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!

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

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!

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.

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!

Back in the PICU

I wish I was home with my family watching a movie or decorating for Christmas, I have a huge head ache and I need a drink. Jordan had 2 more seizures today. The first one was pretty bad and lasted about 2 minutes, although possible longer there is still some debate on that. The second one was 30 seconds and we were already at the hospital when it happened.
It was decided that because of what happened yesterday and today she would be admitted into the PICU. Jeff is with her now. She has not had a seizure since 6:10 PM and we are hoping it stays that way. We have no idea why all of a sudden she is having them again. It could be something is wrong with her; it could also be that she has built immunity to one of her seizure medications. When I talked with her doctor this morning he said that the Clonazepam is not really a good long term medication for seizures and he was thinking of weaning her from it, the questions was going to be if we needed to adjust her other medication or add something else. Well it looks like we will either be upping her Keppra or adding something else.
Right now she is sleeping and very confused. She is not talking at all and almost reminds me of when she first started coming out of the coma. Part of that might be the Valium they gave her; she gets very agitated and upset on it, part of it might be her waking up from her seizure. We have no idea how long her postictal state is because she has never really had seizures other than the first one.
So it looks like she has a seizure disorder, which we don’t know what it is. We are going to have to learn how to deal with it and to teach the boys what to look for. It will be learning experience for all of us and something we will tackle together.
Thank you for all the love and support you have given us. We know she is in good hands at Baystate and we are hoping this is not a huge step backwards.
Loves, Hugs, God Bless and Good Night!

Happy Birthday!

15 weeks ago we did not know if we would be celebrating this day. 15 weeks ago we were fighting for her life and not thinking about this day. 15 weeks ago we could only hope she would be where she is now. So today we say “Happy Birthday Jordan”

9 years ago at 1:22 in the afternoon on November 16th Jordan came into this world. She changed our lives forever. We have watched her grow from a crying, cranky baby to a spunky toddler. As the years went on we saw her change and mature into a wonderful, kind child.

Now we are so thankful to be celebrating her birthday, this milestone, which we will hold in our hearts forever. We are so truly blessed to have this day and all the days we have been given. She may be 9, although at times I think she is turning 13, that day will be here before we know it.

I do not think I will ever be able to express how happy I am today and how grateful I am. I understand how fortunate we are to be celebrating this day. Thank you for your strength, courage and love it has gotten to this wonderful day. Going through this has reminded us of what is really important in live.

Jordan is so excited for this day. She asked for a signed guitar from her favorite band Shinedown. While she is not getting a guitar, we did manage to get her an autograph from the lead singer. I cannot wait to give it to her.

Happy Birthday to Jordan! Thank you for all the prayers and thoughts they have meant do much to us and I know it is because of you that we are able to celebrate her wonderful life today.

Shaving her Legs

Last night as Jordan is getting ready to take her bath she asks me about shaving her legs. I inform her in the nicest way possible YOU ARE 9, there is no reason to shave your legs. I'm like kid, shaving sucks and it is not something you want to start doing this young.

She was like mom I really want to shave. My hair is dark and I think I should. Again, I told her please do not shave, when you are in 6 th grade we will talk about it again. Besides it is winter here and I don't even shave in the winter.

I'm sitting on the coach watching TV and she comes out and says "Mom, don't be mad" That is a sure sign that she did something she wasn't supposed to. "I shaved my legs. I know you said not to, but I wanted to and you can't be mad because I was honest with you." Then she proceeds to let me feel her leg, smooth as a baby.

I ask her "Did you cut yourself? Can see how well you did?"

"No, I didn't cut myself, look"

She right she did not cut herself. I had to hold back the laughter though as I looked at her leg, she shaved the bottom part of each leg, in the front, skipped her knees and then shaved the top part of each leg, in the front.

So now I either have to help her correct it so all the hair grows even or I just let it be. She will be scratching and complaining, although she will have learned her lesson. So for now we are leaving it, until of course she tries again.

I never thought that I would have to deal with this at 9! Here's looking to many great years of shaving! At some point she will learn to HATE IT!

Band Day Take Two

When I first started this blog I talked about Band Day at the University of Massachusetts. It is hard to believe that was two years ago and that I only had one child attending band Day.

This year my life has changed so much because of what happened to my daughter that I feel we should live life to its fullest and seize every opportunity we are given. With that said my oldest son's school was not participating in Band Day this year, so I contacted UMass myself. Being a typical 13 year old he wanted nothing to do with this. "Mom, I've already been to Band Day, I don't need to go again."

Me "It is a great experience and maybe you will learn something new"

After listening to complaining for about 10 minutes I was like "Dude, either you are going or I am taking the XBox away starting November 16th." Why am I waiting so long you ask because that is the day his new game comes out.

In the end he went to Band Day. He met up with his brother school and practices with all the kids. At half time, during the football, the UMass band comes on the field and plays a song, when they are done all the rest of the kids step onto the field.

There is nothing like 3,000 students, all playing together and all having a great time. 3,000 students from all over the state come to participate in Band Day. It is so amazing I cry when I see it. I am so proud of my kids and all the other kids that are there, words cannot accurately explain how I feel watching them. Of course when my daughter wanted to leave after seeing her brothers play, they both wanted to stay. So I stayed and got to see an awesome show put on by the UMass band.

After the game is over the UMass band performs for all the students and families. This year was extra special because their band director recently and suddenly passed away. The students dedicated this Band Day to him and it was an amazing thing to watch. Their band director died in September, while en route to Ann Arbor. The band was playing at the football and other the students were upset by their lose they still played.

They are a wonderful group of adults and I know my children learned so much from them.

First Swim Meet

First swim meet of the season was tonight. Jordan lasted about 20 minutes at the meet and then she wanted to go home, so Jeff took her home and I stayed with the boys.

The boys did great at the meet, although I think they were tired and Devon has been sick.

I had an interesting time at the meet and I asked the boys "Why do you think things like this always happen to me?" Jared said "because you are the only one that bothers to get involved."

I am not sure if that is a good thing, although in this case it was. There was a parent from the other team, who was angry at some of our swimmers and he started yelling at them. When I looked over he was yelling at an age coach and the other kids were walking away. I learned that he was yelling at the kids because they had been throwing water and they got the back of his pants wet. (he had asked them to stop throwing water and I had said something to them as well) The reason he was yelling at the age coach was because she was protecting our swimmers and all he heard her say was "Coach" so he thought she was an adult.

Of course me being the person I am, I had to step in. When he started yelling at me I just could not take it anymore. I was like you are yelling and angry because kids were fooling around and your pants got wet. I tried very hard to stay calm and when he would not stop yelling I lost it a little and yelled back, maybe not the best decision I have made, I really wanted to say “Dude, it is water on your pants and you are in a pool area, chill out! There are so many more things that are important in life.” I did not say that I said “I will talk to the swimmers and make sure they know not to throw water anymore.”

You would think that would be the end of it right, well no. As I am talking to the swimmers he tries to listen and then yells at me again because he thinks I am making light of a very serious situation. Again “Dude it is WATER.” Thankfully one of the other parents backed me up and the guy left.

About ½ hour later I am going out in the hall to take care of something else and what do you know, the guy stops me again. Now I am like “Really do you have nothing better to do”. Basically he did not feel that I handled the situation the way it should have been handled. So I looked at him and said “Of course I am going to back my swimmers when a parent, one that I don’t know, is screaming at them. She is a high school student that was trying to apologize and you were yelling at her. There is nothing more I can do and it is over.” After all that I think he still left angry that it was not taken care of to his satisfaction.

Life is too short to worry about water on your pants. It will dry and you pants will probably be fine. I guess for me, I don’t think you should yell at kids because they are acting like kids. Also, I know how precious life is. I hope that he goes home and realizes that everything will be okay. I pray that God helps him find his way because again it is only WATER.

I understand that some of you may not agree with me, and that kids should be yelled at or reprimanded over this, you are entitled to your opinions and if you are ever in this situation you can handle it how you fell is best.

Thanks for all the love, support and prayers!

Good Night and God Bless!

Settling In

I knew this day would come, the day when everyone would be back to work and school and I would be looking around wondering what to do with myself. Jordan is in school today and she is going to try a full day. I am okay with this and I actually think it will be wonderful for her. I know she is looking good and that she does not want to spend all of her time with me. She needs the interaction of other children and a teacher who is going to challenge her.

I worry how is she going to behave, is she going to be able to handle the school work. Will the kids make fun of her if she makes a mistake or will she get frustrated because things aren’t as easy as they used to be? I also worry because she does look so good. Sometimes it is easy to forget that she was very sick, deathly sick. She gets tired easily, although she will deny it. I wonder if she will know what her limit is and to not push it yet. Knowing her she will push the limit as far as she can, we always said that is what has gotten her through this, her determination to prove everyone wrong, her strength and her resolve. I know she will be fine and I am here if she isn’t.

Tonight she decided to swim and I was totally amazed, as always. She swam the whole practice and did not stop, did not take a break and even went first when they were swimming butterfly. Now she is in bed and I am hoping she is going to fall asleep fast. It will be interesting to see how she is tomorrow.

For now we are still taking it one day at a time. Jordan still has PT twice a week and Thursday she is seeing a speech therapist, so working right now would be very hard for me. Even with her in school she still has lots of appointments to go to and I believe she is going to need breaks every now and then.

So for now I will do what I have been doing for the past couple of months. Thanks for all the love and support.

Blue Balloon

The other day I was talking to a friend about everything that happened to Jordan and how it has changed my life. This friend is very spiritual and I was telling her how I had not really felt God in my life for a long time. I had some difficult experiences with the church when I was younger and while I felt religious I had walked away from the church. When everything started happening with Jordan I started to pray. In the years leading up to this trauma, I talked to the kids about God and Jesus and I talked to God, I just never felt very connected.

So this friend told me the following story:

She said that she is always asking God to show her signs. She knows that He is there and she is always talking to Him and believing in Him, although she would still ask these things of Him. One day when she was talking to God she said “I would like to see a white balloon in the sky.” I know it sounds a little strange, I think we all have different things we would like to see just to prove that someone is listening to us. A few days later it was a cloudy, dreary day and she was driving home from work. As she got across the bridge she looked up and there was a blue balloon in the sky. It was not exactly what she asked for although if God had given her a white balloon she would never have seen it.
When I got home I was so moved by our conversation and the story she told my family about it. The next day we were driving to soccer and Jordan says “Mom look it’s a blue balloon.” Sure enough right in front of us in the sky was a blue balloon.

I know it sounds silly, I think God was trying to tell me all was going to be okay. I remember the first night Jordan was in the hospital her brain would not stop seizing and I stayed with her the whole time. At about 4:30 in the morning I could not take it anymore and I went to get something to eat. I had the best grilled cheese sandwich in the world. As I was walking back to Jordan’s room I saw the sign for the Chapel so I detoured to the Chapel. I remember sitting down and talking to God. I started to cry and I said “I have made a lot of mistakes in my life; my children are not one of them. Please watch over her and protect her.” I sat there for about 5 minutes crying and when I left I felt more at peace.

I guess what I am saying is believing is half the battle. Through this whole experience I find that I talk to God more and more. I have learned to believe in things that I cannot see or control. I know that there are many people praying for my family and I believe somewhere in the universe someone is listening.

Picket Fence

Jeff Dunahm - D-Cup Diabtribes

This past weekend I had some much needed mommy time. With everything that has been going on and having to keep the peace between everyone in the house I really needed to get out, laugh and spend time with friends.

First I went to Jeff Dunham with some wonderful friends. I have not laughed that hard in a long time. The show was great and he talked about a restaurant in my home town, a restaurant that my friends and I love going to for drinks, laughs, dancing, and food. I must say I have not heard my home town mentioned more than that night. So because he talked so much about this restaurant we just had to go there.

Once there we saw a bunch of young football players with "Gamecock" on their shirts. They were so funny and all I could think was please don't ever let my daughter date a guy who wears "Gamecock" on his shirt.

The very next night I went out again, I know to nights in a row, crazy. This time I went to see the play D-cup Diatribes. With October being Breast Cancer Awareness month I thought this was a great play to see. It is a one person show about women and the different phases of life with respect to her relationship with her breasts. I laughed, I cried, and had an amazing time. The show was awesome and I think my favorite part was the 11 year old girl; the actress did a superb job. She was funny, witty and brought to light many issues and feeling women go through, with respect to their breast.

For more information about the show check out her website at:

http://www.thedcupdiatribes.com/DCD/HOME.html

Hitting Her Head

Jordan went to school yesterday for picture day and then asked if she could stay the whole day. I figure every time she shows interest in staying at school we should let her and thankfully the school feels the same way. So she stayed at school for four hours and did not stay for tutoring afterwards.

She really did not tell me much about her day and when I asked her if she wanted to go back tomorrow she said “No, not really.” I am thinking that she likes the idea of being able to go to school when she wants. I have not been forcing her so when January comes I am hoping she will be ready to start back. If she is not ready for full days by then we will have to continue with half days or work something out.

When Jeff got home he was horsing around with him and they were in the other room. The next thing I hear is this LOUD and I mean a DEAFENING sound come from her room. I ran into the room to see Jordan lying on the bed and Jeff telling me she hit her head. She has been on his back and when he sat down she leaned back and was a little too close to the wall.

I got down to her level and asked her if she was okay and she informed me, as always, that she was fine. So now I am not sure if I will be able to sleep tonight. I believe she is fine and that there is nothing wrong with her, I am just not sure. I think that was my breaking point for today. All I want to do is sit down and cry. I think the stress of the situation has started to catch up with me.

I am ready to go to the doctor. I am ready to ask what happened and pray for some answers, I am ready to lower her medications and see how that works. I say all of this now and I know in a month and half when they lower her medication and they still don’t have any answers it won’t be any easier and I will have a whole set of new fears.

For now life is going forward as always. We continue to thank you for the love, support, and prayers you are giving us. Your strength and encouragement have gotten us through this and it will continue to do that.

MRI

Jordan went for an MRI 2 weeks ago and we had not heard anything as of today. I was thinking I can’t wait until December to find out the results of this test so I called the Doctor’s office today. I left a message for the Doctor and prayed that he would call me back today.

After Jordan and I brought Jared to school we went o Barnes and Noble, where we tried to do some work. Jordan did about 2 problems and then she stopped, I started paying attention to the things around us and asked her “Why did you stop your work?” She told me that she could not concentrate because it was too loud. There were two guys talking, the music was playing and people were walking all around us. I asked her what she thought it was going to be like when she went back to school. She told me school was fine because she just had Mrs. Fournier. Now I am wondering how school is going to go when she starts with all the kids.

Now back to the MRI. I got a phone call from the nurse at the doctor’s office. I know the suspense is killing you isn’t. She told me that the doctor did not get the results, so now I’m thinking great what does that mean. Then she told me “He did talk with the doctor from Boston and her MRI was FINE.” FINE can you believe it, there was NOTHING WRONG with her MRI. Such a wonderful thing and I am so excited. I am so glad that there is nothing wrong with her MRI. I am hoping that in December the doctor will give us a few more answers.

Now we just have to wait and see. Jordan has had so many people praying for her and all the prayers are working. I am hoping that her medications will be brought down a little. While this scares the crap out of me because of the unknown I am hoping that having a good MRI means it really was just a virus. A virus that we have no idea what it was or if it is even out of her system, a virus that could still be there, although we hope it is not.

Thank you again for all the prayers, support and love.

Mic-Key Button

Jordan had her Mic-Key button removed the other day. She was so excited to finally have it taken out. I remember when we first decided she needed it I was a little nervous. I knew she needed it because she was not talking or eating and we needed to get the feeding tube out of her nose. I also knew that as parents we have always let our children have input in things that are happening in their lives. At the time Jordan would not have been able to give us any input and we made the decision ourselves. In the end it was the right one.

The funny thing is that when we got there the nurse said “So we are looking at putting in a different size button.”

Jordan looked at me with sheer terror in her eyes and I said “No, No, No are supposed to be taking the button out today.”

The nurse then informed me that she didn’t have to the doctor’s notes and we would have to wait and see. So when the doctor came in and we started talking I got a little nervous. He asked when she had the G-tube put in, what kind it was and so on.

I explained that it was put in on August 20, 2010 and that when I made the appointment I asked because we were not at two months. I was told that this doctor did not take out G-tubes until they had been in for two months; we were there 2 days early. I explained that the G-tube she had put in was not a Mic-Key button; it was a long tube that came out of her stomach. As I said, at the time I was nervous about this, and now I am thankful.

The only reason Jordan could have her Mic-Key button taken out this day was because of the type of button that was originally put in. If the pediatric surgeon had done the surgery she would have had to wait the extra two days.

Through this whole experience I have learned that someone is watching out for us and that we are blessed. Thank God for all the little missteps along the way because they seem to have helped us.

GLEE

It was an interesting Glee tonight and even more so because I had a wonderful conversation today, with a friend, about God. With everything that has happened over the past few months I have been looking into myself and my beliefs. This episode of Glee is almost a direct correlation between what I was feeling and what happened in my life, while the story line is different because it was my daughter lying in the hospital fighting not my father.

When I was younger religion played a big part of my life. I went to Catholic schools, we went to church on Sunday, and religion was always there. As I got older my experiences and decisions changed my thinking. I always believed in God, I just didn’t always believe in religion. I felt torn, lost without faith. I have raised my children to believe in God, although we do not go to church every Sunday. Then Jordan got sick and my life changed again.

I started talking to God again. I started asking people to pray for us. I realized the power of prayer and God was there. I remember telling Jordan “We are going to prove these doctors wrong. You are going to get better and we are going to make it though.” After that I remember talking to God every day. I would pray for Jordan, I would pray for the people around us. I would thank God for all the support and love that we received.

I started seeing things in a new light and I realized that although my life has gone in many different directions maybe I did need God. Maybe He has always been there and I just needed to just reach out and talk to Him.

Glee did such a good job tonight it was wonderful. It was nice to see how they handled the subject matter. While there are many different religions on the show, they all came together to help a friend, who in the beginning, did not believe in God and did not want their help. In the end I they don’t make him believe in God, although he has a better understanding of what having faith means.

In the end it just makes me realize who I am as a person and what God means to me.

It's Been A While

It has been a while since I have been up this late because of Jordan. I do not think there is anything wrong with her, at least I am praying there is nothing wrong.

The past few nights she has been having trouble sleeping. I do believe it is her medication because if I look at all the side effects insomnia is one of them. I don’t know why I thought we could get away with not having these side effects. She is on so much medication I am surprised some of them have not shown their ugly heads sooner.

She told me I could go to bed, like 4 times. I kept telling her “No, I’m going to stay with you” As if I would leave her alone on the couch. There are nights when I have a hard enough time not checking on her all night, now when she is not feeling well she thinks I’m going to just let her be by herself. I don’t think so. Not to mention that she said her head and stomach hurt. Just to add the icing on the cake.

We watched some TV and I put Brother Bear 2 on at midnight, I think she fell asleep in the first 2 minutes. So now I sit here watching TV praying that she will be alright. I do think we are going to try giving her Melatonin. It is a sleep aid that they gave her in the hospital; we actually had to buy it at CVS because it is not something the hospital keeps in the pharmacy. I am hoping it helps because I am not sure how many all-nighters I can pull, unless I have a couple drinks, some loud music, friends and a dance floor.

I think a nap will be needed tomorrow, for me and for Jordan.

Good Night and God Bless!

Glee

It was an interesting Glee tonight and even more so because I had a wonderful conversation today, with a friend, about God. With everything that has happened over the past few months I have been looking into myself and my beliefs. This episode of Glee is almost a direct correlation between what I was feeling and what happened in my life, while the story line is different because it was my daughter lying in the hospital fighting not my father.

When I was younger religion played a big part of my life. I went to Catholic schools, we went to church on Sunday, and religion was always there. As I got older my experiences and decisions changed my thinking. I always believed in God, I just didn’t always believe in religion. I felt torn, lost without faith. I have raised my children to believe in God, although we do not go to church every Sunday. Then Jordan got sick and my life changed again.

I started talking to God again. I started asking people to pray for us. I realized the power of prayer and God was there. I remember telling Jordan “We are going to prove these doctors wrong. You are going to get better and we are going to make it though.” After that I remember talking to God every day. I would pray for Jordan, I would pray for the people around us. I would thank God for all the support and love that we received.

I started seeing things in a new light and I realized that although my life has gone in many different directions maybe I did need God. Maybe He has always been there and I just needed to just reach out and talk to Him.

Glee did such a good job tonight it was wonderful. It was nice to see how they handled the subject matter. While there are many different religions on the show, they all came together to help a friend, who in the beginning, did not believe in God and did not want their help. In the end I they don’t make him believe in God, although he has a better understanding of what having faith means.

In the end it just makes me realize who I am as a person and what God means to me

MRI

It is funny to think that when all this started it was easier for me when she was in a coma. Yesterday Jordan went for her MRI and I was as nervous as could be. She couldn’t eat so first I had to deal with that. She is used to getting up at 7:00 having breakfast and then eating for the rest of the day. She is a grazer, so not eating all day was very hard for her. She made it through though.

The hardest part for her was the IV she needed because she had to be sedated for the MRI. When you get an MRI you cannot move or the pictured will not come out and the test will have to be redone. Jordan was not happy about the IV so they gave her a numbing patch before they put it in. As we sat there waiting she was getting more and more agitated so instead of waiting they put the IV in right away. She cried and Jeff held her, but she made it through. When it was over she was more relaxed and could not wait for the MRI to start.

I on the other hand could have waited a life time. I was so nervous about the test and what the sedation medication would do to her. As we walked into the MRI room I thought I was going to pass out. The machine is so big, while the tube is so small. Being that I am claustrophobic the thought of lying in a small tube for an hour scared the crap out of me.

The technician looked at Jordan and said “Do you want to watch your movie and try this without the medication.” Jordan jumped all over that. She lay in the bed, put the goggles on and hooked up the head phones. Jeff and I got to stay in the room with her, which was equally as hard for me. The technician told us that she would try the first 2 tests to see how Jordan did; if everything went okay they would continue with the other tests.

I think it was the longest 3 minutes of my life. Not only is the machine loud, and the tube small, I was so worried about her moving that I didn’t know if I could make it through. Funny how this whole experience has been easy for me except for this. I know when she was in a coma I could not control anything, although I could watch the machines and know how she was doing. I helped her when she came out of the coma and as she has gotten better I have been there every step of the way. With this there was nothing I could do except sit and wait. I could not even look at the test to see how it looked, not that I would know if there was something wrong anyway.

After the first 2 test the technician talked to Jordan and she said “I’m okay, I can do this.” So they continued with all the tests. She did move through one of them, the 5 minute test, although they did it again and she did great. There we 6 tests that lasted anywhere from 3 minutes to 5 ½ minutes. Those were the longest minutes of my life.

After the tests were done, which took about 45 minutes, she came out of the tube “I didn’t really need the IV” Funny how she picked up on that right away. I started to cry when she came out. I was so proud of her and overcome with emotion because I am not sure that I could have done as well as she did. She knew that she would be able to stay still for the test and she was not intimidated by the machine or the noise. I was so amazed by her strength and determination.

Jordan had a wonderful day. She did an awesome job and now we have to wait for the results. Thanks for the continued love and support.

2 months

It is hard to believe that it has been 2 months since Jordan got sick. She is looking so good and getting better every day that sometimes it is hard to think just a few weeks ago we were fighting for her life. As time goes on and we move on with our lives there are times when I think we might get slapped in the face all over again. I am not sure when this feeling will pass or even if it ever will.

Sometimes when I lay awake at night I pray that everything is going to be okay. Since we don’t have any answers as to why this happened I am even more afraid. We know that it was viral encephalitis, although we have no idea what the virus is or if it will come back. When life is going along just fine you never think something bad is going to happen. Then something happens and you have to learn how to be normal all over again. I think your definition of normal changes after you are fighting for your child’s life. You don’t want to live in a state of fear just waiting for something awful to happen, so you move forward thankful for every day you have.

I think we have been doing a good job of moving forward and although there are times the fear breaks through, we won’t let it win. We have the strength of our friends, family and everyone here and Jordan herself. She is a constant reminder that things can get better and do.

Jordan starts tutoring tomorrow; she is very excited about learning again. While she still does not have the stamina to make it through a full day we are very excited that she is going to start moving forward with her school work. I know she is happy about this new adventure, although I do have my fears. She has always been a good student and I hope that she does not get frustrated if things don’t come as quickly now. I know that she is in good hands and will do great.

Her physical therapy is still moving in the right direction. She moved forward so quickly that now we are working on fine tuning things. The hope is to have her running again and doing the things she used to. Her running improves every day, although her ankles are still weak and she does not have the endurance to last long. I think she may have turned her ankles in before; I just never paid much attention to it. If need be we can get her inserts at some point.

We thank God every day that Jordan is here with us. We will never forget the horror that was our lives for the past few months and we will not let it control us. We thank you all for your love, support and prayers.

Loves, Hugs, and God Bless!

Jordan's Night

Jeff and I would like to thank everyone for tonight. We had a wonderful time and it would not have been a success without all of you. We are so lucky to have such wonderful friends and family. They all did an awesome job with tonight and there really are no words to truly express how we feel. We are so blessed and grateful to everyone. The most important part of tonight was Jordan and she had a wonderful time.

When we started this journey we had no idea if and when Jordan would be coming home. Tonight she proved everyone wrong by being there and having so much fun. She was painting faces, chasing boys and acting like her normal self. She got to see many of her friends and she loved that. She laughed and played like she hasn’t done in a long time. I was so happy to see her on the dance floor with her friends, dancing and singing.

There are truly hundreds of people that we need to thank for tonight. We tried to go around and personally thank everyone. I am not sure if we succeeded at that, although I would like you all to know that your love and support is truly appreciated.

To our friends and family that put this together. We love you. I know that there is nothing we can do to thank you enough and I know that even if we tried you would tell us to forget about it. This whole experience has taught me so much about how blessed we truly are. You all know who you are and while I would love to list you all I know that I would forget someone, so know that if you are ever in need of anything please know we will be right there for you.

Around 9:30 Jordan was done. Her adrenaline was gone and she needed to go home. I went in to say good bye to my friends and of course the band started playing a wonderful song. I started dancing because HELLO I needed a little fun as well. (But she thought I was in side saying good bye, then she walked in side and saw me dancing with my friends and got really mad at me. This is from Jordan)
So I had to leave right away to get her home. She was upset with me at first although after about a half hour she started talking to me again. I apologized because I knew she was tired and I should have left instead of dancing. Right before she fell asleep she said “I’m sorry too mom because I know your friends make you happy.”

She never seizes to amaze me. She is right my friends do make me happy and I have missed going out and spending time with them. I explained to her that while I love my friends no one is more important than she is. I hope that someday she will have friends that she is as close to as I am to mine and she will understand.

All and all it was an awesome night. Lots of laughs and fun was had and tomorrow morning I will be the loudest at the soccer games because I was home early. Hope you all enjoyed the rest of the night.

We love you all and we will never be able to thank you. At one point tonight I was at a totally loss for words, which is something I am usually not. I was in total awe and amazement at how many people came out to support us. As I have said many times tonight there are no words that will ever truly convey how we feel.

THANK YOU! YOU MADE JORDAN”S NIGHT ONE SHE WILL NEVER FORGET.

Loves, Hugs and God Bless!

Reaching an Understanding

Jordan and I have been spending lots of time together. I know that part of her attitude is her and part of it is her medications. I have been trying very hard to let things go and understand her frustration. I have let her take those first small steps into freedom, while holding my breath.

Today we were watching TV and she was acting silly and dancing around. I had so much fun watching her and I realized that we are going to be okay. I know that we still have a lot of obstacles to overcome and that schooling is a big one, yet I know that we can handle them.

After watching her and feeling so happy I felt the need to apologize to her. I have been a hovering mom, which is something that I am not. I have told her she can’t do things, which is something I usually don’t do. Now I don’t just let me kids run around like maniacs, although some may think that I do. I believe that they are individuals that need to explore their worlds. I believe that they need guidance, although they are able to make their own decisions.

So while she was sitting on the couch I went over and said “Jordan I am very sorry.”

She looked at me and said “No mom I should be sorry because I am the one that is usually angry and mad.”

We had a wonderful conversation about what we would both do to try harder. I was so amazed that while her medications affect her most of the time there are moments of clarity. She understands that this is frustrating and that she is a little different. This gives me hope that when she is finally off her medications she will be the same little girl I have always loved.

Rehab

Jordan is at a point were she is ready for Rehab. We thought that everything was all set and now we are finding out there might be a problem with Insurance.

One thing I will never understand. She has been on the waiting list at the Rehab for almost two weeks and Friday at 4:30 they decide to tell us there is a problem with our Insurance. Really at 4:30, like they could not have told us at any point over the past 2 weeks. She is suppose to be going there Monday, Monday I tell you.

Now I want the best for her and if we have to pay for it out of our pockets then I will. I would never deny her any care she needs to matter the cost. The thing is I thought this is why we pay for health insurance. So when something happens, we are covered.

The problem is the Rehab is out of our coverage area.

Why is that you ask? Because there are no Rehabs in our area. Since there are none in our area you would think the insurance company would have to help pay for it.

I am not totally sure that they aren't going to help. Although now we are going to be in the hospital for even more days then needed. You would think that they would want to get her to Rehab and getting better instead of paying for her to be in a hospital. I know it sounds crazy and at this point I just want to get her where she needs to be to get the help she needs to get better.

I have started the ball rolling this weekend and contacted every person I can think of that might be able to help. Monday morning the insurance company will not know what hit them.

I do not believe in yelling and screaming because I feel it gets us nowhere. I am looking forward to getting this taken care of so that we can get Jordan on the road to recovery.

Sometimes it is just so HARD

Sometimes being a parent is the hardest thing in the world. I know girls go through phases were they either love you or hate you. I was this way with my mom. I never got along with her until I got older and even now I don't always see eye 2 eye with her.

With that said I guess I never realized how hard it can be. When you child is in pain you want to comfort and care for them. You want to make it all better and it seems I am the last person my daughter wants right now.

I know this is a phase and it should not bother me to much, although at times I just can't handle it. I want to help her and make her understand that everything I have done over the past 3 weeks is for her. To make her better and get her ready to come home.

At this point I can no longer do that. She needs help that is beyond me and the best thing I can do for her is get that help.

Years from now when she looks back on this she is going to remember how much she HATED me. Hopefully she will also realize how much I love her and just want the best for her.

I Luv U

Today Jordan had a great day with Jeff and I. She was playing with him all afternoon, laughing and having fun. It was great to see her acting more like herself than she has in the past 3 weeks.

She is doing so many things these days it is crazy to think that 2 weeks ago she was in a coma and we were not sure if she was going to make it. Since then she has started to talk and has learned how to move her bed up and down.

I was amazed last night when Jeff said she was playing a game on the Ipod. I was like what she is playing a game. Is she really play a game and actually making it work. How is that? Are you sure she is playing? Well yeah since she flipped through the pages to find the game she wanted and she started it. No way I was like totally amazed.

Then she said "Which button do I press?" She wanted to know which one was for the light. The first thing her brothers said was, "Wow she really said that many words" It is so funny how she is moving forward by leaps and bounds and we are trying to keep up.

Since all this has happened she has been very angry with me. We have no idea what the last thing she remembers is and we have no idea how much she remembers from her time in ICU. Part of me thinks she is mad because I was the last person she was with when she was safe and she is wondering how I let this happen to her.

Well today she took Jeff's phone and she get to the text message area. Somehow she found my number and she text me "lluv u u"

I was so shocked and impressed and that I started to cry. I can not believe that she is able to text and that she found me or that she was able to text that. It is like her momma for the first time only a million times better. It is amazing to have her tell you something like this. Even if for the rest of the day she is upset I don't care.

There is something to be said about being a parent and days like today only make it better. I think we all have times when we are proud of our kids and right now I could not be prouder of her.

I know it is a small step on a long road, it is a step non the less.

Crazy 2 weeks

The past 2 weeks of our lives have been crazy.

On August 3, 2010 my daughter had a seizure in the back of my car. Thank God we were right by the police station and there was an officer leaving at exactly the time I pulled up. His quick response in getting us help got my daughter to the hospital within 20 minutes of the start so her seizure. When we arrived at the hospital the ER staff was ready and waiting for us. They did an excellent job of taking care of our little girl while keeping us informed of what was going on.

After about 4 hours we were finally able to see her. She was in the PICU hooked up to lots of different machines and she did not look like herself. They informed us that they were trying to get her brain to stop seizing and they were having trouble doing that. I stayed with her all night and watch the EEG machine monitor her brain. Finally at about 3:30 Wednesday morning the seizures stopped. When the doctors came in Wednesday they informed us that they were not sure what was going to happen. They could not tell us why she has the seizure or what the out come was going to be. She was in critical state and they felt that if she waked up there would be some issues with her, and there was a possibility that she might not wake up. I can tell you no one should have to go through this. You can only imagine what it was like to hear that your baby might not make it. Over the next 11 days she was in a medically induced coma. She was on more medication then you can think of and her body processed some of it very fast.

On Wednesday August 11, 2010 they finally weened her off of the medications that were keeping her in a coma. I know some people where hoping she would just wake up and start talking, although I never thought that would be the case. It has now been a week and we are seeing little progress.

She listens to simple commands like sticking out her tongue or rolling over. She knows my voice and calms down very fast when I talk to her.

The road ahead of us is going to be a long one and I can not wait for the day when she is able to say Momma again!