Last Monday as a family we carved pumpkins for family night, I let the kids pick out their own pumpkin and I let them carve them however they wanted they loved it, Jaren wanted to carve one too so the kids finished their's and then they each took turns and helped Jaren carve his. I was sitting on the couch taking some pictures of them helping and Braxton came up to me and asked me a question that I didn't know what to say, he said "mom, since dad likes holidays so much and he likes when the family does things together on holidays, does that mean he is going to die on my birthday?" he then had huge tears about ready to fall but he kept it together and I told him, "no he will not die on your birthday we don't know when he will die but it WILL NOT be on your birthday" I think he has it in his mind because his birthday is April 8 and his next birthday is on Easter Sunday. I was kind of caught off guard and I really didn't know how to respond to him but he seemed to be ok with the answer that I gave him. He will be turning 8 and so he thinks that Jaren won't be able to baptize him so I have talked to him and told him that our Bishop has assured me that if someone has to get in the water with him to hold him up he WILL be able to baptize him.
Jaren started swallow therapy and it seems to be helping somewhat, he has exercises that he has to do three times a day to help build up his tongue muscles. They told me that they would like him to NOT use a straw because when he drinks with a straw it starts to go down the wrong tube, but it does come back up before he swallows it all so they said that was good, but they are worried about the aspiration pnuemonia, they have him on a diet of soft moist foods they say that will help him swallow the food easier. He has a nerve conductive test on the 10th of November to find out how much damage all of the pain is doing to his muscles and nerves I didn't know if I wanted to put him through it but I think it will be good to have a baseline.
I hope everyone has a Happy Halloween!!
Sunday, October 30, 2011
Wednesday, October 19, 2011
Define Luxury
I am sure that there are many definitions of luxury, but my definition of luxury is probably a lot different than most, I would define luxury as going to bed at night and not having to worry if your spouse will wake up in the morning, taking a shower without ANY interuptions, sitting down for 5 minutes and not have to think about what I have to do next, or what will happen next, when is it my turn to enjoy things, I feel like I give up so much to provide for my family when do I get a minute to refuel so that I can keep going? I know this sounds wierd but to be honest I enjoy going to the doctor or dentist for myself because it gives me at least 30 minutes to be ALONE my doctor laughs at me when I come in by myself and he asks me where everyone is and I tell him at school or at home I am enjoying my break!!
This week I haven't had any dr. appts for myself but Jaren has had plenty, we had a swallow study done last Thursday and it was the coolest thing to watch, but they did notice some problems with his swallowing so we start swallow therapy on Friday to see if things will improve, they also told us to start thinking about a feeding tube, I got a little scared at first but then I thought about how much easier it would be to give him his medications. He also had a evaluation for a wheelchair and to be honest the lady freaked me out a little, she told me I needed to make all of these changes to my house and that I needed to take some of my seats out of my car, I can't make changes to the house it doesn't belong to me, plus how will I pay for it? she is trying to get him a motorized wheelchair but I think that would be more work for me, I would be just fine with a manual one I called his doctor to have the prescription changed to a manual one because I can't make all those changes, if I took seats out of my car I wouldn't have anywhere to put my kids. I feel like he really needs a wheelchair because he can hardly walk sometimes because the pain is so bad. I don't know what to do for the pain anymore, I am having a hard time watching him go through so much pain. We are working on getting a bed moved to a room upstairs so that he doesn't have to climb up or down stairs, Ashlyn is giving up her room so that he can have a room and I am staying downstairs in the master bedroom for now because I am being selfish and I want to be able to sleep for a couple nights without having to wake up at his every move, if the pain does get so he can handle it I hope he will be able to come back down but if not I will eventually move up there with him even though I like my room.
This week I haven't had any dr. appts for myself but Jaren has had plenty, we had a swallow study done last Thursday and it was the coolest thing to watch, but they did notice some problems with his swallowing so we start swallow therapy on Friday to see if things will improve, they also told us to start thinking about a feeding tube, I got a little scared at first but then I thought about how much easier it would be to give him his medications. He also had a evaluation for a wheelchair and to be honest the lady freaked me out a little, she told me I needed to make all of these changes to my house and that I needed to take some of my seats out of my car, I can't make changes to the house it doesn't belong to me, plus how will I pay for it? she is trying to get him a motorized wheelchair but I think that would be more work for me, I would be just fine with a manual one I called his doctor to have the prescription changed to a manual one because I can't make all those changes, if I took seats out of my car I wouldn't have anywhere to put my kids. I feel like he really needs a wheelchair because he can hardly walk sometimes because the pain is so bad. I don't know what to do for the pain anymore, I am having a hard time watching him go through so much pain. We are working on getting a bed moved to a room upstairs so that he doesn't have to climb up or down stairs, Ashlyn is giving up her room so that he can have a room and I am staying downstairs in the master bedroom for now because I am being selfish and I want to be able to sleep for a couple nights without having to wake up at his every move, if the pain does get so he can handle it I hope he will be able to come back down but if not I will eventually move up there with him even though I like my room.
Thursday, October 6, 2011
Don't try this at home!!
Jaren has been in a LOT of pain this week he has had a hard time even getting out of bed. I took him into the Neurologist this week and the doctor wants me to give him Aleve for 10 days until the gabapentin levels are back up. I have to admit I am terrible with giving him meds when I get home from work in the afternoon so they think his levels are dropping I am not sure if that is what the deal is though Lortab isn't even touching the pain and the Aleve isn't doing anything either, he can't even walk. It is hard to see him in so much pain. I have been so busy this week with appts and parent teacher conference and work that I have only had time to be home long enough to give him some pain meds.
The neurologist appt was on Tuesday at noon so I had to leave work a little early that day and when I got home I could smell something horrible so I asked him what the smell was and he said he had cooked an egg I said oh why does it smell so bad? he said the egg kind of blew up. I walked into the kitchen and about died, he thought he could boil eggs in the microwave, well needless to say they blew up and blew the microwave door open and there was egg and egg shells EVERYWHERE. He felt so bad, I just had to chuckle because I couldn't get mad at him, I told him he can no longer use any appliance while I am not home and he said ok I will try not too, I asked him if he was going to remember what happened and to never boil eggs in the microwave? and he said "probably not." at least he is honest!! When I finally had a minute to clean up the mess I had him help me so that he would realize what a huge mess it was. We went to use the microwave and it turns on but does not cook anything so we have to switch it out. So my advice to anyone reading this is: Don't try boiling eggs in the microwave, unless you want to clean up a mess, and not have a microwave anymore.
The neurologist appt was on Tuesday at noon so I had to leave work a little early that day and when I got home I could smell something horrible so I asked him what the smell was and he said he had cooked an egg I said oh why does it smell so bad? he said the egg kind of blew up. I walked into the kitchen and about died, he thought he could boil eggs in the microwave, well needless to say they blew up and blew the microwave door open and there was egg and egg shells EVERYWHERE. He felt so bad, I just had to chuckle because I couldn't get mad at him, I told him he can no longer use any appliance while I am not home and he said ok I will try not too, I asked him if he was going to remember what happened and to never boil eggs in the microwave? and he said "probably not." at least he is honest!! When I finally had a minute to clean up the mess I had him help me so that he would realize what a huge mess it was. We went to use the microwave and it turns on but does not cook anything so we have to switch it out. So my advice to anyone reading this is: Don't try boiling eggs in the microwave, unless you want to clean up a mess, and not have a microwave anymore.
Sunday, October 2, 2011
I am still here......physically
My post was kind of a downer last time but that is how I was feeling at the time, it is getting better and I am not as anxious as I was. We had a dr. appt every single day this week for one of us some days we had 2 appts, thank goodness for the other mom that lives at our house RaKelle some of the appts they had to fit us in and they were right when the younger kids were getting out of school so RaKelle went to the school and picked them up for me and brought them home and got them started on homework and chores it was so nice. I hate to rely on her so much but I can't do it all by myself even if I try, it has taken me a long time to figure that out, I can't be a mom, a dad, a caregiver, a spouse, a taxi, a housekeeper, a pharmacy, a planner, and everything else I have to do, so having a child old enough to help me out has been amazing, pretty soon she will be able to drive and she has already told me that she can't wait so that she can take the kids to school for me so I don't have to, how sweet!!
We didn't have internet for a week or more because I had more important bills to pay before I paid the internet bill, I can't tell you how nice it was to not have internet I almost didn't want to have it back on but I need it for different things, that is how I communicate through email with some doctors and some other things that have to do with MLD so I had to get it back on, it also comes in handy now that RaKelle is in middle school I can look up her grades and know what she is missing and help her catch up if she is behind.
Jaren has been in a LOT of pain this past week or two to the point where he is in tears so I called the neurologist to see if they could perscribe him some pain killers and the Dr wants to see him so we are going to see her on Tuesday. I also started to see a new counselor this past weekend I had an appt with him on Saturday wierd day to have an appt, but he was excellent what an answer to my prayers for right now, he told me that he was into neuropsych and he knows how to read MRI's and so he asked if I could bring them in and he would explain what is going on in his brain and why he acts the way he does. He is extremely ornery and he has been yelling at the kids alot but I am sure it sucks to be in so much pain. I took him back to the daycare a couple days a week and they were excited to see him again. One lady told me that I need to keep a hold of him because he is a hunk, I thought it was funny until I thought about what that would do to my kids if he started talking about a girlfriend at the daycare I never know what he will say about anything I know that it is not anything to be worried about but do the kids know? plus who knows it might wear on me too, it's hard to leave him at a place like a daycare and know that he is being taken care of but not knowing what stories he is telling them. I know he comes home with some interesting stories. I love being able to go to work and not have to worry about what he is doing at home and if he is wandering the streets, but it is also hard to drop your spouse of to be watched for the day. My ward has been really helpful with being willing to stop in and make sure Jaren is safe and that if he needs anything they are there to help him.
We didn't have internet for a week or more because I had more important bills to pay before I paid the internet bill, I can't tell you how nice it was to not have internet I almost didn't want to have it back on but I need it for different things, that is how I communicate through email with some doctors and some other things that have to do with MLD so I had to get it back on, it also comes in handy now that RaKelle is in middle school I can look up her grades and know what she is missing and help her catch up if she is behind.
Jaren has been in a LOT of pain this past week or two to the point where he is in tears so I called the neurologist to see if they could perscribe him some pain killers and the Dr wants to see him so we are going to see her on Tuesday. I also started to see a new counselor this past weekend I had an appt with him on Saturday wierd day to have an appt, but he was excellent what an answer to my prayers for right now, he told me that he was into neuropsych and he knows how to read MRI's and so he asked if I could bring them in and he would explain what is going on in his brain and why he acts the way he does. He is extremely ornery and he has been yelling at the kids alot but I am sure it sucks to be in so much pain. I took him back to the daycare a couple days a week and they were excited to see him again. One lady told me that I need to keep a hold of him because he is a hunk, I thought it was funny until I thought about what that would do to my kids if he started talking about a girlfriend at the daycare I never know what he will say about anything I know that it is not anything to be worried about but do the kids know? plus who knows it might wear on me too, it's hard to leave him at a place like a daycare and know that he is being taken care of but not knowing what stories he is telling them. I know he comes home with some interesting stories. I love being able to go to work and not have to worry about what he is doing at home and if he is wandering the streets, but it is also hard to drop your spouse of to be watched for the day. My ward has been really helpful with being willing to stop in and make sure Jaren is safe and that if he needs anything they are there to help him.
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