Day 79 into Day 80

The OT session yesterday, Day 79, went pretty darn well! Josh had a PNES getting out of the car, but after that he was rarin' to go! Dana was right there, he went right in, and they worked hard for a full hour. She said they worked on fine motor stuff - she was working with Josh on buttoning - she would pinch the slit open and he would slide the button through - he doesn't have the motor coordination yet to do both aspects of buttoning. They also worked on writing his name and holding the marker correctly - she said it was a good idea for me to have gotten Josh the triangular crayons for school supplies - they promote correct hand grip and, voila, they don't roll off the table or surface! She said the J was looking good and the O is really good; S is a little dicey and H looks like railroad tracks (still!). She said there was one hitting thing but she said it was very slight, very light, and he pulled back as he started - she said she clearly got into his space too much.

I mentioned to Dana the dinner plate picture - don't recall if I wrote about it yesterday. We were sitting at dinner on Monday night - meatloaf, he had sweet potato, and we had zucchini - very colorful dinner! So, I took his spiral notebook and said let's draw a picture of dinner since it just looked so colorful! We pulled out all the colors of markers that matched the food colors, I drew the circle for the plate (in blue, since that's the color on the plate that was exposed), and he colored in the spaces for the different foods. When he was done, and the notebook was sitting right next to his right elbow, he said, "Too much, too close!" and he got up and moved the notebook away. Josh always eats with his plate way far away from him - sometimes in the middle of the table. I always thought it was the smell of the food overwhelming him, and maybe the colors. But, when I mentioned the notebook thing to Dana, she said it would seem the colors are overwhelming him more. She said it was very interesting and she would work with using multi-colors when they do fine motor/writing work - to see if that is part of what is going on.

After the session, we got home and Gramma and Boompah were there already (they were kidsitting for the afternoon). I had the chance to mow the lawn (yeah! it really needed it!), and then zoomed off to work.

I also called the neurodoc yesterday (while I was at the office) to ask about Josh seeing the "blue light" and getting the headaches. I also mentioned the getting up thing - when Josh gets up from laying or sitting down for a long time (except in the a.m. when he stretches in bed before getting up), he will quite often (if not always) get up, stop for a second, and plop back down as he puts his head in his hands and then just sits again - yesterday and Monday Josh said he had "wobbly eyes" at those times and that was also when he saw the "blue light" and got the headache. Doc asked how often it happens and I said almost all the time except in the a.m. or in the evening after he's snoozed a bit and then gets up slowly to go upstairs. I was concerned that it was a reaction to the Keppra or some other type of seizure going on (with the blue light he says he sees and the headache, I was worrying about temporal lobe absence seizures since these "episodes" last a very short time and he doesn't lose consciousness or anything). Doc said he doesn't think it is related to epilepsy at all - sounds more orthostatic - blood pressure drops/vasovagel syncope. Well, I know all about that since I've got it - and I never made that connection with what was happening to Josh! So, doc said the keep a journal for the next two weeks, have him stretch a bit before getting up to get the blood flowing, and give him 4 more glasses of liquid a day (this a.m., I realized he probably isn't getting enough liquid to counter any possible vasovagel effect so I'll up the liquid! there is liquid in what we eat, especially the applesauce Josh has, but I think maybe he needs more actual liquid - juice, water, etc.). I called Josh's primary doc to let him know (doc is on vacation) and the nurse I spoke with agreed that keeping the journal and upping the liquid is the way to go (she said gatorade or something like that would be good as well - watered down). If things get better and these "episodes" lessen, then we're looking in the right direction, if not then we'll go from there. (nurse also said the blood tests Josh went for a couple of weeks ago are perfectly normal - yeah!) So, even though he's going through this "I don't want to go in the bathroom to pee" thing, liquid will increase and hopefully he'll feel better upon rising - maybe that's what is prompting the PNES when he has to get up or get out of the car after sitting for awhile (and so on) - if he's dizzy he's probably nervous about getting up and particularly going to pee - who knows???

Gramma and Boompah said he did really well with them - played with Gramma and the train, worked at the dining room table with his notebooks for a really long time, had a good lunch, slept for a bit. When I got home, they were in the living room just chatting. They said he had another PNES for no apparent reason - he was laying and watching a Blue's Clues, they were just hanging, and Dad said he looked over and Josh was going into a PNES. Mom said, though, that right after, he said his tummy hurt - and then he went in to pee and poop (again) and felt better. Now that I'm thinking about it, vasovagel can cause dizziness when pooping as well! Hhhmmm... I will need to make the new charts for the bathroom and the "laying down thing" - he has finished the second chart already (first chart took almost a month for the bathroom, this one only took two weeks - progress!!). Josh is still staying up later - he didn't snooze off until almost 9:00 - got him upstairs without any problem (and no dizziness) at around 9:30.

So, we're into Day 80 - the day before school starts! I've taken today as a vacation day so I can make some baked goods for lunches, maybe make some homemade granola or energy bars, we'll organize his backpack and get it ready, maybe look for some trains later in the day, do the laundry and get all his clothes together (extras to take to school) - all the day before school kind of things! On into the day!