Just to give everyone a glimpse of our daily adventures. Sebastien and I really are never able to rest. EVER.
I am still chasing Jagger's growth kit for his wheelchair. It has been a frustrating and dissappointing.
Yesterday we noticed that the Meds we had ordered never arrived and after some investigation we found out that they were classified for pick-up and not delivery. That's all nice and dandy if it's the local CVS down the street. Jagger's Meds come from speciality compounding pharmacies. Our is over an hour away, each way. Argh. So Sebastien got up early and drove sometime in between both our work conference calls.
Then at night Jagger's feeding pump malfunctioned or rather it's computer froze. None of the buttons work and we couldn't get it to start. Of course this happened at 2 am. I called the supply company twice (2am and 3 am) to no avail. So we decided to gravity feed. Thankfully when it comes to his supplies I keep everything (borderline hoarding) and so found same gravity bags in the closet. This method didn't work out so well unfortunately so we decided to use syringes instead until we fell asleep around 4. At 5:30 the supply company called to tell me they cannot help because our pump is no longer under warranty. Great. Spend the rest of the morning before heading to work trying to find a replacement. We absolutely cannot go without! Jagger doesn't eat by mouth and needs the pump to feed him.
Around 11 am finally got a pump from a different supply company. It's not the same we usually use so we had to change our entire set-up but it will do for now while we figure out how to get the one we want.