I'm totally frustrated with this blood test thing. Josh's primary ordered blood tests - just to check cholesterol levels - and we've tried four times now to get the tests done at the lab the doc works through - and no such luck! The first time the lab as so crowded there was no way we were going to wait. The second time was at 7:30 on a Saturday morning - no one else there in the waiting room, one tech, smaller than Josh, and there was no way we could hold him steady enough for her to draw the blood. Yesterday I went to another lab facility where I was told - by the tech on that Saturday and by the facility itself - there would be two people and, between the three of us, we'd be able to hold him steady. Nope. One tech was there and she said, "I don't know why they told you we'd have two, we never have two." She suggested going back to the initial facility which is across the hall from an immediate care place where they might be able to have someone come over and help. I just called the lab to see what the deal was - how crowded they were, whether this was going to work out. It was the same uncooperative woman from yesterday's lab and she now said, "I don't know if the immediate care will send someone in, you'll have to call them." Forget it. I'm letting Josh eat breakfast (these tests are supposed to be fasting tests!) and I'll call the doc to set something else up. This is just not going to work this way. I hate the idea of getting in an ER just have blood tests - I think ERs are part of his emotional problems now and I really, really hate the idea of paying the copay on an ER just to have blood tests done. Not sure what is going to happen with this.
Anyhow, the rest of Day 56 (Sunday) was as quiet and calm as Day 55 was! We just hung out, played some games, vegged. It turned out to be a great weekend!
Monday was Day 57. Josh came to the office with me in the a.m. - was terrific. He started to go into overload as we were getting out of the car at the office but he pulled himself out of it. He came into the office, sat down on the couch for a minute, then came right back to the library where I set up my laptop to watch DVDs while I read a transcript. One of my colleagues recently went on a trip to Alaska and he brought back a DVD of the White Pass and Yukon Railway - he brought it in for Josh to watch and it was really cool! Someday.... Josh was so cute - he sat there watching the DVDs while I read, but he also had his spiral notebooks with and he was writing in them as I was writing my notes on the transcript. The little (?) lawyer! He did go into overload just prior to lunch - said we should go pee and wash hands for lunch and he went down on the floor - don't think it was a full blown PNES but was a bit more than what happened in the car. After we did lunch, I took him over to Gramma and Boompah's for the afternoon so I could go back to work (we had an office meeting to congratulate those 25-year folks, as it turned out - was rather hoping it would be an announcement of where we are moving in October!). I was sure he'd snooze at their house, especially after having an absence seizure in the a.m., but he didn't - Mom said Josh talked soooooo much! They had movies on for him (AirBud and the Snow Buddies ones) but he just talked and talked! He snoozed after I got there so we had a nice adult dinner, then he ate, and we came home. When we got home, he asked me to "Mommy play music!" so I played the piano for about an hour and a half while he played with his train and "sang" with me. We finally both went up to bed around 9:30 or so.
Yesterday, Day 58, was the lab disaster. Poor kid didn't eat breakfast, we had the problems with the lab, and then we had to go right over for an OT eval. I had spoken with the OT previously and she rather expected him to go into a PNES but he didn't. She gave him a puzzle that he did in less than a minute. She got out a little snap vest and had Josh "dress" his teddy bear that he had with him - obviously problems with maneuvering snaps but he had the finger strength to snap and liked unsnapping. She had him identify letters of the alphabet and noticed that his eye focus was actually on the row lower but he was identifying the letters she was pointing to. She had him "write" his name (the J and O are identifiable although all over the page, then he does kind of a weird curvy line for the S and then covers all of them with the H), color in a small figure (a star and a circle - kid after my own heart doesn't stay in the lines but at least made the coloring as small as the shapes), played with a sensory ball a bit, shot some hoops. He did go into overload (but not a PNES) when he was supposed to get up to go. We talked outside the therapy room and she went right into how she normally gets a referral for 8 sessions (will probably try to get more), she'd work with him on dressing (practicing with Teddy Bear to learn), work on learning to tie his shoes (although she said there's nothing wrong with velcro gym shoes if I can find them in his size!), work on other fine motor/OT things. Scheduling could be tough - the only time available is a first thing in the a.m. session which would make him late to school and me late to work. So, she would contact the doc and get that ball rolling.
The rest of the day (I had done an altered work schedule and had the day off) - he still hadn't eaten breakfast! - so we watched trains at Crystal Lake and had breakfast, stopped back at home to get some supplies and go pee (too late for him - he had gone down on the floor in the family room and did an overload - not a PNES - and peed but at least he was in a depends), then we went to West Chicago to see the trains there and do late lunch. We love getting lunch from Augustino's on North Ave. - good kids meals and good adult meals! We got home around 4:00 or so, both of us wiped out. Josh snoozed for a little bit around 5:30, and he had dinner around 7:00 or so. He is not eating as much - probably because of the NV but that is OK considering how big he is, and I know he's getting the vitamins, minerals, and protein from the NV and from what he is eating. He watched AirBud again while I did some work, I vacuumed the house (! - not Josh's favorite thing but it needed to be done!), we got the garbage and recycling out, and then we both just went to bed.
Today, Day 59, planning on taking him to the lab, we both stayed in bed a little longer than usual. He got up a little after 6 and came in to wake me. I was already awake and told him to go pee, then he could wake me up. Every morning, I go in to wake him (or at least get him up and moving if he's already awake) and we do a back rub, and then I do a voice for Teddy to help get Josh awake (we goof around with it and Teddy is quite the acrobat). So, today, Josh brought in his little Blue's Clues doll - Blue was rubbing my back and Josh was doing the Blue's voice to wake me up. Amazing! I thought it was pretty interesting that he chose Blue, who doesn't talk (he hates the newer Blues episodes with the talking Blue), rather than Teddy (again, who I do a voice and talk for). Interesting.
So, since I took the a.m. as a sick day in order to get him to the lab that we are not going to now, we'll have breakfast, maybe hang out unless he wants to go to the office for a bit, and then, yeah!, Francis will be here this afternoon to do kidcare. Whoo hoo! Josh is very excited about her being here and has said he wants to play the tip the hat game with her (we'll see if that happens, they usually just sit and talk!). So, on with Day 59!
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