BACK TO "NORMAL"...

Finding the time to write has become more difficult over the past two weeks and that is a good thing. It means Caden is home and things are getting back to "normal". Although Caden's five week hospital stay was not as productive as we had hoped, we were able to eliminate possible diagnoses and are now in the process of reaching out to other doctors with fresh eyes and hopefully fresh ideas.

We will be traveling to north Jersey next week to meet with a highly regarded pediatric neurosurgeon out of Columbia-Presbyterian. Caden's neurosurgeon at CHOP has reached out to Dr. Anderson who seems anxious to meet our son. He is an elite spine and neck surgeon who can hopefully offer more insight into what may be causing Caden's declining health when upright. Our concern is that he may not be familiar with Caden's connective tissue disorder, Ehlers-Danlos, which is crucial in getting to the bottom of Caden's mysterious medical behaviors.

We are also in the process of reaching out to Dr. DiLorenzo, a top notch pediatric gastroenterologist out of Columbus, who is known through out the world as the doctor who has put a gastric pacemaker in a child as young as two. We do not know if Caden would be a candidate for a pacemaker and his G.I. at CHOP does not seem to think so, but we want to hear it from the horses mouth. If Dr. DiLorenzo does not feel he can help Caden with his motility/vomiting issues, then we will let it go; at least for now.

Our annual trip to the Cape May Zoo

Caden at the park

So how are things now that Caden is home? "Normal" I guess. Caden continues to vomit daily, is up most of the night and is happier and more active when laying flat. In other words, he is the same Caden who we brought to the hospital back in the beginning of March. As I always say when people ask how Caden is doing, "Caden is Caden".

That's not necessarily a bad thing. "Caden is Caden" simply means he's stable and for Caden, that's a good thing. Stable means we are not headed to the hospital. Stable means we can go about our everyday "normal". 

On the way to Nana and Pop's for Easter

Our "normal" is like most in that it is our routine. It's what works for us. It is the routine I find boring after doing it for months and the one I long for when Caden is in the hospital. It means lining up the kids clothes for school, making lunches, giving baths, the never ending potty training, filling prescriptions (the pharmacists at Walgreens know me all too well), taking the boys to therapy, driving the kids to school and going to work. In fact, I might have been the happiest person walking into work today because it was "normal". When I'm at work it means Caden is home... being Caden.

It feels good to be together again as a family. It is one of those things that when deep into our daily routine, I often take for granted. It is something that today, I cherish. I know that Caden has a very long road ahead of him but for now he is home, enjoying the world around him; taking in all he can. Today was a good day because today was "normal" and Caden was Caden.

The kids got fish for Easter. Caden named his Dusty.