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Why did I clean off my Desk?

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Thursday, June 2, 2011

Why did I clean off my Desk?

Today I cleaned my desk.  As I was cleaning it, I mentioned to a coworker,  "you know... every time I clean my desk off - Alexander has a seizure and we end up in Hershey."  Anyone want to guess where we are? Anyone?
Tonight was a big one.  It was like Alexander just wanted to remind me why we spent so many hours working on the Auction site.  It was as if he was saying, "Thanks Mom! I know you have been really stressed over this... Remember why you are doing it. Remember it will all be worth it."

He is such a smart kid.  I do remember why we are doing it! For those of you who weren't following the play-by-play on Facebook, Alexander seized for a little over 4 hours tonight.  He spiked a fever around 7pm and even though the fever broke with a dose of Tylenol, his body had already slipped into seizure mode.  He seized on and off for about an hour until we tried to take care of it at home, called the EMT's, rode the helicopter (I got to ride today), and checked in at the hospital.
ps. To my neighbors who all came out with their camera - they really need to read this post. FYI.

Anyway... Once at the hospital- it was scary for awhile.  Alexander seized for over an hour. Which STUNK. But... we were at our med max.  He's had about 6 mg of Valium and the Phosphenitoine (sp)... Let's just say that's like giving a mouse the dose needed for an elephant. He's now comfortably sleeping... or just completely passed out - which ever you prefer.

Here's a list of things that happen to you when you have a "medically fragile child"
1. The EMT's know you. Call you by name. Remember Alexander. And talk to you like you are competent. ~ cause you are.
2.  You ask questions like, "are we getting Life Lion or Medline? Because the people at Medline are more likely to let me ride... I would really like them."
3.  You say, "I gotta go put on real shoes if I've got any chance of riding - because I know they won't let me ride in flip flops." ... because you know they won't.
4.  You totally impress the helicpter guy by putting all the used crap in the sharps container and giving Alexander his meds / etc.
5.  You silently curse yourself for eating that Snicker's Ice cream bar today because you know the helicopter guy is going to ask you how much you weigh.
6.  When you check in to your hospital... doctors, nurses, and receptionists recognize you.

Alexander earlier this week.

What this translates to:  I'm going to continue to be the person who knows Alexander inside and out.  I have to be his advocate and thank God everyday for the ability to help my son.  What a blessing is it that the medical professionals not only recognize us, but treat us as competent people.  They don't talk to us with pity in their voices, but with real questions because they know we will give them real answers.  They make exceptions for us and they really care for Alexander because they know we love him with all our heart.  And how about the nurse that stopped by after her shift was over because she recognized our name on the board.  I could be upset that... we are here so often they know us. or I chose to thank God that we have been blessed with such caring nurses.  She was probably in our room for 20 minutes - of her own time. She didn't have to do that, but it is really nice to see a caring face in the ER.

I only cried one time tonight.  When I logged onto Facebook after writing a quick post asking for prayers and saw all the people who posted back.... with love.  Then my heart overflowed.

2 Comments:

At June 2, 2011 at 9:15 AM , Blogger Hilary said...

Thinking of you and sending you and your family love!!!

 
At June 2, 2011 at 9:32 PM , Blogger Eric, Erin, Elsie and Emmy said...

Prayers! Alexander is amazing!

 

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