30 June 2012
What a week! Took Chris for ct-scan on Monday. Got results back from doctor; no change from January-THANK YOU GOD! That means no shunt to be put in for now. Chris is still having hallucinations so the doctor upped his Risperdal to 1mg. Chris has been doing really well this week but did have a bad episode saying that mean lady in his room was staring at him. He said why do people stare like that? He said it was mean and upset him and then he let lose crying so hard. My poor baby. I held him and tried to soothe him and calm him down. He relaxed after awhile but he was so upset. He talks alot about his illness and says he asks God every day to please help him. He keeps saying he is going crazy. I tell him he is not crazy, his brain is just doing crazy things. My heart aches when he gets so scared and upset. I love him so! Took Mom to the doctor on thursday; she has a pinched nerve in her arm. Took her to the hospital outpatient for xrays and then went shopping for her. The heat here is too much! I can't believe I'm saying that because I LOVE summer but triple digits is too hot. On the upside, today (just a few hours away) Jim, Chris and I are going to Georgia and North Carolina for 5 days. Chris is very excited to go and has packed and repacked several times. The stuff he packs is pretty funny and interesting. I told him he could take whatever he wanted and he took that literally! :) I hope this will be a stress free trip for Chris. I know that when he is doing things and around Jim and I, he doesn't hallucinate as much or get upset. Some confusion but we plan on him having a great time. Lots of pool time, great food, and lots to see and do. Happy 4th of July to all!
Saturday, June 30, 2012
Tuesday, June 26, 2012
26 Jun 2012
Our trip last saturday to Cub Lake to swim was so much fun. Chris did really good. We all splashed each other and Chris actually moved around in the water quite a bit. Chris and Jim had a big splash fight. It was really hard for Chris to get out of the water. His balance is bad and walking on sand was hard for him. I think it was just new to him so it seemed strange. All and all, a very good day. Yesterday, I took Chris to have his Ct-scan. They let me go in there with him; I wore a lead vest. He was so good. When they were done, he asked the girl if she could see waht was wrong with him. I told Chris that she just takes the pictures and the doctor will look at it and let us know. We went to Ruby Tuesdays afterwards because Chris loves their mini hamburgers. Chris asked me questions about the test again. He asked them in such a mature manor. He looked me right in the eye and said, "Is it serious?" I thought I was going to choke on my water. I have always said I will be as honest as I can be with Chris so I said yes, it is serious. I also reminded him that the doctors are working really hard to help him and that is why he is on all this medicine. I am trying to get us all ready for our trip this weekend. I talked to Mom earlier and she said her arm is hurting really bad and needs to go to the doctor. It frustrates me so much that instead of calling me this morning when she woke up with the pain, she tells me at 7pm and the doctor is not in on wednesdays. I try and explain to her over and over and over that she needs to tell me when there is a problem and she always says I didn't want to bother you, which is bull! So then she acted like a child and I am calling the doctors office tomorrow and see if they can get her in thursday morning. It is so so frustrating!!!!!!! I told her that if she doesn't start calling me when she's sick or hurting or there is a problem, I will get a nurse to be with her everyday.
Our trip last saturday to Cub Lake to swim was so much fun. Chris did really good. We all splashed each other and Chris actually moved around in the water quite a bit. Chris and Jim had a big splash fight. It was really hard for Chris to get out of the water. His balance is bad and walking on sand was hard for him. I think it was just new to him so it seemed strange. All and all, a very good day. Yesterday, I took Chris to have his Ct-scan. They let me go in there with him; I wore a lead vest. He was so good. When they were done, he asked the girl if she could see waht was wrong with him. I told Chris that she just takes the pictures and the doctor will look at it and let us know. We went to Ruby Tuesdays afterwards because Chris loves their mini hamburgers. Chris asked me questions about the test again. He asked them in such a mature manor. He looked me right in the eye and said, "Is it serious?" I thought I was going to choke on my water. I have always said I will be as honest as I can be with Chris so I said yes, it is serious. I also reminded him that the doctors are working really hard to help him and that is why he is on all this medicine. I am trying to get us all ready for our trip this weekend. I talked to Mom earlier and she said her arm is hurting really bad and needs to go to the doctor. It frustrates me so much that instead of calling me this morning when she woke up with the pain, she tells me at 7pm and the doctor is not in on wednesdays. I try and explain to her over and over and over that she needs to tell me when there is a problem and she always says I didn't want to bother you, which is bull! So then she acted like a child and I am calling the doctors office tomorrow and see if they can get her in thursday morning. It is so so frustrating!!!!!!! I told her that if she doesn't start calling me when she's sick or hurting or there is a problem, I will get a nurse to be with her everyday.
Friday, June 22, 2012
22 Jun 2012
Chris went to the Neurologist today and he put Chris on an additional medication, Risperdal, for the hallucinations that he has been having. I hope and pray that this will help him. The doctor also set up another Ct-Scan for Chris on monday, the 25th. I hope he doesn't find anything real bad. The last test showed his ventricles were enlarged with fluid. If it is worse, the doctor will consider putting a shunt in. Chris doesn't know when he has a BM anymore so that is why the doctor wants to go ahead and do the ct-scan now instead of waiting until Oct. Chris seemed really out of it today. Very tired and just not quite with it. When we got home today after all the running around we did, he laid down and promptly went to sleep. He didn't wake up until about 9pm. Tomorrow Jim, Chris and I are going swimming at the state park close to us. Chris is excited about that. For Jims birthday July 3rd, we are going to Georgia for a few days and will celebrate the 4th there also. Chris is very excited about this. There is lots of stuff to see and do and things that Chris will really enjoy. :) Got to keep the boy happy and joyful which is not that hard to do as Chris is so easy going and easy to please. I love my Chris so much! I love my wonderful caring husband so much too for coming up with these great ideas of things to do with Chris.
Chris went to the Neurologist today and he put Chris on an additional medication, Risperdal, for the hallucinations that he has been having. I hope and pray that this will help him. The doctor also set up another Ct-Scan for Chris on monday, the 25th. I hope he doesn't find anything real bad. The last test showed his ventricles were enlarged with fluid. If it is worse, the doctor will consider putting a shunt in. Chris doesn't know when he has a BM anymore so that is why the doctor wants to go ahead and do the ct-scan now instead of waiting until Oct. Chris seemed really out of it today. Very tired and just not quite with it. When we got home today after all the running around we did, he laid down and promptly went to sleep. He didn't wake up until about 9pm. Tomorrow Jim, Chris and I are going swimming at the state park close to us. Chris is excited about that. For Jims birthday July 3rd, we are going to Georgia for a few days and will celebrate the 4th there also. Chris is very excited about this. There is lots of stuff to see and do and things that Chris will really enjoy. :) Got to keep the boy happy and joyful which is not that hard to do as Chris is so easy going and easy to please. I love my Chris so much! I love my wonderful caring husband so much too for coming up with these great ideas of things to do with Chris.
Monday, June 18, 2012
18 Jun 2012
I'm at my wits end! My back has been out for several days now and it is constantly hurting. I can't bend over or lift anything. I'm on muscle relaxers and they don't really help. I can't be on anything real strong because I have to be on every second with Chris. Today, I had to make calls for Mom, get fed ex to pick up a package for Mom, call to get her lawn mowed in Missouri because the city sent her a letter saying if she didn't get it mowed she would be fined. Shit! There is someone in Missouri that could help if he would but no; I have to deal with everything and I live 8 hrs away. So, I got all of that done and tonight Chris had a BM problem and it was everywhere!!! I mean EVERYWHERE! It was terrible mostly because of my back problems, I can't bend over and bathe him as well as I normally do. I got it done and then I just sat down and cried! I'm overloaded and my Mom doesn't even take a moment to realise this. My older brother doesn't help with anything and I'm trying my best to do it all and it's not working. Mom gets mad if I don't do exactly what she wants when she wants it. Chris is a sweetheart but needs constant care, and I'm not putting enough attention to my marriage. Thank God for an understanding husband but still, I just need alittle help and support sometimes and the very ones who should help me (Mom and older brother) don't. Okay, enough venting for now. Goodnight!
I'm at my wits end! My back has been out for several days now and it is constantly hurting. I can't bend over or lift anything. I'm on muscle relaxers and they don't really help. I can't be on anything real strong because I have to be on every second with Chris. Today, I had to make calls for Mom, get fed ex to pick up a package for Mom, call to get her lawn mowed in Missouri because the city sent her a letter saying if she didn't get it mowed she would be fined. Shit! There is someone in Missouri that could help if he would but no; I have to deal with everything and I live 8 hrs away. So, I got all of that done and tonight Chris had a BM problem and it was everywhere!!! I mean EVERYWHERE! It was terrible mostly because of my back problems, I can't bend over and bathe him as well as I normally do. I got it done and then I just sat down and cried! I'm overloaded and my Mom doesn't even take a moment to realise this. My older brother doesn't help with anything and I'm trying my best to do it all and it's not working. Mom gets mad if I don't do exactly what she wants when she wants it. Chris is a sweetheart but needs constant care, and I'm not putting enough attention to my marriage. Thank God for an understanding husband but still, I just need alittle help and support sometimes and the very ones who should help me (Mom and older brother) don't. Okay, enough venting for now. Goodnight!
Friday, June 15, 2012
15 Jun 2012
My days are getting farther apart posting on my blog. There is just less time to sit down and write. Chris is doing fair. There are some things that he can no longer do. He doesn't have much control of his bladder and bowels now. I know that is very personal and might offend some but it is a fact of life and something I am now having to deal with. He continues to see different people in the house and sometimes he sees someone attacking me. He also is hearing voices now. He told me last night that someone was calling him to go outside with them. Thank God he can't get outside or who knows, he might follow those voices. He also said he heard someone yelling at me and attacking me. He also talks all the time about his sister. I tell him that is me and he says no, the other one. There is and has always been just one sister; me. He has been saying for quite a while that he has two Moms. Sometimes he forgets my husbands name. He forgets other peoples names too. Next week we go see the Neurologist. I will be telling him the latest things that Chris does. I hate the thought of him being on more medicine but we will see what the doctor says. On a good note; still no headaches! The Topamax is working. Day before yesterday we went to Moms and as we're driving along, I notice Chris has his shirt on backwards and his shoes on the wrong feet. We laughed about it; I mean what else can you do? I love my brother!
My days are getting farther apart posting on my blog. There is just less time to sit down and write. Chris is doing fair. There are some things that he can no longer do. He doesn't have much control of his bladder and bowels now. I know that is very personal and might offend some but it is a fact of life and something I am now having to deal with. He continues to see different people in the house and sometimes he sees someone attacking me. He also is hearing voices now. He told me last night that someone was calling him to go outside with them. Thank God he can't get outside or who knows, he might follow those voices. He also said he heard someone yelling at me and attacking me. He also talks all the time about his sister. I tell him that is me and he says no, the other one. There is and has always been just one sister; me. He has been saying for quite a while that he has two Moms. Sometimes he forgets my husbands name. He forgets other peoples names too. Next week we go see the Neurologist. I will be telling him the latest things that Chris does. I hate the thought of him being on more medicine but we will see what the doctor says. On a good note; still no headaches! The Topamax is working. Day before yesterday we went to Moms and as we're driving along, I notice Chris has his shirt on backwards and his shoes on the wrong feet. We laughed about it; I mean what else can you do? I love my brother!
Tuesday, June 5, 2012
5 Jun 2012
Haven't posted for awhile. Things aren't going too bad I guess. The last couple of days Chris has seen people in the house. He first saw a woman in the house moving things around and taking things and he said it scared him and he told her that she needs to get out of the house and she doesn't belong here. Then, he saw a small child running around the house and moving things around. Lastly, (and this is the one that he keeps seeing) is a white haired ghost that gets on the treadmill and sits on the big exercise ball. This vision makes him laugh and he told me that the ghost was so funny and he was clapping his hands cheering the ghost on. Very strange. Chris sees some of the weirdest things. It's amazing and alittle scary how his mind works. I'm also torn on how to react to this. I tell him that no one else is in the house because I want to reassure him that there is no stranger here and that he is safe. On the other hand, I don't want to upset him by correcting him and telling him its just his brain. I ended up telling him that there wasn't anyone else here and it was just his imagination. This wasn't the right answer because he frowned at me and said that he DID see them and he was not making it up. So the next time it happened, I just laughed it off and tried to change the subject. He brought the conversation right back to the people he saw. Infact, he talked about it all day. When Jim got home from work, he told Jim. When he talked to Mom on the phone, he told her. *SIGH* Sometimes, I just don't know what to do. I love Chris so much. Why does he have to go through this? I try to remain faithful but sometimes I can't help but question why?!! It's just so unfair. Chris is such a good person and I really have trouble understanding why he has to deal with this terrible disease. So far today has been good. Chris has watched I Love Lucy and Andy Griffith and is resting right now. Better go see what we are having for lunch. I love my brother!
Haven't posted for awhile. Things aren't going too bad I guess. The last couple of days Chris has seen people in the house. He first saw a woman in the house moving things around and taking things and he said it scared him and he told her that she needs to get out of the house and she doesn't belong here. Then, he saw a small child running around the house and moving things around. Lastly, (and this is the one that he keeps seeing) is a white haired ghost that gets on the treadmill and sits on the big exercise ball. This vision makes him laugh and he told me that the ghost was so funny and he was clapping his hands cheering the ghost on. Very strange. Chris sees some of the weirdest things. It's amazing and alittle scary how his mind works. I'm also torn on how to react to this. I tell him that no one else is in the house because I want to reassure him that there is no stranger here and that he is safe. On the other hand, I don't want to upset him by correcting him and telling him its just his brain. I ended up telling him that there wasn't anyone else here and it was just his imagination. This wasn't the right answer because he frowned at me and said that he DID see them and he was not making it up. So the next time it happened, I just laughed it off and tried to change the subject. He brought the conversation right back to the people he saw. Infact, he talked about it all day. When Jim got home from work, he told Jim. When he talked to Mom on the phone, he told her. *SIGH* Sometimes, I just don't know what to do. I love Chris so much. Why does he have to go through this? I try to remain faithful but sometimes I can't help but question why?!! It's just so unfair. Chris is such a good person and I really have trouble understanding why he has to deal with this terrible disease. So far today has been good. Chris has watched I Love Lucy and Andy Griffith and is resting right now. Better go see what we are having for lunch. I love my brother!
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