Better

We had a morning this morning.
We woke up and got around for church. Braden was okay. We noticed his rash was here again but it has come and gone so much we just went with it.
About half way through service my cell phone vibrated...not a good thing. The number didn't show up and I didn't answer 5 seconds later Brittney's cell phone shows up on the caller ID. I didn't answer it I just headed across the street I knew something was up. I got there and they had Brae out in the hallway. One of the leaders is a nurse and Brittney was there. He said his legs were hurting and they said he had been staring out. We left church and before we were on the road 4 minutes we had to pull over. Brae had a significant seizure. I held him in the backseat the whole way home. We had a few more stare outs then home some meds, relaxing and he bounced right back.
Tonight he is fine but we are just not sure what we are dealing with. I am afraid a trip back to Austin sooner than later may have to happen. I am going to get him in to his local pediatrician today but I don't expect a whole lot from that as Brae is a pretty complicated patient. It feels like we are on a roller coaster just when I was thinking okay it is pretty smooth we can deal with it boom hits a loop or a big drop I hadn't expected. I would not be truthful if I didn't say it is wearing on me. I am tired. I am also very very thankful of the calmness we have had. I don't ever want to whine about what we do deal with because as I have said before I am grateful for it because in this experience I have met and seen too many moms who didn't get to deal with things anymore and so I remain thankful but frustrated which I guess makes me normal!