Happiest Place on Earth

A long time ago, I went to college with a girl named Riccinni.  She and I were in the Young Ambassadors (a singing/dancing group).  We hadn't seen each other since.  (Let's just say ... more than 20 years.)  But with the advent of Facebook, we have reconnected.  I feel like I know her.  I get to see her life and her marathons and her kids growing up.  Anyway, her husband Lesz works for Disney. 


They contacted me the other day to see if we wanted to go to Disney World?  Well, what she didn't know is ... 3 days earlier Manny had been begging me to go to Disney.  I told him to pray about it ... and he did. 

Jacob (age 15) has been twice ... once at age 1 1/2 and once at about 4).  Kaley (age 14) was there at 8 months.  The rest of the kids - Sam 12, Luke 10, Zoe 8 and Manny 4 - have never been.  Sad considering we only live an hour or so away. 


Well, Sunday February 9th was the date. I told none of the kids where we were going, just "Somewhere special."  As we drove to the exit, it says "Disney World" and everyone but Manny figured out what was going on. 


He figured it out once we hit THIS sign. 





At that point, his eyes just widened. 



This is Manny on the monorail headed from the parking lot.  (Sam in the background just has on his "tweenager" face ... he says he was having a great time.)


For a short time, the monorail stopped.  And we looked over and saw this train.  I know it's almost impossible to see but it's some of the characters. Specifically ... Tiana, Chip and Dale, Stitch and Mary Poppins.  Manny went NUTS because he ADORES Chip and Dale!  He started then asking to see them.  I figured this would be the closest we would be all day. 



And as we moved on, we saw the first car of the train ... It had a few of the characters from Snow White and Mickey Mouse.  (For the record, it was the only time we saw him all day.)



Just as we hit the front entrance, there was Minnie Mouse.  The line was too long to stay and see her but we were very close and it was good enough for Manny. 



Riccinni took our family photo in front of Cinderella's castle.  (The sun was a bit bright so ignore some of the "sour" looking faces. Ha!)





And of course, had to take a picture with Riccinni.  (I will not post a picture from 20 plus years ago ... let's just say we look the same and leave it at that!)  We were smiling because I am quite tall.  She is, uh ... not.  So I was bending way down.  She was standing on her tip toes. 


 


Next we were off to the Jungle Cruise.  I remember riding it as a child.  (Disney opened the summer I turned 3 and we were there that Fall.  I still have a Winnie the Pooh from that trip.)  He was THRILLED that he could stay in the safety of his wheelchair.  When he's in his wheelchair, he feels safest.  He can see better.  He can sit better.  We can take him out, of course, but he has a hard time sitting well or even holding his head up.  It's awkward trying to hold him in a way that he can see.  Plus he's hooked up to his TPN bag all the time ... all in all, a very difficult task. 


But in the middle of his wheelchair, he is king.  And he got to ride that way. 





I'm not really good at taking pictures DURING rides because I'm too caught up in the moment of enjoying it and helping the kids experience it.  So this picture is of when the others were still loading onto our boat.  Daddy held his hand the whole way. 


They dragged Zoe into dancing several dances right in front of the Country Bear Jamboree. 

Something not quite right about that bear.  Ha

This was the Hokey Pokey and she was turning her self right about. 


Next we found Woody and Jessie! The only thing he wanted to know was "Where is Buzz?" But he is is in a different part of the park and we never saw him.  They were really sweet with him.  Only the girls wanted to be in the picture. 



And then it happened!  We couldn't believe it.  Right in front of our very eyes ... CHIP AND DALE



All morning since seeing them on the train, he said he wanted to find them and feed them a nut.  Well, we didn't happen to plan ahead.  So as we stood in line, Kaley was looking through the grass for something akin to a nut.  He was satisfied that a bright red leaf would be close enough.  That's what's in his left hand. 

And here is Dale's reaction to when we told him about the gift. 


This is Dale handing the prized leaf to Chip and his reaction.  Saying he "Loved it"




And again, only the girls wanted to pose.  The boys were helping take pictures.  I was amazed at how friendly all the characters were.  They had such patience and just knew how to make a kid feel special.  Like Dale is holding Manny's hand.  So sweet. 


Anyone recognize this clock? 

It opened right as we were standing there waiting for the accessibility boat.  Again, Manny got to stay in his wheelchair.  It was totally unexpected that he could do that on so many rides.  Again, we could have held him in our laps but it's much more difficult on all of us to do it that way. 


I only remembered to catch one (blurry) picture of him on here.  His eyes were darting everywhere.  He was commenting on things he saw.  So sweet. 

On the exit, we just happened to see the Chinese "Good bye" sign. It's right in the middle but tiny so you'll just have to believe me.  It says, "Zai Jian"



While the kids rode space mountain, we got to meet Stitch.  It was funny because we were next in line when they said Stitch had to run for just a second and he'd be back in 2-3 minutes.  It was more like 15 and he was quite a bit shorter when he came back.  Ha. 

Again, it's cool how the characters get right in there with the kids.  I've discovered that most people feel very awkward around wheelchairs but they didn't.  See, one of his hands is holding Manny's hand and the other is on his wheelchair handle. 


The kids said Space Mountain was the best ride of the day.  They loved it. 


I found a cool spot to sit while they were still in line and he wanted to play cars.  I cracked up as he did this:



And then we discovered he was able to ride the speedway racers.  He was thrilled.  I did have to transfer him but that's OK.  This picture makes me look worried but really it was just a matter of sun in eyes, trying to push the gas pedal with my left foot, hold Manny with my left arm and steer with my right knee and hold the camera for a selfie with my right hand.  I discovered I'm not that talented! Ha

Then we found Goofy.  Manny happened to have a small Goofy with him and he was holding him.  Goofy's reaction to me showing him. "It's MEEE?" 

And again, as you can see the theme ... girls only in the picture.  I love Manny's reaction as he wouldn't stop looking at Goofy!



Finally we got to hug Donald Duck. 

I was amazed at how many grown ups were in line (sans kids) to hug Donald!




Before we knew it, the day was over.  Our feet were tired.  Our tummies hungry for non-park food.  But before we left, Manny had one more request ... to ride the train.  We didn't know how feasible it was but said we could at least try.  So off we walked towards the train station.  As we approached, we heard the train arrive.  We knew that we would either JUST make it or barely miss it. 

But in true Manny favor from God form, we got there, just in time to get right on to the train.  Dan sat with Manny in the wheelchair row.  And the row right behind was completely open.  Manny was giddy.  We didn't get any pictures of this as both of our phones had died by then by taking so many pictures and videos of the day.  But just picture his big satisfied grin.  By this time, the sun had set and the neon lights were aglow through the park.  We loved seeing the transformation. 

We had considered staying for the firework display but then remembered his HORRIBLE reaction to the New Year's one in our neighborhood.  (Complete meltdown).  So we ventured home. 

As I write this last piece, it's been over a week.  Manny DAILY asks when we can go back.  He's convinced we can just go any day we want. 

Thanks again, Riccinni and Lesz!  Memories made. 

Strongest Person I Know

Remember when a few weeks ago I announced that Manny was just named Florida's MDA Goodwill Ambassador?  (Blog link here if you missed that.)


Well, today was the official announcement.  He got to shake hands, take pictures (lots of pictures) and just hang out with nearly 1000 others at Raymond James Stadium (Where the Bucs play).


Our family all wore royal blue shirts and silly hats.  The theme was "Manny's Favorite Things".  In case you can't see what's on them:


Dan has vehicles from the movie Cars.  I have firetrucks.  Jacob has Angry Birds.  Kaley is wearing Kermit the Frog.  Sam is wearing Lego Guys.  Luke is wearing a crazy face.  Zoe is wearing a silly face.  And Manny is also sporting a Kermit cap.


This year's theme is "Hope, Strength, Cure".  There were 3 families chosen.  One to speak on each of those topics.  I was given, "Strength".  I talked about how Manny was the strongest person I know. 


So many people come together to make this happen each year.  There's no way to thank them all so I'll just say a group, "AMAZING JOB, everyone!" 


Enjoy some of the pictures from the day. 




Mr Ambassador.  This is a sash that says "MDA Goodwill Ambassador".  Made by Paula.




Paula also made him a red cape that says "Mighty Manny" that goes on his wheelchair.  :)







This is Paula.  She is the clinic coordinator and one of the nicest people I've ever met.  She is a doll and she loves her job and her people!












As we were on the stage, being announced as Mr. Ambassador with Paula









One of the most spirited awards always goes to the T-Birds and this is the mascot's head! LOL





The actual tbird





At the Buccaneer boat with some of our favorite Firefighters from Pinellas Park!



In front of the field.  It's torn up because they just had a monster rally or perhaps about to have it.  (I forget what they said.)











The announcement on the scroll.  Said "Welcome, Goodwill Ambassador, Manny Gore!"

I'm so proud to know you, Mr. Ambassador. 

You truly ARE one of the strongest people I know! 

Ode to a Central Line

Dear Central Line,  

                I have been long remiss to recount your virtues.  But upon this most significant milestone, I shall do just that. 

                February 7, 2012, you were placed into my precious son Manny.  There were many, many lines before you.  In fact, there were 8 lines from October 13-Feb 6. 

None of them could be counted on.  One of the lines tried to kill you. 

 

                So when you were placed, I have to admit, I had no clue that you and I would become friends.  I had no clue you were “the one”.  I figured you’d be like all the rest.  I prejudged you based on all the lines of the past.  And that was unfair to you.                   

We have had plenty of disagreements.   By June, only 4 short months in, you broke!  In fact, you broke only an inch from Manny’s skin.  They weren’t sure they would be able to repair it.  Standard philosophy is 1 ½-2 inches minimum.  Everyone thought we would need a whole new line.  I was disappointed in you.  How could you let me down like that?  And it was on Manny’s 3^rd birthday too!

But … you showed you were not like the others.  You were able to be repaired.  You stood up to our first test.  We were released from the hospital just in time to celebrate his birthday. 

It wasn’t long that you would begin to prove to me your worth.  And that you could stand up to the tough tests of life.  We were in and out of the hospital and you stayed infection free.  Weekly we would take blood through you.  Daily we would put nutrition into Manny.  Antibiotics. Other medicines.  You held up through it all.

You, however, are also a Dramatic Diva!  You love to be the center of attention.  Life will be going along smoothly and then you just like to stop working.  No reason.  Just attention seeking.  You also like to blow a gasket and break at the most inopportune times.  In fact, you’ve scared many a tough nurse … scared to use you. 

It’s not like I blame them though.  You have broken in the hands of FIVE nurses.  (So far, never in my hand interestingly enough.)  And of course you can’t break in any normal, peaceful kind of way.  You like to do it right as Manny’s blood sugar is about to crash. You break and blood spurts everywhere with every heart beat.  You break when there are nurses around that don’t know/don’t remember what to do if a line breaks.  There’s one nurse that sees you and asks if it’s an “Ethanol day” before she will even walk in your room! (Ethanol days are the days you like to give the most problems.)

And now, perhaps it’s because you’re in your advanced years, that you are starting to have a new problem of clotting.  The first time was in the car on the way to Nashville where I was going to be speaking about Central Line issues.  (Thanks for the extra fodder for the talk.)  But all you need is a little TLC (aka TPA) and then you’re good as new. 

You sure have made the last two years interesting.  Just last night, on the eve of your second birthday, you decided to pull a fast one on me.  I went to flush you so I could hook Manny up to his TPN and nothing.  Nada.  No movement at all.  Nothing in, nothing out.  I knew there was a blockage and that if I pushed you too hard, you would break under the pressure.  So together, we patiently stuck with each other, trusting each other.  Afterall, we have become good friends for the past two years.  And you didn’t let me down.  Together, we worked through the problem.  Together, we were able to accomplish our mutual goal … getting Manny the nutrition he needs. 

You’re doing well for an old lady.  One year is considered very good for the type of line you are.  And to be infection free and still in use at the two year mark? It’s beyond our wildest expectations.  Especially since we use you heavily every day.  Most days you are in use almost around the clock with heavy duty medicines. 

So thank you, dear broviac.  We know that some day your time will come.  We know that old age will eventually give way to a line that just can’t do it any more.  But until that time comes, thank you for all you do for Manny.  I’m thrilled you’re part of the family. 

That's "Mr. Ambassador" to you.

Look at what we just got in the mail.

That's right ... Manny is now the 2014 Florida GoodWill Ambassador for the MDA. 


What does this mean?
Well ... MDA is "Muscular Dystrophy Association".  They help people with Neuromuscular Disorders.  (You might want to read "Mighty Manny" if you're not sure what that means.)

For 2013, he was the honorary local Goodwill Ambassador and he was asked to represent the MDA at local events and such. 

Like last year, we had a walk at Raymond James Stadium.  When we were at the walk, I had never been so aware of my legs.  Someone asked why I walk and it hit me ... I walk because some people can't. 

Here's a picture of our team from last year's walk. 

Come join us on February 8, 2014 at Raymond James Stadium for this year's Muscle Walk.  You can walk along with Mr. Ambassador!

This is to raise funds and raise awareness. Did you know the funds raised in the local area stay in the local area? 

The funds raised from the walk are earmarked for various things like sending the local kids to the summer camp.  It's a week where kids can just be kids and they say, "it's the best week of their lives".  Manny isn't old enough to attend yet (age 6) but he has attended the sponsors/visitors day for the past two years.  It's a carnival like atmosphere and he just loves it.

Here's a picture from the 2013 camp.  Yes, I was very focused.  He couldn't stop laughing when they all fell down!

The visitor day happened to fall on his 4th birthday.  We couldn't think of a better way to celebrate his special day than with our friends.  When we drove up, he saw all the balloons and carnival booths and he thought the party was for him.  (No one had the heart to tell him otherwise.) 

Lowe's comes and supports the camp by helping the kids make floats for a parade.  They created a birthday cake float for Manny with 4 candles.  Have you ever seen a cuter cake?

Every year, Lowe's is also a huge supporter for the MDA.  They sell shamrocks in their local stores.  We visited our local Lowes and were shocked to find the word "MANNY" written in Shamrocks.  It seems they used him as an inspiration for the employees to remember to sell the shamrocks.  Click here to read more about the Lowe's Shamrock MDA Program

 

And remember how he got to go to a firestation this summer?  Well, firefighters and the MDA have a special relationship.  The IAFF (Firefighter's Association) is the MDA's biggest fundraiser.  They stand on street corners doing a boot drive collecting money.

 

Or locally, they put on a "Chili Blaze" where they have a huge blow out with vendors and bands and huge crowds.  All proceeds go to the MDA.  They collect tens of thousands of dollars each year.  So if you're local ... come out and see us on March 14.  Pinellas Park.

There was the fun night at the "Show of Strength" (Formerly the Telethon) premiere. 

 

We even were highlighted in the MDA Quest magazine. Quest Vol. 20, No. 1 (From January 1, 2013 - March 31, 2013).  An article was done about our family.  Imagine our surprise to find ourselves as the COVER.  You can go to this link to see more about the Quest magazine and links to their online issues. 

 

Here is a picture from the 2013 Holiday Party with Mr. and Mrs. Claus.   

Who knows what other cool events he will be asked to attend as the 2014 Florida GoodWill Ambassador. But he's always up for a fun day.  (And they usually ask me to say a few words since I don't mind speaking in public.)

But what has the MDA done for us personally?  The local team has helped us get wheelchairs and other equipment.  They have invited us to fun events and parties.  They have set us up with specialists, including some across the state when the ones locally ran out of ideas.  And they have become our friends. 

The MDA supports our whole family.  They recognize that while Manny is the only one in our family who has Muscular Dystrophy, our whole family is affected by it.  So they support the whole family. 

I'm thrilled and honored that Manny was selected to be the 2014 Florida GoodWill Ambassador.  We will do our best to represent the MDA well. 

 

Just for fun, I thought I'd show you a picture of Manny and Paula (with the MDA) on our very first walk in 2012.  He had just been diagnosed with Muscular Dystrophy and this was our first event.  We knew we were "home". 

Their slogan is "Make a Muscle, Make a Difference".  And we know Manny will continue to do just that.  He already has for so many.  Way to Go, Mighty Manny.  I mean, Mr. Ambassador. 

*Make sure to follow the links to learn more about these amazing organizations and events. 





Trifecta nightmare: Insurance, TPA and Line Ruptured.

Oh Manny … you certainly like to make life exciting don’t you? 

 

January 4 we get a call that our Medicaid for Manny is inactive.  That’s basically impossible since he has adoption Medicaid … it goes with him, regardless of money or income or anything else.  Pretty much no way to screw it up.  But it got screwed up.  And as I write this on January 16, it’s still not straightened out. 

 

So on Monday, Manny’s central line was flushing fluids in but wouldn’t give blood back. This is irrelevant unless it’s a Monday.  That’s the day a home health nurse comes and draws blood.  They determine the “recipe” for his TPN based on that.  Up on potassium, down on sodium or whatever. 

 

When there was no blood return, the nurse called the pharmacist and said as long as we get the blood by Wednesday we’d be good.  That gave me 2 days to get it working. 

 

I knew what he needed … TPA.  It’s a clot buster that goes in the line and eats the clot.  (They use it for stroke victims, for example.) But I can’t just go to the ER and get it done.  Or can I? I decided to wait it out.

 

Wednesday morning I woke up and tried one last time.  I knew if I didn’t get blood, I’d have to go to the ER.  But guess what?  I got blood.  I called his lab nurse and told her she’d have to come quick and get the blood. 

 

Pretty soon, she was at our house.  Sure enough, she was able to get 3 mls of blood (almost enough for the “waste”).  But then it just stopped.  We thought that if we flushed it, maybe it would start going again.  But as she flushed … ever so gently … the line ruptured. 

 

Then there’s the mad dash to get a hemostat on the line.  This prevents blood from getting out our air from getting in.  It also helps reduce the likelihood of infection getting in. 

 

Manny was a bit scared and he knew this meant a trip to the hospital.  He immediately started saying he didn’t want a “Pinch” (his word for an IV). 

The kids and I were still in Pjs so they rushed quickly getting dressed.  Sam called my mom to see if I could drop them off on the way over.  The nurse played with Manny while I got dressed and grabbed the necessary hospital supplies. 

 

We were having to rush because we knew he can only be off TPN for about 2 hours before his blood sugar starts to drop.  And his blood glucose was about 66 already while ON his TPN.  It took about 15 minutes to get ready and out the door.  Another 15 or so to get to Mom’s and drop off the kids.  Another 30 minutes to get to the hospital.  10 minutes to park, get him loaded in the wheelchair and walk to the ER.  So in other words, we were just about out of time. 

 

I also knew we had the potential insurance issue.  But I knew they HAD to take us as he would quickly become unstable and this would be life-threatening.  Now it was a true emergency.  Thankfully the hospital people sent us straight back.  The nurse had called ahead to let the IV team know we were on our way. 

 

In no time, Wendy and Allison were there ready for the repair.  It’s a quick procedure and we’ve had it done 4 times before this.  So it had become less and less scary to see it done.  The first time?  Oh, it just stopped my heart!  They take a pair of scissors and cut the line.  If the repair doesn’t work, we have no way to feed him.  But this time was no big deal and it was done. 

 

Once the repair is done, they test to see if fluids can go in and blood can come out.  They can’t really use the line for 4 hours (that’s how long it takes for the glue to dry) but they can test it. 

 

Nothing. 

 

At that moment, we knew that there were several possibilities.  One is that the line is just still blocked and would still need TPA.  That’s our favorite choice as it’s the only one that is “treatable”.  It also could have meant the line itself is no longer working.  Afterall, this line is almost 2 years old and is in use 20-24 hours a day.  They aren’t designed to last that long. 

 

We would only know after the 4 hours.  We would let it dry and then try again.  At this point, the IV nurse talked to the ER doctor.  We all hoped this plan of waiting 4 hours then TPA would work … but what if it didn’t?  So we concocted a plan for us to be admitted for “observation”.  If it works, we go home.  If not, we are already admitted.  The admitting doctor actually wrote up two sets of orders.  One for admitting and one for discharging. 

 

In the meantime, a peripheral IV had been started so he could get fluids and sugar.  For most kids, this is no big deal to start an IV.  But it’s not so easy for Manny.  His veins are unusual.  They are very scarred from overuse.  And he has had many, many bad attempts at IV sticks.  It’s been 2-4 hours commonly to get an IV in him.  That’s with constant people poking, prodding, attempting, looking, etc.  Sheer torture.  Not to mention that every attempt that doesn’t work is one less vein that can be used.  (I have to think about things like that when we are going to be admitted for long periods of time and his line isn’t working.) 

 

By comparison, an IV team nurse is almost 100% at getting an IV in on the first stick.  This reduces the time, the torture and saves his veins.  I can’t tell you how important this is.  This attempt?  From the time she started looking for a vein until it was ready for use was about 20 minutes. 

 

Then off we went to our usual floor.  He’s a celebrity up there.  And they love to see him when he’s healthy and being himself. 

 

We just hung out until 7pm when the line was dry enough to attempt.  Sure enough … completely occluded.  At this point it was time for TPA.  When you can get fluids in but not blood out, you can use a push method of delivering this medicine.  But when nothing is going in or out, you use a “stopcock” method.  It’s basically a vacuum method.  Many of the nurses haven’t seen this method.

 

In medicine, they have the “See one, do one” belief system of teaching.  And they all know me on that floor as someone who wants everyone trained.  So about 6 nurses came in to observe this.   Manny commented, “It’s a party!” and then said everyone should dance.  He made sure everyone did too.  And they did. 

 

Over the next two hours, they manipulate the medicine numerous times to try to get it up in there to eat at the clot.  By about 10pm, it was time to see if it had worked.  Nope.  So round two and a whole second set of nurses to come see the procedure.  This time he didn’t make them dance though.  But he still commented aobut it being a party. 

 

Finally, about midnight, we tested it and sure enough … we were able to get fluids in and blood out.  The line was perfect again. That was the sign that we could go home. 

 

And we did. 

 

It was just 13 hours from the time the line broke until we were home again.  All that because of the insurance glitch.

Now for the rest of the story …

 

This line break and ER visit were on Wednesday January 15.  Late on January 16^th, I got a call that the insurance was fixed.  In fact, they told me that around noon on January 15 the file was updated to say, “Application approved”.  (So when we landed at the hospital, that’s the message they saw.)  And then on Thursday, it was completely fixed.  And it said “Active”. 

 

The caseworker telling me this was astounded at the interesting timing.  JUST when we HAD to have it, it was there. 

 

I told her not to marvel … that’s just how we roll.  :)

 

God is good and faithful.