Mar 16, 2013

Spring Break

We got out of the hospital.  It was a quick thing.  Our usual protocol with a fever is that we get blood cultures once we’re admitted and then we can go home when we have two negative cultures.  They come in every 24 hours.  So basically 48 hours later (if fever free) we can go home.  But our “usual” doctor wasn’t there and the other one let us go.  BEFORE we even got one negative culture. 

Why is this a big deal?  Because remember back to December 2011 and Manny barely survived?  It was a line infection.  Only symptom was a fever.  If his broviac gets an infection, it goes straight to the bloodstream (called sepsis) and it’s very dangerous. 

If I was scared of him actually having a line infection, I would have insisted we stay until we met protocol.  But I knew he likely had something viral.  Why? Because I had a sick kid at home with similar symptoms.  And while we were at the hospital, 2 more kids got sick.  So this wasn’t a line infection, this was contagious.  (Yes, that’s good news for us!) 

So we got home.  Now this was the start of Spring Break.  And I had 4 sick kids.  Not exactly the start I was hoping for.  But at least we were out of the hospital!

Over our week of spring break, we went bowling.  Yes, even Manny.  It was his second time of bowling.  The first time  was last year and I sat him on the ground and helped him roll the ball.  He did that a few frames.  But this time, we left him in his wheelchair and got him the ramp.  We helped get the ball up there and he would roll it.  He loved it and played every frame!  He even picked up a couple of spares.  :)

We went to Busch Gardens.  He especially loves the train and the baby train.  For the train, he rides on the back in his wheelchair.  We ride it basically every time we go.  He has a fancy kidkart which is a wheelchair but still looks a bit like a stroller.  Dan and the other kids were riding rides and Manny and I went to get on the train.  I walk up to the Handicap access area and stand.  The conductor tells me that I have to disassemble my stroller.  I tell him it’s a wheelchair.  He starts to argue with me.  I stay calm.  I tell him that I ride on the train all the time.  He says, “How do you ride on the train?”  Me: “In the handicapped section.”  Him: “You can’t put a stroller in the handicap section.”  Me: “I understand.  This is a wheelchair.  It’s a cool looking one, but it’s a wheelchair.”  It was ridiculous.  Eventually he lets me in, unconvinced that it’s a wheelchair. 

When we got in the back section, I was amused that the two people in the section were people who could walk, they just rented the wheelchairs for the day from Busch Gardens due to fatiguing easily.  And they were let in with no questions asked!  But Manny?  A permanently disabled child who can’t use his legs or arms, a child who eats only via IV can’t get in the handicapped section?  LOL

Now I realize that the reason this happens is due to people who take advantage of the system.  I’m sure people try to sneak strollers on all the time.  They try to bend the rules.  Try to get away with stuff.  But how about the people with legitimate needs?  Seriously?  Ugh ugh Ugh. 

We did our nice train ride and then met up with the family.  We then went to the section where there is the baby train.  On this he has to get out and ride without a chair.  He can sit fine in the train but JUST IN CASE he were to lose head control (he does that sometimes), we have one of our kids ride with him.  Zoe is now the only one short enough to ride with him.  He was hooked up to his TPN at the time.  Dan walked him to the train and put him in.  The ride operator, Chris, came over and was so kind and understanding.  He told me that he was going to have to check the seatbelt and is there anything he needed to know before he did that?  He was treating my kid like a human being!  He recognized there was a disability and was trying to find what accommodations he would need. 

I cried!  I actually went over and told him about how amazing it was what he did.  I told him that just a few minutes earlier we had just had the opposite experience and that I just needed him to know how much it meant to me.  I’ve written a letter to Busch Gardens about him. 

During Spring Break, we also went to a few places that are selling Shamrocks for the MDA.  Popeyes chicken and Lowes specifically.  We took pictures and told the staff how we appreciated what they are doing for families in the Tampa Bay area.  This is the thing we saw when we went into our local Lowe's.  Yes, that sign was for our Manny.  hadMDA had sent out some flyers to the Lowe's in the Tampa area as motivation as to why they are doing what they are doing.  One of those was about Manny.  The night before we arrived they had made this sign.  They didn't know we lived locally nor that we would be popping in.  And coordinator?  She hugged me and said that she has been praying for our family daily.  ... how incredibly humbling!  No words. 

We went to a fun park.  Manny’s favorite part there was this pretend kitchen.  He kept making me food.  I think I had 100 servings of pretend ice cream. 

And we went to a fundraiser for the MDA.  Every year, the firefighters of Pinellas Park put on a HUGE event called “Chili Blaze”.  It’s a bike show, chili cookoff, concert, etc.  About 10,000 people show up they say.  Fireworks at the end.  What a fun night! 

Manny tuckered out. 

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