Is she better?
I’ve had a really really tough day. And I will warn you, this post uses the f-word. A lot. And if you object, well, fuck you.
On July 25, 2010, In Diagnosis, Guardianship
There is so much to say on this topic, but I won’t say it all now.
I fought, with websites and a blog, visits to the State House, conversations with the U.S. Congress, to get Pearlsky out of the No Child Left Behind (NCLB) testing (and we won). Why? Even the “special needs” version REQUIRED asking Pearlsky multiple questions, over a period of 45 days, and more. But that’s another post.
On June 21, 2010, In Diagnosis
Epileptiphobia: an exaggerated usually inexplicable and illogical fear of seizures, typically those occurring in a loved one
On June 13, 2010, In Diagnosis
We went to the clinic in the hospital today to see if Pearlsky has a urinary tract infection. We have known this doctor for about 15 years, she was not in today, and we knew that her nurse would do the test. Here is the email I just sent the doctor. click here to continue reading …
On March 21, 2010, In Diagnosis
As I have blogged about before, my children have an inborn amino acid deficiency. They have a gene defect so that they do not make an enzyme that breaks proteins they eat down into amino acids, and without this particular one, well, you get Pearlsky and her brother.
On February 2, 2010, In Diagnosis
My parents used to cringe when that was how I started a phone call from college. We still joke about it.
Something happened recently that I decided not to blog about. You see, I am generally a happy person, I go about my day like we all do and when some s**t falls from the sky, well, I blog about it. This blog is about the tougher part of being a single dad with a severely disabled teenage daughter. Yes, I have her, own a high tech company, and a small coffee company, and do all sorts of stuff. And life goes on, and all in all, it is pretty good. I have the respect of lots of people, good friends, great family, incredible daughter, great son, etc. But here, on this blog, you just see the pot holes. So this thing happened, and trust me, it was devastating, and I decided not to blog about it. Sort of like, heck, I wouldn’t believe it either. Wheelchair, guardianship, then this … no way.
Now that it is solved, I think, I’ll share. So, like I said …
Hey mom, everything’s fine … now.
Emma has a new post where she mentions articles about possible future cures for such things as Down’s and Angelman’s. We can hope and pray.
If someone came up to me with a magic potion and said it would “cure” Pearlsky, I don’t know what I would do. Really. It’s been seventeen years of her, who she is, what she has. Do I want her all of the sudden to be normal typical? No seizures … GREAT. Communication … FANTASTIC. Full communication … ummm … scary? What would she say about the last seventeen years?
How would I not give it to her? If she had cancer, I’d give her the cure if it was offered. But that would not change the basic “her.” Would Pearlsky be Pearlsky if all of the sudden she did not have the metabolic issue and somehow became a normal seventeen year old?
Why does even the thought scare the daylights out of me? Obviously a moot point since the chances are, well, slim at best. It has the feel of having given up a child at birth and then seventeen years later she is at your door.
So, would I give it to her? Yeah, I guess so, but damn, I would hesitate. Then again, I’d love to hear that doorbell …
On October 26, 2009, In Diagnosis
(I hope you read part 1 of “diagnosis” here.)
When Pearlsky was born her apgar score was 9, so much for standardized testing. She was in the NICU within hours for a temperature regulation issue, but that resolved quickly. Then the CAT scan, genetics, neurology, CSF (spinal tap), etc. As mentioned, a week in the NICU (after being told she would never leave) and a funny incident with genetics, and then freedom, which brought its own pain.
At eight months, seizures. We also noticed that she had very little peripheral nerve function. She was not ticklish and had a very high threshold of pain (she did not flinch at injections, etc.). All sorts of tests were done at two of the best hospitals. Our neurologist was world-renown for microcephaly and things of this nature.
Nothing. “Good luck” they would say, and treat the symptoms. We decided to try for number two, give her a sibling, what the heck. Upon announcing our second pregnancy (ok, she was pregnant, but I helped) my dear friend Ray Weiss faxed to me a simple handwritten note …
Courage has its own rewards.
Then my son was born. Within weeks we knew that lightning struck again. By one years old, he had a G-tube and seizures. He also had high muscle tone, his toes especially were always curled. It was tough, doctors, specialists, … nada.
click here to continue reading …
On October 17, 2009, In Diagnosis
The whole concept of “diagnosis” has been on my mind a lot lately. Bet you didn’t even think of it as a “concept” but I do. I will explain, and probably ramble. Most of the links offered will be to respectable references, no need to look, actually.
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