Friday, April 3, 2015

Checking In...

Sometimes, so much time passes since I last wrote, I feel like I should have something monumental to say.  But I don't, so I don't say anything at all, and then you don't hear anything from us until something awful happens.

Nothing awful has happened.

We're still here, taking things one day at a time and trying to keep it all in perspective when I think it's all too much.

We finally completed a sleep study in January (dreadful) and determined that, although he wakes up at least ten thousand times every night, it's not a respiratory problem.  Obviously great news from a pulmonary perspective, though not the most helpful thing to hear from a "let's get this kid snoozin'" point of view.  But we've started using Melatonin with some success, so we're at least moving in the right direction.
Hi, I'm checking in for my Awake Study?
Sleep is for losers...
Aidan spent some time inpatient in February with a GI virus that he picked up (probably at school) and I went to a very dark place.  Parents of healthy children aren't living this life, and I hope they never have to.  (Just like *we* aren't living the lives of NICU and PICU families, or Cancer families, and hope beyond hope we never know their "normal.")  But the GI virus that sends a classmate home early one afternoon for some extra rest and fluids sends Aidan to CHOP by ambulance (inpatient for 4 days, home for 4, inpatient again for 5), leaves him on anti-emetic medication for weeks to combat constant vomiting because the virus disrupted his motility, and steals away all of the weight he'd gained since October.  And I'm so angry because it's so unfair.  But that's another topic for another day.

I'm sick, but ambulances are awesome!

A boy and his bucket

His wife will thank me for this later...

FINALLY time to go home!

We checked in again with Endocrinology when the madness that was our inpatient stay(s) wrapped up, and were pretty soundly brushed off.  Aidan has good weight gain and poor linear growth, but our endocrinologist is generally unconcerned and feels there's really nothing to be done.  At this point, her only concern for him is his Ketotic Hypoglycemia, so she's referring him over to her colleagues on the Hypoglycemia team.

March brought new focus to Aidan's Developmental concerns.  I think sometimes, it takes a really forceful nudge - just the right person saying just the right thing - to get ready to change your approach.  In our case, it was Aidan's Psychologist and his Behaviorist.  Tom and I both really respect them, and when we met for our tri-annual review, we all talked through some new things that we hadn't really discussed before.  I think this is going to lead to some different approaches to Aidan's behavioral interventions.  Stay tuned on that.

The next few months should be interesting, as always - in April, we will be seeing orthopedics to check in on Aidan's legs and feet, Developmental Pediatrics to review our new plans and services for Aidan, and he'll be heading inpatient on the 20th for his GJ change on the 21st.  In May, we head to Metabolism for the first time, and we meet with an Endocrinologist from the Hypoglycemia team.  In June, back to Developmental Peds.  And somewhere in here will be a first visit to CHOP's Genetics department, since we've only ever seen genetics once at another hospital, and everyone agrees this is something that needs to be revisited.  His case is currently under review, and we should hear back within the next few days regarding which doctor will see him and when.

In the meantime, we're doing all of the usual stuff.  Aidan's going to a new school and is doing well there, especially now that we've added full time private duty nursing (Bayada has been a huge positive addition to Aidan's team).  He's still getting lots of therapy and making amazing strides with his speech and motor delays.  He started Karate in January, and holy smack, does he ever look adorable!

More to come, soon I hope, but for now, know that we do appreciate every single time you reach out to check in.  We're still alive, and sometimes I need a little (big) nudge to dig out from under 10,000 pounds of life to return your call (text/email/attempt at actual verbal communication).