Friday, December 31, 2010

2010 What a Year

When you have kids stories become before children and after children, time becomes did it happen before this year or after. This year time was measured in before Jordan got sick and after she got sick. Life feels like it has been split in two and there is no going back to the old way. I know there is something that I am supposed to learn from all of this and I still haven’t figured that out. Despite everything that has happened, 2010 was a great year.
Jared had a wonderful year, finishing up his first year at PVPA. He went out for the Children’s Theater Play and got in; we can’t wait to see it in February of 2011. He made new friends and still has fun with the old ones. He became a teenager and is becoming a more understanding human being.



Devon won a poster contest for the Senior Center and started middle school. He broke a record at swimming and still loves playing goalie for soccer. He has made lots of new friends at school and continues to take art lessons.



Jordan broke a record at swimming. She is getting older and older by the day and I always joke that she will go through puberty before the boys.



We visited Texas for the first time. We had so much fun on that trip, going to the Stockyards in Fort Worth and seeing our first rodeo, taking a road trip to San Antonio and seeing the Alamo, the river walk, and Sea World. Getting caught in a hail storm and me thinking we were all going to die in a tornado. Spending time together as a family and making memories that we will never forget.
In August some of that changed. We still made memories that will last a life time, although different memories than before. We have time spent in the hospital, seeing the Spectacular display at Roger Williams, the boys and Jeff going to their first baseball game at Fenway, there are so many I could never list them all. Jordan getting sick was something we could not have predicted and while at times it has been very hard, it has made us stronger and closer as a family. Not only did it bring the five us closer it also brought many wonderful people into our lives and brought people from all over together.

I think it was said best by Jordan’s soccer coach “ In addition to doing a wonderful thing for a wonderful little girl and her family, the benefit brought together parents from different soccer teams here at the Moose who would otherwise never have met. Turns out, our team is not the only team with cool parents! :)”
This statement shows me that not only have you all touched our lives in ways we will never be able to repay; we have touched you as well. As I reflect on this year I am grateful to all the people who have touched our life, the ones that have come and gone and the ones that are still here. Without you all this year would have been much harder.
Jordan goes for an MRI tomorrow and while I hope it gives us the answers we so desperately want, I don’t know that it will. I do think it is the perfect way to end the year. I pray that 2011 keeps us all safe, healthy and happy. I know that if Jordan gets sick again, which I think she will, I have all of you to turn to.
May God be kind to you all and keep your families safe and healthy. I will keep you all in my prayers and know every day I am thankful for each and every one of you.

Happy New Year!

Sunday, December 19, 2010

Hearts and Prayers

While we have been going through all of this we meet people along the way and here other stories of struggle and sadness.  No one every had the same story as you and you will always find people who have it better and worse then you do.  For us we have no idea why Jordan got sick or what is going on with her.  It might be genetic, it might be a tumor, or it could be something else entirely.  Although we don't know what is wrong we at least have forward progress at this point.  After being in and out of the hospital for 3 weeks we are starting to signs of improvement and seeing her personality come back. We are very lucky and happy with this.

Sadly, we have friends who have not been so lucky.  The wife went in for a normal surgery in June of this year and from there things got very bad.  Something happened while in surgery and she ended up having bleeding on her brain.  She fought for 6 long months until finally her battle came to an end on December 13, 2010.  This past Saturday was the memorial service for her and while I did not attend I read the blog her husband had started to keep family and friends informed.

I sat crying over everything that they had been through wishing there was a way to ease their pain.  I watched my daughter dance around the room laughing and being silly, and I cried even more.  I cried because I am so grateful to have daughter acting like herself, I cried for Kellie's little boy and husband who won't be able to share these moments anymore.

Life is so short that we need to live to the fullest, laugh harder, love longer and forgive easily.  You never know when those moments will be taken away and it really does happen in a blink of an eye.  So today when you are saying your prayers or complaining about life remember those who are fighting for their lives.  Kellie is now and angel that will watch over and protect her family.  She will be missed and never forgotten. 

If you are interested in reading more about Kellie's story visit: http://www.jpsupdate.com/Kellie_s_update.html

Thursday, December 16, 2010

Being Home

Jordan has been home since Tuesday.  She is doing well and I am hoping that we can stay home through the holidays.

We have changed her medications a little and they seem to be working.  After much discussion it is believed that she has some sort of autoimmune disorder.  We don't know which one it is and they are doing a bunch of testing so we are waiting.

Hopefully we will have some answers by the first of the year.  More than likely we will not have any answers and we go for an MRI on January 6th.

I am wondering if it can be this simple, she could have a tumor on her ovaries.  If she has a tumor then they would be able to remove it and the problems could all go away.  I am hoping it is that simple although with everything else that has happened with this, I don't think it will be.

Hope you all have a wonderful Christmas and a Happy New Year!

Saturday, December 11, 2010

Trying Everything

Since Thanksgiving we have been in the hospital 3 times.  We spent Thanksgiving weekend there because Jordan started having seizures again and they weren't sure why.  They changed her medications and we went home Monday.

That Friday we were back in the hospital.  This time it looked like drug toxicity.  She has been getting progressively worse as the week went on and by Friday she was non responsive.  When we got to the hospital she had paralysis on the right side of her body and they thought she had a stroke.  She went for an emergency MRI and found that she didn't have a stroke, although they didn't know what was wrong with her.  They adjusted her medications and by Sunday she was delusional. After sleeping Sunday night she seemed much better.

We went home Tuesday and we were back again yesterday.  Again she is delusional and having a hard time with everything.  They are giving her a treatment of medications that will hopefully work and they are adjusting her medications as well.

We are hoping and praying for answers because she was so good for 16 weeks and now she is worse then when she woke up form her coma.

More on delusions later because they are so funny.

Wednesday, December 1, 2010

Sleeping by Herself

Tonight is the first night Jordan is sleeping by herself. When she came home in September I remember thinking “how was I ever going to let her sleep alone again.” Either Jeff or I had been by her side since she went into the hospital. For some reason back in September it was easier to let her sleep alone.
Now I am checking on her every ½ hour. I know she is okay and that the medications are doing what they are supposed to. The problem is that is what I thought last time and for some reason something happened to make them stop working.
I do believe I will feel much better after the doctors tomorrow. I trust her doctor completely and I have so many questions for him. I am not sure how straight forward he will be with us, not to say he won’t tell us the truth, I just think at this point he might not have the answers. So I guess we will just have to wait and see.
On a completely different note, I met with Jared’s teachers today and they had wonderful things to say about him. After meeting with them I am even more proud of him and can’t wait to see him in the Children’s Theater Play. It was also nice to hear that he is doing well with all this craziness going on around him. I know he is going to continue to do well and it makes me realize that Jeff and I have done something right.
Today Jordan and I were watching Hannah Montana and I started to cry. I know crazy over Hannah Montana right, except the episode was about letting your children grow up and it made me think of all the hopes and dreams I have for my children. It made me sad because I don’t want to adjust what they are for Jordan, and I don’t know that I have to, although I might. As we watched the show, I realized that no matter what happens we will get through!