Eventful weekend!

We had some amazing highs and some amazing lows this weekend. After asking for a new nurse the other night, I feel like we now are on some kind of black list. I'm sure it is just me, but I hate the feeling I now have. We have gone above and beyond what most parents do on this unit, we have seen parents drop kids off and leave, but I still feel like we are now shunned. Hopefully tomorrow will bring the weekday staff and a change in attitudes.
We were so lucky to have had some visitors!!!! In all the time we have been to the hospital in Minnesota, we have never had anyone visit. Grandma, Grandpa, and Allissa Kuchta came up for a quick visit. It was a nice relief to have their help. I hope I didn't scare them. They were able to be in the room for one of Jayen's dressing changes. I said to Matt after the first time we saw it, "It's just not something you can ever un-see." I loved having them there. Grandpa was able to get a few smiles out of Jayen and keep him entertained. They even kicked us out of the room for a little bit and fed him so we could eat alone. I wish they could have stayed longer!
We got a little spunk out of him this morning. He really seemed like Jayen again for a little bit. It didn't last long though. He was quickly back to picking his fingernails. We are thinking this is just an anxiety reflex and hoping it goes away.
Grandma Hochstein was able to stop by for a little bit too. She was in town and made a trip over to the hospital. Jayen showed her his hospital attitude. He wasn't very hospitable!
Later in the evening, we were able to see a helicopter land and take off. Jayen was so excited. I hadn't seen him smile or talk that much since we have been here. His eyes light up!!!! We were able to convince him, even after the helicopter took off, that if we walked to the other end of the hospital we would be able to see it out of the window. This worked three times and helped us get the longest walk in for Jayen. He has been so upset every time we try to go for walks. This was such a pleasant surprise to get him to walk almost a mile!
We are hoping and praying that tomorrow brings a good seizure. Dr. Arquilo is still hopeful that if we get one in the morning that we could still do surgery in the afternoon. We'll see about that! Once again, praying for seizures so we can pray for them to never return!!!!