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.

Sea Water Therapy

courtesy David Roberts Photo

Many of us have read about the positive results that come from water therapy, how it soothes sore joints and increases flexibility especially for those of us who have lingering issues post stroke. When I was in Grenada two weeks ago (ugh can't believe it's been that long ago. I want to go back!!) I was very much looking forward to getting to the sea, immersing myself in that beautiful blue water and letting the salt lift me up on my back. Unfortunately, Mother Nature had separate plans for me!

There was a tremor in Trinidad the morning I landed which caused fairly big tidal waves in Grenada. We were technically on tsunami watch for the whole week so my plan of being in the water was hampered by my bad timing. That wave you see in the pic was one of the ittty bitties compared to what I saw earlier that day. I tried going in, thinking I could take it. What are a few waves? Well, after almost getting my bikini torn clean off my body, I figured it best that I stay on shore. Rocks even shot out of the water and into my foot causing a bleeder! Geez Grand Anse, all I wanted to do was love you!! Haha

On the day I left, and we all know that this is what usually happens on vacation, the water calmed down. Waves were down to a whisper and I was able to finally bathe in the sea properly. My Dad decided to come in with me, an extra special treat, and we both floated on our backs looking up at the cobalt blue sky ignoring the pain we have in our arms feeling weightless and relaxed.  It was the perfect end to my trip. Next time you're near a beach, go into the water and allow yourself to let go. See what it does for your joints and muscles.

Spring better come soon NYC!

Annual Neurologist Visit

That's actually a lie, because an annual visit would imply that I went last year....and I didn't and it's not because I didn't want to go! No one told me to go. Wait, that doesn't sound right either. Ok, ok, in my defense, I asked my Primary Care Doc if I should go see my Neuro and she said not necessary but when I went to see her last week for my annual, she said maybe I should pay her a visit.

Of course this makes me nervous. Why do you want me to go if I didn't have to go last year?! WHAT CRAZINESS IS AWAITING ME ON THE OTHER SIDE OF THAT ROUTINE MRI?? Well, it's probably nothing and I'm freaking out for nothing but still...why would you say to go back if you told me not to go back before? I'm lucky that I love my Neurologist, Dr. Cardiel. She's the best. She puts you at ease and doesn't lose patience with you, especially if you are a repeat offender of phrases. I am not sure what it's like in other Neurologist offices but with hers, you don't feel like you're in a Doctor's office, you feel like you're in a lawyer's office. Once you enter her space, it's leather seats, a dark wooden desk, frames of degrees, and no examination table. It's like being on an interview...for your brain. If she deems it necessary to examine you, you're taken to a separate clinical looking room. I can't recall where that one is...did it open up via secret wall, or a door off to the side. I want to say secret wall but that's just because I think secret walls are awesome!

The soonest appt. I could get is for May. The woman is popular! I'm telling you, she's good! If you guys need someone and live in the NY area, look her up! It's so important to have a doctor who puts you mind at ease and treats you like a person, not a cash cow.

Be well!

Daddy's Girl

I am a Daddy's girl in every sense of the word. I'm his only daughter. I am the apple of his eye and he is mine. We have lots in common. We look alike, have some of the same tendencies, and we've both had strokes.

My mind is still in vacation mode because I just got back from a trip to Grenada. He lives there and I LOVE going to visit him because it's Daddy daughter time. This was the first trip I took to Grenada by myself post stroke where we really had one on one time together. Before I left, I tried to plan everything out in my mind of what we would do if he took enough time off work from trips to the country down to what I wanted him to cook for dinners at home (the man could be on Iron Chef). Throughout the trip, I was very tickled by everything he did because I saw myself in him, especially with things pertaining to memory. He would always say things like "Remind me of this..." when I'm not likely to remember and I would say the same to him. This might make someone sad but it did just the opposite for me. This was an AWESOME bonding experience. Here is someone who I didn't have to tell to not turn the knobs tight because I wouldn't be able to open them or that I couldn't speak much at times because I was too tired to sound proper. It was unspoken and understood and just wonderful. Thanks stroke for bringing me closer to my father.

I continuously find small little things to thank the stroke for and this is one of them. Is that kind of messed up? Shouldn't that not be the case?! It has to make me laugh, you know? Right now, I wish I could sound more coherent about this experience but the only way I can express how much of a profound effect this trip had on me is to just tell you to look at the picture above. My face says it all.

I love my Dad. :)