Sunday, April 7, 2013

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.

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