Annual Neuro Visit

Ok, so I've been bad. Like bad in the sense that I haven't been going to see my Neurologist every year for my annual checkup...I know I know don't shoot me! First of all, I wasn't aware that I had to roll up there every year. I asked my Primary Care and she said I didn't although I did have a lingering feeling that hey, maybe I should go and say hi, get checked out because you can never be too safe, right? But then again, this is my fault, I should know better especially since I've been saying to you guys to get checked out no matter what....bad Eljon.

But I did finally go. I love going to my Neurologist's office. She's amazing. I didn't expect to hear anything out of the ordinary during my visit but did ask about the lingering little side effects in my right arm and she did tell me that if my strength didn't return by now that it wouldn't return so...kind of sad small bummer. This means I'm not going to be able to have lucrative careers in such fields as...sports. I always wanted to be a baseball player and since I throw and bat righty, I can kiss that goodbye. Professional cheerleader will also be tossed out the window with this. No one wants a cheerleader who lifts one pom pom up faster than the other. DAMNIT!! I guess surgeon is out and so is anything else revolving speed and precision with my right hand.

I know I'm joking right now but it was a bit sad hearing that from her. I always thought that by some little miracle, my right side would come back 100% but hearing the words from her kind of stung. Again, it's ok, I know there are worse things that I could have been left with and I am so blessed and grateful to only have a slight lingering weakness in my right side...still, hibachi chef still would have been on the top of my list of things to aspire to be.

National Stroke Month!

MAY is National Stroke Month!

Celebrate someone you love who has had a stroke. They are survivors!
Spread knowledge so you can know what to do if you are in a situation where someone is having a stroke.

MAY you feel wonderful this month and every month. You're a survivor!
MAY you be comfortable with your new self.
MAY you be well :)

Help Ava Get A Therapy Pool!

A few weeks ago I posted a story about a beautiful 10 month old baby named Ava Pearl who suffered a stroke when she was 7 months old. 

According to Shana, Ava's Mom-During bath time, she relaxes and we're able to bend her limbs and work through her severe muscle tone. In the last week she's now been diagnosed with severe dystonia (basically full body spasms) as well as having epileptic activity on her last EEG.With our newest set back we can't stress her out so therapies must been done at home where she is most comfortable. In efforts to try and keep home and therapy separate we want to build Ava a therapy room at our house that contains a therapy pool for her. It doesn't qualify for insurance or any other financial support which is why we ask for your support whether it be financial, prayers, good wishes, anything to try and help Ava would be greatly appreciated. We still have a long road ahead and we are not sure how much she'll recover but this room and pool is something she can use for a lifetime. 

Please help in any way you can. Even $5 can make a difference! Do it for the upcoming stroke month (May)! Do it because this little girl deserves to feel better!  

Here is the link to Swim Ava Swim!

Guest Stroke Blogger: Meet Ava

This weekend I had the pleasure of getting an email from Ava's Mom, Shana. Little Ava has an amazing story. This brave, little fighter is just 10 months old. She suffered her stroke when she was just 7 months old. I wish her and her family the best on their road to recovery. Please read to learn about this beautiful little girl.

Little Ava before her stroke.

1 in 4000 infants have strokes. 

Ava Pearl was born June 1st 2012 at 1:45 am. She weighed in at 7 pounds and 22 inches long. She was a perfect baby! We went home after the standard 24 hour stay. For the next 7 months she was the happiest, healthiest baby. She got her first two bottom teeth at 4 months, and said her first word "hi" at 4 1/2 months. She loved playing the piano with her Dad, snuggling with Mom, and hiking in our gorgeous Alaskan outdoors. You could say we led a charmed life...

On January 14th, 2013 we woke up and Ava was acting a little off. After calling our Pediatrician (who said not to worry), we decided to bring her in to an Urgent Care anyway. Once at the urgent care, Ava started to crash. Her blood sugar was a shockingly low 28. They immediately called 911. We were whisked away in an ambulance to our local emergency room. 

Ava in PICU at Providence Children's Hospital

At the ER she went through a battery of tests including, a spinal tap, CAT scan, X-rays, and numerous blood tests. Although we were at the ER they still couldn't get her stable. They placed a breathing tube and called the helicopter. Life flight transported her to Providence Children's Hospital. Once we were there, we were checked into the PICU. The first two days were touch and go. More lab work, IVs in every limb as well as a central line were placed.
Her lab work showed very low blood sugar, acidosis of the blood, and extremely high ketones. She also had an MRI done, which is when they told us she had a bilateral stroke in her basal ganglia. Her right side was slightly more affected but she sustained severe brain damage as a result. Five days into her ICU stay and she finally opened her eyes for the first time! They were able to take her breathing tube out. One week after arriving and we were moved to the pediatric wing.

For the next two weeks, she had daily blood draws which led to a blood transfusion, chest x-rays, eye and hearing exams, two EEG's, multiple medications added, and daily therapy. On January 31st, she went in for surgery to place a G tube. The stroke caused her to lose all oral motor skills. She won't even suck on a pacifier. One week after her G tube surgery and we were able to come home! It was a long and emotionally exhausting 3 weeks.
Then, the real work started. Appointments with gene specialists, neurologist, pediatrician, physical therapist, occupational therapist, speech therapist, and multiple trips for lab draws. She has therapy twice a day, five days a week.

Although we have had multiple blood and DNA tests done, we still have no diagnosis as to what caused her stroke. The specialist thinks it's a metabolic disorder. We've already tested for all the metabolic disorders that her symptoms line up with, yet all have come back negative. Taking her to therapy and doctor appointments has it's own draw backs.. Even a small common cold would put her back in the hospital. 

For now we're just pushing forward with an aggressive therapy schedule. Ava doesn't smile or laugh yet but the one thing she does seem to enjoy is water. During bath time, she relaxes and we're able to bend her limbs and work through her severe muscle tone. In the last week she's now been diagnosed with severe dystonia (basically full body spasms) as well as having epileptic activity on her last EEG.

With our newest set back we can't stress her out so therapies must been done at home where she is most comfortable.  In efforts to try and keep home and therapy separate we want to build Ava a therapy room at our house that contains a therapy pool for her. So we're actually getting a 5k run set up to raise money for her. 

Through all of this we have met some amazing people trying to help our little girl and we will continue to pay the kindness forward any chance we get.  Thank you so much for taking the time to read Ava's story and we wish you all the best.

Shana, thank you so much for sharing your story with me and with the world. You followed your instincts and took Ava to Urgent Care even when the Pediatrician said not to worry. You saved Ava's life. Your family is in my thoughts.

Eljon On Chit Chat!

When I was in Grenada a few weeks ago, I had the privilege of being interviewed by the wonderful and talented Lexan Fletcher, host of the show, Chit Chat. We spoke about strokes and she even showed the film I wrote, Docket 32357! I had such a great time speaking with her especially because this was the first time we met in person! We had been in communication for some time over email and FB. Once I saw her in person, it was like catching up with an old friend.

I am so grateful for opportunity to continue to tell my story. Thank you to Lexan and the crew of Chit Chat. I'm looking forward to returning to Grenada and stopping by again for a visit!

Click on the link to check out the interview and the little film that could now in 18 FESTIVALS!
Docket 32357 and Eljon Interview

Gertrude Stein and Strokies

Yesterday during Theater History class we were talking about Gertrude Stein's writing style and something my teacher said really stuck with me.

There is no such thing as repetition. People repeat until the emotion underneath is drained.

And then, a light went on. That's it! We strokies tend to repeat ourselves and this is a beautiful way to think of why we do it. Of course there's that whole can't remember we said it thang but I prefer to look at it as Gertrude did.

I don't really want to say too much of it because I think it speaks for itself. Just soak it in. Really. I love that.

My Right Hand

My right hand
That held a glockenspiel mallet,
That used to play the drums,
Has slowed down
And can't keep up
With the tempo,
So now everything
Sounds like a waltz,
Instead of the samba.