I took Jaren in for a follow-up appointment today with Dr. Richards and it went pretty well, he is not losing weight so he isn't worried about him not eating at this point. He did say though that he is worried about him being home while I am at work, he told me that we need to get a dog even if it is just for a companion for Jaren so he doesn't get lonely, which is not a bad idea but I don't know if I want to care for a dog at the Gordon house we can barely keep track of the humans here, the kids were so excited they couldn't stand it. He also told me that he would write a perscription for it, I guess he really wants us to have a dog, so now we have to get it approved with our landlord and then start looking, where do I find a dog that is well behaved and will keep Jaren company while I am at work, they have dogs that detect low and high blood sugar which would be perfect for him but that could take many months to get approved with everything that has to be approved. I am just worried about what it takes to care for a dog.
School starts on Monday and I am so ready for it to start, the fighting is getting annoying. RaKelle will be in middle school (I can't believe how fast they grow) and she actually went to school yesterday for a few hours they allow 7th graders to go before school starts and go to all of their classes and they have an assembly and prizes before the 8th and 9th graders come, she has been so ornery I am ready to rip my hair out, she is sassy to me about everything and she yells at anyone that is making her upset, next week should be really fun when she is overwhelmed with school starting and exhausted, I CAN'T WAIT (not)! I did go talk with her counselor at school to let her know of our situation and she was very understanding and told me that she would call her in to her office and talk with her and let her know that if she ever just needs to talk even if it is in the middle of a class her door is always open.
Ashlyn will be in the 5th grade and she is very excited. We went and met with her counselor last week and came up with some plans that will allow her to feel comfortable going to school and not worrying about her dad at home, he told me that it would be appropriate for her to be able to call home and check on him when she can't stop thinking about things but he also told her that if she abused that privilege and called to much she would have to lose it. I think this will help her not be so crabby about going to school and I won't have to fight with her anymore to go. She has Mr. Patrick this year and she is really excited because he was her teachers friend from last year. I hope she will do well this year and she will enjoy school.
Braxton starts 2nd grade, I can't believe he is my baby, his teacher is Mrs. Selk and she sent him a postcard the other day and he carried it around with him for the rest of the day, he loved it. I hope that he will be able to go to school and not worry to much about Jaren, he hasn't seemed to have the problems with going to school like Ashlyn has. Before I know it he will be going away to college!! I am not ready for my baby to be all grown up.
Friday, August 26, 2011
Tuesday, August 23, 2011
She made it
RaKelle made it the ENTIRE week at Brighton Girls camp, she was able to call home every night and I think that helped her a lot. Tuesday when she called she was in tears and it took all I had to not say I will come get you right now, but she made it! she was so proud of herself and I was too. She has informed me that she is not going next year but we will see what the year brings she might change her mind. It helped Jaren that she was able to call home he about drove me nuts, he missed her horribly and wanted to go get her everyday I had to stand next to him while he talked to her on the phone so he didn't say anything about her coming home, by Friday he was going crazy he had been really ornery the whole week because he missed her, he was extra clingy to me because he didn't know what else to do. The first thing he told her when she came home was you can never leave me again its to hard, by Wednesday I was ready to hurt him because he kept asking when she would be home and he wasn't very nice. I didn't even think about how hard it was going to be for him I knew it was going to be hard on her and the other two didn't like her being gone either but that didn't stop them from fighting they fought the whole week, I didn't get to sleep through a night because they were missing her they would cry for no reason and they didn't like her being gone. When she got home we went to the fabric store and she was able to pick out some fabric for a quilt that sis. Buchanan was making for her because she made it the whole week she chose butterflies because that is the symbol of MLD and she wants everything to be butterflies lately we were invited to the Buchanans house for family home evening last night and we were able to tie the quilt with her and she finished it while we were there so she got to sleep with a new quilt last night. Jaren was also having a hard time because she was camping and he loves camping, and before she left we found out that some family went camping and didn't include us and his feelings were hurt and he was very upset, that is one thing that he can still do is go camping he enjoys the mountains and fishing not so much hiking anymore but he can still do some things.
Jaren is still not eating he is eating better but not what he usually does, I am thinking it is just part of the disease and that it will never go away which will help out with the food budget!! He seems to be satisfied when he does eat so I guess I can't really worry to much. He is very nauseas it seems all the time and he has had some severe migraines lately, I have medication that helps with the nausea but it makes him so sleepy that all he will do is sleep if the nausea is really bad I do give him some I would rather have him sleep then be throwing up all over the place. He still wants to be playing nintendo ALL day long which most of the time is ok but he won't do his chores and then he gets ornery and yells at the kids and he can't stand when things are out of place I always have to say don't worry about it just leave it alone we will take care of it when we are finished with whatever we are doing. He is very critical of the kids when they do chores he tells them all of the things they didn't do instead of thanking them for actually doing the chore, I have to remind him that at least they are doing something and they will get to the other things when they can, I guess they just don't do it fast enough for him or his way. He is very hard to live with sometimes, he likes to ruin a lot of the fun he doesn't like to do anything and he gets irritated when we like to do it without him, sometimes I just make him come he doesn't always like it and then sometimes I wish I wouldn't have brought him but I don't have a choice all the time to allow him to stay home by himself because he physically and mentally can't do it.
The kids start school on August 29 and I am excited maybe the fighting will slow down a little, I also start working on that day and I am hoping that Jaren will adjust well to the new schedule AGAIN. He just doesn't understand what keeps happening I think it is frustrating to him but now with school back in the schedule should stay the same. I am probably going to have to take him to the daycare a couple times a week so I don't have to worry about what he is doing or not doing. I am so grateful for the job that I have that I am able to check on him if I need to and that they are so understanding of my situation and I am so blessed to have the boss that I have she is amazing. I am grateful for the wonderful people that I work with that care about me so much that they ask questions and try to help wherever they can. I don't know where we will be from one day to the next everything is so unpredictable but I hope and pray that he will stay healthy enough to stay at home with us as long as I can care for him and he doesn't hurt any of us. I have been very blessed with amazing friends that help me through some tough times. I am thankful for the support that my family gives and for the opportunities they include us in on and their willingness to help out.
Jaren is still not eating he is eating better but not what he usually does, I am thinking it is just part of the disease and that it will never go away which will help out with the food budget!! He seems to be satisfied when he does eat so I guess I can't really worry to much. He is very nauseas it seems all the time and he has had some severe migraines lately, I have medication that helps with the nausea but it makes him so sleepy that all he will do is sleep if the nausea is really bad I do give him some I would rather have him sleep then be throwing up all over the place. He still wants to be playing nintendo ALL day long which most of the time is ok but he won't do his chores and then he gets ornery and yells at the kids and he can't stand when things are out of place I always have to say don't worry about it just leave it alone we will take care of it when we are finished with whatever we are doing. He is very critical of the kids when they do chores he tells them all of the things they didn't do instead of thanking them for actually doing the chore, I have to remind him that at least they are doing something and they will get to the other things when they can, I guess they just don't do it fast enough for him or his way. He is very hard to live with sometimes, he likes to ruin a lot of the fun he doesn't like to do anything and he gets irritated when we like to do it without him, sometimes I just make him come he doesn't always like it and then sometimes I wish I wouldn't have brought him but I don't have a choice all the time to allow him to stay home by himself because he physically and mentally can't do it.
The kids start school on August 29 and I am excited maybe the fighting will slow down a little, I also start working on that day and I am hoping that Jaren will adjust well to the new schedule AGAIN. He just doesn't understand what keeps happening I think it is frustrating to him but now with school back in the schedule should stay the same. I am probably going to have to take him to the daycare a couple times a week so I don't have to worry about what he is doing or not doing. I am so grateful for the job that I have that I am able to check on him if I need to and that they are so understanding of my situation and I am so blessed to have the boss that I have she is amazing. I am grateful for the wonderful people that I work with that care about me so much that they ask questions and try to help wherever they can. I don't know where we will be from one day to the next everything is so unpredictable but I hope and pray that he will stay healthy enough to stay at home with us as long as I can care for him and he doesn't hurt any of us. I have been very blessed with amazing friends that help me through some tough times. I am thankful for the support that my family gives and for the opportunities they include us in on and their willingness to help out.
Thursday, August 11, 2011
getting RaKelle ready for camp
This week has been crazy. I am trying to get RaKelle ready for beehive camp and I am having a hard time she wants to go so bad she saved her own money to go, BUT she can't have sleepovers, we have tried so many times and she calls in the middle of the night in tears to come and get her, she has been so excited but Jaren hasn't been doing very well the last few weeks. I talked with the bishop and the young womens president and the bishop are trying to get it approved to allow RaKelle to call home from camp once a day to make sure that her dad is not dying while she is at camp and that we are doing fine and she needs to enjoy herself. I can't imagine what it must feel like for the kids to go somewhere even if it is familiar and not know if there dad will be here when they get back, that has got to be the worst feeling in the world. I try to understand what they are feeling, but this one is a hard one.
I went back to work for a few weeks, and now I am off again for 2 weeks then I go back again. He is just getting used to the new schedule with the kids being gone while I am at work and then I am off again so I hope he can adjust again when I start working again, the next time will be more permanent though so he should be ok. I am getting worried, he is not eating, which makes his blood sugars bottom out and he is also struggling with using the bathroom, we went with some friends and she told me that Jaren looked horrible and that I should probably take him to see a doctor. I took him in and they can't figure out why he isn't urinating he is still drinking the same, and they don't know why he won't eat. He says he just isn't hungry. The doctor treated him for a prostate infection and put him on prilosec for acid reflux to see if that helps, so the medicine count goes up for awhile until they figure out what else to do. I have to take him back in 2 weeks for a follow up to see if he is doing any better. He seems to be really down lately as well I don't know what to do for him though because he can't tell me what is wrong and why he is so down and quiet.
My friend and I were in need of a big break so we thought about what we could do with our spouses so that we could get some time to visit alone, so last Saturday we took Jaren and Noel to the movie got them tickets and our girls wanted to go to a movie so they walked their dads into their movie got them in there seats and went to their movie and my friend and I went to dinner ALL ALONE, it was the nicest night we have had in a long, long time. Her brother is so good about being so willing to keep and eye on the two of them but it is hard to keep track of them together, they really like being together and they have a lot of fun together but sometimes WE need a break from both of them and we like to do things together so that we can talk about the struggles we are going through. I am so grateful that Amy and I were able to meet and get to know each other it is so nice to have a shoulder to cry on that knows exactly how I am feeling, we have a lot of fun together.
I went back to work for a few weeks, and now I am off again for 2 weeks then I go back again. He is just getting used to the new schedule with the kids being gone while I am at work and then I am off again so I hope he can adjust again when I start working again, the next time will be more permanent though so he should be ok. I am getting worried, he is not eating, which makes his blood sugars bottom out and he is also struggling with using the bathroom, we went with some friends and she told me that Jaren looked horrible and that I should probably take him to see a doctor. I took him in and they can't figure out why he isn't urinating he is still drinking the same, and they don't know why he won't eat. He says he just isn't hungry. The doctor treated him for a prostate infection and put him on prilosec for acid reflux to see if that helps, so the medicine count goes up for awhile until they figure out what else to do. I have to take him back in 2 weeks for a follow up to see if he is doing any better. He seems to be really down lately as well I don't know what to do for him though because he can't tell me what is wrong and why he is so down and quiet.
My friend and I were in need of a big break so we thought about what we could do with our spouses so that we could get some time to visit alone, so last Saturday we took Jaren and Noel to the movie got them tickets and our girls wanted to go to a movie so they walked their dads into their movie got them in there seats and went to their movie and my friend and I went to dinner ALL ALONE, it was the nicest night we have had in a long, long time. Her brother is so good about being so willing to keep and eye on the two of them but it is hard to keep track of them together, they really like being together and they have a lot of fun together but sometimes WE need a break from both of them and we like to do things together so that we can talk about the struggles we are going through. I am so grateful that Amy and I were able to meet and get to know each other it is so nice to have a shoulder to cry on that knows exactly how I am feeling, we have a lot of fun together.
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