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.
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