We’re 49 days into 2018 and it’s felt like a whole
year. There have been more doctor
appointments, fun moments, dramatic tears, exhausting days and questions
without answers than 49 days can possibly hold.
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| Connor & Ariel |
The good stuff has been really good. We had a great family trip to Disney World.
Outside of a side trip to urgent care for extreme constipation, Connor had an
amazing time. He was such a flirt with the princesses they all wanted to take
him back home to their castles. He braved a couple of rides, but mostly just
loved meeting the characters and seeing the shows.
The drama at home, mostly around Connor and meal times, has
escalated to a point where we feel desperate for answers. We’re waiting for our insurance to approve behavior therapy in hopes that will help.
We’re also considering inpatient treatment and medication. One of
Connor’s physiatrists said recently “You all can’t keep going like this” and
she’s right. Connor has started scraping the back of his head and pulling his
hair when he gets mad. Brent and I are exhausted, frustrated and just
emotionally drained after every meal.
And poor Clara just eats as quickly as she can most nights, so she can
be excused from the table. When I took
this new job three years ago one of the great things about it was that unless I
am traveling, I’m home for dinner. I had these grand visions of what dinner
together every night would look and feel like and this is far from it.
Connor had three fainting spells while in his stander last
fall and so we have now added cardiologist to the list of doctors we see. He
had an eco-cardiogram and everything looks fine with that so there is nothing
to indicate his fainting is because of his heart. But then what is it?! We’re
following up with a neurologist and making some adjustments to his standing
routine to see if that prevents it from happening again.
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| Weird spots on his cute face |
At the end of January, mysterious spots showed up on
Connor’s face. After visits to the Minute Clinic, the pediatrician and urgent
care resulted in blood work, strep tests, allergy test and measles testing all
in one week, everyone’s response was the same – “We don’t know. It’s probably a
virus.” Super helpful. The spots didn’t
seem to be contagious or to really bother him, so we just lived in the tension
of not knowing why these spots are on his face (and nowhere else on his body).
Now after three weeks they are starting to fade, and I hope will be gone soon.
In January at a pediatrician checkup, blood work showed that
Connor’s kidney levels are a little off. Kidney issues are often a part of
Joubert Syndrome, so the pediatrician recommended we follow up with a pediatric
nephrologist. Of course, there weren’t
any appointments for seven weeks, so we go to see this new doctor in a week or
so.
See? A lot in only 49 days.
Here’s hoping the next 49 are uneventful.
