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.

Being Blind

being blind

Sometimes I think I am blind to the situation with Jordan.  I look at her and think there is nothing wrong with her.  She is the same child she has always been and we live our life like we always have.  While this is great and it keeps that normalcy in our lives and our household sometimes I worry it is not the best thing to do.  It is also hard to be blind when she is covered in bruises and petechiae.  They are a glaring reminder that she really is sick

Last week her platelets were 31K and we decided to not treat her with anything.  The Nplate has stopped working and it was making her very sick, she was either throwing up or having diarrhea everyday.  That is not a way to live and it totally sucked.  We were all okay with not treating and seeing what information the doctors could find out about Nplate.  As the week has gone on her platelets have dropped even more.  She is getting frustrated and a little worried about all the bruising and yesterday said “I would not mind taking steroids because I don’t want to have to explain to everyone why I have all these red dots and bruises.  I don’t want to go to school and explain why I can’t play all the games other kids can”  My heart breaks for her.

Platelet Update:

Jordan’s platelets are 6K.  We started steroids today and we went through about 5 different options that we can do.  Some the doctor really likes, some he is neutral about and others he doesn’t like at all.  We have a lot to talk about over the next few days.  One option is an oral medication similar to Nplate.  Jordan is nervous about this one because of what happened with the Nplate.  The other is CellCept.  Since she was on that when her platelets started to drop I am not thrilled with that one.  Although she is nervous at this point we are going with the oral option that is similar to Nplate.  Praying that it will work and she can get back to doing the things she loves.

Today we received her nueropsych eval and I was a little taken back by some of the results.  I had to read it 3 times before it sunk in.  She tested much better this time than the first time although there are definitely weakness that we need to work on.  One of the diagnosis is a catch all which basically means, we don’t know.  What else is new.  The other is a Nonverbal Learning Disability, which is why she has problems with spelling.  Funny because I am a horrible speller so I might have the same problem.  In the end it was a mostly positive report and the things we need to work on we will.

Hopefully over the next three weeks we will get her platelets straightened out, we will work with the school to get her ready for that and we will enjoy the rest of the summer.  I am looking forward to spending time with family, relaxing and just having fun.

We hope you are all enjoying your summer! Thanks for the continued prayers and support!

5th Grade Graduation

Tomorrow is Jordan's 5th grade graduation.  Three years ago this day was just a shadow in my mind.  I never thought she would make it to this day and doing so well.

She has grown so much over the past 3 years, she is as tall as me and she is living life to the fullest.  We are so blessed to have so many wonderful friends and family members that have stood by us through these years.  We would not be here without all of you.  It may sound weird; I think I will be crying tomorrow.  I never cried when the boys graduated 5th grade although their roads were a little easier than hers.  I am so proud of the amazing young woman Jordan has become and I cannot wait to see what the next 3 years will bring.

I know middle school is usually the hardest years of your life.  I am hoping for Jordan they are easier than the last 3 and that the struggles she faces are typical pre-teen problems.  I am not sure if she will go to the boy’s school or not, at this point it doesn't matter.

She made it and tomorrow she will no longer be an elementary school student, she will be in middle school.

Thank you for sharing in our journey! We love you all and will keep you posted as to how things are going.  Enjoy your summer.

Memorial Day!

To all the men and women, fathers, brothers, mothers and sisters, grandparents and friends who have served in the military, who have given the ultimate sacrifice so we may be safe and our values be upheld, we thank you today and everyday.

We hope you get to spend the day with loved ones and remember those who may no longer be here.  We are getting together with family today and I cannot wait to spend time with them.

Things have been very busy here for the past few weeks.  Frisbee has ended for the boys.  Last weekend we were in Vermont for a tournament were they team came in 3rd over all.  This was a great accomplishment for a team so young.  Saturday was states and although we didn't make it to the finals I am still very proud of the whole PVPA Frisbee team and the wonderful season they had this year.

Jordan is doing well.  Her platelets are still over 150K and we are taking one week at a time.  As long as her platelets stay up she will continue to get the Nplate.  I am sure at some point we will take about when she can try to come off that medication although for now we are just happy her platelets are at normal levels.

Soccer will be ending soon and summer will upon us before we know it.  I am looking forward to having a wonderful summer with many new adventures.

Have a fabulous day!