Day 61 into Day 63

The rest of Day 61, Friday, was pretty good, although Mom said Josh had one episode when he struck out at her. He wasn't getting up to pee so she was trying to get the "blue sheet" under him and he hit her in the face! She took his hand, looked right at him in the eyes and said, "You don't hit Gramma!" He was sulking still when I got home. Hhmm.... Other than that, Mom and Dad said he had one PNES (they said it lasted about 3 minutes) earlier in the day when they reminded him to go pee. This peeing thing is really the bane of everyone's existence! They said, outside of those two things, he watched no TV and played with toys all day, and with them. They were exhausted! I had brought dinner home from a restaurant near the office (they were celebrating 1 year in business - they're great - Culinary Fox Cafe - and the chef was doing BBQ all day long so I picked up a whole bunch for dinner), and a friend was coming for dinner as well. Josh was hesitant to come to the table but he finally did and ate like, well, a roast pig! Josh and Dad retired to the family room, and Mom, me, and the friend all played Scrabble for a while. Josh fell asleep on the couch and, when time to go up after everyone left, went up without problem.

Yesterday, Day 62, I finally got the blood tests for him. I had called the doc Friday and explained the 4 times I had tried taking Josh to the lab, and he did a quick referral to the outpatient clinic at Good Shepherd. Then I had called Good Shepherd to "warn" them about the tests, all that has gone on to get them, and about Josh. When we got to the clinic Saturday morning, they were prepared. It had rained and I figured if Josh went down with a PNES in the parking lot, he'd get soaked, so I went in, they had his name on a sheet of paper, and I asked if we could use a wheelchair to get him in - they were terrific. A young man came out to the car to push Josh in with the chair. When I went to the registration desk to check the paperwork in, Josh did go into a PNES in the wheelchair - lasted a couple of minutes. But, when it was over, he was scooting around in the chair, turning sharp turns, going in and out of waiting chairs - it was pretty cool seeing him running around in the chair like that, but also kind of disturbing that he's been in wheelchairs so much that he knows how to do all that. Oh well... can't change history! Anyhow, we waited a whopping 30 seconds before the young woman who I guess I had talked to on Friday came out and said to just come on back. They had 2 techs waiting, and they pulled a male nurse over from across the hallway. They were absolutely fantastic - they explained everything they were going to do, the techs held Josh's right arm to draw the blood, the nurse held his left, and I sort of draped my arm around his shoulders and talked to him. They got the blood in less than 2 minutes - found a vein immediately, worked quickly, were all smiles and talked to him all the time. I thanked them over and over for making this so easy and painless (sort of, I guess!). They put the gauze over the spot where the draw was, then wrapped a smiley face adhesive gauze thing over the spot to hold the plain gauze in place. By the time we got out to the car, Josh had that off and was handing it to me. We decided that Teddy Bear (who was with during the whole thing) needed to have it on his paw so Teddy wore the bandage. Piece of cake! I just kept telling him how proud I was of him for how well he did - no hitting, not even an attempt at hitting, etc.

After the hospital we went to Bravehearts to introduce Josh to the stables and horses, to prep for camp in a week. He didn't want to get out of the car at the barn. So, I went into the barn and was just watching the session that was going on. There was a tall young man waiting for his session - he said, "I know you!" and I asked where he knew me from. He said, "I know you from now!" So we chatted a little when an older woman asked if she could help with anything and I explained why we were there, that I had spoken with someone who said it was OK. The woman came out to the car (as we were walking, I warned her to watch out, that Josh is a grabber - she said she deals with it all the time, no big deal). The young man followed us out. Of course, as the woman approached Josh, he did grab out but she took his hand and said, "we don't hit, give me 5" - he did and she backed off. The young man was standing there so I figured enlist his help - I asked his name (Tony) and introduced him to Josh. Then I asked Tony if he was nervous the first time he came to Bravehearts and he proceeded to say he had been but he got over it and it was really cool to ride the horses and you get to wear a cool helmet to help your head - he went on and on. Then he said Josh shouldn't be nervous and he went back into the barn. Josh got out of the car, I put his gaitbelt on him just in case, and we walked in - he was in high guard, but he did it! Unfortunately, he did go down into an overload (not a full blown PNES) at the doorway to the actual riding arena. The older woman was there and I explained what was going on - she went to get Sarah (the person I had spoken with on the phone - she's the rec director) and we introduced ourselves. Josh got up, sat down in a chair for about 2 seconds, then went right over to the fence where he could see the horses. Tony had been there watching the overload and he was getting a bit nervous - you could see it in his face and how he was watching - but when Josh got up Tony said again to not be nervous. Josh is pretty excited about the idea of the horses, and that they have a basketball hoop to shoot hoops while on the horse! We'll see how it goes!

After Bravehearts, we went to Rochelle - a reward for doing so well at both the clinic and at Bravehearts. We saw 3 Union Pacifics and 1 Burlington, and we had a car lunch picnic. The most exciting thing about Rochelle, though, was that Josh actually got out of the car and into the bathroom at the little bookshop/museum! Whoohoo!!! This was the first time he had gotten out of the car at Rochelle since he got out in his wheelchair when he had the broken leg (we had gone with one of the homecare workers)! And, it was the first time in forever that he went into the bathroom there! Whoohoo!!! And, we kept the car doors open while we had our picnic - he usually asks to keep the doors closed and windows up (air on!) so the noise from the trains isn't as loud (go figure - loves seeing the trains but the noise is rough for him!). This time, though, doors open, trains went by, blew their horns pretty dang loud, and Josh did great! He even got out of the car (for a whole 3 seconds, but it was out!) after he was done eating!

By the time we got home, we were both wiped out. Josh watched a train movie while I took a snooze, then he fell asleep after I woke up. He snoozed for awhile, we ate dinner, and then we both kind of just vegged. Rough getting up to bed, though, and we both had to apologize to each other for the rough time. Here the day had gone so amazingly well and it had to end that way. Well, it happens.

This a.m., Day 63, Josh was up around 6:30 and came in to wake me (oh yeah!). He went in to go to the toilet on his own (as usual), and then wanted to just wash up - so I filled the sink and said, "OK, you do it on your own this morning" and he did! I went to make the beds and by the time I was done he clearly had washed up - water all over himself (even his hair and his cheeks - he hates washing his face) and the countertop, the floor, .... But he did it! He played in his room while I got washed and dressed and now we're sitting in the family room. I think he's going to snooze - he's watching Blue's Clues while I'm typing here and his eyes keep closing. Personally, even though we haven't had breakfast yet, a snooze sounds awfully good! We're going to head over to the Rec Center today to see where we're supposed to go to camp tomorrow - he's very excited about seeing his aide again (as am I! soooo happy she will be working with him again!) even though a little nervous about camp.

So, into Day 63!