Sunday, June 13, 2010
Day with the Doctor
We had another appointment with the neurologist this past weekend and it went smooth. I took a list of questions with me to ask and she took the time to answer the questions I had. I asked her why she did not want to start him on the Alzheimers meds and she stated that she has researched it and she said that nobody has ever been treated with alzheimers meds that have MLD, she didn't know that I was not working and she did not want Jaren to try something that she didn't know what the outcome would bring while he was home alone, she stated that sometimes the meds can make the patient more aggressive, she said she is willing to give it a try knowing now that I am home with him but she would like to give the Depakote another try before trying something different. She asked him to fold a piece of paper in half and set it on the floor and he could not figure out how to fold it in half he kept folding it into thirds and then he just gave up and threw it back on the table, after we left the office I was wondering what that kind of stuff means, and what is going through the doctors mind when he can't fold the paper in half. She also mentioned that she would like to start working on getting Palliative care for him which is like hospice but when you are on hospice your life expectancy is supposed to be under 6 months with palliative there really isn't a life expectancy limit, but it will help me out with respite care so that I can have some freetime to myself and she stated that it would also somehow give the kids a break I am not really sure how it works yet but I should find out this week I hope.
Tuesday, June 8, 2010
Beginning of Summer
Yay!! school is finally out for the summer. I love having the kids home for the summer, plus it is one less thing I have to do during the day when they are out of school. I love being home with the kids in the summer this is the first summer I have actually spent it at home, before I was working at the insurance agency I was always crossing so I was never really home, I LOVE IT!!!! The kids have been so helpful we are able to actually get the house organized we have been doing a project a day and it doesn't feel so overwhelming. We are planning a trip to Washington at the end of this month to see my brother and his family they are going through the LDS temple it will be so nice.
We have a busy week ahead of us, tomorrow RaKelle has to have 2 teeth pulled and then Friday we have another appointment with Jaren's neurologist, I have a list ready to take with me for all of my many questions, including what the reasoning is behind not letting him start Alzheimers meds. He has been having a hard week also so I am glad he is going in on Friday, some days he is so on and he knows everything and somedays he has no clue what is going on. Today I asked him what day it was and he had no idea, I also asked him what year it was and he also had no clue, somedays are hard to see him like that he will ask questions sometimes that make no sense or say off the wall things and I will look at him and say do you know what you just said and he says "NO" did I say something. Another thing that has been driving me crazy is he is deathly afraid of spiders and it was never a problem before he makes one of us be downstairs with him because he is so afraid of them he wants someone to be there so that they can kill it. He woke up in the middle of the night one night and jumped out of bed and said why do spiders always have to be in my bed? I sat up and there was a little tiny tiny spider crawling it was smaller than an ant, needless to say I didn't sleep a whole lot that night because he was so worried about spiders. Some nights he sleeps well and doesn't wake at all some nights he is up every hour. He also has little ticks that he does, like bite his teeth, clearing his throat, and now he does this little noise thing I haven't figured out yet how else to explain it, it isn't like a moan but it is very disturbing especially when you are sleeping! I will update after we make a visit to the neurologist and hopefully we may get some kind of answers to some of my many questions.
We have a busy week ahead of us, tomorrow RaKelle has to have 2 teeth pulled and then Friday we have another appointment with Jaren's neurologist, I have a list ready to take with me for all of my many questions, including what the reasoning is behind not letting him start Alzheimers meds. He has been having a hard week also so I am glad he is going in on Friday, some days he is so on and he knows everything and somedays he has no clue what is going on. Today I asked him what day it was and he had no idea, I also asked him what year it was and he also had no clue, somedays are hard to see him like that he will ask questions sometimes that make no sense or say off the wall things and I will look at him and say do you know what you just said and he says "NO" did I say something. Another thing that has been driving me crazy is he is deathly afraid of spiders and it was never a problem before he makes one of us be downstairs with him because he is so afraid of them he wants someone to be there so that they can kill it. He woke up in the middle of the night one night and jumped out of bed and said why do spiders always have to be in my bed? I sat up and there was a little tiny tiny spider crawling it was smaller than an ant, needless to say I didn't sleep a whole lot that night because he was so worried about spiders. Some nights he sleeps well and doesn't wake at all some nights he is up every hour. He also has little ticks that he does, like bite his teeth, clearing his throat, and now he does this little noise thing I haven't figured out yet how else to explain it, it isn't like a moan but it is very disturbing especially when you are sleeping! I will update after we make a visit to the neurologist and hopefully we may get some kind of answers to some of my many questions.
Friday, May 28, 2010
May 28, 2010
I have a lot on my mind right now so I am just going to write it all down.
I met with our bishop the other day and talked to him about how we are going to survive when our tax returns are gone and what I would do with Jaren during the day and that I can't put him in a home for 90 days. He firmly believes that I need to be home with the family right now and he is so willing to help me find ways to earn a living and still be able to take care of Jaren and his needs and also with the children. Bishop Sundberg is a great person and he has helped us in many many ways. We are blessed to have him as our bishop right now, there is a reason that he is our bishop for the time being.
Our family also had the opportunity to go and see How to Train your Dragon, we all loved this movie,there was a very important person that treated us to the movie and he made us buy popcorn, the kids were in 7th heaven. We go to the movies sometimes but we usually wait until they are in the dollar movies and then we usually don't buy popcorn but it is good to get out somewhere together and the dollar movies are not that expensive to take the whole family. Thank you so much to that special person that allowed us to go see that movie together and get popcorn and we were even able to buy drinks!! you truly are a great person.
I met with our bishop the other day and talked to him about how we are going to survive when our tax returns are gone and what I would do with Jaren during the day and that I can't put him in a home for 90 days. He firmly believes that I need to be home with the family right now and he is so willing to help me find ways to earn a living and still be able to take care of Jaren and his needs and also with the children. Bishop Sundberg is a great person and he has helped us in many many ways. We are blessed to have him as our bishop right now, there is a reason that he is our bishop for the time being.
Our family also had the opportunity to go and see How to Train your Dragon, we all loved this movie,there was a very important person that treated us to the movie and he made us buy popcorn, the kids were in 7th heaven. We go to the movies sometimes but we usually wait until they are in the dollar movies and then we usually don't buy popcorn but it is good to get out somewhere together and the dollar movies are not that expensive to take the whole family. Thank you so much to that special person that allowed us to go see that movie together and get popcorn and we were even able to buy drinks!! you truly are a great person.
May 28, 2010
Today was a day that will be forever missed when Jaren decides to move on to the next life. What a great day it was Ashlyn's father activity day at school and she was so thrilled when Jaren was able to make it to her school and spend the afternoon with her. She kept telling me that she would remind dad that he has to throw the ball soft when they played Bombers which is like dodge ball, and he had to kick it softly in kickball. She loved every minute of it they got to eat lunch together and just spend some time together and can I tell you what she has not picked on her dad once today and he hasn't picked on her so nice for me. Tonight we were sitting at the dinner table and Jaren says today was so much fun that I can't wait to go next year, the problem with that is that we don't have another 3rd grader for 2 years so he won't be able to go next year. I hope he can make it to Braxton's 3rd grade father activity day what a blessing that will be.
We also got to attend a fun run at the children's school, and to see their faces when they crossed the finish line was amazing. They were excited that we were able to come and see them even if they didn't win 1st place they ran the whole way and did a great job. Maybe I am a baby but I was almost in tears when they came around the corner smiling ear to ear because we were there, and because we won't always have times like this forever.
We also got to attend a fun run at the children's school, and to see their faces when they crossed the finish line was amazing. They were excited that we were able to come and see them even if they didn't win 1st place they ran the whole way and did a great job. Maybe I am a baby but I was almost in tears when they came around the corner smiling ear to ear because we were there, and because we won't always have times like this forever.
Emotional breakdown
Our oldest daughter RaKelle had an emotional breakdown the other night and I was so glad that she opened up to me and talked to me about it. She wrote a composition for a piano recital that she had a few weeks ago and called it "Sweet Heaven" her teacher saved it on a thumb drive and played it on an electric piano it was beautiful, she has been taking piano since October and I am amazed at how fast she has learned. Anyway I found her in her bedroom crying and I asked her what was wrong and she threw herself in my arms and started crying saying she didn't know why, I asked her if she wanted to go somewhere private and talk and she said "yes" I was a little shocked she does not open up to me very often. She said she was thinking about the song she wrote and she told me that the song was written for Jaren and she just started thinking how hard it will be when he passes on, she asked why does it hurt so bad and it feels like I will have a hole in my heart forever. I told her you will have a hole in your heart and it will never get filled and nobody will ever take her father's place and the hurt will get better with time but we don't know how long it will take. I went with a friend the other night and she stated that we will be surprised at how much we have already grieved but it will not make it easier we just might be ok faster than someone that passes suddenly. Thanks to wonderful friends that help me through rough times.
Braxton's Letter
Dear Dad,
I love my dad because he is the best dad ever, he is so nice to me and cause he is the best dad ever. I love him so much. I am so nice to him too. I do the dishes with him, I'll clean my room, I'll watch a movie with him and play star wars with him because he is the best dad ever.
Love,
Braxton
Braxton is just learning how to spell and write so I wrote his letter but I wrote everything that he said, I didn't change any of it. I love this letter writing.
I love my dad because he is the best dad ever, he is so nice to me and cause he is the best dad ever. I love him so much. I am so nice to him too. I do the dishes with him, I'll clean my room, I'll watch a movie with him and play star wars with him because he is the best dad ever.
Love,
Braxton
Braxton is just learning how to spell and write so I wrote his letter but I wrote everything that he said, I didn't change any of it. I love this letter writing.
Friday, May 21, 2010
Ashlyn's letter
Ashlyn's letter needs a little bit of background before I type hers. Ashlyn is 9 she has been having these horrible nightmares one was about her riding her bike and her dad was standing on the sidewalk and she ran over him on her bike and it killed him, and he letter states some things about that and I didn't want people to get the wrong intentions. She also picks on Jaren and they fight constantly.
To Dad.
I love you dad I hope you will never die because I love you a lot, I never want to kell you please don't heart(hurt) me if you don't I won't heart (hurt) you because I love you a lot I never want to kill you if you die all (I'll) be sad please write back on the next page
Love Ashlyn
They are loving this letter writing memory book, they keep saying we can have these letters forever huh mom? I am so glad they have an opporunity to share their feelings on paper and be able to get a letter back from their dad while he is still capable of writing his feelings down.
To Dad.
I love you dad I hope you will never die because I love you a lot, I never want to kell you please don't heart(hurt) me if you don't I won't heart (hurt) you because I love you a lot I never want to kill you if you die all (I'll) be sad please write back on the next page
Love Ashlyn
They are loving this letter writing memory book, they keep saying we can have these letters forever huh mom? I am so glad they have an opporunity to share their feelings on paper and be able to get a letter back from their dad while he is still capable of writing his feelings down.
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