Jordan had a great time Friday at the hospital. I must say right before we went on they played my recorded interview, it was the first time I had heard it. I was standing there listening to it with Jordan by my side and after a few minutes I started crying. Jordan looked at me and said “Don’t cry” as she wiped away my tears. All I could do was laugh at her, give her a hug and kiss her over and over again. Once I composed myself she said “Are you going to cry when we are on live” I told her I didn’t know although I would try my best.
She was very nervous but once she started talking it was very easy for her. She sounded great to me and again amazed me with her strength and courage. Of course when she started talking about the nurses Dina asked her if the nurses were a source of comfort. Next she asked her something like “What was the best part about being in the hospital” or something like that and Jordan said “Having my mom by my side every day.” And she thought I wasn’t going to cry while we were live. Really, at least I know when she is older she will understand how much I really did mean well.
After her interview we went and visited the PICU doctors. She was not really interested in that and wanted to leave so she just started walking away. One of the doctors said “It is nice to see she has attitude.” I wanted to ask him if he wanted to keep her. Instead I had her say hello and then we left. It was a great experience and she asked if she could participate again next year.
Friday night Jeff and I went out and I just want to say “Thanks to all of our wonderful friends. It was great to get with everyone and have a night of no worries. We had a blast and are looking forward to doing it again.” As I have learned life needs to go on, if she gets sick we will deal with it.
Saturday we went to Sarah’s for Cades birthday party. She was tired form being up early with her cousins, although she did great. When we were getting ready to leave she was giving me a hard time and just sitting on the couch. At first I thought she was being her usual self, although I picked her hand up and starting hitting herself with it and she didn’t respond. She fell over and was smiling at me when I moved her hair. While this may be nothing I really think it was an Absence seizure. What this means I am not really sure, if it was a seizure it only lasted about 2 seconds.
Last night after she went to bed, she was up at 9:40. I am not sure if she had a small seizure at this time either because I was not with her. I thought she was asleep when I left her at 8:30, although when Jeff got home she was awake. She ended up going back to bed and not getting up again last night.
Hopefully when we see the doctor tomorrow he will give us some answers. I believe we will get the results of her EEG and we will talk about the next step in all of this. I am hoping that if he thinks these little changes are something going on he will just start her on something.