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.

Charitable Givings

Jordan has decided that she would like to raise money for Baystate Children's Hospital again this year.  We have a couple things in the works and the first is a calendar of images she took over the year.  She is so proud of this work and is hoping you will take a look at it.  Baystate Children's Hospital holds a special place in our hearts because in 2010 Jordan had a grand mal seizure and was in a medically induced coma for 11 days.  Since then she has spent many days at the hospital and we truly believe she would not be the person she is today if they were not there to save her life.  To the doctor's, nurse's, child life, and staff we will never be able to say thank you enough.

http://www.zazzle.com/through_jordans_eyes-158680700472601999?rf=238279804181451926



Thank you for the support.

A word I never say

Epilepsy is a word I once could never say.  When Jordan had her first seizure, I said she has a seizure disorder.  As time went on I always explained her condition as an unexplained seizure disorder.  When she relapsed this year and her doctor said she had epilepsy I told him he was wrong.  I was afraid of what that word meant and the stigma behind it.  I did not want Jordan labeled with that scary word.  I put my own fears and anxiety onto her because of this one word.

Then this weekend we went to an art opening called The Hidden Truth: the Mind Unraveled.  Devon submitted an art piece to this exhibit and his piece got accepted.

Those are Devon's hands, he does intricate pen and ink drawings.  This piece sold before the exhibit even opened and we are so proud of him.

Now I have a whole new outlook on things and it was nice to meet other people who have epilepsy. Now I can say Jordan has secondary epilepsy, which means she has seizures and they don’t know why. I was amazed by all the people we met who have had epilepsy their whole lives or who had their first seizure a year ago. There were people from around the world. We talked with a gentleman from the UK who has had seizures his whole life, he told us a story of almost having a plane emergency land because he was having a seizure. He was an amazing person who has traveled the world and does not let epilepsy control his life. There was a mother of two boys who is still trying to find the right medications to control her seizures and the artist from Massachusetts who had her first seizure at the age of 38.

Jordan had a great experience being at this event.  She came alive talking with other people who have epilepsy, they understood her.  One said "I never remember having a seizure" and another said "the medications suck".  She related to these people and I feel so much better about her condition.  I have always said she can do anything and now I truly believe it.

Jordan getting sick has always been a double edge sword.  It sucks, I hate it and sometimes I wish it never happened.  Then I think about Saturday night and realize we would never of had that experience if she didn't sick.  We would never meet all the amazing, wonderful people we have met along the way.  It has changed my family in way that is for the best and I love the life I live.