by Here’s a whole lot of randomness from the weekend! We made a second day at the fair, AJ even spent most of the afternoon outside. His allergies are a lot better than they were before now that he’s started this new med.
There’s a few pictures of Averie from the fair in here. She went on a couple of rides that were a bit much for her, but it didn’t deter her from the next one. My favorite comment she made was “my face was upside down in that one! It was just too much”. She always says the most hilarious things. When she was little she’d repeat them for a video but no luck anymore.
I took a couple of pictures to show what our packed car looked like for this trip. It was only a couple of days. We have to be prepared to pack up and make the trip across the country so we packed like we were headed on a longer trip. Oxygen concentrator, tank filler, portable and backup tanks, CPT vest, meds and all of his other various machines. Plus diapers, clothes, meds and more. It’s a lot. And there’s a few things I made note of to pack or do differently, so it was a good learning experience. Aaron thinks we need to look into a small trailer. I’m tempted to borrow a camper, but there’s nowhere to park that in downtown philly.
AJ has been picking up a lot more signs. His newest one is please. Though he’s usually pretty impatient so it’s hard to catch. There’s a video of him playing in the shade at Nanas house where he says please.
He’s also big into songs and music. He’s working on learning the itsy bitsy spider now. There’s a video of that in here too. Don’t mind my singing, thankfully he’s cute enough to distract from it.
All in all we had a great weekend, but we are all exhausted! It’s been a while since we’ve had a weekend of travel and events and it definitely took its toll on us – even with a couple hours nap this afternoon!
Praying we get an update from CHOP sometime this week, we know August is out but are waiting to see if we can do September or October. We also need to schedule another surgical procedure with urology and need to figure out where that fits in with his visit to CHOP.
But for now? We’re enjoying the downtime!
