Thursday, March 30, 2006

These are from our get together for Jeff's B-day. Thanks Rachel.

Tuesday, March 28, 2006

Hello... Hello... Is this thing on?
Well, Austin is better, and now the twins have croup :( Is this my punishment for having a night away? Well, I guess it was worth it. The Billy Joel concert was fabulous. 2 1/2 hours of non-stop Billy...see the review at http://www.syracuse.com/search/index.ssf?/base/entertainment-0/11433673785040.xml?syrenent

My biggest problem with the whole thing is the new 'lighter' craze. Instead of people holding up lighters for the slow songs, they hold open their cell phone :( I just can't bring myself to do that.

Aside from the show, I think the best part was, we got a night of uninterrupted sleep. Jeff and I woke at 11:30 with a 12pm check out...just barely made it. We joked that we finally had a bed with no kids and I think we still both slept on the outer edges, never touching :)

I think Spring is finally making an appearance, can't wait to inflate the kids' bouncy bounce and see them go. I actually did some yard work yesterday. Why is it the first time you rake in the Spring is such a joyous occasion and then by Fall you are hating every minute of it?

Connor has skipped straight to sentences...he said "Daddy where you go?" and brought Jeff slippers and said "socks on feet" Not bad for a kids who was barely speaking!

Had a few people ask me when Cindy is due. Her due date is April 21st. I will be sure to post an update as soon as baby Jessica arrives :)

All for now...

Monday, March 20, 2006

I think Austin is FINALLY feeling better. For the past week he has battled a cold and a high fever. Of course anytime there is a fever there is an increased chance for seizures. I did see some shaking a time or two but nothing too troubling. Thank goodness!

Connor has had a fabulous weekend of speech development. I even got him to say 'love you' back to me. After so long of not much improvement, this is great! Ben continues to amaze us with his speech. He is now using sentences!

Had Sharon and Barbara's birthday party this weekend. can't believe they are 17. Doesn't seem possible.

Guess that's all for now...just sitting here, waiting for Spring to arrive.

Tuesday, March 07, 2006


Oops, forgot a picture of prego Cindy!

Ben being a ham as always!







Connor put the hat on himself. he was so proud!







Austin listening to his DVD player as we head to CT to visit Aunt Cindy and Uncle Andy.









Austin eating breakfast with Daddy at the hospital.

Some of you know that we spent last Thursday and Friday at Boston Children's. Austin had a follow up EEG. It went well. It was supposed to be a 23 hour and they removed the leads after about 18 hours. There has been no change since November. There is still the rare spiking in the frontal and left temporal lobes, but only at night. Obviously I wish it was normal, as it had been for a brief period, but I will take rare spiking over seizures anyday. This means a few things. First it means that taking away the Topamax had no negative effect, but at the same time we got rid of the side effects from it (ie- overheating issues, cognitive dulling issues, and loss of apetite issues...he's already eating better). Second, we have to keep in mind that any spiking is a possibility of a seizure. So we aren't home free, but we are still in a good place. Austin will stay on the Vigabatrin for a total of 1.5-2 years this time around. Which is fine by me, provided the FDA doesn't ban all med imports. I also had a meeting with his speech and special ed teachers. He has just about tested out of services. Meaning he is doing REALLY well. The question is are we happy about this? Granted I want him to be on par with his peers, but if there is even the slightest delays still or concerns over future development, will we have enough 'ammo' to convince the school district to extend services for another year. This is what we need to figure out. From a medical standpoint we have some ammo...spiking could mean seizures, which could mean regression and the brain lesion is in his speech center and they don't know what future ramifications this brain lesion will have. On the non-medical side, he's smart as a whip...knows his colors, shapes, uses sentences...getting there on his numbers and letters. The concerns are still sentence structure/grammar usage and immature social skills.

So that sums it up. Ben and Connor are doing well also. Connor's speech teacher is happy with his progression also. He is now putting two words together at times. This is a big step. I just wish Connor would pick up more from Ben. He is such a good model.

Think that's it for now. I will post a pic of Austin at his EEG at some point.

Jen