More MDA Fun

It's not every day that your kid is highlighted in the media... but it IS getting more frequent. 

Saturday, Feb 20, Zoe (our 8 year old) just happened to pick up a local newspaper.

She looked at the front and it said, "New MDA Ambassador.  P. 10"

So she flipped to page 10.  And this is what she found.

 

This is the link to the online version of the article so you can see the content.

http://www.ospreyobserver.com/2014/02/new-mda-florida-goodwill-ambassador-named/

Last week, we also stopped at one of our local Lowes Stores here in Brandon.  They are one of the biggest supporters of the MDA.  They collects millions of dollars that go to help with clinic visits, equipment, summer camp and so forth. 

Plus they physically go to the Summer camp and help make floats for the kids for a parade.  (Last Year, that day was on Manny's 4th birthday so they turned his wheelchair into a Cake with 4 candles!) 

Many local Lowes employees also came out to our Muscle Walk to help support what we are doing. 

Just a few with Manny in front of the Buccaneer boat. 

One of their biggest fundraisers is in the month of March selling Shamrocks.  So go out to your local Lowes.  Support them and support the MDA.  And buy at least one $1 shamrock.  Every dollar counts and together they really add up. 

Here's a link to Last year's store visits.  https://www.facebook.com/beth.gore/media_set?set=a.10151356054326958.1073741825.697891957&type=3 

And a couple from this year.  We will be doing more store visits as well. 

This is my kids holding the shamrocks we bought and Erica.  She's the store Captain for the Shamrocks. 

And some of the top sellers of the Shamrocks.  Keep up the great work! 

As always, we are honored to represent the MDA. 

How Can You Help??

As you know, I’ve recently accepted a position on the Board of Directors for the AVA Foundation (AVAF).  (www.ava-foundation.net)

About the Foundation:  The AVA Foundation is dedicated to saving lives through risk-free vascular access. We promote evidence-based clinical practice. We serve clinicians interested in vascular access, students of the healthcare professions, and vascular access patients and their families.

Their three main areas of focus are:

1. Research (Providing funds for primary research which will provide the data for the necessary evidence for vascular access care.)
2. Education (Providing educational funds to healthcare providers so that they may provide vascular access care at the highest level. Providing funding for educational projects that promote quality vascular access care to patients.)
3. Community Outreach (Supporting community initiatives focused on improving patient outcomes. Promoting risk free vascular access at every inpatient and outpatient facility. Funding projects that will improve vascular access use and care.)

• Did you know that nursing schools are not required to teach ANYTHING about Vascular Access?  And most do not even spend ONE hour on this?  They expect it to be taught On the Job.  The Foundation is working towards some lofty goals including getting Vascular Access curriculum in nursing schools. 

• Did you know that medical teaching uses the model, “See one, do one, teach one”?  The Foundation is working towards specific guidelines that need to be included rather than a hit or miss approach.  The question is … “what does a nurse need to know in regards to Vascular Access?”

• Did you know that 50-60% of a hospital floor nurse’s day is spent on something related to vascular access?  And they get NO formal training/education in most facilities?

• Did you know that there are safety governing bodies who routinely assess the safety issues of a hospital and not one thing is on that list for Vascular Access?  

• Did you know that an IV is the most frequently used invasive device in the hospital.  Up to 70% of patients require an IV during a hospital stay. And current studies show there are bloodstream infections for 0.2-0.7/1000 IV device days.  (Central line infection rates are even higher.)

And NO ONE is talking about this stuff. 

 

I’ve been tasked with promoting the Foundation within the Community.  So I need your help. 

First, an overview from my perspective.  Vascular Access is not currently recognized as a specialty in many hospitals.  An IV, for example, is considered under the “Consent to Treat”.  It’s so routine that not much thought is put into it often.  And in most cases, no harm is done.  But that is not always the case. General belief is that the risk is minimal or non-existent but the body of research is growing to dispel this myth. 

Did you know that approximately 200,000 people got infections from Vascular Devices last year?  Did you know 50,000 died?  That rivals breast cancer but no football players are wearing pink. 

Our first challenge for vascular access is … no one even KNOWS there is a problem.  It’s a “dirty little secret”.  And I’m determined to change that.  And the AVA Foundation is a well-kept secret as a resource for information.  (I’m trying to change that.)

My personal goal is to start educating the public about the potential dangers of vascular devices and how we can mitigate those dangers.  It’s not to create public outrage, but instead to arm the public with information so they can best protect themselves. 

One such example is that we are creating an IV Action Plan or things you should know when you or a loved one requires an IV.  It’s basic information that you should be aware of to help reduce the risk of infection.  (There will also be action plans for those who need a central line as well as one for those who need to go home with a central line.)

The general population certainly needs to have this information.  But the people that needs it first are those that are frequently in the hospital with illness or surgeries.  We really need to reach this population quickly and efficiently. 

Some specific ways you can help:

1. Manny and I were highlighted in a donation video sharing the need for more emphasis on vascular access … Please watch and share this link with your friends.  http://www.youtube.com/watch?v=wiEn2crUNX4
2. Do you know of people or corporations who would like to donate to the Foundation and their cause?  Funding is the key element to completing all our tasks.  We are fairly new so not many people have heard of us. 
3. Are you a clinician or know a clinician?  We need them “plugged in”.  For example, the AVA Foundation has a Facebook page.  It’s new and we hope to make it a place for clinicians to connect, ask questions of each other, share best practices, get ideas, etc.
4. Do you have a research question you’d like answered? Or would you like to do an evidence-based research project?  
5. Do you know of someone who is related to this world who would like to be on our Board of Directors?  We especially need people who have a vision for vascular access, have connections to corporations with funding and/or have fundraising experience.
6. Do you know of a person with Fundraising experience who would like to help out a worthy cause? 
7. Do you have connections to people in media who might like to feature a story on the topic?
8. Do you have personal stories (good, bad or ugly) about Vascular Access?  We would like to collect these stories (with or without identifiable data). 
9. Do you know a celebrity who was affected by the world of Vascular Access who might be willing to be our spokesperson?
10. Other?  There has never really been a Community Outreach Liaison before so the job is wide open!  Pretty much if you can think of ways you can help, we need it. 

 

Finally … why do I do this?  Because in the almost 4 years we have had Manny, we have had countless encounters with the world of vascular access.  Some great (life saving in fact) and some horrible (life threatening).  And the difference?  Education and training. 

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.