Archive for September, 2012

Almost Drug Free

At work today, I finally got the call.  Blood work says all CD19’s are wiped out!  Wesley doesn’t have to get anymore infusions until he relapses.  That should be atleast 6-8 months.  We will be finished with the evil steroids on October 6th and hopefully we will have a drug free winter!  This will be his first good break from the steroids Since April 2011.  PLEASE stay FAR away from us if you are sick!

Wesley got to go to Cumberland Falls today with Brad, Annie, Papa John and two lovely friends from England.  While I was at work, it was hard not to worry about Wesley’s well being.  I am so crazy.  I was worried because: 1. He was traveling.  2. He was traveling far from me.  3. GERMS  4. Cliffs, rocks, water and other natural dangers.  5. Mosquitos/West Nile.  And thanks to my informative co-workers 6. Bubonic Plague and Hantavirus.  I called Brad twice to remind him to apply the all natural bug spray thick.

Hopefully, he did not contract any of those things.  Otherwise, he had an awesome day.  He hasn’t been there since he was very small.  Too small to remember it.  Last night, he drew a picture of what he thought the waterfall would look like.  When he got home, he told me it was different than the picture he drew.  He told me about all the rocks and water and stairs.  He also got to see five raccoons.  Not to mention the fun times with family and friends.  (And he found his long lost Ice Age DVD in Annie’s van.)

So much easier now not to complain about that $1.50 parking fee today.  My boy is done with the needles for a while.  He will be off steroids in less than a month.  The weather is about to get cooler which means more outside time for us.  For these things, I am so thankful.

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Penny Is Not Patient

Wes had to get his blood work yesterday so that we know if he needs to continue with more infusions or not.  We should have results by tomorrow or Friday.  We had to drive all the way to Lexington to have it done.  I suppose it can’t be done locally because of the specifics involved.

It should have only taken about 15 minutes.  I went down the hall to get the orders from his doctor, then back down the hall to the lab.  The lab was packed as usual, filled with all sorts and ages of people who I am sure have plenty of germs to share.

Normally, the lab manager takes us back right away and gets us out fast because of Wesley’s compromised immune system.  She wasn’t there yesterday, and neither were all the rest of the phlebotomists but two!  I made it clear when I came in that my son is not even allowed to be in public and we needed to be put in a room by ourselves and he should be top priority.  They put us in our own room, which didn’t really stop my worry a whole lot, but made it a little more bearable.

Forty-five minutes passed and we were still in there.  I went out and reminded the chick behind the counter how serious it was to get us out.  She was not compassionate at all.  Urgh!  I went back into our room and waited some more.

It must sound strange to some people who don’t have to worry about germs.  Most don’t have to worry.  Well, I do.  My kid could get an infection and get very sick.  He could end up being hospitalized or even die. His immune system can’t fight stuff off like a normal person’s.  So there we sat, playing games on the phone and doing everything possible to keep his hands off anything in that room.

Forty-five minutes passed again.  I was livid.  I knew that if I went back out there to the front desk that I would loose it and just make them mad.  So, I called his nephrologist office.  I told the receptionist the situation and it wasn’t five minutes later they came in, took his blood and we left.

We have to pay to park in the parking garage that belongs to the clinic.  I think we have given them enough money in the past year and a half to do a remodel!  It may sound cheap to complain about such a small thing, but I drove all the way to Lexington just to have blood drawn and the procedure should have been super fast.  It wasn’t my fault that they were short on staff.  So instead of paying for under an hour, which is only 75 cents, I had to pay for 2 hours, which was $1.50.  The poor lady at the little garage stand got her dollar fifty plus a mouth full from me.  She then proceeded to tell me to call administration and complain to them.  Yes, I know it wasn’t her fault that I was out an extra 75 cents, she just works there.  I am sure she gets that all the time, which is why she was so nice and respectful to such a wacko crazy person like me.

After all that exposure to every germ imaginable, it didn’t seem like a big deal to slap a mask on the boy and run into Clothes Mentor to try and sell my old maternity clothes.  I know that it takes a while and you have to wait until they get to your clothes, so I told the girl I could wait in the car until they got to mine.  I asked how long, she said 20 minutes.

Me and Wes went to the car to spend our 20 minutes.  He ate his chicken by standing through the sunroof and using the roof as his table.  Yes, I allowed that.  No, I don’t know why.  We did a few more things to pass the time, then went back in.

There were several girls behind the counter pretending to be working.  The one who initially took my clothing saw me come in and said that my basket was all ready and I could go the the register to cash out.  Those words lead me to believe that I was going to sell some clothes.

I proceeded to stand in line behind several people at the one cash register that was in use.  We waited and waited, and once again, I was doubting that we should even be in there.  Wes had his mask on and it wasn’t that packed, and besides, I was about to get some money, right?

When finally I was next, I was informed that my clothes were not up to their standards.  I argued and said they looked perfectly fine to me, which of course did no good.  Man, my day wasn’t going well.  I have never seen so many stuck up people selling used clothes at once.  Why didn’t that lazy girl who went through my clothes just hand them back to me instead of making me stand in line and wait to get nothing? 

It got a little better.  My granny came with us and we had dropped her off at the mall so she could get her shopping fix while we did our thing.  We went to pick her up and she let me run in real fast so I could make a quick shopping trip that I never get to do.

I found an awesome pair of shoes and with my coupon, they were only $9.40!  I just hope I can walk in them.

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Then I ran down to Gymboree and got the boy some much needed underwear.  These steroids are giving him an unrelenting appetite which is causing him to grow up a storm.

So, that was my day in a nutshell.

This weekend, I am having a yard sale at my Granny’s house.  I hope I can sell my unworthy maternity clothes there.  I have gone through Wesley’s closet and there is nothing left that is too small!  Feels so good to get it out of the house.  Now to sell it!

Wesley is going to have a lemonade stand.  He will probably make more money than me.  Oh, well.  Come by and see us if you are around!