29 August, 2004

One of Each: Music

One of Each: Music

Looks like one of the founders of the California Golden Overtones is singing with this group.... maybe we can link all of this together.

Berkeleyan 10.03.2001 - Close Encounters

10.03.2001 - Close Encounters

Can it really be that I left college ten years ago? I remember auditioning for the California Golden Overtones like it was yesterday... it was really Spring of 1991...ten years after this article was written.
Some things don't change though... sound like the same old tune to me :)

27 August, 2004

Disneyland Resorts--Please Bring Back the Special Needs Pass Petition

Disneyland Resorts--Please Bring Back the Special Needs Pass Petition

Here is the actual petition

Disney's Special Access Pass

bloggg: Kid Stuff Archives

We were actually at the park in Southern California the day they "changed the criteria". Our son rides in a stroller that is actually a wheel chair, but since I didn't want to push an extra twenty pounds, and he can't push it himself (and he can walk for short distances) we decided to get hima stroller. Now.... since he looksnormal, and he has a stroller(that was over $1000.00) He doesn't look like he needs a Special Access Pass.

Longer story later....

The JibJab Times

The JibJab Times

I think I may buy a t-shirt with the Johnny and Georgie on it.

(Somewhat) Ed-yew-ma-cated Ramblings


This is such a great explanation of budget etc. Of course, I don't know that it is all as simple as it appears, but it is a good starting point for thinking about it.

How do we keep our nation safe but our schools well-stocked? I think we can do both; can't we?

I actually think the two party system is failing us; it automatically pits one side against the other.

My husband laughs, but I still think the best way to run the country would be to have the winner be the president and the second-up guy be the vice president. Then no one would really be able to bad mouth each other, and the debates might be about something relevant rather than whether or not Bush was a wussy draft dodger and Kerry threw medals and ribbons, or just ribbons, or just medals, and if he was right to protest the war at all.

My brother Gerard just informed me that he is not going to vote. I think that's shameful, but didn't exactly use those words to tell him that. He is disenfranchised for sure... and is adamant that all politicians do is "lie to get your vote", then do "whatever they want" once they are in the White House. Yikes. I am not quite that cynical, but I suppose I am close.

I just can't imagine listening to Kerry's voice for four or eight years.. and I'm positive I can't stand anymore un-ed-yew-ma-cated (although remarkably well-lettered) George Dubbyew.

But politics is kind of like when my husband and I go to the movies:

After finding a babysitter, selecting a film, spending too much money for a cramped seat, we are invariably disappointed with the picture. We talk about it later , but what we always come to is... "What exactly, at this point, would please us?" We have low expectations of actually being thrilled by a movie, even then we are let down. Okay so how does that tie in? Well, I guess I just don't know who could meet my expectations for the White House.

I suppose I do want "The West Wing". Or at least the first couple of seasons. The best part about it? Well, when the audience doesn't like what it sees on the tele, the writers make adjustments to the president's actions.... hmmm now there's a thought...

Whatever... gotta get my kid dressed. We have no medical, physical, dental or auto appointments today, so we are staying in our jammies until noon.
Oops... it's almost 1pm.

22 August, 2004

Camping in Carmel


well, we are off today to camp with the family in Carmel Valley. Hopefully Jake won't run off. At least the dogs will be at home... Normally I worry... we are going to lose a kid or a dog. I think this time I will just lose my mind. Jake didn't sleep last night, and he seemed a little overwhlemed by his cousins (both girls, both super smart, both very active)

Prayer is the only thing that is going to get us through camping.. oh, and valium. Yes valium. and wine... (but never together of course)

12 August, 2004

Special Child: Disorder Zone Archives - Angelman Syndrome

Special Child: Disorder Zone Archives - Angelman Syndrome

Hmmm I wonder if this is what Jack has? Angelman syndrome.

Angelman syndrome is a rare neuro-genetic disorder that is predominantly (70-75% of cases), caused by deletions on chromosome 15 given by the mother.
Other classes of AS that also lead to the typical clinical features of the syndrome are:
- unusual chromosome rearrangements (2%),
- inheritance of two paternal 15's and no maternal 15 present (4%),
- mutation in the imprinting center or UBE3A gene (3-5%)
- unknown causes (15%).

Currently, it is estimated that the incidence of AS is somewhere between 1 in 15,000 to 1 in 30,000, and the greatest majority of cases are of Caucasian origin. Males and females are affected equally.

Lucile Packard Children's Hospital Gregory M. Enns, MD

Lucile Packard Children's Hospital Find a Physician

Well, we are going to go back to the drawing board with Jake... back to genetics. It is difficult to know whether we have ruled out everything we should, and while it doesn't really matter, and it won't affect what kind of services we offer him... it will help us decide whether we have another child.

Of course it will take forever to get back into the genetics clinic. I think it took six months last time.... But Gregory Enns is great. Terrific sense of humor, smart and honest. We felt very taken care of. Of course I wish we had waited a bit... so I could have known which questions to ask.
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