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.

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