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!

October 19-Cleveland CLinic tests- 1 for 2....we'll take it

We went to Cleveland Clinic yesterday for a swallow study, echocardiogram, EKG and appointment with the cardiologist. Lexi's Echo, EKG and cardiology appointment went really well! Both of her narrowings are still "moderate" and "acceptable." So, the cardiologist does not want to see her back for 9 months! Lexi also had a major growth spurt since her last appointment so it is really encouraging that her narrowings have grown with her so well!

Unfortunately, Lexi did not pass her swallow study.....again. This is the 7th one she has failed. I was pretty certain she would pass, but she aspirated two times in 22 swallows. She IS making improvements however. The Speech Pathologist is going to allow us to give Lexi regular water between meals to start practicing with thin liquids and we'll will try again with another study in 6 months.

Finally, we have decided to go ahead and try Lexi at Blanchard Valley Preschool starting November 1st. It is crazy to think that our baby is going to preschool and I am having a REALLY tough time with it! But. with all of Lexi's appointments and therapies (she has TWELVE this week!), we are going to just put her in preschool two days a week. We are VERY concerned about her safety so please pray that things go well! Lexi grabs food and other objects very quickly and puts them in her mouth and then usually pukes, she tends to fall a lot as she is learning to walk, and we are concerned about her getting other children's drinks and aspirating. We are meeting with all the Blanchard Valley Therapists tomorrow to discuss our concerns and come up with a game plan. I'm thankful they are being so understanding and accommodating!

Lexi is making HUGE progress in speech and she is saying something new almost every day. She is so much fun and we are having a blast enjoying her upswing in progress! Thank you again for your interest and prayers for her! I am going to post a story that was written for the Blanchard Valley School News letter in the next post. It helps remind us of how far Lexi has really come. She turns three on next Friday, October 28th and we are so thankful for another wonderful year with our little miracle!

Our Little Piggy Bank- October 2

It's hard to believe it's been 2 months since I last posted about Lexi Mae! The twins started pre-school a few weeks ago and I was convinced that THIS would be the thing I needed to allow my life to slow down a bit....or not (sigh). Here's the latest updates on Lexi!

Why the post "Our Little Piggy Bank?" If you haven't heard, a few weeks ago, Lexi started vomiting and eventual started to refuse to eat all together. After about a week of this, we got very worried. Unfortunately, when you have a child with multiple medical issues, you don't know exactly which doctor to turn to first! We called her GI doctor who said to talk to the feeding clinic, the feeding clinic said to talk to ENT and ENT said to talk to Neurology. FRUSTRATION! Finally, our neurologist at Cleveland Clinic, Dr. Friedman, took note! We are so thankful for him! He admitted Lexi to Cleveland Clinic because he was concerned that her chiari was having issues. After a whirlwind of being admitted, getting IVs started and a plethora of questions, one of the doctors said it sounded like she has swallowed something. So, off to X-ray we went (at 3am!!). Sure enough- a round, metal object lodged in Lexi's esophagus! So, first thing the next morning, the GI team came up to access her. Their main concern was that the object was next to her aorta and if it would tear through the esophagus, this would become a very serious situation. So, they scheduled Lexi for emergency surgery to remove the object. We were amazed at how quickly they moved! Within 20 minutes of talking to the GI doctor and signing all the forms, Lexi was down in pre-op! Turns out she swallowed a nickel. And yes, that actually gave us our money back :-)

However, last week, Lexi started having some similar symptoms so we took her to our local ER. Believe it or not, she swallowed another coin!! This one, however, is in her intestines and the doctors can't reach it. So, we are hoping she'll pass it on her own- otherwise (Dare I say it??)- it's back to Cleveland Clinic for more surgery! The doctors said we should find the little diaper surprise within a day or so....that was 5 days ago so a phone call will be made to Cleveland Clinic GI tomorrow.

In other news:
Feeding Clinic- after Lexi's last episode of nickel eating, she is down 9 ounces...not good! The clinic is hoping she will re-gain the weight so we don't have to put her back on more tube feeds during the day. They are also having us do some oral stretches on Lexi's mouth and cheeks to try to encourage nerve reintervation in her face.

ENT- Lexi is scheduled for a swallow study on October 18th. We are praying that she can be given the "all clear" to try thin liquids without aspirating!

Allergy- the best news is that Lexi passed a 4 1/2 hour food challenge for egg. She no longer has ANY food allergies which is a huge blessing! We're hoping being able to add egg into her diet will help with weight gain!

Development- Lexi has become a little parrot. She sings ALL the time and knows ALL the words to songs. You can't always understand her since she can't say "M," "B" or "P" due to her facial nerve damage but she is so cute! She mimics everything we say! She is not using a lot of words on her own, but we are really focusing on comprehension with her. She is continuing to work on walking with new foot braces and is becoming stronger every month.

Please pray:
That this nickel passes through Lexi's system without any more surgery needed! This little one has been through enough!

Lexi has a big transition meeting on October 19th. At this meeting, we focus on transitioning her out of Help Me Grow and into the school system (which seems crazy to me!). We are struggling with what to do with Lexi. We can move her to Blanchard Valley Preschool or we can keep her home and have a preschool teacher come to our house 1 hour a week. This is a big decision and we don't know which direction to go with Lexi. I'm just not sure I"m ready to send my little princess off to preschool quite yet! Please pray we make the best decision for Lexi!

Finally, pray for Lexi's upcoming swallow study on October 18th. Lexi has had 7 swallow studies in the past 2 1/2 years and has yet to "pass" one. This would be a HUGE blessing for her to pass the test!

As always, thank you for your prayers. We'll be posting some new pictures soon!