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!
Friday, November 26, 2010
Tuesday, November 16, 2010
Happy Birthday!
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.
Thursday, November 11, 2010
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!
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!
Monday, November 8, 2010
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.
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.
Friday, November 5, 2010
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!
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!
Wednesday, November 3, 2010
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.
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.
Subscribe to:
Posts (Atom)