Traditions - His Voice

James had an assignment for a class project: choose a family tradition and write about it.

I discussed traditions and ran a few examples by him. He chose one and we talked about it. I did some Q&A on him and did some ghost writing but here it is, in his words:

 

James typed a bit but then stopped in frustration. We are working on typing on the computer with him. He gets frustrated because he's used to tapping and swiping on his iPad. I finished typing what we'd written. I chose the font based on an article I'd seen on the Read Regular website (a fascinating look at how font choice and spacing can help those with reading difficulties) and printed out the finished product. Then I asked James to get the printout and read it.

I thought he'd just skim it, but he read the entire thing aloud. At the end, he looked up, excited. Because he recognized his words. On paper. Just like a book!

And it did become part of a book - his class sent home a bound book of traditions, and James' was right there, along with everyone else's.

So proud!

New Year's Goals

Time to set some goals for the coming year 2015:

1. James needs to eat more to gain weight. Currently he is pushing 4' 11" and we're struggling to keep him above 60 pounds. He was 87 pounds last August. Not sure why he's decided food is evil. We have ruled out Celiac Disease and throat/stomach/upper bowel issues with an endoscopy. Which made James even more determined to Never Eat Again. Sigh.
       
2. Help James become more "regular." We're going to be trying biofeedback for that. In San Francisco at a Lucille Packard clinic once a week for the next 12 weeks. I'd say "shoot me now" but the truth is ... we are desperate for help with this.
        
3. Get James' speech back on track at school. It's pretty much not been happening over the past 2 months. Not happy about that at all. He needs help speaking. It's in his IEP.
   
4. Get Behaviourist help going. We're finally approved and not having to worry about hundreds of dollars in copays. We've started the intake merry-go-round. We need to finish it AND start the sessions!
   

                          Goals on a more normal level ...

       
5. Have James' birthday party BEFORE Easter this year. Bowling alley sounds good!
        
6. Send Thank You cards for Christmas this year (meaning for Christmas 2014 by the end of January). I know we all can do it. We should do it. We will do it!
         
7. Try to add Saturday Sidekicks back into our routine. That is one awesome program!
        
8. Breathe. Believe. Do.

Christmas Morning 2014

We all got to bed a bit late Christmas Eve, so I was able to sleep in until just after 6:30 -- yes!

James was first up. He was so excited: "Is today December 25th?" "Yes." "Is it Christmas?" "Yes." "Hooray!!! Angry Bird Season Christmas is open! Can I play my iPad?"

My, what Charles Dickens could have done with that one!

Anywho, we did all wake up a little after that, had some freshly baked scones, bacon, and eggs for breakfast (unless you were James, who had mini blueberry muffins and a scone). James did get excited with his stocking and presents:

James unexpectedly liked the snowman tic-tac-toe game. Not that he wants to play it with us, he just thinks it's neat and likes to fiddle with it. He also liked the hand rocket launcher ... until the fins started coming off the rocket. Then it was oh noes time and we had to hide them before he could calm down and move on to something else.

He really liked the Star Wars selection of bath soap - more for the figurine/bottles than happy anticipation of bath time, I'd say. He also liked the Star Wars reader book.

James does not like sugar or candy much. He does love the Trader Joe's organic lollipops - only the red ones, though! Santa's paper this year was SpongeBob & Co in Santa gear ...

  

He did like Fred from Big Hero 6 ... mainly because Fred dresses as an over-the-top monster who shoots fire sticks from his mouth. What is not to like?

James did a Happy Dance for his Robot and the Minion characters went on such a spin that I could not capture them on film. He also received a large amount of fabulous books!


Is he playing with some of these toys? YES! Not as much as I'd like to see, but he is playing. So that's a good thing.

Pineapple Express '14

What else happened in December ... oh yes - rain! After too many years of drought, especially after this past Spring that almost never was, we welcomed rain from a Pineapple Express.

I think we received some delayed water shipments, because the storm on December 11th dumped so much on us in a short while that roads, freeways, storm drains, and creeks were overwhelmed.

From Kent Porter in the Press Democrat

For the first time ever up here, school was cancelled for both kids/districts. Really, it was because the roads were compromised and people weren't sure about landslides later in the day. Regardless, I am so glad James does not take the bus. Some kids were waiting in the rain for 30 minutes for buses that never came - that's how close his school district cut it.  I actually called him in sick first, because his lack of eating after his procedure plus his anxiety over getting spots of water on his clothing just made staying home the better option that day.

James' sister's school waited too late, in my opinion. I was almost in the car with her before getting their cancellation message. Some parents had already dropped their kids at school and had to go back and get them. Oh, there were MANY unhappy parents that day ... which is why both districts announced that same afternoon that schools would also be closed the next day (Friday).

While I was glad my husband could be home with the kids, it was a bit sad to be the only one in the family who did not get a Rain Day off. Still, I did get an earlier start (and finish) than usual. I even got to do what the locals do when we get Rain -- head up to Memorial Bridge and take some pictures while sipping some Flying Goat coffee.

Memorial Bridge, under construction - yes, the workers were there & working - almost at flood stage.

On the railroad bridge, watching the park flood. haven't seen *that* in a while!

On the Way Home

James' procedure took us in to San Francisco the day of Walt Disney's birthday, which meant that we'd be driving by the Disney Family Museum while it was FREE to the public.

We almost made it. James even thought about it. After all, the special exhibit is Walt Disney's trains, and James loves trains.

However, there was this slight issue that James could not walk very well and what he *really* wanted to do was to go home. He did, however humour me and let me drive by.

There was even an open parking spot RIGHT in front of the museum's front entrance! Free parking for 2 hours ... sigh.

But nope. It would only be fun for me, and James had already put up with a lot that day. So off we went, headed north.

Meanwhile, During the Holidays ...

I haven't been posting because things have been pretty white knuckled these last few weeks.

James came out of his procedure fighting mad. Literally. He started roaring before he came fully out of the general anesthesia; as soon he could talk, he was howling at the top of his lungs: "Owwwwww!!! It hurts! It HURTS!!!!!" and bucking on the gurney. I tried telling him I was there and everything was over and he was ok.

"No, it is NOT ok!!"

"These people are NOT NICE!!!"

"I HATE San Francisco. It is NOT GOOD FOR YOUR HEALTH!!!!"

Then the recovery room fun really began.


"aaaaAAAAAAAAAAAAHHHHH!! It hurts! IT HURTS!!" He hollered, as he thrashed about, kicking off his blankets and reveling the fact that he'd somehow also shucked the hospital gown and was now completely clothing-free.

Then he grabbed the IV line in his foot: "Get this OFF OF MEEEEEEE!!!" and almost yanked it out right then and there. We got hold of him as gently as we could and tried unsuccessfully to calm him. The nurse removed the IV line as soon as she saw he was as good as he was going to get and offered James a Spiderman band-aid. "I don't WANT a STUPID band-aid!" he informed her, before being reminded that the polite way to refuse something. "No. thank. you," he tersely amended his statement.

The recovery room nurse was so nice. Everyone one we met there was fabulously helpful and nice. But before too long the "it's okay, some people come out of anesthesia like that" changed to "okay, you can go now!" I got a big hug on the way out and was told to take care of myself.

But it was not over yet, oh no.

As we wheeled into the elevator to leave the building, a group of older people slowly got on the elevator in front of us. One lady saw James and kindly tried a smile at him. "I don't like you!" he yelled. I died a little more inside, apologised to her, and then apprised James, in a low voice, that he'd just lost iPad privileges for a good chunk of the afternoon.

I won't even go into line to get to the machine at the parking garage because the group in front of me didn't have their ticket and were trying to pay anyhow. If you wish, picture that with construction crews spray painting around us and James wailing for all he's worth on the sidelines. OMG with a side of lalalalalalala.

We did make it home without incident. James even ate some ice cream. Then I went in to work for a bit and made websites better.

Then James refused to eat PERIOD. Because food is evil, his throat and tummy were sore, and he still did not want to poop. See what you missed?

At the OR

Waiting is awful, when you are outside the OR. Even for minor procedures, such as the one James is undergoing right now, it is tough on the psyche. I hold his hand and smile, and try to not think of anything that could go wrong. We've sliced fruit, ninja-style. We've watched PBS kid programs. I helped him take his meds, hold the mask, and now I am waiting. Watching his number on a board and waiting for it to change from blue to pink, so I can sit by him in recovery.