Wednesday, September 2, 2009

A Belated Report and More Summer Fun ...

Earlier this summer, we spent a weekend catching up with family. We headed to New Jersey and our first stop was to see Jenny and Ralph. We hung out for the afternoon at their apartment complex ...

... before checking out the sites and sounds (and a few shops) of Princeton.

Then the next day we headed to a reunion of my Dad's side of the family to celebrate my cousin Pat's 50th birthday.

Michael had the privilege of being asked to help the honored guest blow out his candles.

Then on the way home, we stopped to visit with a gathering of family on my Mom's side of the family. My cousin, Tommy, is Highway Superintendint for the town and took our little buddy to ...

... check out the heavy equipment!

I had to laugh, my Dad's side of the family is typical, full-blooded Irish and my Mom's family is typical, full-blooded Italian so I could tell my poor Polish husband was a little shell shocked by the end of the weekend. But it was a great weekend and I wish we had had more time to spend at each place.

I was also looking back through my last posts and realized I never shared the results of our meeting with the neurologist in June. It was actually very disappointing. Dr. Wang wasn't available to see us so we saw one of his assistants. And, no matter how I argued - she wouldn't agree to take Michael off of the Tegretol. She didn't agree with my argument that Michael has been seizure free for 2 years and even then he was having "partial" seizures. I thought we could try taking him off the medicine and at the first sign of his old symptoms, we could put him back on. But, she said protocol says he needs to stay on it for at least 3 years after his surgery and that we would discuss it next year (but even then she sounded resistant).

I am just concerned that the side effects of the Tegretol will cause damage in other parts of Michael's body that could bring on a whole new set of problems. For instance, Tegretol can damage the liver and there is a genetic liver disease, Hemachromatosis, that runs in my family. In fact, the effects of this disease are what killed my mother. And at this point, Michael is too young to be tested for it. So for now, we are respecting the doctor's orders but if they still resist next year, it may be a different story. I understand that they are looking at it from a neurological standpoint but I am looking at it from the big picture.

Next time, I will share with you our summer vacation in Cape Cod. Until then, please keep Michael in your thoughts and prayers, JoAnne.

No comments: