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!

The Sun Chronicle

last week Jordan and I went to Attleboro to meet with the other members of the Rare Disease United Foundation and the Sun Chronicle was there to interview us.

Check out the article at The Sun Chronicle.

It is a great artcile and is helping us spread awareness about who we are. 

Regional Director of Massachusetts

It is official I am the Regional Dicrtor of the Massachusetts Rare Disease Community chapter of the Rare Disease United Foundation.  We are a non-disease specific not-for-profit organization. Our mission is to build a strong rare disease community in Massachusetts, to provide support and information to our families, to raise awareness and to advocate for our families.

If you are interested in more information leave me a comment and I will get back to you.  At this time I do not have an email for the foundation set up because our website is under construction.

My favorite thing about being a part of this group is that we are non-disease specific.  There are so many organizations for specific disease while there are 100 of more diseases out there.  We all have the similar struggles, hopes and dreams and just because our disease are different doesn't mean we can't help each other.

We look forward to working on behalf the the rare disease community in Massachusetts. Thank you!!

DNA Day

I am so excited to be a part of this wonderful organization.  I cannot wait to get started.  We are mothers, fathers, grandparents, guardians, doctors and patients looking to make a difference in the rare disease community.  We are a non disease specific not-for-profit organization that started in Rhode Island, is moving into Massachusetts and will soon be all over New England.

Check us out on facebook or at the Rhode Island Rare Disease Foundation website, which is under construction at the moment.

If you are interested in support groups, fundraising or if you have any questions please contact me at mrdfwf@gmail.com

I love someone who is RARE. Do you?

Did you know that there are over 7,000 Rare Diseases and new ones are discovered all the time. 

RARE is Everywhere and I want to spread the word about supporting RARE because even though alone we are RARE together we are STRONG and sometimes I just need the stregnth of others.  You may not even realize that you know someone who is RARE, but I bet you do.

Rare and genetic diseases affect 1 in 10 Americans, 30 million people in the United States, and 300 million people globally.  Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes.  The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases on of the mst deadly and debilitating for children worldwide.


While at Lobby Day we were shown the Global Genes Project video that is below.  It does a wonderful job of showing how important staying connected is and how you really aren't ALONE.

http://www.youtube.com/embed/BmBXJyhTyJ0

When it is your child that you watch suvering day after day you want to stand up and shout at the world, hey listen to me.  Well today I am shouting..if you are listening and want to help spread the word contact me.  Maybe you can help figure out what is wrong with my child and if not mine maybe someone elses.

Soccer, Soccer, Soccer

Soccer games for the spring season started today and I love soccer season.  We see friends we haven't seen in months and I love watching the kids play.  They have played on travel soccer teams since they were little and it is so nice to see them still playing with the same kids years later.

Devon's team was in Division 1 last season and they did not have a great season.  They didn't win a game all season and started fighting a lot.  Since Devon played goalie for most of the season he was very frustrated and almost did come back.  We encouraged him to play with his team because it is their last season together and they got moved back to Division 2.  Well they played great today, worked together and ended up with a 5-1 win.  It was awesome to see them working together as a team again and having a great time doing it.

Jordan's team played Division 1 last season and while they didn't win a lot of games they held their own and are back in Division 1.  Jordan's team has played together since they were 5 years old and I am always in awe of how well they play together.  Unlike the boys they never give up and usually dominate the field.  Even if they don't win, which today they did not, they still give it their all.

Today was hard because it was the first game of the season and Jordan was very nervous.  Then the game became very intense and she ended up not playing at all.  It is hard to watch all her friends playing and she ends up crying on the way home.  Her coach is great and usually plays her even if it is a few minutes.  I think sometimes she gets caught up in the game and knows that Jordan doesn't always want to play.  It is that fine balancing act between trying to win and playing everyone.  When Jordan first got sick she didn't mind only playing 5 minutes a game, now it is starting to bother her a little.  The good thing is her coach usually makes up for it in another game.

It's just another part of life that we have to watch our children go through.  They aren't always going to be the best at everything and sometimes you just don't get to play the game.  Doesn't mean you sit down and become defeated by it, it means you get back up and try twice as hard.

First Dance

Jordan has her first dance tonight.  I am looking forward to listening to her and her friends get ready before the dance.  I cannot believe that she is growing up so fast and I am so happy that she is able to experience these wonderful times being a kid.

She had to grow up so fast because of all the illness she has experienced and we expect so much from her that I love being able to sit back and just watch her.  She has developed into such a beautiful young lady and I am looking forward to many more years of dances.

New York Skyline

We spent this past weekend with my whole family. It was such a fun time being with everyone and watching my brother and his fiance get married. They looked so happy and it was such a special night. I enjoyed seeing family and friends that I haven’t seen in a while and catching up with everyone.

I was a little nervous because I knew it would be a long weekend with lots of action and late nights. I didn’t want Jordan to over do it and I was glad when on Friday night she decided to go to bed instead of going down to dinner. I meant I didn’t get to have dinner with everyone, but that was okay with me. Having her fall asleep at 8:15 made me relax a little. She did push the limits like she always does. While staying in hotels was necessary, I didn’t like the whole pool situation. Knowing her younger cousins would want to swim I let her bring her bathing suit. Of course I think I had a 100 little heart skips as I watched her swim underwater. In the end she had a great time and I managed to keep calm for most of the swimming.

The day of the wedding was a very long day. It started at 6:00 am and went until 1:30 the next morning. I know my family will have many great memories of Rob and Natalia, the many many pictures we had taken, the New York skyline, the dancing and all the food. Good think he is the last one to get married because I think he outdid the rest of us, it was beautiful.

Now that we are back things are moving along as always. Jordan went today for blood work and her platelets are 123K. She says she is just Whatever about the number although I wanted to jump up and down and scream for joy. Here’s hoping my enthusiasm isn’t too much. She is still on Nplate and she has no restrictions from the Hemoc doctors. Neurology is a different story, and one we are working with.

Soccer season starts this weekend and I am looking forward to seeing our friends and have a great time together. We wish you all luck and happiness with whatever you are doing to enjoy the nice weather we are having.

His artistic eye goes beyond drawing

Devon has an artisic eye that he did not get from me.  My brain works in lines and shapes, I can barley draw a stick figure.  My mother on the other hand is an excellent artist.  She tells me all the time, "It's easy.  You just look at something and draw it." Yeah easy for her because she can draw, not for me I can't.  Devon has gotten this talent and over the years I have loved watching him create these beautiul pieces.  While I can't draw I love photography and have always tried to take artistic pictures.

I finally got a decent camera and played around with it.  I came up with the following photos.

Then Devon borrows my camera for a few hours and comes up with these pictures.

I was like what the heck how can you have my camera for a few hours and take these pictures.  I was proud of him and a little frustrated.  When I got to this picture I was like maybe instead of drawing you will go into photography.  He amazes me everyday.  I hope no matter what he does that he never loses his love for teh arts and keep moving forward pursuing his dreams.

 

Happy Easter!

Every year we do Polish Brunch for Easter.  In my family that means, kielbasa (usually 3 different kinds), ham, hard boiled eggs, bread, and horseradish.  It has been this way since I was a child and my father was a child.  It has never really bothered me and my children have grown up with this tradition.  This year Devon said "Mom, it is all meat, there are no veggies at all"  It looks like next year the tradition will be changing a little and we will be adding veggies.  Finally my vegetarian 14 year old took a stand we are changing a tradition for the better.

We also colored Easter eggs a little different this year.  Devon has been drawing for years and instead of coloring eggs he put DevArt onto the egg.  I am always amazed at how he can come up with these designs, my mind so doesn't work that way.

I am looking forward to the rest of the wonderful art work Devon will do over the years!

Today, while it was a wonderful day, Jordan had a hard time.  Big crowds bother her and her mood becomes very irritated over time.  After being with family for about 3 hours she had a melt down and needed to be a lone for about 20 minutes.  While I understand this is because of her illness and possibly her medication it is still frustrating.  We went through this back in 2010 and it was very hard on every one in the family.  My hope is the doctor's will start talking about giving her an autoimmune medication again.

 The kids had a great morning at home and then Jared got this new hat.  He has been looking for a white fedora for about a year and finally he has one. 

Happy Easter! Enjoy the day!

It's Been A While

Well it has been a while since I have been here and much has changed. 

First, Jordan's ITP has turned chronic and we are trying an experimental medication so she can play soccer.  It seems to be working although we are also going to try and change her diet to help as well.  It is very hard to tell an 11 year old that they need to stop eating, grains, dairy, candy, sugar, ice cream and just about everything else they like.  We have started taking small steps and I will write more about that journey later.

Second, she is in 5th grade and doing great.  She joined a bowling league because she was not able to swim, which is her favorite sport. At first bowling was a struggle and very frustrating.  By the end of the season she was bowling a 146 and now kicks my butt when we go together.

Third,  Jordan and I went to Washington D.C. for Lobby Day.  This was a wonderful experience, which requites further explanation later.  I will say I was so proud of her for telling people her story and sharing everything.  It was amazing to watch her grow right in front of my eyes.

Lastly, the day we got back from Washington Jordan had a seizure, after being seizure free for over 2 years.  Since then we have been going back and forth between our home and specialist in the Boston area.  It has been a struggle to realize that she may have to deal with seizures for the rest of her life.  I am hoping that the Boston doctors will be able to figure something out or at least listen to why I think it is more Autoimmune related than just Epilepsy.

On top of everything with Jordan I have started working part time, Jared and Devon are on Varsity Frisbee and Jared is getting ready to take his permit test.  Life keeps moving forward and I just have to enjoy the ride.