Epilepsy Awareness Month

November is epilepsy awareness month.  It took me a long time to say that Jordan has epilepsy and now I advocate for research and a cure because bottom line is epilepsy sucks.

Do you know what the faces of epilepsy look like?  I do, it looks just like you and me.

Here is a link to some facts about epilepsy, learn something new about the disease.
http://www.cureepilepsy.org/aboutepilepsy/facts.asp

This is my daughter and she is the face of epilepsy: I love this picture because she is so natural in it and you would never no she has epilepsy.

In an effort to raise money and awareness we are holding two fundraisers.  100% of all the profits will go to the Children's Miracle Network.

First we have the calendar Fundraiser.  These are pictures taken by members of my family.  Jordan has been to all these places and having epilepsy has not stopped her.

https://www.createphotocalendars.com/Store/CMN+Fundraiser-7505979617

The other fundraiser is a TShirt sale.  My middle child designed the TShirt to support his sister.  If you are interested in TShirt sales please leave a comment or email me at cornflakegirl524@gmail.com

This is the design of the TShirt:

It's Gone

In May of 2011 Jordan developed an autoimmune disorder in her eye.  No one could tell us why although if we didn't get her to the doctor when we did she could have gone blind.  I remember the first time we saw the doctor he said "Wow, you have a high tolerance for pain, if you were an adult you would have been her months ago."



PanUveitis is the eye condition that Jordan had.  Had as in it is GONE! After 3 years of traveling back and forth to Boston, the doctor has released her and she doesn't have to go back for a whole year.  After traveling there every 6 weeks in the beginning and then every 3 months for the following 3 years, we now can wait a whole year before we go back.  I am so excited for Jordan and cannot believe it is gone.  The doctor thinks it was a one time thing and that she won't get it again.  Let's pray for that.


Training has been put on hold.  The same day we found out Jordan's PanUveitis was gone I twisted my ankle.  I was walking the dog and all of a sudden I was on the ground.  The pain was unbelievable.  I saw white, felt nauseous and thought I was going to pass out.  As I sat there I thought can I walk, can I do this.  I said to myself "I can go this."  I got up and quickly realized I could not, my legs were shaking and I sat right back down.  After another few minutes I got up and walked home.


I went straight into my room and laid down with my leg propped up.  As I lay there I assessed the situation. 1. Did anything else hurt? No it was probably the pain that made me feel like passing out. 2. Was my ankle movable? Yes, it hurt like hell but it wasn't broken. 3. Could I walk on it? Yes, although painful I could wrap it and continue with my day. 4. What could I do to help with the healing process? I made turmeric and ginger tea with fresh turmeric and ginger root.  I drank my tea all day and iced my ankle when I got home.


 I have been reading Scott Juker's book "Eat & Run".  He talks a lot about mind over matter and how our bodies can handle more than our minds can. As I was sitting on the ground I knew I had hurt myself but I also knew that I could get through this.  So even though my training has been put on hold I think I am going to recover more quickly than I have in the past.


I am amazed at how well the turmeric and ginger tea has helped with the swelling and how great I feel.  I cannot wait to start running again, I am looking forward to pushing myself.

Seizures Suck

Seizures Suck.  Jordan has been very lucky when it comes to her seizures.  In the beginning medication controlled them and the only time she relapsed was when she was off medication.   She has been on medication for 3 years now and they have worked great, that is until January of this year.


I actually think they start back in August of 2014, but no one else was seeing anything and since they caught me off guard I was never fast enough with the video taping them.


Now almost a year later they have become somewhat of the norm.  She only has them once or twice every month, so I cannot complain.  Actually I can complain I know there are people who have more seizures and there are people who have less.  My problems are not bigger or less significant than someone else's, they are mine.


I realized over the past few months that I need to control my fears because it will only make things worse.  She now understands when she is having a seizure and she can explain things to me.  She talks through them albeit confused speaking, at least she is speaking. These seizures are not as scary as when she first started having seizures and I believe as time goes on we will learn to understand them more.


Training sucks.


I have learned that breathing is good when you run, so when you cannot breath you have a problem.  I have a problem.  I practice mindfulness, I understand the concept of breathing using your diaphragm.  I practice this every morning feeling my stomach rise and fall as I breath.


Then I start running and my mind turns to mush.  My body rebels and says it cannot breath.  I tell myself to practice what I know and it laughs at me, mocking me.


How am I ever going to run 13.1 miles if I can barley run 1 mile.


Now I am throwing everything I know about breathing out the window and I am going to try mouth breathing.  Lets pray is works or I am in real trouble.


Go Team Tinkerbell, OT


http://princesshalfmarathon.childrensmiraclenetworkhospitals.org/index.cfm?fuseaction=donordrive.participant&participantID=2169

I think I am insane

Day 3:

I think I am insane, what was I thinking signing up for a half marathon, I can barely walk 2 miles never mind run 13.1.  That was my first thought the day after I signed up for the marathon.  Then my wonderful team mates sent me an edible arrangements and I remembered I am not alone in this journey.  I have people who will encourage me and won't let me quit.  It doesn't matter how fast I run or even if I walk part of it, all that matters is that I finish.

Yesterday I did not work out when I woke up.  I knew that Jordan and I were going to a concert and I needed the sleep because we would be out late.  I was extremely nervous about taking her to this concert.  Not because it was her first concert or anything, this is her 8th concert, I think.  I was nervous because two days before she ended up in a medically induced coma we were at a Shinedown concert.  This is the first concert she has attended since that one.

As I stood there watching her interact with her friends, looking beautiful and mature, I realized we have come so far.  My fears will never go away, but I am learning to control them and I am so glad that my fear does not hold her back from doing the things she loves to do.

Training for this race is nothing compared to raising a teenage daughter with multiple medical conditions, that just wants to be a normal teenager.

We will both make it through these challenges; having great friends, wonderful team mates and a strong family will make it that much easier.

It's Official

I am running the Disney Princess Half Marathon on February 21, 2016.  I am super excited and nervous to be running this event.  Since Jordan got sick in 2010, I have put myself on the back burner.  I have not worked out as much as I should and I learned I am a stress eater.  Today starts a new way a life.

I am running under Team Tinkerbell, OT with my co-workers and Baystate Children's Hospital PFAC family members.  I am thankful for the support they have given me and I am looking forward to training sessions and long runs that will get me ready for the race.

Day 1:

I figure I can run 13.1 miles for Jordan.  Her journey had taken her down many hard roads and she has over come them.  She is my inspiration and every time I feel like quitting I think of her.  Lying in a hospital bed with millions of tubes and not knowing if she would wake up, getting blood drawn for the 100th time and knowing how much she hates it.  She tackled most things with a smile on her face and that smile is what I see when I run.

Today, she is a 13 year old bundle of life.  She loves school, her friends, bowling, and public speaking.


Thanks for the support!

Wendy

Epilepsy, you will not take my daughter

Epilepsy there I said it.  For so long I feared you and all that you mean.  You came into my world with a bang turning my funny, adventurous, outgoing 8 year old into a helpless child who had to be put into a coma.  You rocked our world in 2010 and at the time I would only say Jordan had a seizure disorder.

 

Epilepsy thought you could steal her from us but you couldn’t.  Slowly she learned to walk, talk, eat and laugh again.  Her brain was winning the battle you set against her and she was thriving.  For 2 years she fought you fearlessly never letting you stop her.  Then the seizures  struck again and my world was rocked all over.

I started to realize it was my fear you were taking. Epilepsy means she will never be able to do anything. Epilepsy means she will be deficient in some way.  You will take her hopes and dreams and leave us with a withering child that we don’t know what to do with.  See how you play mind games with me, see how you get into my brain as well.  It was my fear of Epilepsy that caused all this anguish in me.  My fear that made me crazy every day she went to school or was alone in her room.

Now I have learned to not fear you.  Jordan has shown me that no matter what Epilepsy throws at her, we will handle it.  She is so much stronger because of you.  She doesn’t let you hold her back and she never will.  Jordan wants to be a neurologist because of Epilepsy and what you did to her.  She wants to learn all about Epilepsy so she can help other children like her.  She wants to show them that no matter what you can still get up and keep going.  At 13 Jordan is a wonderful advocate speaking at hospitals, colleges and her school about Epilepsy.

Epilepsy I may still fear you at times but you will never take my daughter from me.  I will not let you have her and she will not go quietly if you try to take her.  

Being An Advocate

Jordan has been dealing with Idiopathic thrombocytopenic purpura (ITP) for over a year now.  As we go through the process of understanding ITP and what it really means I have learned a lot.  One of the most important things I learned was that Jordan is the best advocate for herself, now that she is getting older and that I need to be a bigger voice for her if her voice is not being heard.

In March of 2013 she started taking Nplate for her ITP.  In the beginning it was working great.  Her platelets, which are usually in the below 50K (normal is between 150K and 400K), started climbing into the 100K.  Everyone was happy and we just kept increasing her dose very few weeks.  When she reached the dose of 225mcg, Jordan started getting sick.  Yes it was great that her platelets were in the 200K although it was not great that she was throwing up and having lots of problems.  Now here is the frustrating part in this situation.  When I talked with the doctor's about this they said "that is not a normal side effect of this medication, maybe something else is going"

These episodes of throwing up and being out of commission lasted for about 4 weeks.  She would get her Nplate, the next day she would throw up, she would be okay for a few days and then end up on the couch for a whole day.  It broke my heart seeing her sick and since we didn't know what was wrong we decided she needed to she a Gastro doctor, Jordan has 3 autoimmune disorders and we were wondering if something new popped up.  I knew in my gut it was the medication and I hated having to bring her to another doctor.

Well the Gastro doctor thought it would be best to do an endoscopy and a colonoscopy, which we did do just to make sure she doesn't have Crohn's or Celiac Disease.  She was a trouper about the testing and did great.  In the end she had a little inflammation although not enough for them to think it was anything important.

Now we have had all this testing done and proof that it is not something else so we asked to lower the dose of Nplate.  As soon as it was lowered she started feeling better.

***Update***

Fast forward to May 2014.  Jordan is off of all ITP meds and doing great.  I will update on this at a later date.