Thursday, June 12, 2008


So I've been lazy about posting - sorry. I'm at work right now. I'm based out of the library today because I share an office with the youth interns and they are here today. They are not, however, actually in the office. Instead they are in the parlor - right next to me playing with the middle school kids and making so much noise that I absolutely can not be productive. So, I'm posting instead!

Before I tell you the tale of the EEG, I can't remember if I mentioned that we officially got into Head Start for the fall!!! WooHoo - Sherri, if your reading you can do the hip swirling dance for that one! My Monkey will have a full day of school all week next year with his current PPCD teacher as well as a "regular ed" teacher. It is going to be good. The only catch so far is that they don't want to accomodate our gluten-free status. Apparently as part of the Head Start program the kids are required to eat breakfast and lunch at school and they don't have to accomdate any dietary restrictions without a doctor's note stating it's medically neccessary. Nice. We're working on it though - God will make a way to keep me from having to glutenize my son everyday.

Now for that fun part..........the EEG. So, Tripp got referred to have an EEG done to rule out seizure activity. He zones out sometimes and doesn't respond to anything and then he comes back and goes on about his business. We realized this could be small seizures so the EEG was ordered - like over a month ago. I finally called last week to find out why we hadn't been scheduled and Helen - the secretary for Dr. Hall our developmental pedi - said enough that I knew they had forgotten. Apparently my phone call helped them remember because St. Joes called the next day to schedule it. I asked a lot of questions about how it would go and felt confident that I could handle it on my own. (ie - no need for Easy to stay home or have someone go with me).

Yesterday was the big day. Our appointment was at 10:30 and they said to be ther for check-in at 10:00. I wasn't sure exactly what sort of distractionary techniques I'd be allowed to use so I packed an assortment of things in the backpack and planned to just not show Tripp any of it until we were in the room. We got through check-in at 10:15 and then started the wait. And we waited. And waited. We pottied. We waited. We jumped, well, he jumped around. We pottied again. I started wondering why I thought I could do this alone. We waited. Finally, at 11:30 (!!!) they came to get us to take us to the EEG room.

Once there I started asking what I might be able to use to keep him still. They had told me on the phone that they would need him to be still. In fact they asked if we could schedule it at his naptime. Ha. He so doesn't nap. The tech that was doing the test clearly fell into the category of people that just don't get it. Everything I asked about using she would say "Sure, while we're putting on the leads, but then you need to put it away." Yea right. Like I could let him see we have the video player and then take it away. I kept asking questions and she says, "Well we really would like him to get comfortable and go to sleep." Hello? Does he look tired to you? He was dancing on his toes at that moment. I finally said," Look, he's 3 and he has a form of autism. If you want him to stay in that chair I need something to occupy him." She conceded to allow us a book. Yippee. 1 book.

We settled in the chair and started the process of putting leads on his head. She had to clean each spot with this stuff that looked like salt-scrub. He was not tolerating that well at all so she decided to just put the leads on with out cleaning all the spots. This seemed a good idea on the surface. Unfortunately, when she got them all on and went to callibrate the machine and make sure everything was getting a good connection she wound up having to take off about half the leads (as in pulling the tape out of his dry hair and take off the lead), scrub the spots with the cleaner stuff and re-do them. Man was THAT fun. Perhaps we could have just done it it right the first time. Oh well, I can only hope that her next victim, I mean patient gets the benefit of that lesson.

We finally get things settled and she start watching things. I'm trying to keep him calm so I'm rocking him in the chair. The tech calls in," I'm going to need you to stop rocking." ?!?! Why do you put a mother in a rocking chair and tell her to keep her child still and then say no rocking? Grrr... It just got better from there. She kept calling Tripp "Foster." "Foster, be still." "Foster, I need you to be quiet." I finally looked at her and said "His name is Tripp." (like she hadn't heard me use his name 600 times since we walked in) She looked very confused and pulled his little chart. Finally she figured out that Foster is our last name. Seriously, she really seemed to believe that I should be able to just sit ther with him in my lap and keep him silent and still with nothing to entertain him. Clearly, she didn't get it. He would start stimming and she would look at me with this "make him stop" look on her face. I just sat there thinking - "Woman, if I could make him stop I wouldn't be here!" I smiled and whispered to him and we somehow made it through.

The removal of the leads wasn't as bad since she got this enormous washrag wet and laid it on his head. I finally just took it from her and finished it myself. To her credit, she couldn't possibly know how to touch Tripp without upsetting him. She seemed grateful that I took that part over.

Needless to say, we were both spent when we got done. We left the hospital a little over 3 hours after we got there. We picked up the girls, cnaceled speech for the day, and went home to retreat to our corners. Exhausting!

We have about a two week wait I think before we'll hear anything on the results. I don't even care today. I'm just glad it's done. I think it was the first time I encoutnered someone who just so clearly didn't understand. All those movements and noises he makes - that IS him being still and quiet. You want to see his brain at rest, this is as close as it gets. Man, I hope we don't have to do that again anytime soon!


erin said...

All I can say is bless your heart. I might have said something ugly. I think it sounds like Tripp did great.

debralynne said...

You poor things....well at least that's over for now. Take care and rest up. We'll be seeing you soon.

Stephanie said...

Love you! So glad that you and Tripp 'made it'.

Matt, Kara, and Hank (plus Teej) said...

Yikes. Would any child that young really calmly tolerate the long wait and the gluing on of strange equipment, and then simply get comfortable and go to sleep? (I know he is much younger, but Hank would completely freak out.) I mean, are those expectations reasonable under any circumstances? Then add to the mix the challenges you face with Tripp - what a nightmarish situation. Wow, I'm sorry you had to deal with that.