Sunday, March 31, 2013

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!

Saturday, March 30, 2013

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.