Tuesday, February 16, 2016

My daughter has Epilepsy and a 5K announcement #WelcomeToWinning

Hi Friends!  You have heard me talk about it many times but for those of you who haven't, Serena (my daughter) has Epilepsy.  She was diagnosed at the age of 18 months.  This is our story.


When Serena was 18 months old, she was running a fever.  I didn't think anything of it and gave her Tylenol.  Being a busy working mom (and Dad) we checked her temp in the morning and she seemed fine.  So we sent her off to school.  We got a call from daycare at about 9:30 in the morning letting us know that she was running a fever of about 99.3 and to get her after her nap.  I went about getting things wrapped up at work when I got another call at 10:15 letting me know her fever had jumped to 102.7.  She had the chills, she was vomiting.  I had to get her NOW!


I jumped in my car and headed towards daycare.  I called on my way one more time and was told that she was headed to Children's Hospital because she had had a seizure.  Say what?  What is a seizure?  I turned the car around, called my husband and headed to the hospital, hyperventilating at 65 mph!  When I arrived at the hospital, I was told she had another seizure on the ambulance.  They gave her Ativan to stop the seizure and she stopped breathing so they had to intubate her.  


We were told that she was in the "Resuscitation Room."  Have you heard of a more frightening place?  We ended up in the hospital for 5 days while they tried to bring her fever down and figure out what was causing the seizures.  MRIs, blood draws, spinal tap...the works!  Finally on the fourth day, we were told she most likely has epilepsy and we would need to start her on medication right away.


She was put on Keppra and it seemed to work for about 4 months.  Then she started having breakthrough seizures more and more frequently.  We tried increasing the dosage.  We tried adding other medications.  Then in December of 2014, we were given Lamictal to add to the mix and it worked.  Worked for almost 14 months.


Then on February 1, 2016, she had a seizure.  People always ask if it was a bad one.  How does a parent answer that?  Yes it was bad.  It scared me.  But most of all, it caused her anxiety.  She was 4 1/2 when she had her last one.  She didn't remember what they felt like.  She was worried she was contagious.


This little girl is the bravest soul I know.  She puts me to shame.  She has had her blood drawn a countless times without even flinching.  She deals with her mom begging her friends and family for donations to the Epilepsy Foundation.  Thru it all, we have had the support of the Epilepsy Foundation.  I don't know where we or other families like us in San Diego County would be without them.  All the programming, the access to experts (including our neurologist, Mark Nespeca, M.D.) and the belief that Serena is extraordinary.  She is special, not because she has Epilepsy but because she is Serena.


Yes, I am going to ask you for money.  Yes I am going to ask you to join our team.  Many many times before Sharon's Ride/Run/Walk for Epilepsy on April 17, 2016 in Mission Bay and we would love for you to join us!  However you can.  I am not asking for 100s of dollars.  I am asking for $5 or whatever you would spend if I asked you to buy me a cup of coffee or a beer.

Thank you in advance for however you choose to help!  I know you will because you are good people.  Whether it is forwarding on the link or clicking on it and donating or joining the team.  I know you will.  She is so worth it!


I am linking up this post with Tuesdays on the Run blog link up with My No-Guilt LifeMCM Mama Runs and Marcia's Healthy Slice!

Thank you to ProFlowers for sending Serena the awesome Owl Always Love You bouquet.  You can find discount codes for ProFlowers here.

So, will we see you on April 17th?  Will you donate at least $5 to Epilepsy Research and Awareness?

As always, I wish you Happy Feet,
SD Mom

14 comments:

  1. Awwww, what a little beauty Serena is :)
    The worst thing for a parent is to have to watch their baby hurt in any way, I feel for ya!
    I hope you can find answers that will help her as she grows. Bless her for worrying she was contagious, that is a sweet little lady.

    ReplyDelete
  2. I am sorry to hear about your daughter but she looks in good spirits! Her diagnosis should empower her not make her feel badly. I am sure she'll have days when she feels badly about it :(

    Have you heard about a keto diet for epilepsy?

    ReplyDelete
    Replies
    1. We made a decision that for now, Keto won't work for her or for us. It is a whole family commitment and we aren't ready.

      Delete
  3. Oh S how terrifying. I can't even imagine. Of course I'm happy to donate and spread the word. xoxo

    ReplyDelete
  4. My heart goes out to you, mama. xxoo

    ReplyDelete
  5. We love you Serena!! We'll be there April 17th!

    ReplyDelete
  6. What an adorable and brave princess! I always feel for people when their is a race dedicated to them. My cousin has cronic Lyme disease and had a 5k for her last yr. I just got roses from Proflowers and they are beautiful. They do a really good job. And their customer service is great!

    ReplyDelete
  7. Serena is a beautiful name!

    I can't even imagine the things you have had to go through. I was a sickly child, but I can tell you I was not serene about needles at all.

    ReplyDelete
  8. I'm just catching up now. I feel like an awful friend for not being present earlier this month. I know what a stressful situation this is for you.

    ReplyDelete
  9. Such a brave little girl and momma!! I don't know what it's like to go through this personally but I do know what it's like to take care of a child like her. It has got to be so tough, but I am so thrilled that she is doing so well, and what an awesome way to help out for more research!! Hugs!

    ReplyDelete