The wurster, the better

We all had a great time at the XPN party on the Moshulu last night. Maria and I took both of our daughters, Alicia and Tabitha. We wanted to take Alicia because Matt Santry had worked with her a couple of times using music therapy several years ago. We hoped that she could meet him again, but that didn’t work out. It was very crowded. Alicia did enjoy the music and the people. Everyone was very friendly and courteous to her. I want to thank the one woman who chatted with her and gave her a Phillies rally towel.

Our oldest daughter Tabitha also had a good time, and actually met someone she knew. I had a great time and I guess it was karma that we went. Why? Because I met someone I knew way back in the old NDI days. I was very surprised when Tina came up to me and said hi. She and Felicia and me and my wife Maria and John and others always had a great time partying after work (and that was over 30 years ago – my, time does fly by). I hope we can catch up on the good old days, especially since she gave me her phone number.

All in all, it was a very, very enjoyable evening.

I am pretty much fed up with Aurora. I have been trying for months to get the account my daughter has in her name either cashed out or have a check made payable to the special needs trust we have set up. I asked at least twice during the summer what I needed to do and did what I was told. Then I had to wait 4-6 weeks before I could find out a status. And they wouldn’t tell me when they received my letter and required information. They said well add 7 to 10 days to the date you mailed it and then add 6 weeks to that. You can contact us after that date. This company is definitely not out to help its clients. It seems they are just making it difficult.

Yesterday I called since it was after the “calculated” date. The client services person then said that they needed a copy of the guardianship document. I was frustrated and demanded to speak with the supervisor. The supervisor then said he needed to consult with someone and would get back to me. He did call back about an hour later. Now he says that they need an official copy of my daughter’s birth certificate. I went crazy again. This request will have to be made to the state and it will take a few weeks, at least. I told him I would do this and then have to wait another 4-6 weeks. I then demanded that his supervisor call me the next day (which is today).

This is all just too crazy. You follow directions and then are told to do something more. This would be okay if they would them respond quickly. But they tack on 4-6 weeks which really means 6 weeks. Delay, delay, delay. This will now extend into next year.

I need to find out what to do. They are not servicing their clients.

Last night at 6:47pm, my niece Kristy and Ricardo had a baby girl Madeline. She weighs 6 lbs 8 ozs. Mom and Dad and little Maddy are doing fine. Congratulations Kristy and Ricardo. Your lives have now changed radically. I’m sure you’ll do fine. Good luck Maddy with your new life in NYC with your Mom and Dad.

On another note, my health, I got a call from my cardiologist concerning my leg artery ultrasound I had last week. He said there is disease in my legs but below the knees. The medications I am already taking is the only thing to do at this time. He felt that this was not the cause of my right leg problems. And he’s right, because the neurologist called yesterday with the results of the MRI. He said I have arthritis and disc bulges. I’ll need to call today to find out more about this. My game plan is to continue taking a lot of ibuprofen for a week or so and start physical therapy to strengthen the muscles around my spine. I hope to schedule this PT today. Then go back to see him in about 6 weeks to see how things are going. I already have felt an affect of the ibuprofen. My leg doesn’t have as much pain as before I started. And I slept better.

The only problem I’m having with the large doses of ibuprofen, is indigestion.

We had a dinner last night for Drexel alumni and students. It went very well. I didn’t realize that so many of my “green” friends went to Drexel. Since the topic of the dinner was sustainability, all the alumni and students were chosen since they had an interest in this subject. The alumni were friends from some of the local green, sustainable groups I belong to. The students were mostly from the A&E program at Drexel and had some involvement with the Drexel Smart House.

We had a lot of interesting conversations on sustainability and what each one of us was doing. I met some new alumni I didn’t know before and hope to keep in touch with the entire group, including the students. They primarily will be the leaders and take us forward on our road to being sustainable.

Days and weeks go by and I don’t seem to be able to get the important things done. Why? Because they are out of my control. It makes me angry and upset that I can’t get the Special Needs Trust for my daughter moving. It is holding up us applying for SSI and applying for the MR waiver funding as well as the autism waiver. And it will make us expend our money (which I happily do) to pay for services that our daughter needs.

For those of you out there with disabled children, please keep up with what needs to be done and do them on time. It will save you a lot of grief and stress.

Our “dinner with 12 dragons” is coming up this coming Friday. It will be nice to have some Drexel alumni and staff and students at our house. The topic for the evening will be sustainability.

My legs are still bothering me but I am trying to ignore the discomfort. I was going to try an acupuncturist but just don’t feel like it. I’ll wait for my neurologist appointment in a couple of weeks.

I found out yesterday that I am permanently transferred to the department I was temporarily on line to. That’s great for me. As long as I can feel productive and help out and be appreciated is all that matters.