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Wednesday, November 9, 2011

For those of you who have been following… I wonder what you think.

IMG_0431 What do you think when you put snippets of our life together?  I’ve been wondering this … because – I use my home Facebook page to keep people updated on our life.  The blog is more of an outlet, so sometimes I forget to update it when we are home or doing things.  I try not to exploit … but yet sometimes to explain.

I’ve also been thinking about other things… to do with the blog – but more on that next week.  For now, I would like to really tell you about the last few days.  In sequence, not by these random snippets as my emotions brim until they spill over the edge and onto the page.

Alexander had a seizure. Hmmmm… how many posts have started this way?


Anyway… Have you ever had one of those “perfect” days?  In class, I was completely fulfilled.  It was a day where my students and I connected.  Where I could see them excited to learn … and they didn’t even realize how many cool things they were learning.  And AMAZING teaching day.

Then I came home and ran my THIRD run!  WooHoo!  I actually remember enjoying the run.  I daydreamed.  I mentally blogged about the ideas that floated around in my head.  Step. Work Harder. Step. Give More than we Take. Step. Love my Family. Step. Enjoy the Quiet. Step. Embrace the Noise. Step. Slow Down. Step. Baby Boy. Step. Respect my Husband. Step. Kiss my kids… and on and on.

With each pounding of the pavement I could feel the stress release from my shoulders as I pushed aside the needs of everyone else and enjoyed the desires of my heart.

IMG_0437When I finally made it back for dinner, it was to smiling kids as we planned for our evening’s adventures.  My Grandma turned 83 and we were headed to an impromptu cake and ice cream party.  The kids were so excited.  I was excited too because Ray said I should get some real shoes before I gave myself shin splints.  Seriously… the shoe situation was pretty bad.

I ran into the shoe store.  Quick and simple.  … Quick and simple.  It should have been quick and simple.  Honestly – it is when everyone has their guard down that things seem to go awry. 

I came out and I could tell something was wrong.  Ray had Alexander out of his car seat.  When I looked in I could see.  Questions on the twins face.  Fake smiles on Ray’s lips.  He said, “I think he’s having a seizure. But it doesn’t look right.”  He was right.  Instead of the normal seizure – this one was only on Alexander’s left side.  His right side was completely responsive and alert.  We weren’t able to do anything in a parking lot – so we administered relief Diastat and loaded up to try to get to the house as fast as possible.  I sat timing Alexander’s seizure while we rode.  I called the Neurologist and we discussed our options once we got home.  Alexander’s seizure did break for a few minutes – but a new problem immerged.  He didn’t seem to have use of his left side.  His arm hung limp and his leg was in an odd position.  Everyone was thinking the same thing… stroke.

What a horrible thing to happen to someone so small.  We are making such progress! A stroke would just place more obstacles… not take them away. 

The ambulance was en-route – as was the helicopter – to take some of us to Hershey.  When the helicopter arrived we were greeted by 2 people.  One…inspired THIS POST about his behavior.    It was the closest I’ve ever been to calling someone “out” on the internet.  I was so angry as I drove to Hershey… so worried.  About my baby.

A CAT scan showed no stroke occurred.  Blood work was drawn.  Because Alexander has small veins, an arterial stick was used.  Not only is it incredibly dangerous, but it is also incredibly painful.  Alexander screamed as they drew this blood. 


Finally, with his seizures seemingly broken, we were admitted for observation because this last one was so different.  I once again – I convinced the doctors to allow me to watch him all night in order for us to have a private room.  Facebook became my friend.  My blog became my outlet.  The minute I released my anger over that insensitive EMT… my heart was open for the prayers that were offered up. 

I then posted the 3am reflection.  The smile of peace on a night changed in the blink of an eye.  Because isn’t life just a series of turns?  That happen in the blink of an eye? 

This morning, life returned to normal.  We were given an increase in medicine and discharge orders. 

So now what?   What do you do when you return home?  Your emotions so raw from the night’s activities and lack of sleep…

I called the EMT service.  I filed a formal complaint.  I told the director that it was irresponsible for that EMT to leave with my child and not all his medical history.  For my child to be unaccompanied for almost 2 hours without medical instructions.  I told the director that it was immoral for that EMT to take my child without even a hug or kiss goodbye.  Nothing. 

As I made this call… there was another realization that sat in just as deep.  That EMT may once again be in charge of my son’s life.  Am I making a mistake? 

I must push those fears aside for what is RIGHT.  I must help us return to normal. 
Twins and I play outside.
I try on my running shoes.
I Love my children.  All of them. 

So…. last night, when I returned home – I made the choice to continue with our IPad competition.  And trust me… competition is fierce.   I wondered if it was too much … to ask for prayers and then ask for votes.  And, I decided that we would either: say we were returning to life as normal and then do it… or we wouldn’t. 

I choose to do it.  However…. we have been very blessed by your prayers – which were necessary – those are what are important.  Above all else – the value of those relationships.  I wrote about that HERE.  I am writing this here in case you were following on Facebook or somewhere else and wonder, “how do they just go back? and pick up life like nothing happened?"  Because we have to.

We are still competing for the IPad.  - If you feel like voting for Alexander… he’s at the bottom… the cowboy. If you want to vote for another kid – that is cool too:  All the kids would benefit. We are personal friends with the Little Engine that Could and Super Girl.  We are internet friends with all of them.  And… the prisoner has been locked up for 24 years.  VOTE HERE

If you feel like sharing the link – share away. 
Down’s Syndrome is 1:600.  Alexander’s Syndrome is 1:50,000.  Spreading a little awareness goes a long way.

And now… I can feel relief.  We’ve helped raise awareness for Alexander’s syndrome, thanked everyone for their prayers and support, and explained all those “snippets” of life through my blog outlet. 

Thanks Shell.  You always deliver. 

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At November 9, 2011 at 7:30 AM , Blogger Tara R. said...

What a scary experience, and add to it the jerk face EMT?

I will keep Andrew and your family in my thoughts.

At November 9, 2011 at 8:12 AM , Blogger Shell said...

How scary!

I'm glad that he is okay. xo

At November 9, 2011 at 8:29 AM , Blogger Eternal Lizdom said...

What a strong woman you have to be... I hope you are able to continue to find time for YOU. Running is a great outlet.

Sending up some prayers for your family.

At November 9, 2011 at 8:48 AM , Blogger Jackie said...

You were right, 100% to file that complaint re:the EMT. Perhaps your words will be what he needs to hear to make him a better and more compassionate health provider.
Hugs and I'm glad to hear things are back to "normal".

At November 9, 2011 at 10:14 AM , Anonymous Anonymous said...

Wow, very scary.
I'm glad it all turned out okay.
I voted for him, good luck!

At November 9, 2011 at 10:48 AM , Blogger Di said...

I would be terrified and SO Angry. Glad it wasn't a stroke and that he's okay!

At November 9, 2011 at 11:45 AM , Blogger Heather said...

I think it's great that you understand the importance of returning to life as normal. Especially if helicopters and EMTs are a part of your normal. You need to be able to transition back and forth from that, and it sounds like you do it as well as anyone possibly could.

And I thin the "fierce" competition for the iPad contest is awesome. It's moms (mostly moms, isn't it?) doing what moms are supposed to do... being their child's biggest cheerleader. Yes, it's weird to be competing against kids I have literally prayed for, but rooting for my son is part of my job as his mother. You don't need to be so nice as to say, "vote for any of the kids, that's cool." Shout it out, VOTE FOR ALEXANDER!!! He's MY kid and I LOVE him, and he deserves to FEEL THE LOVE!!!! GOOOOOO little COWBOY!!! And SHARE with your friends, neighbors, and coworkers!!!

All that being said, I would be happy to see any of them win, and the 24-year-old prisoner is pretty cool. His age makes him seem particularly deserving, in my mind, though I'm not sure I can articulate why...

Also, I like the perspective you put on the statistic at the end... comparing the frequency rate of Down Syndrome with WHS... I might share that on facebook. Would you mind?

Since this is YOUR blog, I'll give one more shout out for your son, and then go back to rooting Team Frankie all the way..

VOTE FOR COWBOY ALEXANDER!!! He needs this, he deserves this, and he would benefit greatly from this!!! SPREAD THE WORD!!

At November 9, 2011 at 2:57 PM , Blogger Singedwingangel said...

AS the wife to a firefighter I am close to many of our EMTs and can tell you that choice is NOT the normal.. Praying for you and your family..

At November 9, 2011 at 3:03 PM , Blogger Kristen said...

Singedwingangel - You bring up a Great point. We have had a lot of encounters with EMTs. They have all been wonderful. This encounter was completely out of the norm. We are very grateful for all the medical help me receive because the EMTs near us have saved Alexander's life on many occasions. Thanks for all the prayers and good wishes!

At November 9, 2011 at 3:12 PM , Blogger Kristen said...

Heather, you are so gracious. Thank you so much for shouting, "Go for Alexander!" on our blog. Frank is such a little cutie. And, I agree with you, there is something special about Justin who has been a prisoner for 24 years. Although, I must admit that the selfish part of me still wants Alexander to win.

At November 9, 2011 at 3:39 PM , Blogger Anastasia said...

You and your family are so amazing. I am sending you guys prayers and I voted!

At November 9, 2011 at 4:35 PM , Blogger Katrina said...

I have been a mom for the past 20 years (nine kids) and have only had to call an ambulance once, and the EMT's were awful. Awful! They were two young guys, couldn't have been more than 22 years old at the most. Our 4 year old daughter was unconscious after being hit in the head. She had no pulse and was not breathing. My husband was doing CPR on her. When the ambulance arrived, I RAN over to them, told them that my daughter was not breathing and she had no pulse....and watch, horrified, as the EMT's s l o w l y w a l k e d to the side of their vehicle and s l o w l y got their equipment and then just as s l o w l y start to walk over to my daughter. I mean, they could not have been moving any slower if they were 98 years old using a walker. I yelled at them, "WHY ARE YOU WALKING!!! WHAT'S THE MATTER WITH YOU? DIDN'T YOU HEAR ME?!! SHE'S NOT BREATHING - RUN!! RUN OVER THERE!! RUN!!!" and only then did they start to half jog her way. Oh, I was so upset. I mean, I was already upset, of course. Who wouldn't be upset when your child has no pulse? But when the ambulance arrives, you get this sudden feeling of relief because there's a part of you that thinks (hopes) that those guys will take over and make it all better. Then when you see them so NOT interested, just walking, not even caring in the slightest...when your child could very well be dying... well, it was just very upsetting to watch.

That was back in 1997 and for the life of me I can't remember if we made a formal complaint or not. We were so busy rehabilitating our daughter (she had a severe brain injury) that I don't think we even thought to do it. But that experience DID prompt my husband to become a paramedic. He was already a fire fighter, so she went back to school and now is a paramedic firefighter. He remembers only too well how it felt to have EMT's who were callous and uncaring. He is the exact opposite when he is on duty. He loves his job and is very, very good at it. In fact, it's because of him that our daughter survived the accident. The EMT's didn't even know how to intubate her! They were going to "try" to get a tube down her throat even though both had never done it on a child before. My husband said NO WAY to that, and insisted she just be bagged en route to the hospital (an air bag that pushes air into her lungs through her mouth, much like mouth-to-mouth) At first they told him he couldn't ride in the ambulance with our daughter, and he said, "Oh yes I am" -- he insisted, thank goodness. I seriously do not think she'd be alive today if he weren't there with her.

You are an amazing mom. I will keep your son and your family in my prayers.

At November 9, 2011 at 4:39 PM , Blogger Jessica said...

So glad your babe is doing better. I voted!!

Stopping by from Shell's.

At November 9, 2011 at 8:43 PM , Blogger Adrienne said...

Poor thing! How scary that must have been!

At November 9, 2011 at 9:03 PM , Blogger championm2000 said...

I voted and shared on my Facebook pages. Prayers for you and Alexander!

At November 9, 2011 at 11:22 PM , Blogger Eric, Erin, Elsie and Emmy said...

Yea!!! On many levels YEA!!!!!!!! I am so glad you called the EMT service. I will pray that the EMT is one you do not need to encounter! And yea on the runs!! I am so proud of you!!! I am so addicted to running because that is MY time...even with pushing the double jogger, be it 3 miles or 18, that is my time to unwind. I do the same things as you, write entires for our blog, thin of things to do, pray or just run and let my mind take me elsewhere!


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