Well the EEG is done. It was ROUGH! They wanted him sleep deprived which means he was all that much more cranky before we got there. Then I find out that the lab is on the 9th floor...and Connor is TERRIFIED of elevators. And don't you know the damn thing stopped on every floor on the way up. And he doesn't just cry, he trembles and fights to get away. At each stop he'd say 'done?'. And I'd have to say not yet, the doors would close and he'd freak again. I was exhausted by the time we got to the lab. Then the poor tech had to try and get the leads on his head. The application of the leads doesn't hurt (well the paste they used yesterday doesn't, the glue they use for long term tests does a little). He fought so hard we ended up having to strap him to a papoose board. I just couldn't hold him still enough. He finally cried himself to sleep after about 10 minutes. It sucks to sit there and watch them as scared as they are. The test was about 40 minutes, of which they let him sleep for about 25. I was actually able to watch the screen this time...not that I know what the hell I am looking for. Then we tried to slowly wake him so we could watch the transition. They ended the test with a strobe light to check for photosensitivity seizures. He was more than happy to get the leads off, but then we had to deal with the elevator again. I can only hope it's normal so we don't have to put him through this again. We don't have results yet, but the tech said it's usually a 24 hour turn around time. I hope I will know something by Friday. I will keep pushing to get the answers as soon as possible so that if need be he can go to Boston with us on May 10-11th.

Keep you posted.

good news- Austin's MRI was unchanged...meaning the lesion hasn't grown.

Connor has his EEG today- we'll keep you posted.

Some Easter pics from Cindy.
Summer, Austin and Autumn.

What a beautiful spring week it has been...new flowers and new babies. Welcome to the world baby Jessa Dunaj!

What a busy weekend!! My neighbor Rachel and I took our two oldest to see the Care Bears Live on Saturday. It was cute and the kids really seemed to enjoy it.




Then we got a call from Andy that Cindy was in labor. It was long, but baby Jessica was finally born at 8:55pm by c-section. I hear she is a cutie and is well behaved. I will post a pictures as soon as I get one.

Sunday was of course Easter. The boys were very excited to get their Easter baskets. The bunny didn't hide any eggs this year, but next year I think he will. By 8 am, they had consumed lots of candy. It was messy, but they enjoyed it.













We had dinner at Gram River's and then went down to Cousin Buck's to fly our kite. The kids LOVED it. Austin even had a chance to hold the string. He thought that was really cool...but then Daddy got the kite stuck in the tree. We fianlly managed to get it out :)






After kite flying we went to Gram & Gramp Hill's for MORE candy. The kids were definitely on sugar overload, but they had a GREAT time.







Austin has his MRI later this week to check on his brain lesion. Hopefully there has been no change in size. Developmentally he is doing fabulous. We are so excited. When he found out we were going to Gram River's he got his magna doodle out and drew a picture of a river and a house. He then told Jeff a story about going there. His imaginative play is wonderful.

Connor is also doing really well. He was talking up a storm all weekend. Hopefully all the doctor's are panicking for no reason!

I guess that's all for now, hope everyone had a great Easter!

Hi all- sister Cindy and I have a friend, Rosa, whose son has LKS. It's a type of seizure disorder, marked especially by speech loss. Deep inside I know the reason the ped wants an EEG is because of LKS. So I emailed Rosa to ask some questions. Not sure I like her answers, but see her response below. Like I said, this is something I had already thought about. I am now considering bringing Connor with us on our next trip to Boston. Keep you posted....

Jen,
I think it is very, very important that Connor have this EEG.
Some children with LKS never show clinical seizures. Zander didn 't have a clinical seizure ( that I noticed) until about 2 years after he began showing symptoms, and I just happened to see it because I was laying next to him in bed, it happened while he was sleeping....
Yes, LKS does have a specific EEG pattern associated with it, and more often than not a child with LKS is mis-diagnosed with PDD, Zander was. He is 100% not autistic. However when this illness first reared its ugly head he began to fit the profile of "autism spectrum". He was also mis-diagnosed with hearing loss, because of the auditory processing problems that go along with LKS..
Please set that EEG up as soon as possible. If Connor has an abnormal EEG, that has to be addressed immediatly before it causes clinical seizures....
The pediatrician is not reaching...I am very impressed that he thought of that because, especially in this area, LKS is very rarely thought of...or at least mentioned...

Please keep me updated... and if you have any questions at all don't hesitate to ask...

Rosa