Assorted updates

I sometimes link to articles that have to do with our “community” or some awful dumb legal thing, or whatever. Well, here is a link to a cute / fun blog post that is complementary to my last one, iPearlsky, where I talk about what defines me.

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I mentioned that David had a major seizure at his residential facility. I have learned more, and I will share.

He was in his classroom. The school is connected to his residence by a 75 yard (75 meter) covered walkway, and his residence is staffed by nurses. The school has a nurse, a school nurse (yeah, I know). I am told by David’s mother that David’s seizure started in the classroom, and the aides noticed it was “major.” The teacher, for reasons I do not know, was not in the room. The next thing I know happened was that an aide took David to his residence at, what I am told, was a rather high rate of speed. There was no intervention by the school nurse, just down the hall.

Here is the email David’s mother wrote to the doctor responsible for the residence.

I have some concerns over the way the seizure was handled at school.

Was it necessary to transport David all the way back to the residence to give him diastat?

I am wondering why the school nurse couldn’t administer it in the case of a long seizure. It seemed as if the seizure went on much longer that his seizure protocol allows for before giving diastat.

Some time was lost in running him up to the residence.

It seems like it would be a good idea to have the school nurse be called first if this happens again.

I had a tough day yesterday, and decided to write to David’s Student Services Coordinator. Two simple sentences.

The doctor responded with:

We have concerns about the same issue and are taking some steps to improve the response to such an event.

The Coordinator has yet to respond to me. I guess I don’t blame him.

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In this recent post, I wrote:

I do a lot for people and have found that few return the favor. That is fine, just a fact. Let’s face it, how many people would really be there for you?

Unfortunately, I either wrote that poorly or it has been mis-read. Let me explain …

I was trying to say, that when push comes to shove, who would be there for you? I am not talking about little things … I have sent some people some of my and Pearlsky’s awesome coffee, and all I think I would get is a “thank you” email, which universally I do. That is 100% dead on. Once I got a toy fat man and little boy, in return, which qualify for the most unique thank you. People are great with the easy things.

When my back went out and I was bedridden for weeks, one friend decided to “give me space to heal” and I did not hear from her for weeks. WTF? Another friend, when I started to be barely mobile, took me grocery shopping and pretended not to be mortified when I used that cool shopping cart with the battery operated scooter seat that you can drive around in. He was there for me. Everyday, each and every one, I knew I would hear the voice of a goddess during the day. That gave me something to look forward to, knowing she would be there to distract me, a voice to count on. The help, the “being there” did not have to be physical. She was there for me in more ways that I can say.

But the list is not all that much longer. Yes, the nannies came to the rescue with Pearlsky. But all in all, more were not there for me than were. That is life and I understand such. I don’t have a problem with it either, the post was about the wonderful surprise that a particular person did come through.

Let’s say you need a thousand dollar loan. You call someone, and let’s say they can do it, but it would be tough. They can say three things to you (for sake of this discussion) …

1. No, sorry, I can’t help you.
2. What do you need it for?
3. Sure, cash or check?

I have answered all three at different times. I think 2 is rude (an entirely different conversation concerning my views on telling others your reasons for something).

My point is, how many people around you fall into number 3? How many will answer an email that says “I need your help” with “when and where?”

I love my bombs … and that voice got me through the worst of my pain.

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Remember that Pearlsky and David are two of three known cases in the US, and maybe a dozen or so in the world, with the amino acid deficiency they have. I have a web site about it, started at the beginning when Pearlsky was just diagnosed and there was nothing in the medical literature.

This email came in yesterday:

Dear Sir,

We are the parents of a boy aged about two years, which is suspected of the same amino acid deficiency ( the genetic studies are not completed yet). We live in Romania and in our country there is no possibility to detect and treat these diseases so with great efforts we traveled to several countries in Europe, hoping that we can help our son. The doctor who finally helped us is T. K. who was a very kind person.

We were wondering if any other treatment is available outside the administration of the amino acid, in order to improve our son condition which is not very great. We want to do everything what is humanly possible to help our son but is very difficult for us to struggle with such a rare disease, since we have no support from nowhere and we are living in the poorest country in Europe.

Wow. “Sir” Cool.   😉