We took a field trip through the stars and nature hallway and spent some quality time in the family resource center. She had a good time watching the fish and having independent reading time in the kids' corner. In addition to wearing real clothes instead of pajamas and underwear instead of a pull-up, it was a real boost to her self confidence to spend that time on her own. Not that I wasn't standing only a few feet away, but for a kid who has been kind of paranoid lately, it was a step in the right direction.
After we got back to the room we hand lunch and then Lyla had a bath. Since she got her central line out she didn't have to wrap her neck in plastic wrap and the bath was much more enjoyable. She didn't stay in too long, but seemed clean and refreshed afterward.
We had a good time in the playroom this afternoon making glitter sticks. Lyla wanted to put hair on hers and by the time we were done, we had a his hole glitter family. It was pretty cute.
Grandpa came for a little while and took Lyla to the mystery sodas and played with her while I paid e stack of bills Masud brought home the other day. Always feels good to be current! Mn and dad came back later in the evening when mom got off work, but only stayed for a short time because Lyla to hit her 6 pm anxiety hour right on target. She was not as manic today, but was scared, even of my mom, and would not let me leave her side. Even now as she sleeps she is waking every so often and askinq, "mom?" She just wants to know I'm here. She was awake when Masud got back but pretended to be asleep instead of talking to him.
Dr. Einzig saw her in a. Good place today and was more positive about going home. He said as long as she is continuing to progress like this, he would just want us to follow up in few weeks. I met Dr. Ritter today. He is a neurologist and observed Lyla while she played with Tom in the play room. He said the same as Dr. Einzig: stop testing her, let her be a kid and watch her get better.
Dr. Melchert, the pediatrician asked about Gillette today and I was all for it. Cindy the PT said she thought it would be a good idea too. No news on when we might have a consult yet, but I'm hoping it's tomorrow. I already texted Kristy and told her we might be on our way so she could make sure she is on our team. I know I shouldn't be excited to go to another hospital, but we saw such awesome gains for Lyla last time we were there that I think it would be great to go again. Probably not for long, but enough to get her back to her baseline.
Here's hoping for another up day tomorrow!
Pics: we made a tent tonight on her suggestion, our glitter family
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