Christmas is over and now the new year will begin. I can't complain about how 2012 was there were a few bumps and some mountains but we were able to climb them and continue to move on. I have to admit though I am so tired and worn out, hopefully the mountains won't be as high to climb in 2013 but I have a feeling they might be a little bigger than 2012. As the MLD progresses it gets harder and harder to take care of him especially if he keeps getting pnuemonia and he doesn't get any symptoms. I took him to the Diabetic Doctor today and his A1C was 8.3 which is really, really, good for him. I thought for sure it would have been high because of the hospital visit for DKA at the end of November, and the holidays. The doctor was even amazed at how good it was. If I could just get him to leave his blood sugar machine where I know where it is it would be nice, he can't seem to keep track of it and it drives me crazy.
I also went in for a physical yesterday, I go every year it wouldn't be fair for my kids to lose both parents so I try my hardest to keep myself as healthy as possible, I did find out some problems I have though and if I take it serious and do my best I should be able to be better. I knew the stress would of being a caregiver would catch up to me sometime. I just have to remember to take care of myself even if it's just an ice cream with a friend or a brisk walk around the block or something to get my mind on other things beside Jaren's care.
I am so sick of cleaning up puke the stomach flu hit us this year and it has NOT been any fun. luckily it skipped over me but the rest of them got it and of course they all got it seperately so I cleaned up puke for a week straight. We haven't had the stomach bug for at least 4 years so the kids were not really sure what to do when they felt like throwing up. I have never done so much laundry in the middle of the night than I did that week. Thank goodness it was gone by Christmas, and I hope it doesn't come back.
This new year is going to be really hard the amazing person that lives by us that takes Jaren to the Temple is going on a mission to Germany and they are the best people in the whole world, I will miss them like crazy. Sister Buchanan was the relief society president and she will be missed by all but I don't know what I am going to do with our her, she will probably never know how much she has done for me and my family, and her husband is one of the best people as well, without fail he would come and check on Jaren every week. They have the most amazing children I had the opportunity of getting to know their daughter before she moved to Hungary with her family and she was also amazing, she helped me in so many ways I can't even tell you. She would come to my house and visit with me and fold laundry, or clean my kitchen. I love this family and will be very sad when they leave, thank goodness for technology so I can keep in touch with them through the computer. Hopefully the next few years will go by quickly and Jaren will still be here when they come home. Jaren has grown to really, really like Bro Buchanan and he is sad that he is leaving, I don't know if he really understands that he won't be able to see him every week like he has been. I guess we will find out when I go back to work and he doesn't come to visit with Jaren during the week.
Friday, December 28, 2012
Sunday, December 9, 2012
It has been awhile
I haven't been able to keep up with the blog lately our computer stopped working and so we haven't had a computer for about 3 months. We finally got a different one and so I have a lot to catch up on. It is very hard to not have a computer when everything they do now days is on the computer, the kids have homework on the computer, I had to tell their teachers to please be patient with them and to send paper copies home with them because we didn't have a computer.
School has been in for awhile and the kids are doing really well. We had a fun halloween and then Thanksgiving came and that was NOT a good week at our house. The Sunday before Thanksgiving Ashlyn had the stomach flu, then Braxton came home from school on Tuesday and said that his head hurt and he had a fever that is what happens when he gets strep throat so I took him into Kidscare and the rapid strep came back negative, there isn't really much they could do with a negative test, Wednesday he still wasn't feeling the best but his fever had broke and he was not complaining of a headache like he was on Tuesday. Thursday while we were getting ready to go to Thanksgiving dinner with my family the doctor from Kidscare called and said that the culture came back positive, so he had to start on an antibiotic and couldn't go to Thanksgiving dinner, he was crushed. He got to eat a happy meal from McDonalds for his Thanksgiving, and he got to rent a WII game from redbox. We were on the mend and then Jaren woke up Sunday morning throwing up and couldn't stop. I text our home teacher and he came over and 2 neighbors came and helped give him a blessing, usually I can get it under control with insulin and powerade zero, but he couldn't even get out of the bathroom without puking. I decided it was time to take him to the ER and at least get fluids in him. His sugars were at 395 when I got him to the ER so they had come down a lot. He was so dehydrated it took the tech about an hour to get his IV in. The doctor came in and talked to us about his symptoms I told the dr it was probably DKA (diabetic ketoacidosis) and he agreed. But I also told him that a few months ago I couldn't get his sugars below 400 so I took him to the doctor and there was fluid in his lungs, he had pnuemonia and I had no idea thank goodness for the knowledge I have that when blood sugars are high it means there is an infection somewhere. He did a round of antibiotics and he felt much better. So the doctor at the ER listened to his lungs and he couldn't hear any fluid but he felt it would be best to do a chest x-ray thank goodness he did he had fluid in his lungs AGAIN. They decided to admit him but they couldn't decide whether to admit him to ICU or to a regular floor, they did more blood work and said that they had been able to get the DKA under enough control that they could admit him to a regular floor, the admitting doctor on the regular floor did somemore testing with urine, he said that the x-ray showed pnuemonia but they could do some different tests to see what strain it was. The Urine culture came back on Monday with the diagnosis of Legionella Disease which is caused through water sources, We can't figure out where he got it from but he was so dealthy ill it was scary. I have never seen him so ill and unresponsive as he was that morning it was horrible.
So now we are picking up the pieces of our not so good week and I took them into see my counselor with me because I was having a hard time dealing with everything and when Jaren didn't come home from the hospital until Tuesday they kept saying how weird it was to not have dad home, I knew it was going to be a tough week. When we were talking with my counselor RaKelle mentioned to him that our bunny died a couple weeks before this all happened and she said "it hurt so bad when her bunny died, she can't imagine how much it will hurt when her dad dies" as a parent what do you say to that I am just glad I was not alone when she talked about it. I made her an appointment to meet with her counselor this week so hopefully she can talk about things and know that it is okay to hurt when something like that happens. I try my hardest to keep my kids level headed about things and to know that any time they need to talk they can come to me but sometimes it is awkward to talk to mom about things especiallly dad dying. They are doing a little better now, we are trying to get used to our "new" normal, I don't think Jaren will ever get back to 100% he is going to be tired and weak and not have any energy, it is getting harder for him to walk, he was already getting worn out very easy but this pnuemonia totally wiped him out and I don't think he will get the strength back even the little bit that he had. I guess we will see.
I wouldn't feel good if I didn't thank the amazing people who stepped up and helped me out so much. neighbors who brought dinner in neighbors that came in and cleaned my kitchen and bathroom. My amazing co-workers who brought dinner in for a week so I didn't have to worry about cooking and the many thoughts and prayers received from so many. My awesome family who helped with the kids and my sister who brought them up to the hospital and listened to me when I had medical questions. I am so grateful to have such amazing people in my life that care so much to help out.
School has been in for awhile and the kids are doing really well. We had a fun halloween and then Thanksgiving came and that was NOT a good week at our house. The Sunday before Thanksgiving Ashlyn had the stomach flu, then Braxton came home from school on Tuesday and said that his head hurt and he had a fever that is what happens when he gets strep throat so I took him into Kidscare and the rapid strep came back negative, there isn't really much they could do with a negative test, Wednesday he still wasn't feeling the best but his fever had broke and he was not complaining of a headache like he was on Tuesday. Thursday while we were getting ready to go to Thanksgiving dinner with my family the doctor from Kidscare called and said that the culture came back positive, so he had to start on an antibiotic and couldn't go to Thanksgiving dinner, he was crushed. He got to eat a happy meal from McDonalds for his Thanksgiving, and he got to rent a WII game from redbox. We were on the mend and then Jaren woke up Sunday morning throwing up and couldn't stop. I text our home teacher and he came over and 2 neighbors came and helped give him a blessing, usually I can get it under control with insulin and powerade zero, but he couldn't even get out of the bathroom without puking. I decided it was time to take him to the ER and at least get fluids in him. His sugars were at 395 when I got him to the ER so they had come down a lot. He was so dehydrated it took the tech about an hour to get his IV in. The doctor came in and talked to us about his symptoms I told the dr it was probably DKA (diabetic ketoacidosis) and he agreed. But I also told him that a few months ago I couldn't get his sugars below 400 so I took him to the doctor and there was fluid in his lungs, he had pnuemonia and I had no idea thank goodness for the knowledge I have that when blood sugars are high it means there is an infection somewhere. He did a round of antibiotics and he felt much better. So the doctor at the ER listened to his lungs and he couldn't hear any fluid but he felt it would be best to do a chest x-ray thank goodness he did he had fluid in his lungs AGAIN. They decided to admit him but they couldn't decide whether to admit him to ICU or to a regular floor, they did more blood work and said that they had been able to get the DKA under enough control that they could admit him to a regular floor, the admitting doctor on the regular floor did somemore testing with urine, he said that the x-ray showed pnuemonia but they could do some different tests to see what strain it was. The Urine culture came back on Monday with the diagnosis of Legionella Disease which is caused through water sources, We can't figure out where he got it from but he was so dealthy ill it was scary. I have never seen him so ill and unresponsive as he was that morning it was horrible.
So now we are picking up the pieces of our not so good week and I took them into see my counselor with me because I was having a hard time dealing with everything and when Jaren didn't come home from the hospital until Tuesday they kept saying how weird it was to not have dad home, I knew it was going to be a tough week. When we were talking with my counselor RaKelle mentioned to him that our bunny died a couple weeks before this all happened and she said "it hurt so bad when her bunny died, she can't imagine how much it will hurt when her dad dies" as a parent what do you say to that I am just glad I was not alone when she talked about it. I made her an appointment to meet with her counselor this week so hopefully she can talk about things and know that it is okay to hurt when something like that happens. I try my hardest to keep my kids level headed about things and to know that any time they need to talk they can come to me but sometimes it is awkward to talk to mom about things especiallly dad dying. They are doing a little better now, we are trying to get used to our "new" normal, I don't think Jaren will ever get back to 100% he is going to be tired and weak and not have any energy, it is getting harder for him to walk, he was already getting worn out very easy but this pnuemonia totally wiped him out and I don't think he will get the strength back even the little bit that he had. I guess we will see.
I wouldn't feel good if I didn't thank the amazing people who stepped up and helped me out so much. neighbors who brought dinner in neighbors that came in and cleaned my kitchen and bathroom. My amazing co-workers who brought dinner in for a week so I didn't have to worry about cooking and the many thoughts and prayers received from so many. My awesome family who helped with the kids and my sister who brought them up to the hospital and listened to me when I had medical questions. I am so grateful to have such amazing people in my life that care so much to help out.
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