Saturday, March 17, 2007

New Platform

I was invited to move my blog over to the local newspapers' site to become part of the Parenting Blogs.

I hope you will join me.

(click above to be re-routed)

Friday, March 16, 2007

Happy Birthday

A big Happy Birthday to my baby sisters Sharon & Barbara.

18 and out world!

Sharon & Barbara- age 6, 1st grade

Wednesday, March 14, 2007


Please stay tuned...I will be switching to a new platform over the next few days. Details to follow. Any me.

Monday, March 12, 2007

On Hiatus

I am sick. I am on hiatus. Maybe tomorrow I will find the energy to write.

Plus my stepdad is in the hospital with pneumonia. He's getting better.

Wednesday, March 07, 2007

Cold, Cold and More Cold

It is cold here and I mean COLD. This is not March weather....I am not sure this is even NY weather. I feel like I am in Northern Canada. Not that I have ever been to Northern Canada, but I imagine this is what it's like. The wind chills are hovering at about 20-30 below 0. This is not fun! I can only imagine my heating bill next month...much less gas for my truck. Someone tell me how the price at the tanks can rise 3 TIMES in one day.

Anyway, I met with the CPSE board for Austin yesterday. They feel additional services are not necessary right now. The lowest marks he received on his Speech and Psych tests were in adaptive behaviors (self help) skills. Toileting and dressing were holding him way back. In the month since we have had those tests, he is nearly day potty trained (YIPPEE!) and more willing to dress himself. I was truly beginning to think that he would go to kindergarten in a pull up. So the board felt that the OT can just add some self help skills to her therapy for now. I am content with that. We did also talk about attention issues. I still feel this all ties into his night time awakenings. I am going to look into having a sleep study done for him. The parent rep for the board mentioned there is a Professor at the local college studying kids, but when I called I was told the child has to have an Autism Spectrum Disorder to qualify. Oh well, at least we have a sleep center locally. Austin's ped is going to do some research also.

I am still working on scheduling an ERG for Austin. As I had said, Boston can't fit him onto their schedule until October. At that point it'll have been 17 months since the previous test. A LOT can happen to his vision in 18 months. I spoke with someone at the TS Alliance who got me information about Sick Children's in Toronto. As much as I want to see Niagara Falls, I don't want the hassle of an 8+ hour trip to Canada. Then I looked into Children's Hospital of Philadelphia. CHOP is only 4.5 hours away. They can fit him into the schedule in 2-3 months. Finally, someone in my IS Support group mentioned Morgan Stanley Children's Hospital in NYC. They can fit him into the schedule in early APRIL! They pulled the tech out of a procedure to talk to me. She is going to call me back later with a firm date.

The relief is palpable! Now I can go back to my cubicle and huddle in front of my heater for warmth.

Monday, March 05, 2007

To Be a Kid Again

Mema and Bepa took Austin out to play in the snow. It was one of those days that it wasn't too frigid...meaning temps near 30 and little wind...unlike today, and tomorrow and Wednesday and Thursday. I WANT SPRING!

Snow Angels

With his snowman, er, snow bear, or cat...maybe it's a dog.

What is with the ears??

I Can See Clearly Now

Well if nothing else, I can see in High Definition. I gave in, I folded, I let Jeff get a new TV. He asked if I gave in because I got sick of listening to him. And in reality, that's a big part of it. And then he goes on to say, that he may not buy one today, he doesn't want to jump into it. I almost choked on disbelief. He's been 'researching' tvs for at least a year. There is NO WAY he doesn't know everything he wants to know. We went through this a year or so ago also. At that point I put my foot down and said no HD, no LCD, no 720p or i or whatever it is. I don't see buying into technology that isn't readily available at a reasonable cost. Because I know that if we get a new tv, then we need a new receiver and then we need a new Dish DVR... not to mention all the cabling. So it's not just the expense of a tv. Now the new thing is 1080p. I just don't understand why they are putting out tvs with this function when they won't be broadcasting tv stations in 1080p for AT LEAST 6 years. I guess if we end up with a blu-ray DVD player and buy more expensive blu-ray DVDs then we will get the full benefit, but right now that is NOT happening.

So we went to one Big Box Electronics store and asked some info and got prices. The nice thing about the sales person was he explained why a LCD vs a plasma and vice versa. And also explained that 720p is really all anyone needs. So we decide to price compare and go to another Big Box Electronic store. 4 HOURS LATER, we finally had a tv and a new receiver. I am still not sure why it took 4 hours, but I do know that the twins were miserable by the end...and therefore I was miserable by the end. Oh, and we ended up woth the 1080p because it was only $100 more.

If that were all, fine, but then we had to go home and install the thing. By 8 the installation was done, but now our universal remote will not work and it won't let us re-program it. UGH!

What's done is done.

Thursday, March 01, 2007

Some Help

I belong to an online support group for Tuberous Sclerosis. I felt that even if Austin doesn't have TS, they have the most experience with Vigabatrin. In talking with one of the members, she felt the Director of Clinical Projects at the TS Alliance may be of some help.

The Director called me yesterday. She is going to try and help me find another place for the ERG testing...though neither of us is hopeful. It appears there is only one ophthalmologist in all of the northeast that does this test for pediatric patients.

Also, she is going to forward the genetics information onto a research at UT Houston and another researcher at University of London. Both these women are working on compiling databases of known mutations.

I'll keep you posted on anything useful we find out.

To Rachel- none of the info is reportable. Thanks for your help!