Tuesday, June 4, 2013


When Bryce and I arrived at St. Joe's Hospital for Bryce's EEG this morning and went to check in at the admitting desk, we found that they had no order for him.  They asked me if I had brought one.  I told them no and that I was just told to have Bryce there by 9 this morning.  He said that he would have to do some calling around and see what had happened.  Well, it ends up that the EEG department called us to schedule an appointment but somehow forgot to send the order for it.  So...we ended up having to wait for about an hour for them to do whatever they do...write up the order, get prior approval from our insurance, etc.  For those of you who know Bryce, you know that he does not like to sit still for longer than about a half a second!  Since we had been sent to St. Joe's instead of PCH, there were no televisions with kids shows on to help entertain him either.  So I did the best I could to keep him from screaming out in boredom.  I really need to get this boy an iPad or something to take with us to appointments like this.

One of his favorite things is looking at pictures and videos of himself.  They crack him up.  So I decided to take some pictures of him.  The funny thing though is that he and his awesome little sneaky fun side threw a little curve ball into the fun.  As soon as he knew I was trying to take a picture of him, he turned away and starting laughing.  I would try to get him to look at me and he would just move into a different position, look anywhere but at me, and laugh like he was the funniest kid ever!  He doesn't have a lot of freedom of movement to do what he wants, so when he finds something he can have control of, he loves it.  He was cracking me up.  He seriously has one of the best personalities ever!

He started it off by giving me this look as if to say, "You want a picture huh?  Well, just try and make me to look at you and smile for the camera.  I dare you!"

Then he moved on to this...

Finally I think he got so tired from laughing that he finally stopped for a moment and actually looked over at me.  He is such a ham!  I just love this boy.

So after about an hour of taking pictures, walking around the hospital, holding Bryce while he twisted himself into all kinds of strange positions, and talking to multiple people who were having fun watching Bryce, they finally got everything in order and sent us upstairs to have the EEG done.  

Bryce wasn't so sure about having things stuck to his head, but he actually did really well, much better than I expected.  

The ones on the forehead were definitely the worst for him. 


 All wrapped up and ready for the test.

I was sitting next to him on the bed and they wanted me to keep his hands away from his head and keep his head in this position.  Again, for those of you who know Bryce, you know that he does NOT like to be still.  Explaining to him that he needed to keep his head in this position and keep his hands off of his head meant nothing to him.  Even though I'm sure he could understand what we needed him to do, he is just not able to lie still without having something to keep his smart, little mind busy.   We looked at pictures on my phone and then luckily I was able to find a video for him that helped keep him entertained.  It was also strange for me to have to keep his hands down, because until just a couple of months ago, he would not have even been able to move his hands up to touch his head.   He lost that ability within the first few months of his regression.  That is one of the things that he has regained since we started feeding him real food.  

So overall, the EEG went well.  Of course I don't know what the results of it are yet.  Hopefully I will hear from Dr. N with those results soon.  Then we will decide where we go from there.  


charity said...

im sure your probably know this already but alot of the times seizures dont show up on the hour long eeg because unless they are having one right then it wont show up. my daughters hour long eegs are always normal but her 24hr eeg comes back abnormal. just something to know

Jodi said...

I love his toothless grin so much!

I am stunned that he can move his hands around again. Do you have a blog post about the abilities Bryce has regained or is it something we just talked about? My Mom was asking question after question about how real eating has affected your kids and of course, I couldn't remember everything you said. I should have taken notes! :-)

Tammy said...

I had a nice, long blog post about it, but somehow most of it is no longer there. I don't know for sure what happened to it. I need to write up another one. I will try to do that tomorrow. As for the other kids, I'm trying to get all the changes I see written down in one place, but I just don't ever seem to have enough time for everything. Someday I will get it done...Maybe! :)