Our Local Celebrity

This is the story that was on the front page of the Blanchard Valley School newsletter with a big picture of Miss Lexi Mae! It makes us so thankful for how far she has come. Yes she is really behind for "typical" three year olds, but looking back at her "near death" experience, we realize how lucky we are JUST to have her with us!!

Lexi’s Story

When I learned that I was pregnant in early 2008 we knew we were going to have our hands full.

We already had twin girls - Aleah and Elizabeth - who were just 13-months old when Lexi Mae Hocanson was born on Oct. 28, 2008.

Three children in 13 months! The diaper expense alone was staggering.

Little did we know how full Lexi would make our lives!

Lexi was born without complications, but doctors told us they heard a heart murmur.

We went home after four days in the hospital. Lexi continued to eat well, grow, and was an excellent sleeper. At her two-week check-up, however, our family doctor still heard the heart murmur and thought it was best if we had it checked by a pediatric cardiologist.

Lexi had an echo-cardiogram, followed by a visit to the cardiologist in mid-November. From that point on, our lives have been a blur!

Lexi was diagnosed with a severe coarctation of the aorta. This condition causes the aorta to resemble an hour glass and the doctor could feel no pulses in her lower extremities.

We were admitted to the Neonatal Intensive Care Unit at Blanchard Valley Hospital and transported the next day to Nationwide Children’s Hospital in Columbus, where Lexi was scheduled for open-heart surgery. The doctors said they had done hundreds of these surgeries in 2008 alone, and we should be home in plenty of time for Thanksgiving.

Unfortunately, Lexi’s surgery did not go according to plan. Lexi had a leak in her ventilator during surgery and suffered “near death” experience that required a blood transfusion. After surgery, Lexi was moved to the cardiac intensive care unit where she spent six days in a medically induced coma. She suffered a small stroke and seizures during these few critical days.

When Lexi finally awoke up, I was so excited to hold her and finally be able to feed her a bottle again. But Lexi wanted nothing to do with the bottle. After being awake a short time, I also noticed she was not blinking, and her face seemed almost paralyzed.

We spent the next six weeks at the hospital on the cardiac floor trying to figure out exactly what was happening with Lexi and her unique symptoms. Her heart repair looked good, but she was unable to eat, blink, move most of her face and had lost her gag reflex. After these exhausting few weeks with very few answers, we decided to have her put on a feeding tube, and we were able to fight our way out of the hospital in time to make it home by 11 p.m. on Christmas Eve.

After the holidays, we transferred Lexi’s care to the Cleveland Clinic. At the Clinic, Lexi was diagnosed with cranial nerve neuropathies, an additional heart condition - a supravalvular aortic stenosis - and severe bi-lateral facial nerve damage. Lexi somehow suffered damage to the core of her brainstem, where the cranial nerves are located, causing symptoms that are unique and very hard to treat.

In the past three years, we have learned a great deal. Lexi is almost three, but is developmentally at about 18 months. I quit my teaching position to stay home and run Lexi to therapies and doctors appointments and I have loved every minute of being home with her and the twins!

We currently make three or four trips a month to the Cleveland Clinic, see a Help Me Grow therapist once a week at our home, and visit Blanchard Valley Hospital twice a week for therapy.

Lexi has since been diagnosed with 16 different conditions, so she is definitely a full-time job.

Lexi has taught us that we, as her parents, are her only advocate. We must stand up for her and what we feel is right for her treatment. We also have learned to look at the small blessings in life and celebrate each developmental milestone.

I have thrown away my “milestone” books that I used for my “typical” twins. Lexi’s does what she can when she’s ready! We have to go on her time frame and use an extreme amount of patience. She is currently learning to walk, putting everything in her mouth and throwing fits when she doesn’t get what she wants! We didn’t have the Terrible Twos, but we’re having the Terrible Threes!

We also have come to realize how blessed we are. First, we are surrounded by a loving and supportive community. From our church family, who threw a benefit for 800 people to raise money for Lexi’s medical expenses, to a family that steps up to watch the twins whenever necessary so we can run Lexi to upwards of 25 appointments a month. We could never have made it through the past three years without their love and support.

We also know how blessed we are to have Lexi with us. She has been a fighter from day one and has faced more procedures and surgeries than any adult I know.

She teaches us strength, endurance and unconditional love. It is definitely not easy to raise a child with special needs, but we know we are surrounded by wonderful therapists, some of the best doctors in the world and the most supportive community anyone could ask for. I think the phrase “it takes a village to raise a child” holds true even in today’s society, and we are so blessed for the “village” in which Lexi has been placed!