Back to Bloggin'

My goodness... I hate when I let so much time pass. Of course, I have my reasons, which at the time seem valid.  With the opportunity to look back and reflect, I really do regret the break. There's no better way to describe it other than I was just tired of sharing. I recall my father encouraging me to write and mentioning how therapeutic it must be for me, but at the time, it had grown to be a burden. It was a stark recap of what we were experiencing and it required me to face the emotions I was trying to brush past.

We're in a different place now and SO MUCH HAS HAPPENED in the almost 2 years since my last post. Ari is in 3rd grade and will turn 9 in January and Liv is 12 and a 7th grader.

Here's a family pic from last winter :) It was Ari's first time ice skating and he loved it!

 The first thing I need to do is set the record straight about Ari's esophageal peristalsis. I just re-read my last post from November 2014 and was saddened by how naive and hopeful I sounded. Maybe I've become more cynical over the past couple of years, but it turned out to be nothing... he can swallow, but has to drink to move any food or liquid down his esophagus. There is always something sitting in it and it builds up like a column until it gets about 2/3 full, at which time he feels like he needs a drink. He'll take a sip, wash down whatever is in there and it just builds up again. We did a creative esophagram where we dipped food in barium and washed it down with liquid barium and then watched what happened, so we finally have an idea about how his esophagus works. At night, his saliva builds all the way up in his esophagus until he gags and chokes on it... every. single. night. There is nothing we can do but run to his room and reposition him (even though he sleeps elevated) and pat his back to help him clear his airway. He definitely has daily micro-aspiration, but somehow he managed to escape any permanent lung damage so far (per a recent CT scan).

We removed his g-tube (second time around) a year ago because he seemed to be eating well and every time he was tube fed, he had horrible stomach pains and bowel issues. A few weeks after the tube removal, I requested a lactose test because I suspected he had developed an intolerance and his results were off the chart. I regret not having the test before the tube removal since the issue was an intolerance to his formula, not the tube feeding itself. We removed our "safety net" in the case of an esophageal impaction or anatomical issue, but thus far, things have been ok.

So many other things have changed... we went to Cincinnati Children's for 10 days last summer for bowel management and now his cecostomy flush is so much better than it used to be. He's still catheterized through a mitrofanoff made out of a piece of colon (a hole in his belly button that leads to his bladder). Unfortunately, he constantly leaks urine so he has to still wear a pull-up. He's not old/mature enough for any next steps, which would require closing off the bladder neck and a bladder augmentation using a piece of his colon. Considering his colon was narrowed and hooked to his bladder at birth, we're certainly getting a lot of use from it!

Something happen this past summer that made me question everything I've done with his care up until this point. I will share with you... but not in this post. It was the wake up call I didn't even know I needed. Do you ever have those moments? The ones where you are so grateful for the bad stuff because it is a catalyst for something good?

One of the outcomes was a visit to CHOA's aerodigestive clinic where pulmonology, GI, ENT, Surgery, Nutrition and Speech all work together to collectively identify problems and and work toward a common goal. We had our initial visit last week and Ari's procedure date is this Monday, Oct 24. We will be at Egleston, which feels a little funny to us because we are always at at Scottish Rite. (Both are CHOA hospitals). The plan is: an endoscopy with esophageal dilatation and biopsies of the esophagus and stomach, a colorectal scope with biopsies to check for food intolerance (I suspect a glucose intolerance), scope of his vocal cords and larynx (suspected laryngeal cleft and possible vocal cord damage from intubations), and a lung scope and wash out to check for bacteria. He'll be inpatient at least 1 night... maybe longer if he ends up in the PICU.

Now that Ari is older, he has become obsessed with everything related to his surgeries and procedures... it's heartbreaking to hear him talk about it so much. We're doing our best to keep him distracted. He often talks about what he sees, hears, and feels while the anesthesia is being administered and during his surgeries. Rainbows, voices, yellow clouds, God and Angels are mentioned... and sometimes a ferris wheel and happy people. It's both frightening and fascinating to hear. I'll share more about that later... for the record, he (nor I) have seen any of the movies that mention such things.

I would love some feedback... In the past, my blog posts were more emotional than medically detailed. This format does not lend itself to the quick "at urology... dealing with another UTI" type of post. Would y'all like to see quick report-type updates on Facebook (Roar Little Lion Ari Shumbres Updates), Twitter (@jodishumbres), or this Blog?
So many people ask us about Ari every day and I'd love an opportunity to share some of our daily experiences in addition to the deeper stuff.

I'll leave you with the promise that I WILL update more frequently... I have a lot to write about!  Plus it's time for this page to get a facelift with new pics, links and layout. :)

Check out the AJC article about Cape Day and my favorite little super hero! Cape Day Ambassador ARI featured in the AJC

Ari is featured in the Cape Day video this year, too... that's my boy playing football with some Atlanta Falcons! Children's Healthcare of Atlanta Cape Day Video 2016

Ari will also be in the Forsyth County News tomorrow! I'll post the link once I have it.

Thanks again for all of your prayers and inquires about Ari's health... it mean so much to us!