Thursday, April 27, 2006

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.

Wednesday, April 26, 2006

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

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

Saturday, April 22, 2006

Hope you can stand a few more pictures. I think Jen will like the ones with the kites...

What you talkin' bout Willis?

Friday, April 21, 2006

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

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

Monday, April 17, 2006

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!

Friday, April 07, 2006

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....

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...


Wednesday, April 05, 2006

Good PDD info can be found here:
So it's been a long few days... we've been having a ton of trouble with speeders on our street. It's an on going problem and the neighbors are constantly calling the police. Well over the past two weeks, we've noticed an increased police presence. We've been very appreciative. On Monday evening, they got 4 speeders in about 40 minutes. I was outside talking to Jeff and Nay, and our neighbor Chris came over. She was telling us about an incident earlier in the day with a speeder. She hollered for him to slow day and he proceeded to let out a string of obscenities. Well don't you know as she's telling us this story, the cop manages to pull that kid over for speeding right in front of where we were. So after the cop writes the ticket, we tell him about the earlier incident and how she had called the station regarding it. Chris runs a day care from her home, so retaliation is always a concern. Well last night I notice a bunch of police activity at her house. The passeneger from the car the day prior lives behind her. As she was sitting with her kids yesterday she saw him on the roof with a gun. It turns out it was a pellet gun, but it has the neighborhood all shook up. The kid is probably about 18 and his parents have no control over him. It's scary because we don't know how to handle it. Unless he does something major, the police can't do anything. It's so frustrating.

To make my day better, I took Connor to the developmental pediatrician yesterday. To make a long story short, he sees a lot of PDD (pervasive developmental disorder) characteristics. I don't think we left there with an actual diagnosis, but it's something we need to watch closely. On top of that, he feels with Austin's prior history that we should have a neuro work up...EEG, MRI and genetic testing for Tuberous Sclerosis. He's curious if Connor has the same mutation that Austin and Jeff do. Now we just have to figure how to get this all covered by insurance...especially the TS test since it is $500.

It's never easy...sigh... but we'll keep you posted. And please use caution if you are in our neighborhood.

Monday, April 03, 2006

It's been a busy few weeks. The first picture is us celebrating Sharon & Barbara's 17th birthday. Hard to believe. Barbara is currently in Mexico with Aunt Donnie on a tour of ancient civilizations. I am SO jealous...well maybe not the ancient civilizations part, but being away on vacation, where it is really warm!

The past week has been so nice. I think it might finally be Spring. Jeff and I spent Friday laying a new patio area off the deck. I am trying to cut down on the amount of mud the kids and dog bring into the house. Then on Sunday we broke out the bouncy bounce. The boys had a BLAST!

Here are all three of them. The did a fair amount of jumping on each other, but they had fun. Connor did much better than expected. He's always had some balance issues, but did great.

Here is Austin and Ben.
And here is Connor, he liked sliding down head first the best! The was the last one off, we practically had to deflate it with him on it!

Remember back to grade school and younger, when the teacher/mom ALWAYS said don't play near the swing when someone is one it?? Well, Connor just wouldn't listen. He had a run in with the tree swing. It his first (and I am SURE not last) shiner! It was taken at 5:30 this morning...he was NOT happy about having a flash in his face!!

Remember, click on the pictures to enlarge them. Hope everyone is well!