Today has been a super stressful day. I spent another day rushing around making calls trying to find O2. We simply can't get it. They don't make infant concentrators to do what he needs. You can't take cannister O2 on an airplane. Eli can't fly without O2. So it's done. We will have to drive. It is a 17hr drive. We will have to stop halfway there, so the trip will take 2 days each way. Eli doesn't do very well in his carseat. He doesn't maintain his O2 sats very well, gags frequently, struggles to maintain his body temp, and in general gets super fussy. It's going to be quite the fun trip. And lets not forget that the return trip is the day after his muscle biopsy and spinal tap. So he's going to be sore. I'm frustrated and stressed and I know I'm sounding super grumpy. Everything with this trip keeps falling apart and I just can't keep up and constantly find ways around the obstacles. To top everything off we aren't quite as set for the older 4 kids care as we thought we were. So I'm also scrambling to get that done. Mind you we leave in just a few days.
Bob was out of town all day today in KC. He's home now. I'm tired and I'm stressed and the kids are in rare form tonight. Ben has spent most of the evening screaming, Jace yelling at Ben to be quiet, Ari running in circles chatting up a storm, and Emily rolling her eyes frequently. YIPPPPEEEEE.