a great visit

We got back from visiting Alex last night. When we walked in, he saw me first and kept his eyes on me while we walked him over to the table to eat (we brought Carl's Jr again). He just kept staring and smiling like he just couldn't believe his eyes. Then, he turn and saw his dad. He gave a quick gasp, then a huge smile and a huge squeal of delight. It was the cutest thing!! Then he got busy eating his burger and fries, and drinking the strawberry shake and soda. He had a wonderful time, full of smiles and happiness. We did notice a huge bald spot on the top of his head, and found out that was where he'd pulled his hair out before they gave him a buzz cut. We left him after a couple hours while we checked in to the hotel and did some grocery shopping. Made a point to leave while he was happy because we don't want him thinking his mood is what makes us come or go. Would hate for him to think we leave because of him!

When we came back later that evening, he was in a very bad mood. Biting and scratching himself. Crying, screaming, inconsolable. We left there very heavy-hearted and were quite worried he was slipping back into one of his long downward spirals.

Monday morning we had his IEP meeting at 8am. Got to meet his teacher and all the others on his support team, see his classroom and talk about how he was doing. He's only been in school a week, but things seem to be going well. They report he's happy most of the time. They have a little sensory area where he can go to jump on a trampoline or rock in a chair, and they intersperse that between work tasks.

Alex came in for school at nine as the meeting was ending. He seemed unhappy and freaked out seeing us there. This only further confirmed our fears of him and a downward spiral. We left the school to go check out of the hotel, eat lunch and pick up some music CD's for him to play on his new boombox.

When we got back to Discovery, we saw Alex through the front window. The person with him brought him to the window and was trying to get him to look up and see us. We got close and tapped on the window. Alex finally looked up, saw Jeremy and squealed with happiness so loudly we could hear him outside through the extra thick, protective window. That right there pretty much made our day. We went inside and found him in another very happy mood. Staff said he got off the bus skipping and as happy as they'd ever seen him. We had a wonderful visit!

Soon it was time to go to his doctor appointment. We were going to see a primary care physician to get him established. HOLY COW! I've never met a more offensive doctor in my life. He walked in, said hello, and asked why we were there. We explained it was to get him established as a patient, and also it'd be nice if he could take a look at Alex because he's started having shaking/tremors since his last med decrease. He told us to back up and start with what was wrong with Alex. I started explaining he had Tuberous Sclerosis and had brain and kidney involvement. That he has a subepindymal giant cell astrocytoma growing in his brain and angiomyolipomas in his kidneys. He cut me off saying he doesn't deal with any of that. He's just a general practictioner. Blah blah blah. We told him Alex had a team of specialists - neurologist, nephrologist, psychiatrist....but he just wouldn't stop. He kept repeating that he doesn't deal with any special needs because they're too complex and that he'd be happy to do the simple stuff like if he had trouble urinating or if he had a laceration and needed stitches (which then he backpedaled on that one and said but only if it weren't too bad and we could contain him while he was stitching him up). It was unreal!! He never touched Alex. Never listened to his heart, looked in his ears/mouth/nose. After his long speech about what he was and wasn't capable of doing, he looked at what meds he was on and read them off: Haldol, that's a serious psychotropic drug...you'd need to talk to the psychiatrist; Ativan, again talk to the psychiatrist; Lisinopril, that's usually used for blood pressure, so you'd need the nephrologist for that one. ARE YOU SERIOUS??? Oh how I wish Dr. Strickland could move up north and still be Alex's pediatrician!!!! What a dumbass he was. His whole attitude. Ugh. I can't even explain it well enough. I thought my eyes were going to roll into the back of my head and stick there.

Anyway, during it all Alex was simply charming. He was happy happy happy (it helped that there was a bathroom off to the side and the staff was letting him play in the sink). We had to leave before the appt was over to get Jeremy to a job interview at Oregon State University in Corvallis. It was so nice leaving him happy!

Jeremy's interview went really well, so our fingers are crossed. He's also got an interview up in Portland this Saturday (they're flying him up) with a place that is really interested in hiring him. They feel he'd be a "great fit" based on the phone interview, and are quite eager to meet him in person.

Ben has his first tball game this Saturday (which Jeremy will unfortunately be missing). Can't wait!

Oh, here's a video compilation of some of our visit with Alex: