about chelsi

I present to you, a briefish but in-depth biography for those who may have questions they are afraid to ask.

In a nutshell, my name is Chelsi.  I am 30.  I am a writer, a webmaster, a designer (in many forms), an artist, a dancer, a woman, a dogmom, an adoptee, an adopter, a reader, a member of the Church of Jesus Christ of Latter Day Saints, a fashionista, a cake decorator, and a wife.  I am passionate, sensitive, over-analyzing, dramatic, and silly.   I have Cerebral Palsy and Epilepsy. 

I was adopted when I was three days old through LDS social services in Sandy.  My birth mother was 15, and my birth father was 16.  I have never met them.  All I know about them is that my mother was 5'4'', blond with blue eyes, and LOVED to dance.  My birth father was 6'2", half Hispanic, and a basketball player.  They'd been together for many years.  I have a letter from my birth mother and birth grandmother that I cherish deeply.  I would love to meet them someday, but only out of curiosity.  I don't feel incomplete.  I know without a doubt in my heart and mind that I was not theirs to begin with and that these amazing teenagers performed the greatest act of love and the ultimate act of selflessness by giving me to the best parents I could ask for.  I know my brother and I were given a great privilege to be part of our eternal family.

When I was about a year old my mom noticed I wasn't accomplishing my developmental milestones like I should have been.  I was diagnosed with a form of Cerebral Palsy called Hypotonia.  This basically means a muscle weakness.  My right side is much weaker than my left side.  My tongue is also much weaker than normal and I have a speech impediment resembling a deaf person.  The doctors think my CP was most likely caused by an illness my birthmom contracted in the early months of her pregnancy which caused two malformations on either side of my brain.  However, I do not suffer any mental or intellectual complications. 

Thanks to a persevering mother and years of physical therapy, I was not only able to learn how to walk despite my diagnosis, but dance pretty well too.  I can run, jump, skip, and do most things everyone else does...it just took me a lot longer and a lot more work to learn how to do them.  I can't ride a bicycle, rollerblade, or ice skate, and some other stuff but they all sound a little overrated.  I am not an athletic person, but I do love to dance.  I took ballet for thirteen years and it takes up most of the dance real-estate in my heart, but I also love swing dancing, belly dancing, pole dancing, salsa, and just dancing.

When I was 14 I had my first seizure.  I was diagnosed with epilepsy most likely brought on by hormonal changes and due to excess electricity in my brain.  Due to harsh medications, my seizures were pretty under control throughout High School, but brought on an onslaught of nasty side effects like severe acne, extreme fatigue, hair loss, and a general poisoning of my body.  I couldn't wear jewelry without it tarnishing, which led my doctor to examine my liver.  Since the medicine was causing liver damage, I switched to a new medicine right before college.  My seizures increased a little, but not enough to prevent me from discovering myself, following my passions, making lifelong friends, dating a lot, and having the best years of my life.

I was married in the LDS Temple on June 30, 2006 to Spencer.  You can read the story of our courtship here.  After I got married my seizures increased dramatically, probably due to more hormonal changes.  I was able to graduate Cum Lade from Utah State University in December 2006 with a degree in Technical Writing and Instructional Technology and began working as a webmaster for USU's department of Agriculture and Parent Help.  However, as time went on, the seizures became more and more frequent and dangerous.

By 2008 I was having at least one partial complex seizure a day and a grand mal seizure every other week.  I could do very little besides let the dog out and sit on the couch.  My incredible boss at USU allowed me to work from home and Spencer continued to work and go to school.  We tried many different types of seizure medications, but nothing seemed to be working.  And finally, what I'd been prepping for for ten years was finally confirmed:  With my CP and worsening epilepsy, brought on by hormonal changes, I would never be able to safely carry a child.  Seizure medications can cause severe brain damage in fetuses while having a seizure while pregnant can cause mental retardation from oxygen loss or abortion of the baby.  It is important to note that most people with CP, or epilepsy, two completely separate conditions, can safely carry children.  My situation is unique and after much prayer and fasting, we did what was right for our eternal family.

Finally, we began the process of getting a VNS.  The process took about a year and consisted of a lot of tests to find out which side of my brain the seizures were coming from.  If the seizures were coming from a certain spot in my brain, I would undergo brain surgery where the affected part was removed.  The tests included many EKGs, EEGs, many CAT scans, a test where radioactive material was injected into my brain so the "alive" parts would glow, and finally, an 11 day test where I was taken off my seizure medication and persuaded to have seizures while hooked up to electrodes.  When all of the tests were done and they all came back inconclusive.  The option for brain surgery was ruled out, and the VNS procedure was agreed upon with absolutely NO GUARANTEES.  A month before Spencer graduated from college.

On April 10th 2009 I went into surgery to have a VNS implant.  The surgery story can be read here.  A few weeks before, I wrote this:

The procedure is a simple outpatient procedure and it will happen April 10th at 9 am.  After that, my life will change.  It has to.  All of my eggs are in this basket and it has to work.  I'm out of options, out of patience, and out of fight.  This HAS to work.
Well guess what?  It did.  My surgery went very well, and I had the support of many wonderful friends and family.  Since my surgery, my seizures have decreased by 79.4% monthly!!  When I have a partial complex or small seizure, it's considered a bad day, not a several-times-a-day occurrence.  I went a whole year being seizure-free, an amazing accomplishment.  
This chart shows the correlation between the frequency of my VNS, which is slowly turned up after surgery, and the decrease of my seizures.  As you can see, once I hit a frequency of two jigawatts, my seizures decreased substantially.  Most patients see the most benefits at a frequency of two, but after my breakthrough seizures, we turned it up to 2.5.  The side effects compared to my drugs, (which I still take) are so mild they can't even be considered side effects.  Every four-and-a-half minutes my VNS delivers a charge to my vagus nerve and my voice goes hoarse for 30 seconds.  Talk about bearable.  And as my brain continues to get used to NOT having seizures...it's only going to get better.

In the past few years, my energy has increased, I have been able to work more, I have been able to exercise again, and I feel like I have control again.  Epilepsy once stole my life, but thanks to the VNS, I'm taking it back.

I work from home as a freelance writer and graphic designer.  I am the Young Women's Secretary at my church and I love, love my calling.  I love spending time with my cute girls and love them more than I could ever convey.  We're very close to our families and have 6.5 nieces and two nephews that we love spending time with almost every weekend.  We love camping and road trips.  We love concerts too!  My cake decorating business has really taken off, but when I'm not decorating a cake, I love to read, paint or design invitations.  I love swimming and I'm pretty sure I could be a mermaid.

We have the cutest little house in a great neighborhood that we worked very hard to get.  We are so happy here as a little family of three, and on January 3, 2014 we decided it was time to FINALLY put in our adoption papers at LDS Family Services.  We worked tirelessly through the process and were approved July 23rd!  We are so excited to be parents to a human and can't wait for our birth mom to find us.  We love her so much already.  Please share our page and take our button.  Help us find our baby and our sweet birth mom!!