Day 44 and 45

What an interesting day yesterday, Day 44, turned out to be! I picked Josh up at camp for an appointment with a new psychiatrist. Before leaving camp, Stephanie and I had a long conversation about how Josh has been at camp - she said she noticed that he has had tremendous energy throughout the day, she puts out the mat for him to snooze but he says no, he's running around the whole time, very social, talkative, etc. I told her I had changed how I was giving him the NV - spreading it out over the day - and she said she really wondered if I was doing something differently. So, I'm going to keep spreading it out to see if there really is a relationship to energy level. She confirmed that she will be his aide on the Friday Field Trip, the X Camp, and at Bravehearts - I am soooooo thrilled!!!! Camp has its fun fair today (they made a mistake on that on Monday). Today and tomorrow - then no more ESY or afternoon camp!

The doc appt - we got there and Josh laid down on the sidewalk before going in. I walked away and within seconds he got up and came inside. The waiting area was pretty crowded so we stood up almost the whole time we were waiting. When the doc came out to call us, he turned and looked at her, laid down on the floor, was up within 15-30 seconds, and walked into the office. We were there for almost an hour and 45 minutes (with the last 15-20 minutes or so Josh laying on the floor not getting up to leave - he eventually had a PNES which the doc saw). Her take on things is that Josh does have an anxiety disorder, possibly PTSD from the broken leg (if not other things as well), obviously the speech issues, possibly mild to moderate MR, but she also thinks a lot of the behaviors are attention getters. She talked a lot about medication but emphasized a few times that we will not start out with meds. She is going to contact all of Josh's docs and the school (I had sheets from the school and camp that have come home over the summer and she was impressed at how well they handle Josh, that he is doing well there, and that they are in such good communication - two things she noticed amidst the papers were that one entry was that Josh likes to be the center of attention, and the other thing was right around Father's Day when Stephanie wrote that Josh said he missed Daddy), we'll get a case management team together to work in-home, and that respite care really needs to be set up. She asked if I had tried to get a Big Brother thing going - I have, a couple of times, but the Big Brother organization doesn't seem to get it that I need a Big Brother for Josh, not that he should be one! I'll keep trying, though! We talked about Francis and how well he does with her, but she said I really should have a day once in awhile to just do stuff I want to do, instead of what I need to or have to do. She is also going to be in contact with the county Mental Health Board to get things moving on the team development and respite (I'm still waiting for the contract for respite care through another service organization in the county - they called to say they are looking at the money and figuring out how to divide it amongst the families getting it, then they will send the contract for the vouchers).

I talked to the doc about NV and brought all the info - she said it looked good, lots of brain stimulating ingredients. We talked about the changes I've seen so far and she said she sees no reason why he shouldn't stay on it. Yeah!

Josh took a long time to get up and out of the office but, as usual, right after the PNES, he was up as if nothing happened. We went to get his haircut afterward - he started to be uncooperative getting out of the car and I said to him, "OK, you've already had enough moments today, let's go"and he did! He did a great job in the haircut, even helped the lady use the razor to cut his own hair (!). As a reward for doing well there, we did a dinner picnic by the trains in Ridgefield and saw a few Metras (including the two-engine one that he likes to see). We got home, he came in to pee (about 10 seconds on the floor then up and into the bathroom), sat down on the couch, and we just vegged for a little bit. He fell asleep on the couch around 8:00 and I got him up to bed without any problems around 8:30 (he was so funny - he went into the little bathroom to pee before going up, then I guess he was so tired he forgot he had already peed and he went into the bathroom upstairs again!LOL!). He was asleep in bed within seconds.

Unfortunately, Josh woke up really early this a.m. - 4:30! So right now, Day 45, he's pretty sleep laying on the couch watching a Blue's Clues. Getting out to the bus is going to be difficult!