Rhythm

Our OIT journey is a new, exciting adventure.  But with “new” and “exciting” life can get thrown just a bit out of whack.  And so we are adjusting, and finding our new rhythm to life. We have tweaked Brendan’s daily schedule to fit his new dosing requirements.  He must dose twice a day, between 9 and 15 hours apart (12 is ideal).  Then he needs to keep his heart rate and body temperature down for two hours post-dose. For the first hour after his dose, he needs to be closely monitored. AND he needs to dose on a full tummy.

I spent hours trying to adjust his schedule in my mind so that it meets the new dosing requirements.  He’d need to wake up just a bit earlier, and instead of getting dressed first, he’d need to come straight to breakfast.  After school, I used to make him do his homework right away, and then he could play later.  We’d have to switch that around.  Play first and then do homework after his dose.  Bath time would need to be moved to before dinner so that his body temp wouldn’t be raised right after his dose.  LOTS of little changes.

For the most part, the daily changes have worked out well.  The boys are loving being able to play right after school instead of doing their homework right away, and I think they’re actually getting their homework done more quickly after dinner.  It’s tough ripping myself out of bed 10 minutes earlier every morning, but I’m sure I’ll adjust!  We are definitely finding our new daily rhythm.

Brendan's egg solution. We call it his "egg-i-cine" ;).
He's now up to 10 milligrams of egg per dose.

Next up:  Finding a rhythm to updose days.  I’m not gonna lie.  Updose days are TOUGH.  We travel 9 hours, round trip, to updose.  We updosed for the first time yesterday, and among other adventures, attempted to stop at a closed Chick-Fil-A for lunch (BOO!!  If you remodel, please cover up your restaurant’s highway exit sign!), encountered the freeway shut down to one lane, ran into “rush hour” traffic at 3pm in Dallas (I would complain about this one, but being from Houston, where rush hour is 24/7, I should have known better!), and due to a switch in computer systems, got to fill out ALL THE NEW PATIENT paperwork AGAIN before they saw us for the updose yesterday.  We left our little suburb of Houston at 10:15am.  We pulled back into the driveway at 9:39pm last night.  We have not found our updose rhythm yet!

We found this cute pillow during our adventures yesterday.
I had forgotten to bring Brendan's pillow with us.  He LOVES elephants, so this one was perfect!

We did have a few updose rhythm “wins” yesterday.  Despite the 3pm “rush hour” traffic, I still think 3 or 3:15pm is the best time to updose.  It allows Brendan to attend the first few hours of school on updose days, and if we didn’t have to complete a gagillion new patient forms yesterday, we would have been out of the office by 4:30 and back home by 9.  So, we’ll try 3pm for a few more weeks, and see if we can make that rhythm work.  Other wins: The Whataburger in Ennis is right next to a gas station and is on the right side of the freeway.  We’ll be stopping there for dinner again J.  I used Brendan’s dyslexia app, Learning Ally, to download a few audio books for me.  He’s a happy camper watching movies on the iPad, but I get bored in the radio station dead zone between Houston and Dallas.  I’m listening to the Maze Runner right now.  It, along with phone calls to/from friends and family, made the drive much more enjoyable for me.  My mom has also volunteered to come along some days, so having company AND an extra driver will be great! 

We will find our updose rhythm, and soon I will be your go-to gal for questions about the drive between Houston and Dallas.  I can already tell you that the Chick-Fil-A at exit 87 is closed, but the one at exit 94 is ready and open for business.  And if you can’t wait until Buc-ee’s for clean restrooms, you can stop about 20 miles north at Woody’s Smokehouse.  Change is hard, but we will settle into our rhythm, and while a 9 hour round trip drive may never be easy, I can certainly tell you that it’s going to be worth it.