Drew and I drove out to Palo Alto on Sunday afternoon to stay with Grandma Kathy before his developmental assessment at UCSF on Monday morning. My friend Katie and her cute baby Chloe joined us to keep us company and to help out with accessing the carpool lane on the way home. Thanks guys! We got into PA around 7 and Drew spent some time playing cars and airplanes with grandma. In the morning we left the house by 8:15 and got into the parking lot at UCSF right at 9:30. His appointment lasted more than 3 hours and since he is four now it was different than the previous times he's been assessed.
I had told him we were going to the doctor to play games and puzzles and there wouldn't be any shots or pokes. I also promised I'd stay with him the whole time. The psychiatrist asked him lists of questions (how old are you, do you have any brothers or sisters, i'm thinking of an animal that meows-what is it, what can you tell me about shoes, etc.), had him copy patterns with blocks, did analogies with pictures. Not so exciting for a four-year old to sit and listen for 3 hours! He had one ten minute break in the middle, but that was it! He did really well, but was getting tired and disinterested the last hour. They also did a quick neurology assessment because Drew was part of an MRI study before his first surgery. His reflexes looked good, but his balance isn't great. I'm also concerned about his fine motor skills, so we'll see what the report says.
After the appointment we visited with Tina and Baby Caleb who is recovering from his Glenn at UCSF right now. We had lunch across the street and had a nice visit. I took a quick look around the UCSF Bookstore and found another reason why I feel good about having heart surgery at Stanford. Dr. Hanley wrote the book on Pediatric Cardiac Intensive Care. Seriously.
I was really appreciating Katie and Chloe on the drive home when we got to fly by all the non-carpoolers on the freeway. We still didn't get home til after 5 and I was pretty tired. So was Drew! He fell asleep in the car and then slept until 9 before waking up, eating dinner and watching a movie. He went back to bed around 11.
As for Ava she did great without her pacifier while we were gone. Dan said she went to bed without a peep on Sunday night and did wake up once, but fell back asleep within ten minutes. Then on Monday she took her nap without crying and went to sleep that night without crying. She did wake up once last night and cried for a while so we brought her in bed with us. That will be the next habit we have to break. :) But I am very proud of her, she is doing a pretty good job.
Today I am feeling pretty tired. This morning I worked in the childcare at my mom connection and hung out with 12 two-year olds. That alone would be tiring, but when it was over and I went to pick up Drew he was in the Director's office because he had lost his outside time for not listening to his teachers. I told her about his assessment yesterday and how he was probably pretty tired of sitting still and listening after that and she did say that might explain it. But when I asked if he usually had trouble listening she said it had been getting worse lately. Which makes me sad because my mind automatically goes in two directions. 1. Maybe he knows what's going on surgery-wise, even if it may be subconsciously, and he is acting out because of it. 2. Maybe it's because of his DiGeorge syndrome and his behavior problems are beginning and it will just get worse. Either way, I'm not really sure what to do because he needs to listen to his teachers so I feel like I want to discipline him, but I also feel like he already had his punishment at school by not being able to go outside. I think I will just talk to him about it and work on listening today. I also am feeling a little overwhelmed by sadness. Just thinking about sick kids, kids having heart surgery, kids with cancer, kids with parents that can barely take care of them, it just seems so unjust. And then I think about my boy heading into his third heart surgery and I just don't want to do it. I know it has to be done, but every part of me wants to just run away and pretend like it's not happening. Maybe I need to sit and have a good cry, then pick myself up by bootstraps and get this house into shape. Even though I was only gone for one night, things have really fallen behind.