

Meeting Santa for the first time.

Our children's hospital puts on a wonderful event called "Sensitive Santa"  organized by the child life specialists and the family resource center. It's a chance for children with various physical and cognitive challenges to meet with Santa on their own terms without standing in a long line, which is something that we would simply never be able to do (with any sanity) with Ethan. 

This Santa was able to sign to Ethan and we had our own Elf assigned to stand in line for us. Mrs. Claus was there as well as a juggling reindeer on stilts, a Christmas band (with upright bass, trumpet, etc.) and a magician. Seeing the smiles on the faces of the children in that room literally brought tears to my eyes. I watched one little guy in a wheel chair use his electronic AAC device to discuss football scores with Santa and the smile on his face was absolutely priceless. Santa took his time with each child and there was no pressure to make it snappy. Ethan enjoyed the entire experience, as did we. I hope they do it again next year! 


We closed on our new house on Monday! We've got movers helping us with furniture on Friday morning but I've been making trips over to the house all week and have nearly finished setting up the new kitchen, the bathrooms, and the linen closet. Oh, and Ethan's room is nearly finished as well :-) I'm darn motivated! 

So we'll go shopping for a Christmas tree on Saturday and then a few days later our families will join us to celebrate the season in our new home. 

I have never felt so blessed, so fortunate, and so grateful in all my life. 

Saturday, December 13, 2008

Too much fun...

courtesy of

Tuesday, December 09, 2008

Ethan Inspires

Ethan sitting in circle time in his classroom. 

I opened my email today to find a message from a mother in Nebraska (Hi Stacy!) whose son is also profoundly deaf (with cochlear implants), severely apraxic, and wears glasses. She had recently found Ethan's World and wrote to tell me that it gave her comfort and inspiration. 

It made my day to hear from Stacy! What an honor it is to be able to inspire people with Ethan's story. I'm just blown away by that. 

I started this blog in order to keep our friends and family updated on all things Ethan, and here we are nearly 3 years later, meeting (and even inspiring!) families who face similar challenges. I've been able to share the highs and lows with people like Kristina in Delaware, parents who know first-hand the roller-coaster ride that accompanies the unraveling of one diagnosis after another. 

The Internet ROCKS! 
Today I attended a field trip with Ethan's class to a beautiful old theater downtown for a children's production of Rudolph the Red-Nosed Reindeer. It was fantastic! We were in the 2nd row, so Ethan and his classmates had an excellent view of the stage and were able to see the kids facial expressions and the details of the set and the costumes. Ethan sat still for nearly an hour, something I never thought I'd see without heavy medication. He was fixated on the interpreters for the first few minutes, but then realized that he was missing a dozen dancing elves and quickly turned his gaze to the front of the stage. 

Mom reminded me that when you have a special needs child you can often get special (re: awesome) seating at events like this. If you think I'm going to exploit my child's disabilities just so I can have a better seat at plays and performances, then you are exactly right :-) 

(Actually, I can't imagine he would have as much interest sitting anywhere else....)

Tuesday, December 02, 2008

G. I. Business

From the archives - PT Session Jan. 2007

I just came from school where Ethan's teacher informed me that today he was a totally different child. They were wondering how long he's been on his new medication because it appears to have really had a jaw dropping affect. I poked my head in and noticed that he was sitting on the circle with legs crossed paying attention to one of the aids as she was signing and telling a story. His aid was not seated behind him for some reason. I stayed and watched and he continued to sit still and pay attention. None of us have ever seen this type of behavior from him and we were all pretty taken aback by it. Not only that, he also focused on his work today and they were able to see (finally) that he has his ABC's mastered. He actually followed directions while his teacher assessed his knowledge, thereby showing her what we've known for months. During circle time he was asked to bring a numeral up front and match it with the corresponding number. I guess he followed the instructions and matched up the numbers, causing all the kids and adults in the room to spontaneously start cheering for him. 

His inability to focus and follow directions has been extreme. We've been hearing terms like ADD and ADHD and have been bracing for another hurdle, another mountain to climb. But if he has many more days like today, he may actually be able to get by without a one on one aid. 

Ethan has had a lot of lab work done recently to get to the bottom of what is going on in his gut and it seems there's a whole lot of ugly going on in that little tummy. He has a yeast overgrowth and 3 strains of bad bacteria taking up residence. He has begun developing intolerance's and allergies to foods the way I've developed a penchant for soy chai's at Starbucks. Poor, poor fellow. 

Shopping and cooking for Ethan has turned into a science. I contemplate the labels of every single thing that I buy and due to the extensive list of things we have to avoid, most of the items I look at go right back on the shelf. Basically, he can eat meat and veggies. Fruits and carbs aren't looking so good as they both feed yeast. Sugar feeds it too, so now I'm investigating the sugar content of nearly everything. He can no longer tolerate rice in any form, so that has seriously impacted our pantry as I was using rice flours and rice milk. He's allergic to all nuts. He's even allergic to sunflower seeds and safflower oil. I could go on, but you get the point. 

So the only actual medication Ethan is taking is Nystatin to kill the yeast. He's taking probiotics twice a day and eating a digestive enzyme tablet before each meal and snack. He continues to be on a gluten and casein free diet. He's on vitamin C and a B complex with folic acid. Eventually when his tummy is showing signs of healing he can start taking iron as he is also anemic. 

I've heard it said many times, that we were meant to become Ethan's parents, that somehow God hand selected us for the job. I used to just smile and nod at that comment, as if it were my duty to show some humility, some modesty. But now I can say with great assurance that yes, we were meant to parent this little guy. 

I don't know anyone else who is better suited to the task than his father and me. And we're so thankful that he's ours.