It's been another busy few days.
Eli had his appt in KC with the head of the medically complex kids clinic. We spent 4 hrs meeting with the team and the doctor. He will be Eli's PCP. We are super excited about this. He is getting everything organized and is working up a full care plan. He was very disappointed by Wichitas lack of testing. He's ordering a ton of tests and appts to get a FULL baseline of every one of Eli's systems. He also agrees fully with alot of the paths we are already on and is more than ready to jump on board and take over.
I'm beyond excited and relieved to have someone taking over the role I've been doing. I'm ready to sit back and just spend time with Eli and my family. The coordinator is getting all of Eli's records, all of his testing and appts schedualed, everything. I will just be called when it's all done and told where to go and what to do for each appt. Sooo nice! We are really hoping to finally get some good stability in Eli's medical care and start making some progress.
Today has been a super lazy day around the house. The kids have watched movies, played their nintendos and hung out. Tonight Bob and I are going out together with some good friends of ours. Super excited to get some time out, away from everything!